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.
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?
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.
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.
I did the two week re-intro after almost a year gluten free. Let me tell you that all my gluten symptoms from hell combined with the pre-colonscopy cleanse were some of my worst all time hours. (give me a hangover from hell anyday). On top of that I was "negative"! Listen to your own body!
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.
How long have you been gluten free?
If you experienced a positive change in your life whether mental, physical or spiritual when avoiding gluten then that should be all the proof you need that gluten should be avoided completely. Getting diagnosed with Celiac Disease isn't a must. If you are sensitive to gluten the treatment is the same either way. Avoid gluten and cross contamination. Many doctors who specialize in gluten sensitivity will tell you this as well.
Celiac Disease is one of MANY things that are caused by gluten sensitivity. Other things cause by gluten sensitivity include depression, obesity, Alzheimers, arthritis, general malaise, brain fog, chronic fatigue, anxiety, OCD, joint pain, malnutrition ect. the list goes on. Celiac isn't even necessarily worse than any of those other symptoms listed. It's just that right now Celiac is the main thing that is being pointed out and studied, while gluten sensivity is a lesser known thing. That's why doctors push the diagnosis so much when it's not even necessary.
If you decide to reitroduce gluten to have this testing done don't eat oats. Eat wheat, barley and rye instead, doctors want to make sure when testing you that the small intestine damage is going to be detected. Oats only contain small small(but still deadly enough for many) amounts of gluten from cross contamination. Oats do have their own "gluten" too however that's another discussion.
The choice is up to you, just know you can't go wrong by avoiding gluten. Good luck!
**Also here is a good forum and sites you can ask questions. Gluten free society is owned by a doctor who specializes in gluten and is actually a fellow paleo eater too.
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.
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?
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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