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.


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 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 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 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...

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 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 effect. No effect. No corn...Well, thats strange, she still had headaches, but my rosacea disappeared.

And so...the journey began.