Gluten for Punishment

My sick mind is a powerful being.

Three weeks ago, in what was an otherwise ordinary checkup, I heard both ‘you’re anemic’ and ‘symptoms suggestive of celiac disease’. Because I am so fond of overreacting, I decided to eliminate gluten from my diet immediately. Celiac disease can cut up to 10 years off of your life, and in 60% of adult cases, celiacs have no symptoms. Since it is very easy to ignore a disease that makes no noise, I decided on a preemptive attack. Cut out the amber waves and bring back the villi! My small intestines, my weakening bones and my teeny red blood cells would all celebrate with me.

This proved harder than I imagined. First of all, much like celiac disease, gluten is everywhere. A sticky protein substance found in wheat, barley and rye, it is literally the ‘glue’ that holds processed foods together. When not playing a poison on TV, it’s a great fiber source, a base for any kind of bread or baked good, and sometimes used as a dusting on conveyor belts to keep items clean. An instance of 5 parts per billion can be enough to cause a reaction, though, so in order for a food to get the prized gluten-free label, it must not only be gluten-free, but also be manufactured in plants that separate the celiac foods from the gluten-made.

Soy sauce has gluten in it. So does Cool Whip, reduced fat sour cream, and the calcium supplements I’m taking to overcome my early-onset bone thinning. Howard is still unemployed, so now is not the time to be tossing out good food or spending $12 for gluten-free “Cheerinos”. Ten extra years of life is worth it, though, and from what I can tell, there’s no downside to removing gluten from my diet. There’s more calories in corn-based items, but again, I’d rather be 2 pounds heavier than dead. So if it means I have my stir-fry without garnish, and with rice instead of couscous, then I’m ok to try it for a while.

Celiac Treatment #1: Destroy Everyone Else’s Vacation
We were in Florida that next week. My poor in-laws; uprooted from their routine whenever we come down and now I have to shoo away all flour-like entities from the kitchen. You can’t even cook on the same surface where a flour-dusted item once lay. Forget the fat-free fudge pudding, the Reduced Fat Nilla Wafers and those yummy tortillas we can only find in Florida. The grandparents were really cool about it, and in fact, the corn tortillas we had for lunch on the second day were way better than the flour tortillas I’d been eating for the last 2 years. But still, I felt supremely guilty.

Something happened. I started to feel really good. I had a couple of days where I ate too many prunes (to counteract my reduced fiber intake) and crimped up my inside for a while. And then I took my vitamins before breakfast one day, and all the nasties of empty stomach/gelatin capsules mélange struck me and I was decommissioned for about 3 hours. Seriously, don’t ever do that. I really thought I was going to do an Alien stomach eruption. But once I stopped trying to destroy myself, I felt great. The teenage skin that has never left my face or my shoulders cleared up. I had this feeling of thinness in my tummy that I never had, even at my lightest weight. I was pretty tired, but we’re more active in Florida than at home and I figured the iron deficiency was working against me as well. I slept more than I expected to, but when I was awake and not poisoning myself, I felt awesome. Maybe gluten-free was the path to high energy health.

Celiac Treatment #2: Go off-program to prove illness
Seven days into the new diet, I found out that you’re not supposed to go gluten-free until after the screening test. Apparently the telltale sign of a celiac is a high level of gluten antigens. So if you stop eating gluten, the antigens will go down and you’ll look healthy when you’re not. So with only 2 days left to the test I sprinkled a generous amount of wheat germ on my dinner and then had some more in my cool whip-topped fruit for dessert.

And then I had a reaction. Not a doubled-over, wailing in pain reaction, but my face got flushed and kind of prickly. I was warm all over, and I had jumbling noises in my abdomen into the night. By morning the redness had lessened, but it was still there, and when I put more wheat germ on my eggs, it came right back. Freaked out and horrified by my face, I didn’t do any more wheat germ that day. I figured 2 large doses and a skin reaction would be enough.

My doc told me it would be a week or more before the test results came back. But, as is usual in the case of this new dude, I had results in 2 days. I still have anemia, but it’s improving. My celiac screen was clear.

Clear that I have celiac? Well, no. All antigens came back negative. I do not have celiac.

So what was all that noise back there? Clearly my body reacted to something over the weekend.

Celiac Treatment #3: Be Sick Anyway
I had another reaction at lunch today. I ate a bit of the mayonnaise (has gluten) and now my stomach is upset. So either I’m a complete goon-head and am mucking up my own health in my brain, or I really do have celiac and I hosed up my initial opportunity to uncover it. They should biopsy the crazy part of my brain. Though there would be no point-clearly I’m certifiable. No reactions at all until Celiac was suggested; now they are everywhere. And I still think I’m diseased even though the test came back negative. Sometimes it’s just exhausting being me.

The only real determinant of celiac disease is the small intestine biopsy. Apparently the blood screening is good for confirming the disease but not particularly reliable for an unqualified yes, especially if the disease is mild to begin with. Up to 30% false negative, if, like other celiacs, I am abnormally low in a particular gluten antigen. So even if it’s elevated it would show normal or even negative. I talked to the specialist’s office and they are clearly skeptical. Looks like I might get the periscope-down-the-throat treatment after all. Not my idea of a good time, but hey, if they give me Versed, I won’t remember it. And then I’ll know for sure. No more Psycho Brain posing as Doctor Know-It-All.

Stay tuned. And ask Howard for his Garbanzo Bean and Sweet Potato waffle recipe. I know it sounds hurl-worthy, but they were really good.

A the C(ranial Celiac)

Wheat The People

Every year in March, I go to the doctor for a check-up. I don’t particularly enjoy the paper dress/show me your insurance card combo, but it must be done and my birthday is in March, so it’s easy to remember. Every year when my odometer turns over, I go in for a tune-up.

My doctor drew my blood, listened to my lungs, complimented me on my weight loss, and said he’d call when the results came in. Two days later, he leaves a message on my voicemail. “Hi, Amy. Doctor Kirk here. I got your blood test results and you’re pretty anemic. Give me a call.”

When I reached him, he repeated his message. ‘Man, Amy, you’re anemic. I mean, really anemic.”

He goes on about how anemia can be caused by a number of things, including a simple iron deficiency, but he wants to check everything out on the inside to make sure I don’t have any secret bleeding going on. He gives me the name of a practice near my office and tells me to call once I have the appointment scheduled. Their name? Midwest Digestive Disease.

I’m pretty sure I hyperventilated the rest of the afternoon. Through it, I managed to stay at work (barely) and call the appointment desk for Midwest Disease (that’s what they call themselves). Magically, they had an appointment for the next day. Just an office visit; please have your doctor fax over the blood results. You’ll be here no more than 20 minutes, and there’s no need to fast or freak out.

That’s what they think—clearly they’ve never met me.

The “Midwest Disease” staff was really nice, and the doctor was friendly and incredibly forthcoming with information. He showed me my results on his laptop, pointing out that not only do I have low hemoglobin, but that my red blood cells are smaller than normal. He stands up and points to a poster of the human insides. “Anemia generally has 4 causes. The first, iron-deficiency, has 3 common sources.”

On he went, detailing every possible combination of reasons why this was happening. My multi-vitamin didn’t have iron, I had heavy periods, I was unable to absorb iron, I gave blood regularly; on and on. I’m pretty sure he has Asperger’s, because he was looking in my direction, but he rarely made eye contact. Oddly, the Asperger’s set me a bit at ease. I’m pretty comfortable with brainy, engaging males who are sometimes fleeting in their eye contact. Plus, it somehow made him really human, which reduced my blood pressure off the 4-alarm stage. He said good-bye, and then another very nice nurse scheduled an appointment 2 days later at Edwards Hospital.

The Edwards Hospital staff is other-worldly in terms of their service. In the 3 hours I spent at the hospital, I talked to no fewer than eleven people. Every one of them was friendly, engaging, and working to calm me down. I was freaked out beyond belief, and the procedure itself gave me the dry heaves in terms of its invasiveness and possible Bad News Outcomes. Even so, each nurse had something warm and soothing to say. There was no chit-chat between staffers, no pretending I couldn’t hear them while they gossiped, and no acting as if we were all sitting at a bus stop, except that one of us was wearing heated blankets and an i.v. They worked, they talked to me, and when the doctor came in, he gave a little intro. “This is Amy. She has anemia, and we’re going to check and make sure everything is all right with her.” Then, when it was time to begin, the nurse closest to me said, ‘This is where you’re going to start forgetting things.’
She was right. I had been told I’d be in ‘twilight’ sleep, but my mind is completely blank and black until I was in recovery and Howard was talking to Doctor Asperger.

One business day later, I was on the phone discussing results. No bleeding, no suspicious things, but evidence suggestive of celiac disease. Dr. Asperger wanted to run a blood screening test. I called Dr. Kirk, who responded, "Wow, Celiac". We agreed to screen me, deciding that we’d check my blood for anemia again, now that I’m on an iron supplement and eating spinach with every meal.

I’m not having the test until after I get back from Florida, but in the mean time, I’ve done some research on Celiac Disease. It’s like an armadillo: I’d never heard of it before, and then as soon as I typed it into my search engine, it was everywhere. Even Weight Watchers had a discussion board full of women who had had the disease for years.

Celiac Disease is essentially Gluten Intolerance, a condition where the body does not recognize wheat and its kin as nutrients. It views them as viruses or enemies and ‘flattens out’ the little hairs in the small intestine, refusing to absorb nutrients in or around the wheat. It’s apparently incredibly common (1 in 133 adults), wildly undiagnosed (estimated 97% of those affected do not know) and takes an average 11 years to uncover.

The disease used to be a childhood ailment and the unlucky youngsters diagnosed were doomed to a diet of bananas and baby food for their whole, stunted lives. Now, while gluten-free food is affordable only if you pay in gold bars, it is plentiful, especially if you are willing to cook for yourself. Low fat is tougher, but the closer you stick to the ‘ground’, e.g., eating whole foods, the easier it is to keep the grain out of your life.

Even with all that, going to the grocery store looking for gluten-free foodstuffs is a bit like running with scissors over broken glass while your hair is on fire and hoping you won’t get hurt. Wheat and its long line of aliases are the base metal of foods, the petroleum of the ingestible. Apart from the obvious places--cereal, bread, and pasta, wheat is in (nearly) everything processed, most soups, some make-ups and many vitamins (in the capsules). Moreover, even if you eat something that’s gluten-free, if it was cooked on a grill with wheat, the teeny gluten microbes can stick to the food and make you sick.

If it goes undetected long enough, severe anemia can develop, or significant bone loss, or even cancer. FYI, last fall when I got my mammogram, Dr. Kirk suggested I get a bone scan as well. I have thinning bones. It’s a common thing in tall, thin women, but I was 43 when the test was done, which is pretty young to show borderline osteoporosis. So even though I have no symptoms of celiac, I suspect that something is up.

So, insofar as I can, I’ve given up the Glute. I have found nothing that shows a detriment to removing it from my diet. Whatever I need in terms of fiber, roughage, grain or vitamins can be had from other sources. My carb intake is pretty low anyway, so the challenge will be to wipe it out entirely. I’ll need to take a magnifying glass to every vitamin capsule, every high-fiber wrap in the freezer, and everything that’s not in its original form. It will be tough, but Howard has already donned his Cooked Crusader Cape and declared himself up for the challenge.

The thing that concerns me is DS. Celiac disease is hereditary, and so if I have it, he may as well. Doing the de-glute on him will be much tougher. His favorite food is pizza, and after that is Cheerios. We tried gluten-free pizza last year and he picketed the front lawn. When I offered him gluten-free cookies in apology, he threatened to sue. But if he has it, then the wheat must go. Whatever the pain, I will do it. Anecdotal evidence suggests that children with autism spectrum disorders show a marked reduction in disorder symptoms and behaviors when the gluten is removed from their diet. It can take 6 months to pull it all out and get the small intestine villi back in action, but when they recover, they do so completely; so long the child remains free of the amber waves.

It’s a tough time to be investing in this type of food, but I guess we’ll just have to consider it part of our health insurance premiums. If it truly helps, then it’s worth it. No offense to Dr. Asperger and the cast of Zen Scrubbers I met at the hospital, but even with their terrific service, I’d rather not have to go through any of this again if I can avoid it.

By the way, in the first moments after discovering my anemic condition, I called Howard to find out how much iron was in my regular multi-vitamin. There was none. Zero. Zippo iron in a women’s formula multi-vitamin. I got a supplement right away, but are you kidding me? I’ll be really irritated if I went through all this just because I was too dumb to read a label.

But no, there were lessons here, even if my only illness is stupidity. I don’t need gluten, and we could all potentially be healthier without it. I can always find other ways to gum up my insides. After all, every time Howard travels, I have to cook for myself.

A the G(lute No More)