Celiac Experts Make Less Than Zero Sense

In the 1960s, Edmund Wilson reviewed Vladimir Nabokov’s translation of Eugene Onegin. Wilson barely knew Russian and his review was a travesty. Everything was wrong. Nabokov wondered if it had been written that way to make sense when reflected in a mirror.

I thought of this when I read recent remarks by “celiac experts” in the New York Times. The article, about gluten sensitivity, includes an example of a woman who tried a gluten-free diet:

Kristen Golden Testa could be one of the gluten-sensitive. Although she does not have celiac, she adopted a gluten-free diet last year. She says she has lost weight and her allergies have gone away. “It’s just so marked,” said Ms. Golden Testa, who is health program director in California for the Children’s Partnership, a national nonprofit advocacy group. She did not consult a doctor before making the change, and she also does not know [= is unsure] whether avoiding gluten has helped at all. “This is my speculation,” she said. She also gave up sugar at the same time and made an effort to eat more vegetables and nuts.

Fine. The article goes on to quote several “celiac experts” (all medical doctors) who say deeply bizarre things.

“[A gluten-free diet] is not a healthier diet for those who don’t need it,” Dr. Guandalini [medical director of the University of Chicago’s Celiac Disease Center] said. These people “are following a fad, essentially.” He added, “And that’s my biased opinion.”

Where Testa provides a concrete example of health improvement and refrains from making too much of it, Dr. Guandalini does the opposite (provides no examples, makes extreme claims).

Later, the article says this:

Celiac experts urge people to not do what Ms. Golden Testa did — self-diagnose. Should they actually have celiac, tests to diagnose it become unreliable if one is not eating gluten. They also recommend visiting a doctor before starting on a gluten-free diet.

As someone put it in an email to me, “Don’t follow the example of the person who improved her health without expensive, invasive, inconclusive testing. If you think gluten may be a problem in your diet, you should keep eating it and pay someone to test your blood for unreliable markers and scope your gut for evidence of damage. It’s a much better idea than tracking your symptoms and trying a month without gluten, a month back on, then another month without to see if your health improves.”

Are the celiac experts trying to send a message to Edmund Wilson, who died many years ago?

15 Replies to “Celiac Experts Make Less Than Zero Sense”

  1. One super effective treatment for IBD – fasting and eating less. I have never heard anyone suggest this until recently, in an email. I went from bloody stool to almost perfect (better than nearly everyone’s) in 24 hours, with nothing inbetween. This is unprecedented for me.

    A 24 hour fast is very hard if you are eating a Standard American Diet, for various reasons, but very easy if you are eating paleo. The optimal diet for IBD seems to be yoghurt and lean meat (including shellfish). This is nutritionally complete and the lowest residue possible.

    Instead, doctors run expensive, invasive tests that only reveal damage progression, and prescribe drugs with often dangerous side effects that merely mask the problem and permit it to become more severe, until the drugs stop working. Then they cut out a piece of bowel.

  2. I’d have to say that Dr. Guandalini’s statement that “[A gluten-free diet] is not a healthier diet for those who don’t need it,” could well be true. In fact, it seems to be a tautology, with no useful content. The real issues are 1) as Seth points to, how can you find out if you have a gluten problem?, and 2) what if you don’t have say IBS, try no-gluten and it doesn’t seem to make a difference. Are there nevertheless long term health issues for you if you keep eating gluten? Dr G, and his fellows, don’t seem to have anything useful to say about 2).

    Seth: I’m unsure what it means to “need” a diet. If the statement is revised to be clearer — “A gluten-free diet is not a healthier diet for those who don’t benefit from it” — it’s a tautology.

  3. If I were Dr. Guandalini’s patient, I would be concerned. In an article filled with unsupported pronouncements, his took the cake. As Tom Passin points out, the most charitable interpretation of it is as a useless tautology.

    The subject of gluten-free diets seems to spark a reflexive irrationality in many healthcare providers. Evidence-based medicine is all well and good, but only when the evidence is handed down from on high. Evidence based on what works for you is often greeted with condescending hostility.

    Doing an ABA trial of a gluten-free diet seems like the lowest of low-hanging fruit to address a chronic condition. Who needs gluten? Yet when Kelly Dorfman, author of Cure Your Child with Food (http://cureyourchildwithfood.com/book/) did a Q&A about gluten-free diets at the Washington Post, here again was the “concern.” Given the typical lag of years between the onset of symptoms and the diagnosis of celiac disease, this concern seems misplaced.

    I think there should be an emphasis on the NEED of a Gluten Free Diet. It’s fine if that is what the doctor ordered. However, right now, it seems to be the “in” thing to be Gluten Free when it’s not necessary. Agree?
    – February 21, 2013 11:12 AM
    There is a little bit of the ‘latest thing’ going on here with gluten free living. I agree. However, without a tight test for non-celiac gluten sensitivity, waiting for your doctor to point it out could be an exercise in pain and frustration. I have a long list of horror stories I could share (but won’t).
    – February 21, 2013 12:52 PM


  4. I have thought about cutting out gluten just to see if it is a problem for me (I suspect no, no reason to think it is) but I can’t think of a good experiment. If I just stop eating bread I will change other things (fewer cheese sandwiches means less cheese maybe, or substituting spelt for wheat means more spelt, not just less gluten). At the very least less wheat means more of something else! So what experiment can I do that is sensitive enough to capture what is probably a small effect?

    Seth: So what if you change other things. You will still reduce gluten. If you reduce gluten substantially and notice no changes, that is evidence against the hypothesis that gluten is a problem for you. If you reduce gluten substantially and notice improvements, that is evidence for the hypothesis that gluten is a problem for you. How to increase sensitivity: Reduce gluten a lot. Notice what might have changed. Start measuring those things carefully. Increase gluten. Do they get worse?

  5. I am not a ‘celiac’ but I was a sufferer of GERD and severe heartburn for many
    years. I read several articles online about ‘leaky gut syndrome.’ I eliminated wheat, including my beloved scotch. The results were almost immediate–
    within weeks I no longer needed omeprazole or Nexium and I have taken no
    acid inhibitor for four years. Anecdotal? Certainly. Would I go back to the
    SAD recomendations of x number of whole grain servings? When pigs fly!!!

    Seth: As far as strength of evidence for causality goes, your “anecdote” is much stronger evidence than many non-anecdotes.

  6. Babar, don’t overthink it. You’re not trying to wow the Nobel committee, you’re just figuring out what works for you. You can do a month off gluten, a month back on, another gluten-free month, and see if there are any changes. Then you can try something else, maybe pursue anything interesting that arose in the first experiment. If cutting out cheese sandwiches makes a difference, try a month without cheese and a month without bread to see which one is having an effect. Get going, and have fun.

  7. I stopped gluten and dropped 40 lbs. My skin cleared up. I no longer get acid reflux. My sleep problems improved. Doctor G would have me go back on gluten and have a bunch of tests done to determine if I have a problem with it. Hmm. I think I may disregard his opinion.

    Seth: Yeah, exactly. His advice makes less than zero sense.

  8. One note of caution–I have been diagnosed with Celiac, but it took almost a year for me to feel better without gluten, in part because of complications due to having Celiac for so many years. Just going gluten free didn’t help, at least not at first. So if a month without gluten doesn’t make you feel better, you could still have Celiac.

  9. My wife has celiac disease, she was diagnosed about a decade ago. As far as we’re concerned, MORE POWER TO THE FAD. It increases her options in buying food in the supermarket and at restaurants, raises awareness, and lowers prices. Since she can’t just “quit” eating gluten free, this is very important.

    Note: I do not have any problem with gluten, and in fact love to eat breads and pastas full of the stuff. We evolved a workable method so she doesn’t get sick and I don’t have to eat gluten free all the time.

  10. For nearly a year I suffered from excruciating joint and muscle pain, a host of digestive problems, fatigue and weakness. I improved by removing gluten, but then I became intolerant to other foods while at the same time becoming more sensitive to trace amounts of gluten. Gluten free brands such as Bob’s Red Mill I became unable to eat because of cross contamination with oats and gluten grains. I am still trying to figure out why food is such a problem (it’s been 4.5 years since my onset of symptoms, though I sometimes think acne and fatigue problems starting in my teenage years were somehow related to gluten or other food intolerances) and why no doctors can help me. I don’t have celiac disease or a wheat allergy; I’ve been tested for food allergies but the only things that came back positive were foods I had already been avoiding. I can only guess that I have gluten sensitivity, which has gotten worse as I removed ever smaller amounts of gluten from my diet. If I could remove it completely, perhaps I would be better. This is all my long-winded way of saying there is much science doesn’t know about gluten related illnesses and sometimes you can only trust what you feel.

  11. Or you can quit gluten for a couple weeks (with, in my case, immediate and vast improvements in multiple domains) and then have an eating companion prepare a series of meals into one of which is slipped a quantity of vital wheat gluten. Bonus points if he also slips an array of novel powders into the other meals that alter the flavor and consistency of the food in novel-to-you ways (e.g. sorghum, almond meal, flax, nutritional yeast). Extra bonus points for replication and a larger control group of naive diners. NOBEL PRIZE NOW PLEASE

    But really the celiac test is not totally stupid — I would be much more careful about gluten exposure and cross-contamination if I had any evidence of actual celiac rather than a pretty obvious sensitivity. And because I self-experimented prior to getting tested, I had to go back on gluten for several weeks for the antibody/scope tests to have any chance of detecting anything, so I really would recommend getting tested and THEN commencing with the rampant and exuberant self-experimentation.

    Seth: Since you quit gluten and noticed big improvements, why did you bother to get antibody/scope tests? In your case it does sound like the celiac test is “totally stupid”. Nor do I understand why you need “evidence of actual celiac” to be very careful about gluten exposure. You have evidence of gluten sensitivity.

  12. I’m careful, but not obsessively so. From my (limited) understanding of celiac, damage to the intestine can result from exposure that doesn’t necessarily cause other more overt symptoms, and this damage is related to longer-term complications, so avoiding that requires being really super vigilant about eliminating any potential sources of cross-contamination — e.g. maintaining separate “clean” sets of cookware that have never been used with gluten-containing ingredients, avoiding food from bulk bins, etc. Whereas, as far as I know, as long as I keep my exposure sub-symptomatic there is no reason to think I’m doing permanent damage to myself if I have a sip of beer on occasion or use the communal toaster oven. Could be wrong — since nobody seems to know much yet about the mechanisms of gluten sensitivity — but the convenience is currently worth the risk to me (and would not be with a celiac diagnosis).

    Seth: Thanks for the explanation, but I’m afraid I don’t follow your reasoning. I still don’t understand why you would bother to have the tests necessary for an “official” celiac diagnosis. You have already learned that you are sensitive to gluten.

  13. Celiac disease is an autoimmune disorder, and some restrictions or limitations that apply to people with other autoimmune diseases apply to people with celiac’s. Even absent that, even gluten seems to make you feel better it might be something else and not sensitivity to gluten. It’s still important to test for that if you might have it to both increase knowledge about your symptoms and develop the most effect treatment. Then there’s always the chance for a placebo effect. If you’re already convinced you’re sensitive to gluten and then you reduce gluten you might just feel better because you expect to.

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