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.

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.

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.

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.

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.

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.

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!

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.

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.