Apparently, hundreds of parents are simply crazy. Yes, folks, studies have shown that regardless of parental confidence in their children's "allergies"; medical facts can't prove that the kids do, medically speaking, react.
Poor children are being deprived of "life giving" nutrients because the parents are hypochondriacs. At least, according to some specific guidelines that don't appear to take into consideration the potential for outgrown allergies, or exageration of symptoms to invoke cooperation, or the possibility that the reaction is delayed or even needs time to build up because maybe, just maybe, these parents have done a decent job of avoiding exposure and thus reaction.
Now, I don't know about you, but I find it absurd that its even a question of who's right, dr's or parents. Do schools need to accommodate parental requests regarding what children are told to ingest? Do parents need to relinquish control since they are required to send their children to school anyways?
I think that we've reached a point where the schools are providing too many throw away foods period. The kids don't need it to begin with.
But no, it's the parents who have a problem. How dare we be concerned with kids health! How dare we deny them donuts! How dare we nix nuts! How can we possibly ban pizza?
Many children spend half their waking hours under supervision of their school. Most then skip off to daycare for a few hours before heading home for dinner and bed. Is it really unreasonable that parents are noting symptoms and looking for answers?
Attitudes such as this "Fake food allergies" make parents feel even more out of control. Because their valid concerns are undermined by those who side with statistics. Statistically, I'm not going to drop dead when I hand out popcorn at the spring fling. That doesn't mean that the nasty rash and intestinal discomfort I later experience (or even begin experiencing after a few minutes) isn't going to irritate the heck out of me. And my kids?
I want anyone in a position of authority over them to take this whole "certain foods cause unpleasant symptoms" thing seriously. That may mean labeling a "little intolerance" as an allergy. At least until the medical community gets their act together and comes up with an appropriate label to be used for those who need food restrictions but are not anaphylactic.
A hundred years ago, food allergies may not have been prolific. But, foods were easier to avoid. They weren't nearly as invasive. They were often "whole". Easy to identify. I don't know about you, but common sense tells me that if every time I ate cornbread I threw it up and spent the next several days in a good deal of discomfort, I wouldn't have even bothered tracking down a doctor and trading a few chickens for his diagnosis of "I wonder if it's something known as an allergy..." I'd have followed my instincts and stopped eating corn bread. And I'd probably have noticed in a hurry that Grandma's cornstarch thickened pudding bothered me too.
A hundred years ago, I'd have had a few other options. Not the ones I have now, perhaps. Tapioca, rice, buckwheat, quinoa, amaranth weren't well known and variety wasn't necessarily the spice of life. But, seriously...salad would have been safe. Potatoes, apples, water, milk...
Food intolerances need a label now because our society has changed. Parental wishes need to be followed because we are the parents. We are the ones who put the kids to bed at night and wake them up in the morning. We brought them into this world, and we have every right to not only keep them in it but keep them happy to be here. Some would call it an obligation.
I don't care if someone out there thinks that food allergies are some freudian fraud, or if they are simply another Darwinian method to thin the herd. I don't care how many people are actually at risk for anaphylaxis. I want it acknowledged that it is a valid threat.
I want it acknowledged that food can be fatal. I want it acknowledged that food is just food, it isn't the end of the world if you can't feed me or my kids. It isn't the center of all celebration. No one is suffering for lack of sugar, or need for pizza, or wasting away for the want of a PB&J. Food restrictions make life hard. And "studies" like this, that indicate people choosing to improve their or their children's health through dietary intervention are actually in need of a psychiatrist simply make life harder for those who have valid reasons for adapting their diet.
Even if we don't have a valid reason, if it makes us happy to avoid something like the plague who is it hurting to accept that choice?
Saturday, June 07, 2008
Wednesday, April 30, 2008
Corn. It can cost a Kidney.
The true risks of a corn allergy hit home last week.
I awoke with the tell tale signs of a UTI. Thankfully, I recognized them and decided to get seen and tested ASAP. Urinalysis showed blood and the early stages of an infection. I was written a script, and sent on my way.
The pharmacist showed me the ingredients for the antibiotic of choice. Most of them were corn derived. The company that manufacturers is was closed for the evening. The compounding pharmacist said "We'll get back to you."
The next day, the antibiotic manufacturer didn't want to talk to me, because I'm not a doctor. No big deal, I was almost feeling better. I chugged water like crazy, rested, and waited for the compounding pharmacist.
The third day I did not feel well. The doctor called to see how I was doing. I told them, and they wanted to see me. They asked how long I'd been taking the antibiotic.
"You don't even have it yet?"
There was a sense of incredulity. Here is a simple to treat infection. One of the few that demands immediate treatment with an appropriate antibiotic. One that can be serious if left untreated. One that we have an appropriate medication for. Widely available. Well known.
And yet I, personally, could not access it.
I talked to the doctor for a long time. My options were to start the antibiotic, and ignore the corn. This would cause symptoms. The symptoms probably would not be life threatening. But, they would interfere with knowledge of whether or not the infection was responding to treatment. The medical community would not know if I was reacting to the antibiotic or the corn. I'd be dealing with 2 forms of physical stress. And it would lengthen my recovery time (the last I add in from experience. Corn causes intestinal inflammation, and I have digestive issues for weeks after accidentally ingesting it)
I could also be hospitalized for an IV infusion. This would bypass my digestive tract. It would probably avoid causing me much of a reaction, assuming they didn't use a corn based IV solution. (Yeah, I'd be checking each time. I'm sure the nurses would want to go on automatic, and be frustrated that they couldn't) It would cost a fortune. It's overkill for a run of the mill UTI.
I could wait, do nothing and lose a kidney.
We decided to start a different antibiotic, one that didn't have corn but was not specific. It would hopefully do *something* while we waited for the culture to come back with the exact strain of bacteria that had invaded my urinary tract.
By this time, my back hurt. That meant it had entered my kidney. We were frustrated that a "normal" person would have been almost through with their antibiotic course by this time, and relatively symptom free. I was getting worse, and not because I was obstinate or trying to ignore medical advice. I wanted help. They just didn't know how.
The pharmacist could not guarantee the brand, and the capsules could have corn in them though the drug itself, amoxicillin, was not adulterated. So I agreed to open the capsule, and take it in applesauce or another semi-liquid. The taste reminded me of the pink stuff I took when I was a kid, except that it didn't make my stomach clench and wasn't accompanied by a revolting bubblegum aftertaste. For future reference, antibiotics are better masked in carrot soup than applesauce.
The antibiotic worked for a few days. I woke up Monday feeling worse again, and shortly afterward the doctor's office called to say that the bacteria was resistant to amoxicillin. Then I got a hold of the compounding pharmacist, again, who apologized for taking so long and promised to get my Cipro by evening.
2 days on antibiotics, a week of frantic calls and office visits, and the only symptom still bothering me is an intermittent back pain and some nausea, which is common on antibiotics across the board. Kidney involvement is always risky, and permanent damage is a very real possibility.
All this simply because...there's corn in that. There's corn in everything, and no one knows it. Generally, I laugh. It's funny, people hear corn and they can't see the big picture. A little here, a little there. The FAAN calls it hypoallergenic. It's known by a thousand names. It has a myriad of uses, and growing. It took years to learn what I know to stay relatively safe. And yet, when I most need my knowledge, when it's necessary to turn to the medical community and work together for a solution, we're both lost. The pharmacist can't tell me what antibiotics might not have corn in them. The doctor can't find the information she needs to choose the best of a limited amount of pre-made corn free medications. And this time, my needs were simple. What happens next time?
Statistically, few people react to the excipients of drugs. I'm lucky. I'm just a statistic. One in a million. Insignificant. Unique.
But I exist. And I'd like to keep my kidneys, thank you very much.
I awoke with the tell tale signs of a UTI. Thankfully, I recognized them and decided to get seen and tested ASAP. Urinalysis showed blood and the early stages of an infection. I was written a script, and sent on my way.
The pharmacist showed me the ingredients for the antibiotic of choice. Most of them were corn derived. The company that manufacturers is was closed for the evening. The compounding pharmacist said "We'll get back to you."
The next day, the antibiotic manufacturer didn't want to talk to me, because I'm not a doctor. No big deal, I was almost feeling better. I chugged water like crazy, rested, and waited for the compounding pharmacist.
The third day I did not feel well. The doctor called to see how I was doing. I told them, and they wanted to see me. They asked how long I'd been taking the antibiotic.
"You don't even have it yet?"
There was a sense of incredulity. Here is a simple to treat infection. One of the few that demands immediate treatment with an appropriate antibiotic. One that can be serious if left untreated. One that we have an appropriate medication for. Widely available. Well known.
And yet I, personally, could not access it.
I talked to the doctor for a long time. My options were to start the antibiotic, and ignore the corn. This would cause symptoms. The symptoms probably would not be life threatening. But, they would interfere with knowledge of whether or not the infection was responding to treatment. The medical community would not know if I was reacting to the antibiotic or the corn. I'd be dealing with 2 forms of physical stress. And it would lengthen my recovery time (the last I add in from experience. Corn causes intestinal inflammation, and I have digestive issues for weeks after accidentally ingesting it)
I could also be hospitalized for an IV infusion. This would bypass my digestive tract. It would probably avoid causing me much of a reaction, assuming they didn't use a corn based IV solution. (Yeah, I'd be checking each time. I'm sure the nurses would want to go on automatic, and be frustrated that they couldn't) It would cost a fortune. It's overkill for a run of the mill UTI.
I could wait, do nothing and lose a kidney.
We decided to start a different antibiotic, one that didn't have corn but was not specific. It would hopefully do *something* while we waited for the culture to come back with the exact strain of bacteria that had invaded my urinary tract.
By this time, my back hurt. That meant it had entered my kidney. We were frustrated that a "normal" person would have been almost through with their antibiotic course by this time, and relatively symptom free. I was getting worse, and not because I was obstinate or trying to ignore medical advice. I wanted help. They just didn't know how.
The pharmacist could not guarantee the brand, and the capsules could have corn in them though the drug itself, amoxicillin, was not adulterated. So I agreed to open the capsule, and take it in applesauce or another semi-liquid. The taste reminded me of the pink stuff I took when I was a kid, except that it didn't make my stomach clench and wasn't accompanied by a revolting bubblegum aftertaste. For future reference, antibiotics are better masked in carrot soup than applesauce.
The antibiotic worked for a few days. I woke up Monday feeling worse again, and shortly afterward the doctor's office called to say that the bacteria was resistant to amoxicillin. Then I got a hold of the compounding pharmacist, again, who apologized for taking so long and promised to get my Cipro by evening.
2 days on antibiotics, a week of frantic calls and office visits, and the only symptom still bothering me is an intermittent back pain and some nausea, which is common on antibiotics across the board. Kidney involvement is always risky, and permanent damage is a very real possibility.
All this simply because...there's corn in that. There's corn in everything, and no one knows it. Generally, I laugh. It's funny, people hear corn and they can't see the big picture. A little here, a little there. The FAAN calls it hypoallergenic. It's known by a thousand names. It has a myriad of uses, and growing. It took years to learn what I know to stay relatively safe. And yet, when I most need my knowledge, when it's necessary to turn to the medical community and work together for a solution, we're both lost. The pharmacist can't tell me what antibiotics might not have corn in them. The doctor can't find the information she needs to choose the best of a limited amount of pre-made corn free medications. And this time, my needs were simple. What happens next time?
Statistically, few people react to the excipients of drugs. I'm lucky. I'm just a statistic. One in a million. Insignificant. Unique.
But I exist. And I'd like to keep my kidneys, thank you very much.
Sunday, December 23, 2007
Martyrdom: The strange side effect of a glutening.
I'm learning, slowly, what a gluten exposure really looks like. Not the big shebang. That's obvious, and painful, and I get through it because I recognize it quickly for what it is. But the little, insidious glutening that occurs when you walk through a bakery and can almost taste the sweet poison. When you help a child decorate a gingerbread house, made with real gingerbread. When you sit down and play with the playdoh, too, and forget to remind the kids to scrub their hands afterwards.
At first, it's not much. I think "Oh, I hope I don't pay for that later!" hold my breath, and go about my day. Later, I may notice an upset stomach. But, I can deal with it. Maybe some itching. Again, I can handle it.
I find myself thinking, "Maybe I'm coming down with something." And maybe I am.
I'm tired. Not sleepy. But I don't relate it to gluten. I just feel lazy. The only connection I make is when I find myself craving gluten, and tell myself (and sometimes my husband) that I'm lucky. Mild stomach issues, and a bunch of cravings. I can handle this. I hope it passes soon.
I go to the grocery store. I feel overwhelmed. I don't feel like cooking, what can I get for the kids?
I buy gluten. The bread looks tempting. I can avoid it, easily. We'll watch for crumbs. Oh, and look at those scones. My youngest will love them. I'll get frozen dairy free pizza for oldest, she deserves a treat. I'll be careful with which pans I use. Crackers. Those look good. Oh, lets get a bunch. I'll just vacuum the living room carefully. They'll make a good snack.
And I go on. At the check out counter, I realize I have cashew butter, eggs and a bunch of food for the rest of my family. Huh. Well, no matter, I don't feel like cooking. I'll eat "something". Next time, yes, next time I'll be more organized.
Except that soon, there are crumbs on the counter that I don't feel like chasing down. I'm scatterbrained and cranky. I'm behind on the dishes. I make their dinner, and while they eat I carefully prepare mine on an ever shrinking "clean space" to avoid gluten or corn contamination. They can't help because the risk of gluten cross contamination rises, so they grumble. I think, again and again, that they are suffering because of me. The more gluten there is in the house, the harder it becomes to keep things clean. More than once, I toss the entire silverware drawer into the dishwasher because someone reaches in with a contaminated hand.
I start to feel like this is my job, to let them be "normal" and just work harder. I can manage with just a little extra work. I can avoid crumbs. I can live with an occasional, mild reaction. I'm better now, so much better than I was. And it's true. I am.
Slowly, I feel more overwhelmed with less stimuli. I lose my ability to step back, smile and say "Wait a minute, one at a time." We run out of bread and I panic. What will the kids eat? I have a bad day, a stay at home kind of day, and chalk it up to IBS. And stress. Because, of course, it really all boils down to stress. Didn't the doctors spend years telling me it was stress? I guess they were right. Look at the superhuman measures I've been taking to avoid eating the wrong food. To avoid cross contamination. It can't be gluten. It can't be corn. And yet, here I am, with this knot in my stomach, and the swishing crampy nausea. It's stress, probably from trying so hard to avoid the wrong foods. Yes, that's it. I need to adjust. Whats wrong with me? Why aren't I used to this by now?
And then, I get a hive or two. At first, I say something bit me. Then I call it a rash, or a pimple (pimples probably aren't supposed to itch and ache like crazy, or go away when you take Claritin D12, but I ignore that fact for now.) And then, I wonder why life got so stressful.
The kitchen comes into clearer focus. My daughter hugs me with gritty, gluten-crumb hands. Hands that hit right where the rash or pimples are cropping up.
And truth slaps me in the face. It's the gluten, you idiot. It's everywhere, there are crumbs on the sofa, on the kitchen table. What have the kids eaten recently that you weren't allergic to?
A sense of de ja vu strikes. I know this feeling, this moment of realization. It happens 2 or 3 weeks after a mild glutening, when the symptoms are mild but persistent, when I think I'm fighting off an infection. When slowly I let the danger foods creep into my kids diet, and I tell myself that I have to. I have to let them eat that stuff. I can't afford to feed them my safe foods. They won't like my foods as much, and its so much effort. I stop coking much for myself, because I'm busy keeping them fed with convenience foods. (Ironic that they seem to take up so much more of my time than cooking whole foods)
It's not that much effort, by the way. And they love a variety of foods that I make safely for everyone. But once in awhile, when the gluten gets me down, I let the doubts creep in. A mild depression settles in, accompanied by brain fog. And I become the martyr.
It's time to scrub the counters, clean out the cupboards, and regain control of my life. Because I'm not a martyr. I'm a mom. I can't be a good mom if I'm only 60%. And part of parenting involves teaching the kids family cooperation, how to participate in planning and preparing meals, and budgeting skills. A minimal gluten house won't hurt them.
But a glutened house certainly hurts us all.
At first, it's not much. I think "Oh, I hope I don't pay for that later!" hold my breath, and go about my day. Later, I may notice an upset stomach. But, I can deal with it. Maybe some itching. Again, I can handle it.
I find myself thinking, "Maybe I'm coming down with something." And maybe I am.
I'm tired. Not sleepy. But I don't relate it to gluten. I just feel lazy. The only connection I make is when I find myself craving gluten, and tell myself (and sometimes my husband) that I'm lucky. Mild stomach issues, and a bunch of cravings. I can handle this. I hope it passes soon.
I go to the grocery store. I feel overwhelmed. I don't feel like cooking, what can I get for the kids?
I buy gluten. The bread looks tempting. I can avoid it, easily. We'll watch for crumbs. Oh, and look at those scones. My youngest will love them. I'll get frozen dairy free pizza for oldest, she deserves a treat. I'll be careful with which pans I use. Crackers. Those look good. Oh, lets get a bunch. I'll just vacuum the living room carefully. They'll make a good snack.
And I go on. At the check out counter, I realize I have cashew butter, eggs and a bunch of food for the rest of my family. Huh. Well, no matter, I don't feel like cooking. I'll eat "something". Next time, yes, next time I'll be more organized.
Except that soon, there are crumbs on the counter that I don't feel like chasing down. I'm scatterbrained and cranky. I'm behind on the dishes. I make their dinner, and while they eat I carefully prepare mine on an ever shrinking "clean space" to avoid gluten or corn contamination. They can't help because the risk of gluten cross contamination rises, so they grumble. I think, again and again, that they are suffering because of me. The more gluten there is in the house, the harder it becomes to keep things clean. More than once, I toss the entire silverware drawer into the dishwasher because someone reaches in with a contaminated hand.
I start to feel like this is my job, to let them be "normal" and just work harder. I can manage with just a little extra work. I can avoid crumbs. I can live with an occasional, mild reaction. I'm better now, so much better than I was. And it's true. I am.
Slowly, I feel more overwhelmed with less stimuli. I lose my ability to step back, smile and say "Wait a minute, one at a time." We run out of bread and I panic. What will the kids eat? I have a bad day, a stay at home kind of day, and chalk it up to IBS. And stress. Because, of course, it really all boils down to stress. Didn't the doctors spend years telling me it was stress? I guess they were right. Look at the superhuman measures I've been taking to avoid eating the wrong food. To avoid cross contamination. It can't be gluten. It can't be corn. And yet, here I am, with this knot in my stomach, and the swishing crampy nausea. It's stress, probably from trying so hard to avoid the wrong foods. Yes, that's it. I need to adjust. Whats wrong with me? Why aren't I used to this by now?
And then, I get a hive or two. At first, I say something bit me. Then I call it a rash, or a pimple (pimples probably aren't supposed to itch and ache like crazy, or go away when you take Claritin D12, but I ignore that fact for now.) And then, I wonder why life got so stressful.
The kitchen comes into clearer focus. My daughter hugs me with gritty, gluten-crumb hands. Hands that hit right where the rash or pimples are cropping up.
And truth slaps me in the face. It's the gluten, you idiot. It's everywhere, there are crumbs on the sofa, on the kitchen table. What have the kids eaten recently that you weren't allergic to?
A sense of de ja vu strikes. I know this feeling, this moment of realization. It happens 2 or 3 weeks after a mild glutening, when the symptoms are mild but persistent, when I think I'm fighting off an infection. When slowly I let the danger foods creep into my kids diet, and I tell myself that I have to. I have to let them eat that stuff. I can't afford to feed them my safe foods. They won't like my foods as much, and its so much effort. I stop coking much for myself, because I'm busy keeping them fed with convenience foods. (Ironic that they seem to take up so much more of my time than cooking whole foods)
It's not that much effort, by the way. And they love a variety of foods that I make safely for everyone. But once in awhile, when the gluten gets me down, I let the doubts creep in. A mild depression settles in, accompanied by brain fog. And I become the martyr.
It's time to scrub the counters, clean out the cupboards, and regain control of my life. Because I'm not a martyr. I'm a mom. I can't be a good mom if I'm only 60%. And part of parenting involves teaching the kids family cooperation, how to participate in planning and preparing meals, and budgeting skills. A minimal gluten house won't hurt them.
But a glutened house certainly hurts us all.
Monday, December 17, 2007
A little bit of Sympathy
My daughter is 9. She's allergic to dairy. It's not serious, but its uncomfortable and her suffering seems lengthy, so we avoid dairy like the plague. She's also allergic to blue dye (Well, not technically, but it gives her a migraine) so there are few "regular" treats that she enjoys.
Last week she told me that school was unfair, and she hates parties. Apparently, they regularly serve popcorn for treats, there have been birthday parties she couldn't participate in, and now a pizza party was being planned.
For the first time ever, she's feeling isolated in school. My heart bled for her, as I asked what she needed.
I reminded her the teacher knows about her allergy. She nodded.
I reminded her, gently, that we couldn't ask them to provide safe treats for her, specifically. I don't trust them to label read. She knows, she says, she doesn't care, really.
I told her we couldn't ask them to stop having parties, and she told me I was crazy, she doesn't want them to stop having parties, either. (This, I admit, confused me since she hates parties)
I asked about sending a safe treat for her to keep on hand. She shook her head.
I held her for awhile, just trying to comfort her. And then she looked up at me, tears glistening in her eyes.
"I just want the teacher to know, mom, I want her to know I have a dairy allergy. And I want her to say 'I'm sorry, you can't have this tomorrow, but maybe you can bring your own treat.' Then I'd feel better."
Just a few words of sympathy, acknowledgment. Its often forgotten in our rush, in our knowledge that people understand a situation is unfair. And yet, somehow, it can go a long ways towards lightening a burden.
Last week she told me that school was unfair, and she hates parties. Apparently, they regularly serve popcorn for treats, there have been birthday parties she couldn't participate in, and now a pizza party was being planned.
For the first time ever, she's feeling isolated in school. My heart bled for her, as I asked what she needed.
I reminded her the teacher knows about her allergy. She nodded.
I reminded her, gently, that we couldn't ask them to provide safe treats for her, specifically. I don't trust them to label read. She knows, she says, she doesn't care, really.
I told her we couldn't ask them to stop having parties, and she told me I was crazy, she doesn't want them to stop having parties, either. (This, I admit, confused me since she hates parties)
I asked about sending a safe treat for her to keep on hand. She shook her head.
I held her for awhile, just trying to comfort her. And then she looked up at me, tears glistening in her eyes.
"I just want the teacher to know, mom, I want her to know I have a dairy allergy. And I want her to say 'I'm sorry, you can't have this tomorrow, but maybe you can bring your own treat.' Then I'd feel better."
Just a few words of sympathy, acknowledgment. Its often forgotten in our rush, in our knowledge that people understand a situation is unfair. And yet, somehow, it can go a long ways towards lightening a burden.
Wednesday, December 05, 2007
The Gift of Guilt
It's that time of year again.
We drive down the street amidst sparkling multicolored lights, inflatable santa's wave cheerfully in the wind, and in the stores lines wind around bright displays of tempting last minute "perfect gift" merchandise.
I love this time of year. I love the lights, the sounds of carols, and the scent of holiday baking. I love the chill in the air (as long as I don't have to be out for too long) and like most people I start longing for the taste of my favorite treats. Unlike most people, I will be making any (and every) thing myself.
Like many people out there, I have food allergies. Of course, if you're reading this blog you already knew that. For some reason holidays can be the hardest. This year, I'm simply grateful for the opportunity to eat a small variety of treats. I'm working on expanding my diet (carefully testing a few new foods. Hoping I can tolerate tomato now, or maybe some nice pinto beans. Not exactly holiday themed, but they do add to the menu.)
I'm also reading up on posts from various forums, and thinking back on years past. Sprinkled throughout the anticipatory ramblings of some members is always a thin, but constant note of dissent. Some people dread the holidays.
And it isn't because they don't like carols, or the festive mood. They don't seem to dread the lines, or wrapping gifts or even shopping. The most voiced complaints? Generic gifts.
It's not that these people are ungrateful. The comments are almost always made in the midst of a post about "what should I get for this person I don't know very well, but really want to remember for the holidays this year." They're softened with the sentiment that "it IS the thought that counts..." but, well, there is that BUT.
Perfume, bath lotions, fancy body lotions and food are some of the nation's favorite "I really don't know you...but you're human, so enjoy" gifts. Popular for teenage nieces and nephews, for long lost cousins and that coworker you've never really seen but know is lurking behind an office door, these items are loved by many. (At least, one presumes that they are enjoyed by someone, since they sell so well.) But they are also very personal items. And there are many giftees who become emotional on the subject.
It's not that they think the giver is inconsiderate. Or even that they take the gift to mean "Here, have a batch of hives and a trip to the ER for Christmas!" They know that it's the gift that counts. They appreciate the thought, time and cash that this tacit remembrance cost. The real root of their complaint seems to be the underlying guilt associated with not being able to appreciate it. Or even to explore a new, potentially exciting product. And, deep down, the strong desire to enjoy it, as the giver most likely hopes they will.
People know that its not the gift that counts, but sometimes the thought means much more than a package. Some people would truly appreciate a card much more than a plate of homemade brownies (especially if the receiver is allergic to nuts and the brownies are studded with pecans.) And frankly, some givers seem intent on simply providing shiny paper and lots of bows. The receiver is little more than a name on their list. In some cases, its fine. But when you know someone won't be able to eat the popcorn in the popcorn tin its just a waste of money and energy to wrap it up for them. Saying it's the thought that counts won't change that. In fact, when one intentionally hands another person something that they already know won't be enjoyed by the receiver, the thought comes through loud and clear, and not the way one hopefully intended.
This year, I hope we all avoid the gift of guilt. But of course, it will lay there under the surface. All we can do is try to muster enough holiday spirit to drown that wave of disappointment when we're handed something we can't eat (or touch, or even open) for safety's sake and remind ourselves that we didn't ask someone to go out of their way for us. Try not to feel guilty, because we are human (even if we don't enjoy Aunt Mary's secret recipe stollen or neighbor Ginger's famous sugar cookies) And so are they.
We drive down the street amidst sparkling multicolored lights, inflatable santa's wave cheerfully in the wind, and in the stores lines wind around bright displays of tempting last minute "perfect gift" merchandise.
I love this time of year. I love the lights, the sounds of carols, and the scent of holiday baking. I love the chill in the air (as long as I don't have to be out for too long) and like most people I start longing for the taste of my favorite treats. Unlike most people, I will be making any (and every) thing myself.
Like many people out there, I have food allergies. Of course, if you're reading this blog you already knew that. For some reason holidays can be the hardest. This year, I'm simply grateful for the opportunity to eat a small variety of treats. I'm working on expanding my diet (carefully testing a few new foods. Hoping I can tolerate tomato now, or maybe some nice pinto beans. Not exactly holiday themed, but they do add to the menu.)
I'm also reading up on posts from various forums, and thinking back on years past. Sprinkled throughout the anticipatory ramblings of some members is always a thin, but constant note of dissent. Some people dread the holidays.
And it isn't because they don't like carols, or the festive mood. They don't seem to dread the lines, or wrapping gifts or even shopping. The most voiced complaints? Generic gifts.
It's not that these people are ungrateful. The comments are almost always made in the midst of a post about "what should I get for this person I don't know very well, but really want to remember for the holidays this year." They're softened with the sentiment that "it IS the thought that counts..." but, well, there is that BUT.
Perfume, bath lotions, fancy body lotions and food are some of the nation's favorite "I really don't know you...but you're human, so enjoy" gifts. Popular for teenage nieces and nephews, for long lost cousins and that coworker you've never really seen but know is lurking behind an office door, these items are loved by many. (At least, one presumes that they are enjoyed by someone, since they sell so well.) But they are also very personal items. And there are many giftees who become emotional on the subject.
It's not that they think the giver is inconsiderate. Or even that they take the gift to mean "Here, have a batch of hives and a trip to the ER for Christmas!" They know that it's the gift that counts. They appreciate the thought, time and cash that this tacit remembrance cost. The real root of their complaint seems to be the underlying guilt associated with not being able to appreciate it. Or even to explore a new, potentially exciting product. And, deep down, the strong desire to enjoy it, as the giver most likely hopes they will.
People know that its not the gift that counts, but sometimes the thought means much more than a package. Some people would truly appreciate a card much more than a plate of homemade brownies (especially if the receiver is allergic to nuts and the brownies are studded with pecans.) And frankly, some givers seem intent on simply providing shiny paper and lots of bows. The receiver is little more than a name on their list. In some cases, its fine. But when you know someone won't be able to eat the popcorn in the popcorn tin its just a waste of money and energy to wrap it up for them. Saying it's the thought that counts won't change that. In fact, when one intentionally hands another person something that they already know won't be enjoyed by the receiver, the thought comes through loud and clear, and not the way one hopefully intended.
This year, I hope we all avoid the gift of guilt. But of course, it will lay there under the surface. All we can do is try to muster enough holiday spirit to drown that wave of disappointment when we're handed something we can't eat (or touch, or even open) for safety's sake and remind ourselves that we didn't ask someone to go out of their way for us. Try not to feel guilty, because we are human (even if we don't enjoy Aunt Mary's secret recipe stollen or neighbor Ginger's famous sugar cookies) And so are they.
Saturday, August 18, 2007
The good in people
Today, I felt like I stepped back in time. Or into the kind of past you see on TV. I've never met so many good tempered people gathered together at one time before.
Let me start at the beginning. My local health food store is moving. In preparation for the big event, they stopped restocking the shelves and promised loyal customers that the last day everything would receive markdowns. Today's the last day.
I knew it would be hot, and crowded. My heart plummeted when I saw people walking over from two parking lots down. But...25% off is just too good to miss, when your grocery bill has been creeping upwards. So we waited our turn, the kids grumbling quietly in the backseat.
Our first miracle was finding a parking space right in front of the store. The carts were entirely gone. There were none even floating in the parking lot. A line was forming near the exit for those willing to follow a fellow shopper to their car and take the cart from there.
Not a good sign. Something felt wrong so far, but I hadn't put my finger on it yet.
We wove our way into the produce section. I blinked a few times before understanding that the wall of people in front of me were actually in line. It was winding its way all the way through the bulk foods and around cases of apples and displays of strawberries.
My youngest started to cry. I quickly assured her that we didn't really need any produce, and zipped through the line to the less crowded, but still very busy area behind. I found a lot of empty shelves. Interesting items were out, but not many suited our allergies. We wound our way about, occasionally stopping to grab the last one or two boxes of anything I buy on a relatively regular basis.
Something still didn't feel right. It was like walking through a dream world. People were there, people were everywhere, but it wasn't a painful crowded experience.
I've gone shopping the day before Thanksgiving, and on Christmas eve, I've been in stores the Friday before cooking holidays and visited plenty of clearance sales. They're never quite this crowded. But, those crowds are much more miserable to navigate.
We were bumped once. The offender turned to quickly apologize, not just to me but to my daughter. People were...smiling. People apologized for being in the way of display cases, tall customers were handing out of reach items down to shorter customers. I saw one woman pass a container to another family after they said "Oh, she got the last one." A man in line offered some of his soup cans to a woman who mentioned she was on the same diet because she didn't realize there were suitable soups. Now, none of these actions are terribly extraordinary. The extraordinary thing is that every where we turned, we saw someone going out of their way to help someone else.
I don't know what it was about today. But, I am impressed. Shocked, in fact. We stood in line for half an hour, and it hit me. Despite the crowds, lack of organization on the shelves, and limited selections; no one, not one person was angry or frustrated. There were plenty of laughter and smiles. In the world of Hogwarts, you'd think the entire store had been under a "Cheering Charm".
It was the craziest I've ever seen a shop (unless you count Toys R Us the Sunday before Christmas) and it was the most pleasant shopping trip I think I've ever taken. I mentioned this to the cashier and she said she'd been noticing the same thing. She'd never seen anything like it.
My faith in humanity has been restored.
Let me start at the beginning. My local health food store is moving. In preparation for the big event, they stopped restocking the shelves and promised loyal customers that the last day everything would receive markdowns. Today's the last day.
I knew it would be hot, and crowded. My heart plummeted when I saw people walking over from two parking lots down. But...25% off is just too good to miss, when your grocery bill has been creeping upwards. So we waited our turn, the kids grumbling quietly in the backseat.
Our first miracle was finding a parking space right in front of the store. The carts were entirely gone. There were none even floating in the parking lot. A line was forming near the exit for those willing to follow a fellow shopper to their car and take the cart from there.
Not a good sign. Something felt wrong so far, but I hadn't put my finger on it yet.
We wove our way into the produce section. I blinked a few times before understanding that the wall of people in front of me were actually in line. It was winding its way all the way through the bulk foods and around cases of apples and displays of strawberries.
My youngest started to cry. I quickly assured her that we didn't really need any produce, and zipped through the line to the less crowded, but still very busy area behind. I found a lot of empty shelves. Interesting items were out, but not many suited our allergies. We wound our way about, occasionally stopping to grab the last one or two boxes of anything I buy on a relatively regular basis.
Something still didn't feel right. It was like walking through a dream world. People were there, people were everywhere, but it wasn't a painful crowded experience.
I've gone shopping the day before Thanksgiving, and on Christmas eve, I've been in stores the Friday before cooking holidays and visited plenty of clearance sales. They're never quite this crowded. But, those crowds are much more miserable to navigate.
We were bumped once. The offender turned to quickly apologize, not just to me but to my daughter. People were...smiling. People apologized for being in the way of display cases, tall customers were handing out of reach items down to shorter customers. I saw one woman pass a container to another family after they said "Oh, she got the last one." A man in line offered some of his soup cans to a woman who mentioned she was on the same diet because she didn't realize there were suitable soups. Now, none of these actions are terribly extraordinary. The extraordinary thing is that every where we turned, we saw someone going out of their way to help someone else.
I don't know what it was about today. But, I am impressed. Shocked, in fact. We stood in line for half an hour, and it hit me. Despite the crowds, lack of organization on the shelves, and limited selections; no one, not one person was angry or frustrated. There were plenty of laughter and smiles. In the world of Hogwarts, you'd think the entire store had been under a "Cheering Charm".
It was the craziest I've ever seen a shop (unless you count Toys R Us the Sunday before Christmas) and it was the most pleasant shopping trip I think I've ever taken. I mentioned this to the cashier and she said she'd been noticing the same thing. She'd never seen anything like it.
My faith in humanity has been restored.
Thursday, August 09, 2007
Allergic to my daughter?
Well, here's a post I never thought I'd need to make.
Last night, as many nights, I awoke to the sound of muffled footsteps stumbling into my room. The tiny voice whispering, "I had a bad dream," floated through my half conscious mind and as usual, I scootched myself over and folded back the covers. It may not be Dr Spock approved, but it sure helps everyone get enough sleep.
I wrapped my arm around her, and took a deep breath of freshly washed hair. Promptly, I felt my nose stuff up and throat itch. "Ugh," I thought to myself, "Thats some strong shampoo." But, I figured once I fell asleep again it really wouldn't bother me too much.
Then my ears starting feeling tight, painfully tight as if they needed to pop. Where my nose and cheek brushed the top of her already sleeping head, I began to itch.
I groaned and rolled over. My back started to itch. Slowly it spread, until I realized that it wasn't going to go away. I sat up and looked down on her serene face.
Then crawled out of bed and grabbed some Claritin-D12 (Its corn free) and navigated the tubes and wires of my husband's C-pap machine to sleep on the other side of him. Awoke with a mild rash on my face and neck, which faded as the day passed (with the help of Claritin-D12, an antihistamine. The only over the counter antihistamine I can find without any of my allergens in it.)
There are little things that you don't think of when dealing with allergies. Snuggling your baby in the middle of the night is definitely one of those little things that you don't want to miss out on. You also don't want to suffer for it later. I know that we have to take superhuman measures when we bake together. My littlest has had to wash her hands 7 times in the middle of one batch of muffins. There is no tasting and returning the spoon to the bowl, not because we might share germs but because we might share gluten. Or corn. Or dairy.
These steps we can all understand. But snuggling? I know that most people starting the journey, or the lucky ones who've never thought of traveling it will think cautions about snuggling someone with the wrong shampoo would think the one doing the cautioning was a bit paranoid. After all, you have to draw the line somewhere.
Where do you draw it? How far do you go to protect yourself? And how do you decide what is reasonable?
I won't be giving up snuggles. But I'll keep that Claritin on hand. Thank heavens there are still a few safe treatments out there.
Last night, as many nights, I awoke to the sound of muffled footsteps stumbling into my room. The tiny voice whispering, "I had a bad dream," floated through my half conscious mind and as usual, I scootched myself over and folded back the covers. It may not be Dr Spock approved, but it sure helps everyone get enough sleep.
I wrapped my arm around her, and took a deep breath of freshly washed hair. Promptly, I felt my nose stuff up and throat itch. "Ugh," I thought to myself, "Thats some strong shampoo." But, I figured once I fell asleep again it really wouldn't bother me too much.
Then my ears starting feeling tight, painfully tight as if they needed to pop. Where my nose and cheek brushed the top of her already sleeping head, I began to itch.
I groaned and rolled over. My back started to itch. Slowly it spread, until I realized that it wasn't going to go away. I sat up and looked down on her serene face.
Then crawled out of bed and grabbed some Claritin-D12 (Its corn free) and navigated the tubes and wires of my husband's C-pap machine to sleep on the other side of him. Awoke with a mild rash on my face and neck, which faded as the day passed (with the help of Claritin-D12, an antihistamine. The only over the counter antihistamine I can find without any of my allergens in it.)
There are little things that you don't think of when dealing with allergies. Snuggling your baby in the middle of the night is definitely one of those little things that you don't want to miss out on. You also don't want to suffer for it later. I know that we have to take superhuman measures when we bake together. My littlest has had to wash her hands 7 times in the middle of one batch of muffins. There is no tasting and returning the spoon to the bowl, not because we might share germs but because we might share gluten. Or corn. Or dairy.
These steps we can all understand. But snuggling? I know that most people starting the journey, or the lucky ones who've never thought of traveling it will think cautions about snuggling someone with the wrong shampoo would think the one doing the cautioning was a bit paranoid. After all, you have to draw the line somewhere.
Where do you draw it? How far do you go to protect yourself? And how do you decide what is reasonable?
I won't be giving up snuggles. But I'll keep that Claritin on hand. Thank heavens there are still a few safe treatments out there.
Wednesday, June 06, 2007
Life in Perspective
A few years ago, I was on a parenting forum with other parents of other children around my kids ages. There was nothing particularly special or unique about us. We just formed a web community, filled with unique individuals with similar parenting styles and a connection that you just can't explain.
We cared about one another, kept some track of our kids progress, laughed at the silly stuff and rejoiced at each others milestones. We're still a relatively close community, though as the kids age there's less and less to unite us online.
But there is one moment that changed us all, forever. One member, whose daughter was just a few months older than mine, awoke to tragedy. Her toddler had crawled out of bed in the middle of the night and attempted to climb the dresser. It fell, crushing her.
There was no second chance, and worse...nothing that anyone had done "wrong". She was asleep in her room, with the door closed to prevent accidents if she happened to wake and wander. It was a setting like thousands of other households in the United States. She wasn't neglected, she wasn't abused, and no one had "accidentally" left something dangerous within reach. It just never occurred to anyone that a dresser might tip over.
In Earthquake county, we bolt our bookcases to the walls and protect our knick knacks. Nut never had I imagined a full sized dresser might tip. I've tried to move one, it's not easy.
But what happened to this child isn't unique. And this weekend, tragedy struck again, when a young boy climbing a dresser tipped it over. He was fine. But, it fell on top of his 6 month old brother, who didn't survive.
According to the CPSC, at least 8,000 children are injured in furniture tips and falls every year. In the grand scheme of things, it is unlikely for a child to be fatally injured by a falling dresser. But when it's your child, statistics don't matter.
There is something we can do to prevent further tragedy. In households with young children, all furniture should be securely fastened to a wall. It doesn't matter how closely you watch, or how careful you are. Accidents happen. We can be "overly cautious" with a few extra nails. And we can pass the word on to other parents, so they can anticipate the unfathomable and prevent another nightmare.
We cared about one another, kept some track of our kids progress, laughed at the silly stuff and rejoiced at each others milestones. We're still a relatively close community, though as the kids age there's less and less to unite us online.
But there is one moment that changed us all, forever. One member, whose daughter was just a few months older than mine, awoke to tragedy. Her toddler had crawled out of bed in the middle of the night and attempted to climb the dresser. It fell, crushing her.
There was no second chance, and worse...nothing that anyone had done "wrong". She was asleep in her room, with the door closed to prevent accidents if she happened to wake and wander. It was a setting like thousands of other households in the United States. She wasn't neglected, she wasn't abused, and no one had "accidentally" left something dangerous within reach. It just never occurred to anyone that a dresser might tip over.
In Earthquake county, we bolt our bookcases to the walls and protect our knick knacks. Nut never had I imagined a full sized dresser might tip. I've tried to move one, it's not easy.
But what happened to this child isn't unique. And this weekend, tragedy struck again, when a young boy climbing a dresser tipped it over. He was fine. But, it fell on top of his 6 month old brother, who didn't survive.
According to the CPSC, at least 8,000 children are injured in furniture tips and falls every year. In the grand scheme of things, it is unlikely for a child to be fatally injured by a falling dresser. But when it's your child, statistics don't matter.
There is something we can do to prevent further tragedy. In households with young children, all furniture should be securely fastened to a wall. It doesn't matter how closely you watch, or how careful you are. Accidents happen. We can be "overly cautious" with a few extra nails. And we can pass the word on to other parents, so they can anticipate the unfathomable and prevent another nightmare.
Monday, June 04, 2007
Girl Scout Fun
This week end my daughter went on her very first Girl Scout overnight.
Like any Brownie, she was nervous. But unlike most Brownie scouts, she also had to be concerned about what she could eat. She has to avoid dairy and blue dye in order to avoid a nasty migraine.
I must admit, I was concerned as well. I feel so caught up in the whole food allergy jungle, that I'm never quite sure what "normal" is anymore or where we all fit in. And there are many nights when I look at the clock, know the kids are hungry and just can't fathom what to fix. (My youngest is allergic to nuts. I need to avoid gluten, corn, potato, squash, beef, most legumes, cruciferous veggies and olive oil. Maybe more, it gets overwhelming.) There's not a lot left, especially when you want it to taste good enough for a picky 5 year old palate.
How was this trip going to happen without her feeling that much different?
Thankfully my worries really were for nothing. There is another girl in her troop avoiding dairy (and gluten). The leaders really did provide the food; for everyone. In fact, my daughter came home with not only her own emergency snacks (I hid some granola bars in there, hoping that if worst came to worst, she could at least have her own calories on hand.) but a bag full of leftovers. There were Newmans dairy free cookies, dried fruit and koala crisp cereal. All items that are uniquely special treats in our household...she fared quite well!
Most precious to us, however, is the fact that the troop cared enough to make the trip safe for her. The one thing she did not bring home was an upset stomach, which she assures me time after time is much worse than any peer pressure or feeling of being singled out her 9 year old mind can imagine. Thank you Girl Scouts!
Like any Brownie, she was nervous. But unlike most Brownie scouts, she also had to be concerned about what she could eat. She has to avoid dairy and blue dye in order to avoid a nasty migraine.
I must admit, I was concerned as well. I feel so caught up in the whole food allergy jungle, that I'm never quite sure what "normal" is anymore or where we all fit in. And there are many nights when I look at the clock, know the kids are hungry and just can't fathom what to fix. (My youngest is allergic to nuts. I need to avoid gluten, corn, potato, squash, beef, most legumes, cruciferous veggies and olive oil. Maybe more, it gets overwhelming.) There's not a lot left, especially when you want it to taste good enough for a picky 5 year old palate.
How was this trip going to happen without her feeling that much different?
Thankfully my worries really were for nothing. There is another girl in her troop avoiding dairy (and gluten). The leaders really did provide the food; for everyone. In fact, my daughter came home with not only her own emergency snacks (I hid some granola bars in there, hoping that if worst came to worst, she could at least have her own calories on hand.) but a bag full of leftovers. There were Newmans dairy free cookies, dried fruit and koala crisp cereal. All items that are uniquely special treats in our household...she fared quite well!
Most precious to us, however, is the fact that the troop cared enough to make the trip safe for her. The one thing she did not bring home was an upset stomach, which she assures me time after time is much worse than any peer pressure or feeling of being singled out her 9 year old mind can imagine. Thank you Girl Scouts!
Friday, April 13, 2007
Success???
Tonight I feel like Mary Tyler Moore, you know, when she tosses her hat up into the air with a smile.
I baked. I didn’t just bake...I made something everyone could eat, it was healthy, it was tasty and it was fun.
This may not seem like much of a milestone. There was a time in my life when I did a fair amount of baking. I wasn’t Martha Stewart or Julia Childe, but I had fun experimenting.
When I first started getting sick, I made a connection with food. And I started looking for the optimum baked good to make me feel WELL after eating it.
A little extra wheat germ, toss in some oat bran…it was a celiac nightmare. But I didn’t know that then. I only knew I felt less sick somedays, mostly when I’d only eaten my own cooking.
My daughter started Kindergarten and I jumped right into the Bake Sale pool. My muffins were tasty. My Snickerdoodles sold out. I was too sick to gloat. I cut corn out of my diet, and then my kitchen. I could handle that. I could experiment, when I could stand up long enough. But the challenge didn’t end there. In the summer of 2005 I went gluten free. Gluten is the protein found in wheat, rye and barley. Gluten intolerant individuals also avoid oats, at least during the healing process. Most Gluten Free goods use a fair amount of corn…which is forbidden to me. The restrictions and my violent symptoms put a halt on my baking.
And then, my oldest daughter had to give up dairy.
No dairy? On top of no gluten, no corn, no nuts? And then there are all the mild intolerances. Squash, potato, and citrus were all off limits. I figured I’d never make cookies again. At least…not ones I could share.
But, yesterday I decided it was time to experiment. I’ve had so many bad reactions to food that I’m scared new items might bite back. However, I’ve been looking for variety and with a week’s school vacation coming up (completely devoid of obligations) it seemed the perfect time to test my tolerance of the ancient Incan staple…Quinoa. A box of Quinoa flakes has been sitting on top of my fridge awaiting a moment of bravery for some time now.
The problem was, I just wasn’t in the mood for hot cereal.
The box included a recipe, but I didn’t have all the ingredients. No matter, the object was to just test it out. We could experiment with taste later. And I wanted something resembling a cookie.
So, I replaced bananas with applesauce, the flour with extra quinoa flakes and I omitted the baking powder (since normal baking powder contains corn starch and kosher baking powder contains potato starch and I wasn’t in the mood to make my own.) I added a few chocolate chips, just in case. Everythings better with chocolate.
And it was good. Not just “Wow, I haven’t had anything resembling this in years” good, it was really tasty, and nutritious to boot. My gluten-adoring, dairy-devouring picky eating 5 year old inhaled most of the first batch. My oldest suggested leaving the eggs out of the second batch, which she ate on her own (this time we replaced the chocolate with blueberries. Picky youngest decided she doesn’t eat blueberries.) Since my dear husband, another gluten addict, had yet to taste this new recipe…I made a third batch. The kids left him half a cookie.
I’m not quite ready to re-enter the bake sale crowd. But, tonight I’m happy. As Mary’s theme song intones…I might just make it after all.
Thursday, February 01, 2007
Today, I'm simply going to talk out loud.
A friend of mine has two young kids who obviously react to traces of corn. She recently was priviliged to see a top allergist in the country. She was hopeful for answers, guidance, maybe if nothing else...some sort of explanation and if nothing else, some validation. As a parent, its scary to limit your child's diet. Especially without guidance from the medical community.
What she got was a slap in the face.
Those of us who have traced our painful symptoms to specific foods know that IgE allergies are life threatening. And that other "sensitivities" don't necessarily show up on food allergy tests. But we have done research and found studies that link our symptoms with food intolerances, or even allergies. Some of us are lucky enough to have allergists or gastroenterologists who have been around long enough to know that, regardless of current testing standards, some people have negative reactions to food. Foods can cause debillitating symptoms.
But this dr told my friend that her observations are not valid.
Of course...like any good parent, she will not harm her kids simply because the dr tells her to. She won't ignore their rashes and physical pain because this one specialist tells her they aren't really related to what they eat. (Just because it always happens when they eat specific items doesn't mean a thing.)
But this feels like a blow, not just to her but to all of us who find food as a definate trigger for physical symptoms.
This was a top specialist. One that other drs respect. An authority, if you will, on the subject of food allergies. And he doesn't believe in them, unless they kill you.
I don't know about you, the average reader who has stumbled upon my ramblings, but I don't want to die to prove a point. I don't want anyone to have to die, or come anywhere near it, to make the medical "community" say as a whole that food induced reactions are real and valid and need to be addressed. Nor do I want to suffer while waiting for this sudden realization. I'm not crazy about limiting my diet (I don't know anyone who'd choose this for the fun of it) but its a whole lot better to eat a few simple, prepared from scratch foods than it is to require a bottle of pain killers to function on an okay basis.
Regardless of what the gold standard testings have revealed, I don't have atypical rosacea, unresponsive IBS, abdominal pain of unknown origin, possible fybromyalgia, chronic fatigue, "Huh, thats weird," "Just stress," or "How interesting". I have symptoms which are clearly linked to the ingestion of certain foods. I don't know the best way to define these reactions. I'm not sure my doctors do either (though at least they were the ones to diagnose me, and support my belief that corn is the main culprit, they also diagnosed me with celiac disease; another food related illness that does not fall under the title of "allergy" but prior to diagnosis could be suspected as a wheat allergy) But they say allergy is the best description we currently have.
I think that we are in need of a new branch of medical science. A new Doctor with a specialty in food mediated illness. One who can dabble in diabetes, be up to date in celiac research, and be consulted for rashes, GI troubles, asthma and any other symptom that doesn't seem to have a direct cause. Or if the direct cause appears to be food related, but the symptom isn't life threatening. (For that matter...they might specialize in the life threatening reactions as well.)
There are very few studies done beyond anaphylaxis or lactose intolerance. And yet, those studies that are done and are on pubmed such as this one indicate that food can be the culprit of pain and symptoms without being a classic IgE allergy.
We know not to eat what hurts us. But, how do we know whats hurting us? How do we know whats really in the foods we eat? Corn is an eye opener. It can be on waxed fruit, in enriched rice, it can even leach into water from degrading "environmentally friendly" water bottles. What else is out there that is hurting someone and they just can't figure out what it is? Without validation from the medical community, we can't fight for full disclosure. We can't trust doctors and hospitals when we're sick. This post highlights the dangers for corn allergic individuals (although the poster is actually anaphylactic, and requires an epi pen) And what about other allergies? I've heard from numerous people with Celiac disease horror stories of being in a hospital, or donating blood and being in a situation of semi conscioussness when they could remember enough to say "I have celiac disease" and the nurses will say "we know" and hand them crackers. Or toast. Or cookies, to raise their blood sugar. And being dazed, in a position of dependancy, the patient will obligingly nibble...assuming that this is what is needed to get well. Until the cramps set in and pain brings them to the realization that their concerns were being blown off by caring individuals, and that the food they were told to eat "to get better" just poisoned them.
Something more needs to happen. And soon.
A friend of mine has two young kids who obviously react to traces of corn. She recently was priviliged to see a top allergist in the country. She was hopeful for answers, guidance, maybe if nothing else...some sort of explanation and if nothing else, some validation. As a parent, its scary to limit your child's diet. Especially without guidance from the medical community.
What she got was a slap in the face.
Those of us who have traced our painful symptoms to specific foods know that IgE allergies are life threatening. And that other "sensitivities" don't necessarily show up on food allergy tests. But we have done research and found studies that link our symptoms with food intolerances, or even allergies. Some of us are lucky enough to have allergists or gastroenterologists who have been around long enough to know that, regardless of current testing standards, some people have negative reactions to food. Foods can cause debillitating symptoms.
But this dr told my friend that her observations are not valid.
Of course...like any good parent, she will not harm her kids simply because the dr tells her to. She won't ignore their rashes and physical pain because this one specialist tells her they aren't really related to what they eat. (Just because it always happens when they eat specific items doesn't mean a thing.)
But this feels like a blow, not just to her but to all of us who find food as a definate trigger for physical symptoms.
This was a top specialist. One that other drs respect. An authority, if you will, on the subject of food allergies. And he doesn't believe in them, unless they kill you.
I don't know about you, the average reader who has stumbled upon my ramblings, but I don't want to die to prove a point. I don't want anyone to have to die, or come anywhere near it, to make the medical "community" say as a whole that food induced reactions are real and valid and need to be addressed. Nor do I want to suffer while waiting for this sudden realization. I'm not crazy about limiting my diet (I don't know anyone who'd choose this for the fun of it) but its a whole lot better to eat a few simple, prepared from scratch foods than it is to require a bottle of pain killers to function on an okay basis.
Regardless of what the gold standard testings have revealed, I don't have atypical rosacea, unresponsive IBS, abdominal pain of unknown origin, possible fybromyalgia, chronic fatigue, "Huh, thats weird," "Just stress," or "How interesting". I have symptoms which are clearly linked to the ingestion of certain foods. I don't know the best way to define these reactions. I'm not sure my doctors do either (though at least they were the ones to diagnose me, and support my belief that corn is the main culprit, they also diagnosed me with celiac disease; another food related illness that does not fall under the title of "allergy" but prior to diagnosis could be suspected as a wheat allergy) But they say allergy is the best description we currently have.
I think that we are in need of a new branch of medical science. A new Doctor with a specialty in food mediated illness. One who can dabble in diabetes, be up to date in celiac research, and be consulted for rashes, GI troubles, asthma and any other symptom that doesn't seem to have a direct cause. Or if the direct cause appears to be food related, but the symptom isn't life threatening. (For that matter...they might specialize in the life threatening reactions as well.)
There are very few studies done beyond anaphylaxis or lactose intolerance. And yet, those studies that are done and are on pubmed such as this one indicate that food can be the culprit of pain and symptoms without being a classic IgE allergy.
We know not to eat what hurts us. But, how do we know whats hurting us? How do we know whats really in the foods we eat? Corn is an eye opener. It can be on waxed fruit, in enriched rice, it can even leach into water from degrading "environmentally friendly" water bottles. What else is out there that is hurting someone and they just can't figure out what it is? Without validation from the medical community, we can't fight for full disclosure. We can't trust doctors and hospitals when we're sick. This post highlights the dangers for corn allergic individuals (although the poster is actually anaphylactic, and requires an epi pen) And what about other allergies? I've heard from numerous people with Celiac disease horror stories of being in a hospital, or donating blood and being in a situation of semi conscioussness when they could remember enough to say "I have celiac disease" and the nurses will say "we know" and hand them crackers. Or toast. Or cookies, to raise their blood sugar. And being dazed, in a position of dependancy, the patient will obligingly nibble...assuming that this is what is needed to get well. Until the cramps set in and pain brings them to the realization that their concerns were being blown off by caring individuals, and that the food they were told to eat "to get better" just poisoned them.
Something more needs to happen. And soon.
Friday, December 22, 2006
In response to a form letter
Dear Any Company,
I want to thank you for your informative response to my query about whether my allergens are contained in your food product.
I have spoken to my doctor. Many times. He continues to tell me to contact companies to verify whether or not my allergens, which are not all on the top 8 list created by the FDA, are contained in a food. He continues to inform me that if I get sick eating a food, that I should avoid eating any other foods including it as an ingredient, regardless of the "standards" in place regarding allergens. He continues to inform me that the only treatment is complete and total avoidance, and yet, that I need calories and in this society...that means the occassional prepackaged food.
I have contacted the companies you put me in touch with. They focus mainly on the top 8 allergens identified by the FDA. They do inform me that the top 8 are not the only allergens out there (Which I guessed, being a corn allergy sufferer) and that though they have very little info on my allergens, I should try contacting companies in order to protect myself.
I realize that you have careful allergy precautions in place. That is why I am hpopeful that I may be able to use your product. What I need to know...is do these precautions protect me from MY allergens? For I'm not a statistic. I'm a human, and although I'm not in the "most likely" group, I still have feelings, health, and physical needs.
Corn is not gluten. It is not Tree Nuts. It is not peanuts, or wheat, or dairy or eggs but it can be contained in any of the above. It is not shellfish, or fresh fish, or soy. Corn is considered hypoallergenic to many, although it causes severe reactions in just as many. It is also the most difficult allergy to isolate, and the most difficult allergen to avoid as it is found incidentally in so many products.
So I ask again. please, check with your suppliers...find the source of ingredients, and ask about the packaging process. Is it safe for me to eat your food?
Sincerely,
A statistically insignificant customer
I want to thank you for your informative response to my query about whether my allergens are contained in your food product.
I have spoken to my doctor. Many times. He continues to tell me to contact companies to verify whether or not my allergens, which are not all on the top 8 list created by the FDA, are contained in a food. He continues to inform me that if I get sick eating a food, that I should avoid eating any other foods including it as an ingredient, regardless of the "standards" in place regarding allergens. He continues to inform me that the only treatment is complete and total avoidance, and yet, that I need calories and in this society...that means the occassional prepackaged food.
I have contacted the companies you put me in touch with. They focus mainly on the top 8 allergens identified by the FDA. They do inform me that the top 8 are not the only allergens out there (Which I guessed, being a corn allergy sufferer) and that though they have very little info on my allergens, I should try contacting companies in order to protect myself.
I realize that you have careful allergy precautions in place. That is why I am hpopeful that I may be able to use your product. What I need to know...is do these precautions protect me from MY allergens? For I'm not a statistic. I'm a human, and although I'm not in the "most likely" group, I still have feelings, health, and physical needs.
Corn is not gluten. It is not Tree Nuts. It is not peanuts, or wheat, or dairy or eggs but it can be contained in any of the above. It is not shellfish, or fresh fish, or soy. Corn is considered hypoallergenic to many, although it causes severe reactions in just as many. It is also the most difficult allergy to isolate, and the most difficult allergen to avoid as it is found incidentally in so many products.
So I ask again. please, check with your suppliers...find the source of ingredients, and ask about the packaging process. Is it safe for me to eat your food?
Sincerely,
A statistically insignificant customer
Saturday, December 16, 2006
Its not just food
I have a food allergy. But some days, it feels like food allergy has me. For some, allergies are simple. Avoid the offending food. There are a few (or a multitude of) safe foods readily available. Once the offending food has been identified, you adjust and go on with your life.
But for me, my "allergy" goes beyond the norm. Avoiding the offending food has given me so much...and showed me how much this "allergy" took away. I never realised how much my life changed. 6 years ago, my symptoms began interfering with my life and the Doctors told me to take some time off, get a maid, relax. I was just completeing a college degree, so I did. Take time off that is. The maid was out of the question. I never dreamed that the few weeks I gave myself would turn into years.
I focused on my daughter, and called my spells stress. I quit going to restaurants because I didn't like racing for the bathroom midmeal (or wishing I could). I had spells at home, too, but they didn't make an impact since I could easily deal with them. I would bring a stack of books to bed and curl up with my kids and a heating pad. I encouraged my husband to go out to dinner with friends, and catch a movie afterwards, because I didn't want him to see me like that. (I playacted pretty well, too, he never really "got" what was wrong.) The movie theatre made me nausous, and gave me hot flashes that I attributed to stress or anxiety. I shopped around my body's symptoms. I dreaded appointments of any kind. I avoided eating when I could, or tried to snack all day. I sought the perfect diet, and said I'd feel better tomorrow.
And then, I cut out corn. Which led to cutting out gluten. I finally understood why someone might schedule dinner before the prom started (besides that masochist theory I held in High School) As I spend more pain free, or at least limited pain days, I find my mind clearing. I realise that walking around the block should not be a daunting task. And that I ought to be able to schedule volunteer time, or a birthday party without worrying what my body will do to me. Its not that I don't want to be there...I just don't want to feel my knees buckle beneath me, or the breath squeezed from my chest because I've pushed myself just a little too far. I especially don't want to reach the end of my limited rope in public. Again. And the fear is very real, based in experience. Its always harder to get over a rational fear than an irrational one.
I find myself frustrated with my physical limitations. I can feel energized and excited, but if I inadvertently pass my limits, I'm immediately reprimanded. Whether its nausea or starting to faint, its not pleasant. Yet, still I'm tempted to press my limits. Tempted, and terrified. Every so often, I still have a corn incident and lose half my progress. Some allergens hide, everywhere.
Whats worse, I find that it wasn't just me thats been affected. My family's been hurt. I avoided family celebrations because I was sick...years in a row. When I make it, now, they're surprised to see me. I tried not to let them see how bad I felt, until I collapsed. And its hard for them to understand why I don't just bounce back. I can't explain it, I don't think I understand it myself.
My husband, and our relationship, has suffered the most. As I look at myself through his eyes, I realize that he felt pushed away. To him, I was active as a mother, as a stay at home parent. Now the kids are growing and he doesn't understand why that energy doesn't switch back to other endeavors, the dreams we held in the beginning.
For me, its not just a food allergy. My way of life is different than the average Americans. My food is cooked mostly from scratch, if I'm running late on dinner, there is no drive through or pizza man to the rescue. Fostering friendships is a challenge, since in our society the "norm" is to go for a cup of coffee, or meet up for lunch. I still dread social eating, though if I'm careful it doesn't attack me.
I don't know if its "just" the physical reactions I have to food, my doctors insist they don't know. But I do know that allergies are not something to be blown off. Whether they require an epi pen to ward off fatal reactions or "just" cause symptoms, food allergies are real. And they impact so much more than what you can eat.
But for me, my "allergy" goes beyond the norm. Avoiding the offending food has given me so much...and showed me how much this "allergy" took away. I never realised how much my life changed. 6 years ago, my symptoms began interfering with my life and the Doctors told me to take some time off, get a maid, relax. I was just completeing a college degree, so I did. Take time off that is. The maid was out of the question. I never dreamed that the few weeks I gave myself would turn into years.
I focused on my daughter, and called my spells stress. I quit going to restaurants because I didn't like racing for the bathroom midmeal (or wishing I could). I had spells at home, too, but they didn't make an impact since I could easily deal with them. I would bring a stack of books to bed and curl up with my kids and a heating pad. I encouraged my husband to go out to dinner with friends, and catch a movie afterwards, because I didn't want him to see me like that. (I playacted pretty well, too, he never really "got" what was wrong.) The movie theatre made me nausous, and gave me hot flashes that I attributed to stress or anxiety. I shopped around my body's symptoms. I dreaded appointments of any kind. I avoided eating when I could, or tried to snack all day. I sought the perfect diet, and said I'd feel better tomorrow.
And then, I cut out corn. Which led to cutting out gluten. I finally understood why someone might schedule dinner before the prom started (besides that masochist theory I held in High School) As I spend more pain free, or at least limited pain days, I find my mind clearing. I realise that walking around the block should not be a daunting task. And that I ought to be able to schedule volunteer time, or a birthday party without worrying what my body will do to me. Its not that I don't want to be there...I just don't want to feel my knees buckle beneath me, or the breath squeezed from my chest because I've pushed myself just a little too far. I especially don't want to reach the end of my limited rope in public. Again. And the fear is very real, based in experience. Its always harder to get over a rational fear than an irrational one.
I find myself frustrated with my physical limitations. I can feel energized and excited, but if I inadvertently pass my limits, I'm immediately reprimanded. Whether its nausea or starting to faint, its not pleasant. Yet, still I'm tempted to press my limits. Tempted, and terrified. Every so often, I still have a corn incident and lose half my progress. Some allergens hide, everywhere.
Whats worse, I find that it wasn't just me thats been affected. My family's been hurt. I avoided family celebrations because I was sick...years in a row. When I make it, now, they're surprised to see me. I tried not to let them see how bad I felt, until I collapsed. And its hard for them to understand why I don't just bounce back. I can't explain it, I don't think I understand it myself.
My husband, and our relationship, has suffered the most. As I look at myself through his eyes, I realize that he felt pushed away. To him, I was active as a mother, as a stay at home parent. Now the kids are growing and he doesn't understand why that energy doesn't switch back to other endeavors, the dreams we held in the beginning.
For me, its not just a food allergy. My way of life is different than the average Americans. My food is cooked mostly from scratch, if I'm running late on dinner, there is no drive through or pizza man to the rescue. Fostering friendships is a challenge, since in our society the "norm" is to go for a cup of coffee, or meet up for lunch. I still dread social eating, though if I'm careful it doesn't attack me.
I don't know if its "just" the physical reactions I have to food, my doctors insist they don't know. But I do know that allergies are not something to be blown off. Whether they require an epi pen to ward off fatal reactions or "just" cause symptoms, food allergies are real. And they impact so much more than what you can eat.
Sunday, September 03, 2006
Foods to live for
Five foods to live for
Well, I haven't exactly been tagged, nor have I ever participated in a meme before (I admit, I had to actually look up the rules for the game) but I read the challenge in one of my favorite blogs Gluten Free Goddess and it resonated. I want to play too!
Its not as simple as listing a few of my favorite foods. You see, like Karina (the Gluten Free Goddess) my life has changed drastically, and that change centers around food. Some of the foods I think no one should live a lifetime without tasting, I will never eat again.
Sourdough bread, fresh from the bakery, eaten from the bag on Fishermans wharf. A sundae (oh, or banana split) on ghiradelli square enjoyed while watching the machinery run. French fries, hot and salty and thick, from an amusement park vendor. A watermelon smoothie from jamba juice. Homemade oatmeal.
I'll stop now, before I start feeling sorry for myself. Or nauseous. You see, with a variety of food restrictions...those things don't really appeal to me anymore. The real pleasures came in the form of spontaneity. Eating out on a whim, exciting the taste buds was part of an excursion or a lovely end to a lovely day.
Now, I bring rice cakes.
I've discovered the pleasures of simplicity.
A poached pear, not steeped in wines or sherries or exotic sauces. Simply steamed until its ready to collapse...but hasn't yet, served with a slice of good cheddar cheese...or if I'm feeling decadent, a small piece or two of Rapunzel chocolate can be divine.
A platter of Tinkyada rice pasta, drizzled with grapeseed oil and some curry seasoning and topped with a fried egg is a far cry from gourmet indulgence, but makes for delightful comfort food.
Ceres juice...like sipping nectar.
Panderos delites cookies. They are gluten free, a simple shortbread melt-in-your-mouth bottle-cap sized cookie, that disappears quicker than thin mints.
And chocolate. As it says on the wrapper of one of my favorite chcolate bars (Dagoba roseberry, its corn free and gluten free) "You can deprive the body, but the soul needs chocolate."
I suppose if I had to pick, these are the foods I'd hate to live without. The ones I look forward to enjoying. But the past few years have taught me that enjoyment comes from much more than the food itself. The real requirement is that the food doesn't bite back (as wheat does for those with celiacs), that it can be savored (not craved, like potato chips which never really satisfy), and that it is enjoyed in good company, in a pleasant setting. I can learn to live without my favorite foods. And if it means getting to truly live, I can even be happy about it.
Well, I haven't exactly been tagged, nor have I ever participated in a meme before (I admit, I had to actually look up the rules for the game) but I read the challenge in one of my favorite blogs Gluten Free Goddess and it resonated. I want to play too!
Its not as simple as listing a few of my favorite foods. You see, like Karina (the Gluten Free Goddess) my life has changed drastically, and that change centers around food. Some of the foods I think no one should live a lifetime without tasting, I will never eat again.
Sourdough bread, fresh from the bakery, eaten from the bag on Fishermans wharf. A sundae (oh, or banana split) on ghiradelli square enjoyed while watching the machinery run. French fries, hot and salty and thick, from an amusement park vendor. A watermelon smoothie from jamba juice. Homemade oatmeal.
I'll stop now, before I start feeling sorry for myself. Or nauseous. You see, with a variety of food restrictions...those things don't really appeal to me anymore. The real pleasures came in the form of spontaneity. Eating out on a whim, exciting the taste buds was part of an excursion or a lovely end to a lovely day.
Now, I bring rice cakes.
I've discovered the pleasures of simplicity.
A poached pear, not steeped in wines or sherries or exotic sauces. Simply steamed until its ready to collapse...but hasn't yet, served with a slice of good cheddar cheese...or if I'm feeling decadent, a small piece or two of Rapunzel chocolate can be divine.
A platter of Tinkyada rice pasta, drizzled with grapeseed oil and some curry seasoning and topped with a fried egg is a far cry from gourmet indulgence, but makes for delightful comfort food.
Ceres juice...like sipping nectar.
Panderos delites cookies. They are gluten free, a simple shortbread melt-in-your-mouth bottle-cap sized cookie, that disappears quicker than thin mints.
And chocolate. As it says on the wrapper of one of my favorite chcolate bars (Dagoba roseberry, its corn free and gluten free) "You can deprive the body, but the soul needs chocolate."
I suppose if I had to pick, these are the foods I'd hate to live without. The ones I look forward to enjoying. But the past few years have taught me that enjoyment comes from much more than the food itself. The real requirement is that the food doesn't bite back (as wheat does for those with celiacs), that it can be savored (not craved, like potato chips which never really satisfy), and that it is enjoyed in good company, in a pleasant setting. I can learn to live without my favorite foods. And if it means getting to truly live, I can even be happy about it.
Saturday, September 02, 2006
The hidden risks in your own kitchen
Once we’d confirmed that food was the main culprit in my health problems, the kitchen became a very important place. I could no longer eat out. It was too risky. There was no “Oh rats, I burned dinner. Lets order pizza.” A burnt dinner meant dinner was a little on the crunchy side. And maybe a little extra dessert.
We also learned the hard way how important it was to clean out the kitchen and start new.
At first, I thought it would be okay to slowly weed out the things I couldn’t use. I tried to foist oatmeal off on the kids, but kept getting “just a little” sick each time I made it. I made cookies for the bake sale, thinking it was fine as long as I didn’t taste any. And managed to drop them off at the bake sale before high tailing it home to be near my own bath room.
My husband made rice. He stirred it with a wooden spoon and served to me before seasoning his own. I spent the rest of the night hugging a heating pad.
What went wrong? The problem is simply a matter of *cross contamination*. When baking with flour, have you ever noticed those cute little white smudges that appear on nose and cheeks, or little flour hand prints where you wipe your hands? Well, a few flecks of flour never hurt anyone who can eat the end product. Even if the flecks end up on a clean glass, or in a water cup, or transferred back to your hands when you dry them off before grabbing an apple, they are harmless. But, if you have celiac disease…or are allergic to the wheat or the corn in the vitamins used to enrich the wheat, those flecks of flour are dangerous.
For the newly diagnosed, there are many dangers lurking in the kitchen. When baking, I used to often use the same measuring spoons in all of my dry ingredients. Flour and sugar get mixed in the bowl, why not use the same measuring cup? But when I went gluten free…my 5 lb bag of sugar attacked me. Last time I had made cookies, I’d measured out the flour, then dipped the cup into the sugar. Likewise…many spices contained traces of baking powder (which contains corn starch). All opened baking ingredients had to go.
Another potential hazard comes from seasoned non stick bakeware. The lovely flavor that cast iron skillets are prized for comes from the foods that have been previously cooked in them. And why can’t you scrub them with soap? Because if you do, the food prepared in them later will taste of soap. For the general public, it’s a matter of taste. For those with food allergies, it’s a health hazard.
Anything porous is dangerous. Ever look very closely at a wooden spoon? They have all sorts of lovely nooks and crannies. Perfect spots for grains of flour, particles of corn syrup, or a bit of baking powder to hide. And be released later into a big pot of soup or stew. Pre used wooden utensils must go.
A great guide to de-contaminating the kitchen (This was designed for people with celiacs, but works for other food allergies as well) is found here: http://forums.delphiforums.com/celiac/messages?msg=34811.1
And a list of potential sources of cross contamination: (again, written with celiacs in mind, but a good basic guideline) : http://forums.delphiforums.com/celiac/messages?msg=32462.1
And one more: http://hubpages.com/t/299f99
We also learned the hard way how important it was to clean out the kitchen and start new.
At first, I thought it would be okay to slowly weed out the things I couldn’t use. I tried to foist oatmeal off on the kids, but kept getting “just a little” sick each time I made it. I made cookies for the bake sale, thinking it was fine as long as I didn’t taste any. And managed to drop them off at the bake sale before high tailing it home to be near my own bath room.
My husband made rice. He stirred it with a wooden spoon and served to me before seasoning his own. I spent the rest of the night hugging a heating pad.
What went wrong? The problem is simply a matter of *cross contamination*. When baking with flour, have you ever noticed those cute little white smudges that appear on nose and cheeks, or little flour hand prints where you wipe your hands? Well, a few flecks of flour never hurt anyone who can eat the end product. Even if the flecks end up on a clean glass, or in a water cup, or transferred back to your hands when you dry them off before grabbing an apple, they are harmless. But, if you have celiac disease…or are allergic to the wheat or the corn in the vitamins used to enrich the wheat, those flecks of flour are dangerous.
For the newly diagnosed, there are many dangers lurking in the kitchen. When baking, I used to often use the same measuring spoons in all of my dry ingredients. Flour and sugar get mixed in the bowl, why not use the same measuring cup? But when I went gluten free…my 5 lb bag of sugar attacked me. Last time I had made cookies, I’d measured out the flour, then dipped the cup into the sugar. Likewise…many spices contained traces of baking powder (which contains corn starch). All opened baking ingredients had to go.
Another potential hazard comes from seasoned non stick bakeware. The lovely flavor that cast iron skillets are prized for comes from the foods that have been previously cooked in them. And why can’t you scrub them with soap? Because if you do, the food prepared in them later will taste of soap. For the general public, it’s a matter of taste. For those with food allergies, it’s a health hazard.
Anything porous is dangerous. Ever look very closely at a wooden spoon? They have all sorts of lovely nooks and crannies. Perfect spots for grains of flour, particles of corn syrup, or a bit of baking powder to hide. And be released later into a big pot of soup or stew. Pre used wooden utensils must go.
A great guide to de-contaminating the kitchen (This was designed for people with celiacs, but works for other food allergies as well) is found here: http://forums.delphiforums.com/celiac/messages?msg=34811.1
And a list of potential sources of cross contamination: (again, written with celiacs in mind, but a good basic guideline) : http://forums.delphiforums.com/celiac/messages?msg=32462.1
And one more: http://hubpages.com/t/299f99
Monday, July 31, 2006
It's the gluten.
Once I started to get a handle on the corn free life I began to discuss it with other parents at my daughters school. I found others who were juggling dietary restrictions, or searching for answers through diet. A good friend was taking her son off of milk products and we watched, amazed at his progress as he began making eye contact and initiating conversations. She was also looking into going gluten free, something I was adamently against trying (for myself, anyways). Corn free was hard enough. I was not about to put MORE restrictions on my diet.
But, the fact was I'd hit a plateau. I still didn't feel up to volunteering in the classroom (Who would? If you never know when you might need to make a very quick exit.) There were still days I'd take extra pain killers to try and keep the cramping quiet while I ran to the school just to pick up my daughter and come home. I still mapped my day keeping a close eye on bathroom access. (Honestly, I don't think that will ever fade. No matter how well I feel the first thing I do in a new place is map my nearest escape route. Its oddly comforting to know there's one less step should the worst happen.)
"It's the gluten," she'd stage whisper as I tried to surreptitiously massage my bloated abdomen. I smiled. I laughed. I adamately disagreed. I loved wheat. I was blessed to tolerate wheat. I needed, it, right? Oatmeal was stabilizing. I'd wake up each morning, avoid eating until I was ravenous, and then eat every 10-15 minutes to keep the symptoms at bay. This was life with IBS, I told myself. This is normal for me.
My doctor raised her eyebrows, flinching at the loud protests my stomach made during an exam. "You must be starving!" Er, no, I just polished off a box of whole wheat crackers. I commented that my mouth had started tingling each time I ate certain products, and she sent me to an allergist. "It's not wheat," I assured him. The scratch tests confirmed I wasn't allergic to wheat. We had a long talk about celiac disease. He wanted me to go grain free/gluten free for a trial period. If I improved, I'd get tested. (This was poor planning, but thats for another post) It seemed like an awful lot of effort. And I knew, really, truly, gluten wasn't the trouble. Really. Probably.
"It's the gluten," my friend whispered again that afternoon. I laughed, but not quite so convincingly. Doubts were creeping in. Everything I read on the subject had an uncomfortable air of familiarity about it. Corn was hard enough to give up. I wouldn't do it. Giving up pasta, and pancakes and muffins was simply too much to ask. I couldn't do it. "I'm just saying..." she shrugged, "It's worth a shot."
Finally I had to admit it. I just didn't feel...well. I needed to do...something. At any rate, I needed to prove once and for all that it wasn't the gluten. So I went gluten free.
When I started feeling better, I told myself it was a coincidence. "It's not the gluten," I told myself, when I noticed my waistband was still comfortable at bedtime. "It's not gluten," I remarked under my breath when I realized after an extra long day, that I'd had no emergency pit stops. "It's not the gluten," I said, eyeing the remains of my family's favorite banana spelt bread.
And even if it is, spelt doesn't have that much gluten in it, right?
And then I knew once and for all. It was the gluten.
Rats.
But, the fact was I'd hit a plateau. I still didn't feel up to volunteering in the classroom (Who would? If you never know when you might need to make a very quick exit.) There were still days I'd take extra pain killers to try and keep the cramping quiet while I ran to the school just to pick up my daughter and come home. I still mapped my day keeping a close eye on bathroom access. (Honestly, I don't think that will ever fade. No matter how well I feel the first thing I do in a new place is map my nearest escape route. Its oddly comforting to know there's one less step should the worst happen.)
"It's the gluten," she'd stage whisper as I tried to surreptitiously massage my bloated abdomen. I smiled. I laughed. I adamately disagreed. I loved wheat. I was blessed to tolerate wheat. I needed, it, right? Oatmeal was stabilizing. I'd wake up each morning, avoid eating until I was ravenous, and then eat every 10-15 minutes to keep the symptoms at bay. This was life with IBS, I told myself. This is normal for me.
My doctor raised her eyebrows, flinching at the loud protests my stomach made during an exam. "You must be starving!" Er, no, I just polished off a box of whole wheat crackers. I commented that my mouth had started tingling each time I ate certain products, and she sent me to an allergist. "It's not wheat," I assured him. The scratch tests confirmed I wasn't allergic to wheat. We had a long talk about celiac disease. He wanted me to go grain free/gluten free for a trial period. If I improved, I'd get tested. (This was poor planning, but thats for another post) It seemed like an awful lot of effort. And I knew, really, truly, gluten wasn't the trouble. Really. Probably.
"It's the gluten," my friend whispered again that afternoon. I laughed, but not quite so convincingly. Doubts were creeping in. Everything I read on the subject had an uncomfortable air of familiarity about it. Corn was hard enough to give up. I wouldn't do it. Giving up pasta, and pancakes and muffins was simply too much to ask. I couldn't do it. "I'm just saying..." she shrugged, "It's worth a shot."
Finally I had to admit it. I just didn't feel...well. I needed to do...something. At any rate, I needed to prove once and for all that it wasn't the gluten. So I went gluten free.
When I started feeling better, I told myself it was a coincidence. "It's not the gluten," I told myself, when I noticed my waistband was still comfortable at bedtime. "It's not gluten," I remarked under my breath when I realized after an extra long day, that I'd had no emergency pit stops. "It's not the gluten," I said, eyeing the remains of my family's favorite banana spelt bread.
And even if it is, spelt doesn't have that much gluten in it, right?
And then I knew once and for all. It was the gluten.
Rats.
Sunday, July 30, 2006
The Journey
Going corn free sounded easy. We stopped buying corn chips, I stopped making that "healthy" polenta. I avoided popcorn and corn on the cob.
Since we were also, at the time, learning to live with a nut allergy in the house I was cooking a lot of food from scratch. There are nut warnings on a LOT of packaged foods. I was feeling better.
When my oldest daughter started school, I began looking harder for prepackaged foods. We would have mac and cheese, pizza, packaged cookies. There wasn't as much time for cooking, or shopping. Slowly my IBS was getting worse again. I went to the dr and was given Bentyl. That made things worse, so I went back. She thought for awhile, then shrugged and suggested I try giving up things I'd previously thought were safe...like corn syrup.
I cried. I thought she was giving up on me.
Then I squared my shoulders and decided if that was her only idea, I would go totally corn free and *prove* that corn was not the culprit. I needed a cure. I needed to be well. I had two kids and was running out of fun ideas to do while curled up with a heating pad.
I went shopping, both kids tucked into the cart, and began reading labels. Halfway down the cereal aisle they started fussing and I began to cry again. There was nothing there that I could eat. It all listed corn syrup or corn starch.
A few months later it was apparent that corn definately played a major part in my IBS. I didn't want to admit it, but it was true. The trouble was, I was still having some unexplainable problems. I picked up a bottle of motrin one day to help quiet the cramps and noticed the words "corn starch" on the label. That helped, some.
I began to notice patterns, and slowly eliminated other foods that bothered me although I didn't know why. Microcrystalline Cellulose? Citric Acid? Modified food starch? Xanthan gum? What could those have in common? How many additives can someone be allergic to? (Don't ask, it only tempts fate.) A websearch held the answer. According to the list at http://www.cornallergens.com all of the above can be derived from...CORN.
I was still wary until I decided to just start contacting companies. I bought a small package of cheese and was fine after eating it. So I found a larger loaf of the same exact brand of cheese and bought it, trying to save money. I blew up like a balloon after the first slice. The next day I ate the last of the small loaf. I was fine. I contacted the company, figuring this proved once and for all there was more than just a food allergy at work.
I told the customer service rep that this probably sounded crazy, but I was fine when I ate the small loaf of cheese and got really sick after eating a slice of the larger loaf. He had to call me back. When he did, the answer made me sit down, hard. The only difference between the two sizes was that the larger loaf is dusted in corn starch to prevent it sticking to the packaging. They did not feel this was a significant issue, especially since corn is not a common allergen.
It was a month later that I began reacting to a cereal I *knew* had been safe previously. I called the company again. "There's no chance that there could be some sort of corn in here, is there?"
They eventually got back to me. They'd switched suppliers of their Vitamin E. The new supplier used a small amount of corn starch. They did not consider this to be a significant concern, but of course I should consult my dr.
I didn't need to consult my dr to know I was reacting I ate, and felt better if I didn't. I didn't need help deciding not to eat food that bothered me.
I did need her help figuring out what on Earth I could eat, if corn was hidden everywhere. Unfortunately, she was as surprised as myself to discover corn was EVERYWHERE. I've spent the 3 years since researching this frustrating allergy and learning that there really is very little known about it. But there are others suffering from the same thing.
We've all been told it was stress, in our heads, ridiculous. We've told ourselves the same thing. But in the end...it turns out that for at least part of the population, corn is evil. It causes everything from migraines to IBS. It complicates celiac disease (guess what they replace gluten with in baked goods?) Its in the medecine we use to try and feel better, or at least function in society. And its hidden. Even the food companies don't always recognize corn derived ingredients.
In my web journeys, what gets to me the most are the desperate parents. Women who have weaned their children b/c they seemed to react to everything from rice (which can contain corn starch in the vitamins dusted on top) to soda pop. Even certain fruits can be waxed with a corn based substance. (Don't forget, corn can be organic and is all natural. Its just corn, after all.) At the end of their ropes, these women have turned to formula in an attempt to isolate the issue. Is it milk proteins? Soy? And it turns out to be corn. Or worse, corn and milk. There is one formula on the market that does not contain corn...and it contains milk.
What would you do if there were nothing you could feed your child without hurting them? How do you find the money to have a formula specially created just for your kid? And should the insurance company pay for it? After all, what choice do you have?
I can't help but wonder how many never figure it out. How many colicky babies are just suffering from corn allergy. Or intolerance. Or an immune reaction that hasn't been identified yet.
We need to know whats in our foods. And we need to escape the concept that "just a little won't hurt," or "What you don't know can't hurt you."
At 5'6", weighing in at 106 lbs (due to food intolerances, NOT choice) I can say, definitively, that what you don't know can hurt. A lot.
Since we were also, at the time, learning to live with a nut allergy in the house I was cooking a lot of food from scratch. There are nut warnings on a LOT of packaged foods. I was feeling better.
When my oldest daughter started school, I began looking harder for prepackaged foods. We would have mac and cheese, pizza, packaged cookies. There wasn't as much time for cooking, or shopping. Slowly my IBS was getting worse again. I went to the dr and was given Bentyl. That made things worse, so I went back. She thought for awhile, then shrugged and suggested I try giving up things I'd previously thought were safe...like corn syrup.
I cried. I thought she was giving up on me.
Then I squared my shoulders and decided if that was her only idea, I would go totally corn free and *prove* that corn was not the culprit. I needed a cure. I needed to be well. I had two kids and was running out of fun ideas to do while curled up with a heating pad.
I went shopping, both kids tucked into the cart, and began reading labels. Halfway down the cereal aisle they started fussing and I began to cry again. There was nothing there that I could eat. It all listed corn syrup or corn starch.
A few months later it was apparent that corn definately played a major part in my IBS. I didn't want to admit it, but it was true. The trouble was, I was still having some unexplainable problems. I picked up a bottle of motrin one day to help quiet the cramps and noticed the words "corn starch" on the label. That helped, some.
I began to notice patterns, and slowly eliminated other foods that bothered me although I didn't know why. Microcrystalline Cellulose? Citric Acid? Modified food starch? Xanthan gum? What could those have in common? How many additives can someone be allergic to? (Don't ask, it only tempts fate.) A websearch held the answer. According to the list at http://www.cornallergens.com all of the above can be derived from...CORN.
I was still wary until I decided to just start contacting companies. I bought a small package of cheese and was fine after eating it. So I found a larger loaf of the same exact brand of cheese and bought it, trying to save money. I blew up like a balloon after the first slice. The next day I ate the last of the small loaf. I was fine. I contacted the company, figuring this proved once and for all there was more than just a food allergy at work.
I told the customer service rep that this probably sounded crazy, but I was fine when I ate the small loaf of cheese and got really sick after eating a slice of the larger loaf. He had to call me back. When he did, the answer made me sit down, hard. The only difference between the two sizes was that the larger loaf is dusted in corn starch to prevent it sticking to the packaging. They did not feel this was a significant issue, especially since corn is not a common allergen.
It was a month later that I began reacting to a cereal I *knew* had been safe previously. I called the company again. "There's no chance that there could be some sort of corn in here, is there?"
They eventually got back to me. They'd switched suppliers of their Vitamin E. The new supplier used a small amount of corn starch. They did not consider this to be a significant concern, but of course I should consult my dr.
I didn't need to consult my dr to know I was reacting I ate, and felt better if I didn't. I didn't need help deciding not to eat food that bothered me.
I did need her help figuring out what on Earth I could eat, if corn was hidden everywhere. Unfortunately, she was as surprised as myself to discover corn was EVERYWHERE. I've spent the 3 years since researching this frustrating allergy and learning that there really is very little known about it. But there are others suffering from the same thing.
We've all been told it was stress, in our heads, ridiculous. We've told ourselves the same thing. But in the end...it turns out that for at least part of the population, corn is evil. It causes everything from migraines to IBS. It complicates celiac disease (guess what they replace gluten with in baked goods?) Its in the medecine we use to try and feel better, or at least function in society. And its hidden. Even the food companies don't always recognize corn derived ingredients.
In my web journeys, what gets to me the most are the desperate parents. Women who have weaned their children b/c they seemed to react to everything from rice (which can contain corn starch in the vitamins dusted on top) to soda pop. Even certain fruits can be waxed with a corn based substance. (Don't forget, corn can be organic and is all natural. Its just corn, after all.) At the end of their ropes, these women have turned to formula in an attempt to isolate the issue. Is it milk proteins? Soy? And it turns out to be corn. Or worse, corn and milk. There is one formula on the market that does not contain corn...and it contains milk.
What would you do if there were nothing you could feed your child without hurting them? How do you find the money to have a formula specially created just for your kid? And should the insurance company pay for it? After all, what choice do you have?
I can't help but wonder how many never figure it out. How many colicky babies are just suffering from corn allergy. Or intolerance. Or an immune reaction that hasn't been identified yet.
We need to know whats in our foods. And we need to escape the concept that "just a little won't hurt," or "What you don't know can't hurt you."
At 5'6", weighing in at 106 lbs (due to food intolerances, NOT choice) I can say, definitively, that what you don't know can hurt. A lot.
Friday, July 28, 2006
The Beginning
It was sometime in my early teens that things began, slowly. I noticed that I felt horrible at the movie theatre. We figured it was stress of some sort. Then I realized that sodas were bothering me, and stopped drinking them or any other carbonated soft drink. I knew that eating hurt, but I didn't know that it was abnormal. I just assumed I didn't deal with it as well as other people.
When I was 18, I graduated and was enrolling in college. I was told I needed to get the hep B vaccine. That night I felt awful. Not just dizzy, but nauseous. I decided to go out, anyways, and ended up laying down on a grassy area with my confused friends sitting around me. Eventually the cramping passed enough that I managed to drop them all off somewhere and get home. My mom and I were told it was just a side effect from the vaccine. Except, it kept happening.
I refused to eat out, ever. I brought my own food to other people's houses or waited to eat until it was almost time to leave. I had my first baby, and the all day and night "morning" sickness did not help this food phobia. I still ate...and I still ate junk food. In mass quantities. French fries didn't bother me, and bread seemed to help mask the discomfort, at least if I ate frequently. I couldn't get hungry or the cramps would start again.
I developed what was termed "rosacea". It was a nasty, blistering, bleeding rash over my face. It did not respond to treatment. The only times it improved were when I was too sick to eat. But I didn't make the connection. I'd sleep with socks on my hands so I wouldn't scratch. I gave up on make up and treatment options, and the tolerance factor improved marginally. It still looked bad, though.
I was labelled with IBS, and PCOS. During my menses, the cramping was unbearable and I would take up to 800 mg of motrin at a time. This was prescribed...I wasn't just taking chances. That would take the edge off enough for me to sleep. Usually on the bathroom floor because I'd also developed incontinence at times. Did I mention I was only 23? My new dr said this was normal with IBS.
I got pregnant with my second child sometime around my experiments with vegan macrobiotic cooking. I figured there had to be a food connection, and macrobiotics sounded like a good way to get my gut back under control. I thought it helped a little, but some of the foods (like polenta) really did a number to my stomach. My newest dr said I probably just needed time to get used to this new, healthier way of eating.
When I went in for the glucose tolerance test things took a turn for the worse. I felt like my gut had been ripped open. I could actually feel the length of my intestinal tract, and it felt like it was on fire. My mouth erupted into sores. I was told I just wasn't used to so much sugar. (The test results were 80. by the way. Phenomenally good, I'm told.) When the pressure, cramping, and general burning persisted I was told it was stress. And life was pretty stressful.
After the baby was born. I had periods of extreme nausea and dizziness. My arms would go numb. The world would darken. I could feel my heart pounding in my chest, and it was hot...so miserably hot, as if a huge hot air balloon had just opened over me. It was stress, and maybe anemia.
After all, this baby wasn't a happy contented baby like my first. This one screamed. She screamed herself blue in the face, and then got louder. She arched her back and kicked her legs, and nursing only made it worse.
The funny thing was...she woke up happy as a lark. She just hated nursing. A food diary soon led me to the culprit...nuts. We ditched all nuts in the house, and a new baby appeared. One that laughed and snuggled and didn't cry herself to sleep.
The results were so astounding, we began to wonder if food could help my older dd's headaches. We couldn't find a connection with a food diary, so we began an elimination diet. No dairy...no effect. No chocolate...no effect. No corn...Well, thats strange, she still had headaches, but my rosacea disappeared.
And so...the journey began.
When I was 18, I graduated and was enrolling in college. I was told I needed to get the hep B vaccine. That night I felt awful. Not just dizzy, but nauseous. I decided to go out, anyways, and ended up laying down on a grassy area with my confused friends sitting around me. Eventually the cramping passed enough that I managed to drop them all off somewhere and get home. My mom and I were told it was just a side effect from the vaccine. Except, it kept happening.
I refused to eat out, ever. I brought my own food to other people's houses or waited to eat until it was almost time to leave. I had my first baby, and the all day and night "morning" sickness did not help this food phobia. I still ate...and I still ate junk food. In mass quantities. French fries didn't bother me, and bread seemed to help mask the discomfort, at least if I ate frequently. I couldn't get hungry or the cramps would start again.
I developed what was termed "rosacea". It was a nasty, blistering, bleeding rash over my face. It did not respond to treatment. The only times it improved were when I was too sick to eat. But I didn't make the connection. I'd sleep with socks on my hands so I wouldn't scratch. I gave up on make up and treatment options, and the tolerance factor improved marginally. It still looked bad, though.
I was labelled with IBS, and PCOS. During my menses, the cramping was unbearable and I would take up to 800 mg of motrin at a time. This was prescribed...I wasn't just taking chances. That would take the edge off enough for me to sleep. Usually on the bathroom floor because I'd also developed incontinence at times. Did I mention I was only 23? My new dr said this was normal with IBS.
I got pregnant with my second child sometime around my experiments with vegan macrobiotic cooking. I figured there had to be a food connection, and macrobiotics sounded like a good way to get my gut back under control. I thought it helped a little, but some of the foods (like polenta) really did a number to my stomach. My newest dr said I probably just needed time to get used to this new, healthier way of eating.
When I went in for the glucose tolerance test things took a turn for the worse. I felt like my gut had been ripped open. I could actually feel the length of my intestinal tract, and it felt like it was on fire. My mouth erupted into sores. I was told I just wasn't used to so much sugar. (The test results were 80. by the way. Phenomenally good, I'm told.) When the pressure, cramping, and general burning persisted I was told it was stress. And life was pretty stressful.
After the baby was born. I had periods of extreme nausea and dizziness. My arms would go numb. The world would darken. I could feel my heart pounding in my chest, and it was hot...so miserably hot, as if a huge hot air balloon had just opened over me. It was stress, and maybe anemia.
After all, this baby wasn't a happy contented baby like my first. This one screamed. She screamed herself blue in the face, and then got louder. She arched her back and kicked her legs, and nursing only made it worse.
The funny thing was...she woke up happy as a lark. She just hated nursing. A food diary soon led me to the culprit...nuts. We ditched all nuts in the house, and a new baby appeared. One that laughed and snuggled and didn't cry herself to sleep.
The results were so astounding, we began to wonder if food could help my older dd's headaches. We couldn't find a connection with a food diary, so we began an elimination diet. No dairy...no effect. No chocolate...no effect. No corn...Well, thats strange, she still had headaches, but my rosacea disappeared.
And so...the journey began.
Wednesday, May 10, 2006
Just thinking out loud
I made SCD banana pancakes today. I think the trick is to add an extra egg, and keep the heat low. I'm not good at keeping the heat low.
I guess I'm just not very patient. It comes from growing up in a microwave age, perhaps. My husband is not very patient either, at least when it comes to cooking. I can't tell you how many pasta dinners have been ruined because he sees the water boiling and decides it must be time to drain the pasta. Al dente and crunchy are very, very different things. And no, you can't throw half cooked spagghetti back into a pot with new water and just keep cooking it. It might get soft. It does not taste good.
Of course, if we are going to give the SCD a real try, there will be no more spagghetti.
I could give up pasta, even rice pasta, if it meant feeling WELL. But, what if it doesn't work? How does one know when to start adding food back? How does one know which foods are safe and which aren't? And what does one do when one is allergic to the stuff pharmaceutical companies use to stick OTC comfort drugs (like tylenol and motrin and digestive aids) together?
It certainly makes it a lot more difficult to try anything new. Or anything old for that matter.
I guess I'm just not very patient. It comes from growing up in a microwave age, perhaps. My husband is not very patient either, at least when it comes to cooking. I can't tell you how many pasta dinners have been ruined because he sees the water boiling and decides it must be time to drain the pasta. Al dente and crunchy are very, very different things. And no, you can't throw half cooked spagghetti back into a pot with new water and just keep cooking it. It might get soft. It does not taste good.
Of course, if we are going to give the SCD a real try, there will be no more spagghetti.
I could give up pasta, even rice pasta, if it meant feeling WELL. But, what if it doesn't work? How does one know when to start adding food back? How does one know which foods are safe and which aren't? And what does one do when one is allergic to the stuff pharmaceutical companies use to stick OTC comfort drugs (like tylenol and motrin and digestive aids) together?
It certainly makes it a lot more difficult to try anything new. Or anything old for that matter.
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