Should I do a Gluten Challenge?

The issue of a gluten challenge is a controversial one. Some doctors recommend that if you are feeling better on a gluten free diet you do a gluten challenge in order to be tested for celiac disease. What is a gluten challenge and is it right for you? Discuss this with a medical professional you trust.
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Dear Challenged,

The two worst places to get medical advice are from twitter and blogs. The best place is from a real live medical professional that you trust. Please take what I write here as a non-medical description of what a gluten challenge is, and my opinion on the benefits and drawbacks of doing a gluten challenge. Please see a medical professional that you trust before you add gluten back into your diet.

What is a gluten challenge?

When someone with Celiac Disease stops eating gluten before they are tested, their body starts to heal. The only way to conclusively tell if someone has Celiac Disease is to measure the amount of damage done by gluten to the intestines by doing a biopsy. When you do a Gluten Challenge, you start eating gluten again. If you have Celiac Disease, your intestines will be damaged and your doctor can then confirm that, yes, gluten is making you sick. He can then prescribe you with a Gluten Free diet so that you can be on the road to healing from your Gluten Challenge.

So What are the Benefits to Doing a Gluten Challenge?

If you are diagnosed with Celiac Disease, you have confirmation that gluten is actually making you sick and you’re not faking it. A stamp of approval from a doctor means alot to some people. There is an added benefit to having a diagnosis of Celiac Disease if you live in a country that provides tax deductions for gluten free products. It’s a bit of work to collect all your grocery receipts, but some people find it’s worth it.

What are the Drawbacks to Doing a Gluten Challenge?

If gluten is making you sick, you’re going to be sick the whole time you do a gluten challenge. The longer you’ve been gluten free, the longer you’ll have to do the challenge to cause the kind of damage that will show up in a test. Doctors suggest a gluten challenge anywhere from 6 weeks to 6 months. You may have to arrange for time off work or alternate care for your children depending on just how sick you get.
Another drawback is that you’re damaging your body. Celiac Disease is an autoimmune disease, not a little tummy problem. An autoimmune disease, like Lupus and MS. It causes your body to attack itself. Worse, it causes the body to attack the intestines, and damaged intestines will lead to poor absorption of nutrients. That means, that in addition to being sick, you will become malnourished while doing a gluten challenge.
The third drawback is the link between doing a gluten challenge and developing other autoimmune diseases. You might find out that you have Celiac Disease and then a few years later discover that you’ve developed Hashimoto’s Thyroid Disease.
Here’s a quote from Dr. Tom O’Bryan, Gluten Expert and MD from The Dr.Com:
This means one out of four of the children who were sensitive to gluten, went gluten-free, eliminated all of their symptoms, and then began eating gluten again developed an autoimmune disease within three years. 
Gastroenterology 1999;117:297-303.
Read the full post here

But, I’ll finally have a Celiac Disease diagnosis, right?

Well, maybe. There are several factors at play here. You might have Non-Celiac Gluten Sensitivity, a condition that is not Celiac Disease, but still causes you to be very, very sick when you eat gluten and so your tests will come back negative. The only way to really test for this, is to stop eating gluten and see if you feel better. Even if you have Celiac Disease you might test negative after a gluten challenge because you didn’t sufficiently damage your intestines, or because your doctor didn’t take enough sample of your intestines when he did the biopsy. But, yes, you might test positive for Celiac Disease. (for more information on Non-Celiac Gluten Sensitivity, see here: Non-Celiac Gluten Sensitivity on Celiac Central)

But, if I Have a Diagnosis of Celiac Disease My Doctor Will Be Able to Fix Me, Right?

Um, wow. No. Sorry. I thought this too. Unfortunately, at this time, there are no medical treatments. The only way to fix Celiac Disease is to go on a gluten free diet. The one you were following before you did your gluten challenge.
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Some Encouragement

More and more doctors are prescribing a gluten-free diet as a test of all gluten issues instead of invasive procedures like biopsies, and a formal diagnosis matters less to them than you being the healthiest you that you can be. Some doctors (like mine!) are even going gluten free themselves and noticing a huge difference in their own health. Remember, the best place to get medical advice is from a real live medical professional that you trust. If you’re looking for a gluten free expert, you might want to try the directory at TheDr.com 
And remember, you’re not alone. If you’re feeling lost, you can connect with others on Freedible. My profile is here so you can add me as a friend, and you can join the Freedible gluten free group here.
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7 thoughts on “Should I do a Gluten Challenge?

  1. Ohh I am thinking about going gluten free as well after yet another blood work panel shows that I am iron deficient-anemic after changing my diet (to a higher iron diet), getting on birth control, AND starting to eat meat. A few websites suggest that celiac can interrupt absorption, and at this point I don’t know what else to try.

    • Yup, celiac can interrupt absorption because it destroys the intestine. Is it possible for you to see a Naturopath? My MD is one and she prescribed some supplements to help heal my intestines after a period of prolonged gluten exposure. I’m also taking digestive enzymes that are supposed to help the body break down the nutrients you need so they can be more easily absorbed. Good luck! Let me know if you need any help with the gluten free stuff.

  2. I had an easy time with the “gluten challenge” because the first time I went gluten-free I didn’t feel any better, even after six weeks. I got back on gluten but figured I should still ask to get tested just to rule it out. Then, it turned out I do have celiac disease. Naturally. I imagine if I had been one of those who felt better right away, deciding to eat gluten again just to get an official dx would’ve been a lot tougher. I admire people’s courage and determination who do go through with it (though it’s an excellent point that it may not be worth it, considering the damage it could do…we have to ask which is worse, increasing our risk of autoimmune diseases, cancer, etc., or living forever on a diet that’s stricter than it needs to be. The best thing would be for doctors to do more blood tests before patients go GF!).

    • That’s interesting, Molly, what inspired you to go ahead and get tested anyway? (Actually asking for a family member who is having some weird health problems but doesn’t really notice a difference gluten free). I think it comes down to having a doctor who listens and who you trust and who is willing to test you for celiac disease or support your efforts to go gluten free. Fortunately many more doctors are aware of celiac disease and non-celiac gluten sensitivity and how common they have become.

      • I actually work at a publishing company that focuses on, among other things, gluten-free lifestyle and cookbooks, so I had read up a lot on the gluten-free diet and celiac disease by the time I tried it for myself (and had been sick for a couple years already by then). I had read several times that it can take six months to two years to feel better on the gluten-free diet for someone with celiac, so I figured there was at least some chance that I was one of those people…plus, I didn’t think there was much harm in getting the blood test done either way. (This was all very much initiated by me; unfortunately, until I was diagnosed and sought out a celiac specialist, I never encountered a doctor who thought to test for it.) And in the end my hunch came true! I’m a little over six months in and starting to finally see some improvement, but it’s been a slog. I’d suggest that your family member stay on gluten and get the blood test done (and harangue their doctor until he/she agrees to run the test, if necessary). Obviously that’s a completely unqualified recommendation, but it worked for me!

  3. Oh wow I had no idea the government can give you tax deductions for buying gluten free products. I’m not gluten intolerant but I’m allergic to wheat, so naturally a lot of things I buy exclude gluten. I’m about to start up on immunotherapy for my other food allergies and I plan on seeing a GI specialist because my gut tells me, no pun intended (ok well maybe a little 😉 ) something else might be going on.

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