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What's Gluten Anyway?  (and my Gluten Cheat Sheet)



by Susan Fekety, RN, MSN, CNM



A hundred million years ago when I was in nursing school, I worked with a psychotic kid for about a month. His chart said he had celiac disease, so I had to go look that up.

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*. 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 (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 1 in 3,000 people or something like that. Turns out, gluten allergy is much more common than we used to think. One in a three thousand? Try 1 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.

A hundred million years ago, I remember being puzzled about why this psychotic kid with celiac wasn't eating special food – hello, 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 in the third paragraph), 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!

*Oats are usually on this list too. Oats themselves do NOT contain gluten, but they are so often contaminated by it during processing that they might as well be born with it. Gluten-free oats are available commercially, so I left them off the list.



My Gluten Cheat Sheet


  • Wheat in any form (grass, germ, couscous, sprouted, bulgur, etc.)
  • Barley ("malt" is usually a barley extract, so avoid it too.)
  • Rye
  • Spelt, triticale, kamut (all forms of wheat)
  • Oats are usually on this list too but oats themselves do NOT contain gluten. Certified gluten-free oats are available commercially.


  • (BEST single index of gluten-containing foods and products)
  • Living Without magazine (and newsletter)
  • Gluten Free Living magazine
  • Gluten Free Gourmet by Betty Hagman (She has multiple titles wonderful!)
  • Gluten Free Baking by Rebecca Reilly (A local Maine expert!)


  • If you are going to eliminate gluten, go all the way. Condiments and processed foods are particularly likely to have gluten added for various reasons.
  • Keep in mind that medications, cosmetics, and food supplements can also contain gluten.
  • Testing: Get a gluten PANEL, not just a single screening test, and do it when you have been eating gluten for at least a couple weeks. The panel would test for IgA and IgG anti-gliadin antibodies, IgA anti-endomyosial antibodies, tissue transglutaminase antibodies, and total IgA antibodies.


Article Copyright 2007 by Susan Fekety. All rights reserved worldwide. Duplication or reprints only with express permission of the author or, for a nonprofit purpose, without consent so long as the author's name and contact information are included as follows: "Reproduced with permission from Susan Fekety," These articles are provided for informational purposes only. Their content is not meant to substitute for the advice provided by your own health care professional. You should not use the information contained herein for diagnosing or treating a health problem or disease, or prescribing any medication. If you have or suspect you have a medical problem promptly contact your health care provider.




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