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I'm a type 1 diabetic and an avid follower of Robb Wolf. When I heard that Type 1 are essentially Celiac in nature I asked my endo about it. She said yes that she finds it in a third of her patients. She gave me a preliminary test that came back really high (TSN or TPN I think.) Now she wants further testing. When I told her I already ate a gluten free diet, she told me I need to eat gluten for two weeks prior to get accurate test results. She's a pretty good doc but I'm not sure about this one. Should I eat gluten then? If so what?

UPDATE. I went through the Endoscopy. What a horrible experience. They basically shove a tube down your throat and into your small intestine. I don't recommend this to anyone.

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 If you are willing to stay gluten free, there is zero utility to confirming that you are celiac. The advice to eat gluten is only sensible if you plan to eat gluten if you are not celiac, or if you are just really, really curious. – Kurt G Harris MD Feb 18 2011 at 2:23
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 Kurt is completely correct. I am at a loss at the advice of some of my collegues. They need to read more. – The Quilt Feb 18 2011 at 3:14
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 Dr. Harris, isn't it useful from a practical/logistical point of view? Celiacs have to avoid the slightest contamination, including crumbs. Gluten-intolerant people may get away with being a little less vigilant, and that can make their lives a lot easier when they eat at restaurants or at other people's homes. I think Jules makes a similar point, below. If I were potentially celiac, I would definitely want to invest in a couple of weeks to find out for sure. – JJ Feb 18 2011 at 14:14
when will you get test results? – g. Apr 23 2011 at 23:23
Old thread but gotta clarify - you can be gluten intolerant and get sick from crumbs. You can be celiac and not react to crumbs at all. It's just not that simple. (And I fall into the camp of people who probably have celiac but won't return to eating gluten to do the biopsy because I KNOW it would make me very sick.) – syrahna Feb 2 2012 at 3:33

14 Answers

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I simply don't understand why doctors do that kind of thing. You are a type one diabetic and she already has evidence that you are gluten-intolerant because you scored high on one test already, and yet she wants you eat gluten for the sole purpose of obtaining test results...possibly damaging your health in the process! Is it just me, or does that seem totally absurd to anyone else? If you eat gluten to give the doctor the test results she is looking for, you are the one who is going to have to live with the consequences, not her. And you couldn't even sue her for malpractice because she is following the "standard of care" by, absurdly, telling you to eat gluten so that she can obtain a test result! But since you already eat gluten-free, and since it doesn't sound like you intend to eat gluten in the future, the test results would be moot, anyway, wouldn't they?

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@Helen: I don't think you could sure for malpractice because the standard of care usually is to get test results! (You also have to show that the doctors actions are the closest cause of the plantiff's damages, which is tough). That being said, if you don't track your patients like guinea pigs, how else will you get promoted (if you're in academia)? More seriously, undirected gathering of data can be very useful for retrospective studies which you need to cite to do the actual research that benefits people. – mac389 Feb 19 2011 at 12:37
You misread my answer...I specifically said that he could not sue for malpractice. Are you saying, using this case as an example, that you approve of a doctor ordering a test that she knows might damage the patient's health merely to satisy her own personal benefit!?! I hope that you are being facetious, but if you are not, then you have proven my arguement. – Helen Feb 19 2011 at 15:23
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It's a good excuse to drink beer for a couple weeks.

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To me, the gluten challenge is like seeing the doctor after breaking a leg, and having them go"It looks and feels broken,but let's hit it with a hammer for awhile,just to make sure".Insanity.

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I posted this response on a kinda similar question- "how strict are you on trace amounts of gluten? I tested negative for celiac (blood work and endoscopy) but feel much better since cutting out gluten. I typically don't eat gluten products, but I don't take all the precautions that people with celiac have to take, such as ensuring a food item hasn't been contaminated by a shared cutting board, fryer, etc. I sometimes eat regular soy sauce when tamari isn't available, and it doesn't make me feel sick. I wonder, if you really think you may have it, maybe it would be worth it in the long term to undergo the testing process; if you have celiac, but are not being 100% with cutting out gluten, you could still be hurting yourself with any trace amounts." If you are ok with having to completely avoid gluten forever, then I wouldn't bother with going back on it for testing purposes.

For more Paleo hacks: http://paleohacks.com/questions/19467/anyone-gone-back-on-gluten-for-a-possible-celiac-diagnosis#ixzz1EGegbKqw

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I want to thank everyone who posted a comment or answer. I think I'm going into the test paleo. If I react I react. If not oh well. Everyone seems genuinely concerned. I appreciate all of you.

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I agree with Joe. I'm not sure what utility there is in having definitive diagnosis for Celiac disease if it is confirmed you are a Type I Diabetic. Yeah, gluten or one of the other wheat proteins set of an immune response when you were really young that caused the damage to your pancreas. But the damage is done now, you're now dependent on exogenous insulin. As you're well aware, the key for you is constantly monitoring blood sugar and using the insulin. If you're already avoiding gluten and it isn't having any negative impact and you're happy avoiding gluten, then, just avoid gluten. Won't make a difference to your pancreas at this point.

Did she specify why she wants a definitive diagnosis? Besides the fact that more tests are billable and she makes more money? Which is all perfectly reasonable self-interested behavior if a third party is paying the tab. I just don't see that it is good medicine or that it helps you in any way.

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2 weeks isn't long enough. Dr Peter green, celiac researcher at Columbia, recommends 3 months. Check over at celiac.com for more opinions, espc. T be sure that all the correct tests are run. but if you already have one autoimmune condition, why risk triggering another?

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 Exactly, the time it takes is far too long. That's months of more damage to the body. It's already known that gluten is bad for everyone. You're ahead of the game, don't eat anymore of it I say. – justanotherhunt Feb 17 2011 at 23:15
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What would the test show? What would the course of action on your treatment be? If you would receive NO benefit (meds, etc.), why do it? Do not do it for informational purposes only. It will only wreac havoc on your body via ways that you can see and through ways that we can only begin to imagine. Kudos to you for giving it up in the first place!

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No way would I do that.

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This sounds like reductionist allopathic medicine at its best. It makes not one iota of sense why you would do more and more tests to rack up a serious medical bills that tell you less and less about what is helping you. How is eating gluten and doing more testing going to make you healthier? The research clearly indicates that staying gluten-free only improves your inflammation, blood sugar, and risk of autoimmune issues. Most medical practitioners have very little if any schooling when it comes to nutrition and lifestyle, so taking these recommendations would not be helping your situation in my opinion. I think you are doing the right thing by staying gluten-free and managing your carbohydrate intake. Being a type-1 diabetic it would be very wise to eat low-carb paleo since it would make your life easy to manage insulin doses and not to mention the tremendous health benefits that it promotes.

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@Ryan: Does staying gluten-free improve indicators of inflammation in everyone? I agree with the lack of counseling on nutrition & lifestyle- it's usually a couple of lecture (maybe 3-5 hrs tops) during a family medicine clinical rotation in the 3rd year of medical school. – mac389 Feb 19 2011 at 12:38
From what I have read in the literature staying away from lectins like gluten should improve inflammatory bio-markers and gut health in everyone who regularly consumes grain, thus allowing most to have better absorption and assimilation of nutrients. Only the folks that have clinical sensitivities to gluten notice immediate symptom amelioration by eliminating grain. Others who are sub-clinical can only really tell if inflammation is better by getting biomarkers tested or by noticing smaller functional improvements like better body composition, digestion, or elimination. – Dr. Ryan Feb 28 2011 at 17:31
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There is no point in taking the test if you are already not eating gluten, since test results may be inaccurate anyway and you probably aren't planning to change your eating no matter what the results say. If, however, some day you fall off the paleo wagon (horrors!) and do start eating gluten again, then and only then would I say you may as well go ahead and take the test as well just for curiosity's sake. But otherwise, why bother?

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Been there, done that. Long before I discovered paleo/primal/low-carb, I was a newly diagnosed type 1 and struggling. Followed ADA -- stupid! I wound up sick as a dog (intestinally) for TWO YEARS. I don't even want to evaluate the damage I've probably done. Did anyone mention the type 1/celiac equation to me? No, because I wasn't losing weight. So I went for blood work/endoscopy. Cut out gluten the next day, but I was told I was NOT celiac, so I figured -- well, wasn't that! And started eating gluten again....

sigh It's amazing how much the medical community can screw us up.

Anyway, you don't need an official "Grade A Celiac" stamp on your butt to eat gluten free. Just do it. Personally, I'm not very sensitive (it takes a few days of gluten to start up the symptoms again) so I'm not overly cautious when eating out. But if you are, just claim celiac. It's true enough, and it's the only word that makes restaurants sit up and pay attention and take your medical needs seriously.

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This doc sounds highly unethical to me, making you out to be her personal lab rat! :(

Agree to the gluten intake ONLY if the doc will also drink raw sewage daily during the same period "just to see what happens". Grrrrr....

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I was thinking something similar...that the doctor was just using him to satisfy her personal curiosity. – Helen Feb 18 2011 at 2:40
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There is no way I would injure my body for the purposes of her test. A number of the tests for gluten come back negative anyway, regardless of a person's sensitivity to gluten proteins. You might want to look into another endocrinologist or find a gastrointerologist that specifically deals with celiac. My experience has been that endocrinologists are great for diabetes help, but are terribly lacking in their expertise with gut issues, and other hormones problems, such as adrenals.

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