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

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.

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.

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

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.

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.

Maybe its just stress...

Maybe its just stress...

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.

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.

First Entry

Everyone talks about Blogging. Its fun, its exciting, do you have a blog?

Um, no. I'm not sure what to focus it on. I don't know what to write about. I have WAY too much to write about. (Should I start with my daughters migraines? Or the journey into food allergies? Or escape from the inescapable IBS? Or maybe something simple, scrapbooking? Parenting? Living on a shoestring in a gold chain society? What of my many passions? And what if I get bored and decide to change my focus?) I love writing. I love sharing my research, whatever it is I'm researching at the moment. But a whole Blog? About...What? My research tends to change as my needs for it do.

But then, a phrase jumped out at me. Its one I hear all the time, and I'm not sure why I didn't think of it sooner.

The one root cause of all of society's problems (no, its not money, nor the love of money.) Stress. Got a headache? Its just stress. A cold? Stress'll do that to you. Can't find your car keys? You know, you're just too stressed out. Car won't start? Ease up a little, too much stress on the clutch. Even the Drs are getting in on the action. If I had a dime for every Stress diagnosis I've been given for myself or my kids (better yet, the $20 dollar copay they charged for it) I could probably put myself through med school. Then I'd be legally able to diagnose myself! With, er, Stress, of course.

So, thats how I came up with the title for this Blog. I may write about anything, now that the hard part is over. I may write about nothing. But now, you all know. Its just 'cause I'm stressed. ;)