Since 1996, when I added "celiac" to "New Yorker" and "veterinarian" on my list of self-descriptors, I've always been grateful that I could control my disease with a gluten-free diet. I've probably said it a million times: If I had to have a chronic disease, at least it's one I can control just by choosing what I eat.
You see, I have another chronic disease, atopic dermatitis, that is more visible and far harder to control. After more than 200 patch tests, we still have no idea exactly what sets off my skin.
So as tough as it can be to stick to a gluten-free diet, and to avoid and recover from accidental glutening, it's still far easier for me than avoiding an allergen I have never been able to identify.
Now Beyond Celiac is blowing up that whole attitude. Their recent article, Shattering the Myth: The Gluten-Free Diet Isn't Enough to Treat Celiac Disease" made me think again.
Beyond Celiac is one of our leading US celiac disease organizations. They provide advice and support to people living with celiac disease, and have always advocated for more research to better understand celiac disease and the effects of the gluten-free diet. In this article, they listed 5 reasons that we need a cure, not just dietary management. While I agree that alternative treatments would be extremely useful, I don't agree with all of their points.
Point 1: The need for dietary adherence scares some people away from getting tested. Apparently some celiacs regret going for testing, particularly family members who were asymptomatic. I honestly don't understand this. Yes, the diet took some changes, but why would you continue to make yourself sicker, if you didn't have to?
Point 2: More people are going gluten free to be "healthier." This is the "gluten-free diet as fad" concept. I completely agree that this behavior undermines respect for the needs of celiacs and gluten-intolerant people. And I agree that getting one's health advice from celebrities and non-experts is a bad idea. I just don't think a fad diet has anything to do with the need for alternate treatments or even a cure.
Point 3: People may cheat because the diet is difficult. Sorry folks, I struggle to sympathize. It's so much easier now to find gluten-free foods, and so many delicious foods are naturally gluten free. Embarrassed about eating differently? Be grateful that you weren't born with a visible physical deformity.
My only exception on this topic is that the cost of gluten-free substitutes is far beyond the means of people living with lower incomes, many of whom live in food deserts. The "cure" for that problem is through raising the standard of living and increasing access to safe food, not pharmaceuticals. Those pills won't be cheap either!
Point 4: The challenges of adhering to the diet can negatively impact quality of life. Yes, I understand. I have put up with the snide remarks, odd looks, and rolled eyes of people who just don't get it for more than 20 years. Developing a thick skin as an adult was tough; if you're a kid, it's even harder. Nonetheless, we are not victims; we can all put on our big girl knickers and deal with it. Having to face down or educate these misguided critics will make you more self-confident and a better celiac advocate, for yourself and others.
Point 5: Not everyone on the gluten-free diet will heal. Aha! This is different! Now we're talking about a medical problem, not a social one. Unfortunately, after 6-12 months of strict adherence to a gluten-free diet, as many as 30% of celiac patients will still have persistent signs and symptoms of celiac disease, up to and including elevated antibody levels and intestinal lesions. Despite their best efforts to root out and eliminate all gluten, these people are still at risk for the long-term consequences of uncontrolled celiac disease.
This is the point that made me think.
When I think of medicating an autoimmune disease, I see risks as well as opportunities. Risks of severe acute side effects. Possible long-term consequences that won't be known for years after a drug is approved. The struggle, especially for American celiacs, to get medical insurance coverage for a chronic condition, and the cost of medicine that isn't covered.
But failure to heal when you do everything right? That overrules all of my prior objections.
So no, I don't agree with four of Beyond Celiac's five reasons. But reason number five is enough. Let's support the research and push for a treatment or a cure. And let's push to make sure that whenever science does find it, that cure is available, affordable and safe.
Go Beyond Celiac.
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