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Why The Gluten Challenge?
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I've been on a gluten-free diet for 8 weeks now and feel awesome. (I did this before seeing a doctor) Now I went to the doctor and he wants me to do a gluten challenge in order to get a proper diagnosis. He says there definitely is enough evidence to show that I have the disease, but still wants to do the endoscopy after a 4 week challenge. I don't want to eat gluten ever again. Has anyone else been through this? I just know how sick I get now that I've been gluten free and can't imagine eating gluten again for 4 weeks. Help?

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Doctor's like *objective* tests that don't rely on *feelings* that you *remember*. There's a point that it could have been something else you changed, or simply a psychosomatic effect. (It's possible, but I'm guessing not real likely for most of us. :-/)

In the end, it's up to you - I don't know that I have a "formal" diagonsis - my blood tests were inconclusive and I haven't had a biopsy, but I don't care about one either...

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Well, then if your blood work was inconclusive, didn't your doctor want to do a biopsy? And if so, why did you not do it?

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Hi Pam

I just finished my gluten challenge 2 days ago now im gluten-free again .I had to go on gluten for 2 1/2 months and I dont even know if it will show up.I was on the diet before I got any test done just like you except my dietician put me on the diet.The 2 /2 months were bad I didnt really care for a diagnoses I knew how I felt when I ate gluten but I had to get the test done for my parents.The diet is also a test itself .How did you happen to go gulten free ? just wondering .Who was it that wanted to know for sure if you had it was it you or you doc .

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A gluten challenge is a way for the doctor to convince him/herself that you have celiac disease. If the biopsy doesn't happen to support the diagnosis, you are left with a dilemma. If you feel better without gluten, go with your gut.

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I'm currious...how long does it take for most of you folks out there to feel the posotive effects of a gluten-free diet. Thanks and all weigh in please...

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Is eating the gluten really necessary? If you have only been gluten-free for 8 weeks, was there enough healing for a negative biopsy? I ask this because I went gluten-free Feb 14, and had a biopsy Sep 15. The damage was significant enough that it still showed. Can't he just do a biopsy now, instead of waiting 4 weeks?

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My blood tests were inconclusive partly because I had already been gluten-free. I had been fairly good about tracking my symptoms previously, and my doc just suggested doing a dietary challenge one day and seeing how I felt. She did not suggest a biopsy, for what I believe are two reasons: if she was still very uncertain of the results, she would have referred me to a GI, because she's just an internist; and because she realized that I didn't care as much about the rock solid diagnosis as just feeling better.

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That's how mine came to be diet-diagnosed in Feb. The endoscopy was ordered to look for ulcers, and the doc found damage from celiac instead. No ulcers, just celiac, which did not cause the problem I was having to begin with! That is why I wonder if the gluten challenge is needed, since an endoscopy and biopsy are being ordered. If it were blood testing, then I could understand the need for the challenge. If there is damage to the villi, is 8 weeks gluten-free long enough to undo it for a biopsy? I was gluten-free for 7 months, had none of the diarrhea and such, and the damage was still enough to show in a biopsy. Is it possible that my damage was worse than originally thought? That healing for me will just take longer? It did feel good to know what the doc was talking about when he said the villi were blunted. He acted like he was afraid to tell me, because of the stigma attached to the word "disease." Or maybe because of the "diet" thing. Any way, wouldn't there still be enough damage for a biopsy to show it now without waiting for a 4 week challenge?

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For some people, who aren't having a lot of damage, and heal fast, yeah, 8 weeks could be long enough that the doc won't see it. Maybe they'll get sufficient patchy healing, the doc will biopsy a site that's healed, or will expect totally flat villi for a dx, but they've done some recovery. Negative biospy results are going to be suspect to some degree if you are gluten-free for almost any real length of time before the test. Then again, we've seen people on here before with a negative initial biopsy just because they didn't have total damage, even while on gluten.

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I guess I was fortunate that my doctor used a scope to look at my intestinal wall before he took samples. He only took samples for biopsy from areas that were inflamed, he wanted to know why it was that way. I will consider myself one of the lucky few to get a definitive diagnosis without any problems, then! I do feel for anyone that has to go through a gluten challenge, I know how sick it makes me if I slip up.

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    • I found when I went gluten free I started eating more dairy and that gave me worse stomach aches and bloating than the gluten did. So now I have to avoid gluten and dairy.  Maybe you have a similar problem with something you are eating.  I hope you feel better soon.  
    • Hi! I received my "official" celiac diagnosis last week. I had an endoscopy last month that was originally looking for ulcers and h. pylori, but they did some biopsies of my duodenum since they were in the neighborhood and the biopsy came back "consistent with Celiac's disease" and later. They urged me to get my blood checked and follow up with my primary doctor. My blood work came back negative, but my doctor was confident it's Celiac so told me to stay away from gluten. I've been completely gluten free (or to the best of my knowledge) for 2 weeks now, and my results are mixed. At first, I felt great! My stomach was no longer CRAZY bloated once I stopped eating pasta and bread, my acne started healing, and the red rash on the back of my arms started to fade. That was the first few days. Lately, though, my acne is once again flaring up and I've been SO EXHAUSTED. I feel so tired all the time. Even now I have fatigue in my head, limbs, and I could hardly walk or move my body earlier today. I'm overweight and I like to go to the gym, but what used to be an easy workout for me is kicking my ass! I used to go to the gym and tear it up: HIIT on the treadmill followed by 40 minutes of heavy weight lifting. Now I can hardly finish 3 reps in my first set without feeling like a nap. I can't run anymore because my body feels clumsy and heavy. Also, I'm still bloated. I don't suffer from painful, acute bloating, but I struggle to pass gas and I look like I have pregnant belly. I think I'm also retaining water all over my body, and I'm not sure if that's normal? For whatever reason, I have this belief that water is mainly retained in the core and not arms, legs, and face. Anyway, I'd love to hear what you have to say/what you've experienced. Is this typical to first going gluten free?
    • Thanks Stephanie & Gemini for the info. that the 4 of 5 doesn't apply to children. I wasn't aware of that until now. 
    • I think the posters above have given you very good information and I will throw in my 2 cents worth.  I am surprised that they did not test her DGP IgA also.  I am sure that would have been positive.  They switched off with antibody classes and usually they do both tests for both antibodies.  IgA is more specific to Celiac but the IgG is also useful.  The testing shows your daughter is producing antibodies to the gluten in her diet. (DGP IGG). THe tTg shows positive for some damage or inflammation. You know........your daughter is only 4.  She hasn't been on the planet or eating gluten that long. It can take years for enough damage to occur for it to be able to be found on biopsy.  I would say it is highly likely that this is Celiac, especially with her symptoms. But because the damage hasn't graduated to bad enough yet, they won't diagnose her. I think you need to do what others have said and get all copies of testing and find someone else who will take a look and give a diagnosis, especially if they have you do a dietary trial and her symptoms go away.  That might be the only recourse if you want faster proof. I know I would want faster.  I would not really be happy if I thought I had to keep feeding her something that was making her sick.  If you keep her on gluten long enough, the diarrhea will probably show up. BTW.........the criteria mentioned regarding diagnosis does not apply to kids.  I know it's silly and stupid but most leading Celiac specialists do not go by this criteria for kids.......adults only.  Keep that in mind because it might come up.  You could recognize it but they might not. Have you considered gene testing, to help bolster a diagnosis? As far as false positives go, it's the other way around. False negatives happen more frequently than many people think.  It's a recurring theme here.  With her symptoms, which is what I had, a bloated belly and tummy aches are telling.  Have they tested her for lactose intolerance?  That can cause similar symptoms, although it sure won't raise those 2 blood tests.  Keep looking for Celiac because there are many red flags here.
    • This 4 out of 5 criteria does not apply to children. I was never given a reason why, but it isn't.     That said, you may try to get a second opinion from another GI who may be willing to give her a firm dx.  We were in your boat 6 years ago and while I'm sure I'll get slammed for it, I wish we had kept gluten in our kiddos diet till he scoped positive for a variety of reasons.  Again, even family is different and you have to find what is best for you!
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