What if the cure works, but I don’t have the disease?

A few years ago, I periodically felt like I couldn’t adequately fill my lungs with air. I had allergy tests and pulmonary function tests, all of which came back normal. On the recommendation of a co-worker, I went to see a holistic chiropractor. After a series of tests, he told me to stop eating wheat. I took the advice a step further and stopped eating gluten. This meant no pizza, pasta or cereal. It also meant learning what things contain hidden gluten, like soy sauce, which is brewed with wheat.

After several weeks on the new diet, I felt much better. My breathing troubles were gone. Additionally, so were the severe abdominal cramps I’d been having on such a regular basis that I’d come to accept them as part of the natural digestive process. I was eating more fruits and veggies to compensate for the lack of wheat products, so I was eating more mindfully and healthfully. As a result, I lost weight, though I didn’t restrict my diet beyond eliminating gluten. Eating out was more difficult, but I learned both to read menus and to work with servers. In general, gluten-free items were not as good as those made with wheat, but I found a very good mail-order bakery whose muffins, biscotti, and brownies disproved this. (Gluten-free bread, though, was always a compromise.) Every so often I would eat something with gluten in it when the temptation became too much. I told myself that occasional consumption might not be good for me physically, but it would stave off feelings of bitter deprivation and self-pity. Each time I indulged, I felt ill the next day. Never so ill that I couldn’t function, but nonetheless bad enough that I would return to my restricted diet.

I did not get the medical test to determine if I had gluten intolerance for two reasons. One, it involved resuming gluten intake fully until the test. Two, the test, if positive, is followed by an intestinal biopsy. I did not welcome the idea of getting a piece of my intestine cut out.

A few months ago, though, I had digestive troubles while traveling, even though I adhered to my gluten-free diet. Perhaps it was time, I thought, to seek out the medical diagnosis. Confirming it would mean that I could embrace my restricted diet without the little voice of doubt in the back of my head. If it wasn’t confirmed, then I could go back to eating gluten, and wouldn’t that be swell?

My first days back on gluten were mixed. I was thrilled to be eating things that I had avoided for three years, but not feeling well as a result. I had to consume gluten for two weeks for the test to be effective, though, so I had to persevere. I could hardly wait to try all the things I’d denied myself for so long–pizza, pasta, bread, donuts, cupcakes, and more. What I began to suspect, though, was that my feeling unwell could be caused, or at least complicated by, overindulgence in sugary carbs. As the novelty of eating gluten again wore off, my diet became less sugarful, and I gradually felt better. Perhaps, as my husband G. Grod had long surmised, my body needed more than one or two times of gluten for it to become re-accustomed to digesting it. I went in for the test, and several weeks later got the result, which was negative. There was no indication that I should have a biopsy.

This is good news, but I have mixed feelings. I appreciate not having to restrict my diet, which is hard not only on me but also on those around me. But I continue to have a hard time eating as consciously and healthfully as I did when I was gluten free, and I’ve gained some weight very quickly with the change. I also am plagued by the worry that I followed a gluten-free diet for three years when I didn’t need to. Yet my breathing problems vanished and have not re-appeared with the resumption of gluten, plus I learned how to eat and manage my weight better. Overall, I am very fortunate to have my previous diagnosis overturned. I just need to learn how to find balance again in my diet.

Here is a list of good gluten-free resources and foodstuffs that I found, both through trial and error and through recommendation.

Tinkyada rice pasta
Glutano Ritz-style crackers
Gluten Solutions market
Celiac.com
Living Without magazine
Ener-G or Glutino pretzels
Kinnikinnick pizza crusts and donuts
The Silly Yak bakery

2 Responses to “What if the cure works, but I don’t have the disease?”

  1. Erik Says:

    I hesitate to even comment, since as a future doctor (which is to say, a Western, Anglo-Saxon traditional, Scientific Method-worshipping, patriarchal baggage-hauling, greedy egotistical medical doctor) pretty much anything I might say is fair game for labelling as the Voice of the Hegemony (…even though I’m really quite open and accepting, and even borderline freaky by some standards).

    But even so… from my understanding of the school of thought that Palmer founded, the idea of a “holistic chiropractor” should be pretty much redundant, shouldn’t it?

    I have a pretty poor understanding of how chiropractors practice, in the here and now (not that there’s too very much standardization in the first place), but I would — respectfully — want to ask about these “tests” that revealed your supposed sensitivity to gluten. The whole chiropractic philosophy (in its original, Palmer form, as I understand it) was all about the body’s natural tendency toward health, if only it can be freed of obstructions. Treatement is different in this discipline because it involves no drugs, and no surgeries. That’s the fundamental thing.

    So how we get from that to your “diagnosis” of a gluten problem, I don’t understand — unless it’s intellectually permissible to treat gluten (one of the basic arrangements of chemical building blocks Nature uses in food) as a drug, and thus label it “bad.” I’d be interested in comments from those familiar with (or even better, practicing) Chiropractic.

    The cynic in me (which I can promise was there far earlier than the nascent medico in me) wonders if it didn’t become trendy for alternative practitioners to identify food sensitivities a few years ago, at about the same time scientific allergists (using mainstream research methods) made some leaps in understanding them.

    A lot of petty squabbling goes on in the health-care world about alternative therapies, and most of it is stupid and unnecessary. Most of it is mainstream medicine’s fault, too. The most compelling argument chiropractors make is that people will go where they feel their needs are being met, and that is undeniable. They also say that if the patient chooses to make them the primary point of entry to the health-care system, all the better, because chiropractic modalities are as well-suited as any for the minor aches and pains of life, and for those problems where chiropractic is not the best option, practitioners can refer patients to other parts of the health care system, including the stuffy old scientific part, if needed.

    Research seems to show the first part of this argument to be true, by the way: for low back pain, chiropractic manipulation works better than placebo and about as well as physical therapy, regular exercise, or the equivalent of a fistful of Advil per week. But my experience, like the research, has been very uneven on the second part. In one study, a frighteningly high percentage of chiropractors would choose to treat a 2-week-old with a fever themselves, and not refer to another provider.

    For the record, a two-week old with a high fever can die from it, so lab work is indicated in all cases. I don’t say that because I’ve picked teams and want to make chiropractic look stupid; I say that because it is stupid whenever someone dies for no reason. If they’re less than a month old, the stupidity is compounded, and anyone who advises against the right thing to do should never, ever be allowed to give that kind of advice.

    Long (very long) story short, I respect the idea of diversity in health care. I respect most of how that diversity works out in practice. But there are pockets of blindingly frustrating and stubborn practice on both sides. From your story, it seems as though your “holistic chiropractor” should have given you a tentative, working diagnosis, and then sent you to someone (a dietitian perhaps, or better yet an allergist) who could confirm it.

    In your shoes, I would of course be happy that the past few years were better, in terms of your health. That’s never a bad thing. But I’d be frustrated and frankly quite angry, about being let down in this way. You’ve been laboring under an assumption that turns out to be incorrect. You’ve made decisions — rational, sensible, intelligent decisions — based on bad data.

    On the other hand, we should always save a lot of room for mystery. We understand orders of magnitude more than we ever have about how human bodies work, but there’s still way more we don’t know. And might never know. I think in the end it all comes down to how much ambiguity we’re comfortable with, in matters of our own health. My big flashpoint is that people demand precision and guarantees from people with MD, DO, or PhD after their name, and accept truckloads of inscrutability from alternative practitioners. It’s unfair, most of all to patients.

  2. shauna Says:

    At the risk of angering the future doctor above, I have to say I disagree. There are different permutations of gluten intolerance. And from what I understand, you actually have to eat gluten for longer than two weeks before your tests will come back accurate.

    I used to be completely derisive of food allergies and sensitivities. It always seemed to me that anyone who claimed to have food allergies was rather fey and wan, looking for attention. It takes experiencing it yourself to be changed.

    For years, I had been mysteriously ill, always exhausted, filled with pain. And I’ve had breathing problems and hormonal imbalances all my life. Pneumonia six times. It took a terrible time of it last winter–seven weeks of not being able to eat; emergency rooms; CAT scans, etc.–before I was finally diagnosed with celiac disease. And yes, it was a naturopath who suggested the blood test, finally. Thank goodness. But I had it confirmed by the gastro guy. As soon as I stopped eating gluten, I started feeling better than I ever have in my life.

    Now, I keep a website about this (glutenfreegirl.com), and I can’t believe how many people read it, then tell me their stories, of how the traditional medical field ignored them. 1 out of 133 Americans have celiac. So why had I never heard of it? Well, because it’s the most under-diagnosed disease in America. A friend of mine who’s a doctor told me they spent five minutes on celiac at his medical school.

    Proof’s in the pudding, really. If you felt better off the gluten, stay off it. Why do you need a test to confirm it?