Celiac disease (also called “nontropical” sprue — there are two “sprues” — whose idea was that?) is an immune system reaction triggered by eating gluten, a protein found in wheat, barley, rye, spelt, kamut and triticale. Oats are usually on this list, too, though oats themselves do NOT contain gluten. They are so often contaminated by it during processing that they might as well be born with it, but gluten-free oats are available commercially.
You know how chewy a bagel is? How a really good one gives you a major jaw workout? That’s the gluten. Stretchy, rubbery — a baker’s dream.
In a person with celiac, eating gluten damages and may even destroy the intestinal villi, these elaborate tiny wrinkles in the intestinal lining which give you a huge surface area to absorb nutrients across. Bad celiac disease is awful: weight loss, severe digestive disorders, anemia, seizures, intestinal cancer. Gluten allergy can cause some symptoms that are pretty common (at least in my practice): fatigue, irritability, depression, rashes, constipation, headaches, joint pain and some secondary diseases you wouldn’t necessarily think of, like diabetes, osteoporosis, thyroid disease, psychiatric disorders and infertility. Gluten allergy is genetic, so it tends to run in families. Some people are diagnosed as kids; others go for years before anyone thinks to test them.
Back a hundred million years ago, I read that gluten allergy was rare, affecting only around one in 3,000 people or something like that. Turns out, gluten allergy is much more common than we used to think. One in a 3,000? Try one in 130, though often in a milder or asymptomatic form. That’s three million Americans — but the vast majority don’t have a clue that they have it.
What’s the cure? DUH — not eating gluten. Gluten-free food is a growth industry. With better testing, more and more of us are getting diagnosed. Through the miracle of the marketplace, many really good gluten-free products are being made. Online support groups, cookbooks, classes — there’s even a gluten-free microbrew. I have many gluten-free patients who are far healthier now. They lead normal, happy lives.
I remember being puzzled about why that psychotic kid with celiac wasn’t eating special food — he got the same miserable Wonder bread sandwiches as everyone else on the unit. Probably because it was considered asymptomatic, his gluten intolerance was treated as a non-issue. Now I wonder whether it was an underlying trigger for his mental illness, but we just kept giving him bread and upping his meds. We’ll never know.
The point is, gluten allergy is real and common, and it can make you really sick without you being aware of it. It’s also easier to address than ever before. If you have a suspicious symptom (digestion-related especially, or one on the list above), or have a relative with celiac, talk with your clinician about whether to get screened — it’s just a blood test. If you test positive, you might want to do confirmatory testing or just go gluten-free. Your villi will thank you!
Susan Fekety is a Yale-educated advanced practice nurse with special expertise in nutrition and dietary therapies. She provides women’s health care and coordinates the First Line Therapy program at True North Health Center in Falmouth. Contact her at sfekety@truenorthhealthcenter.org.