Gluten Challenge Necessary?

[lamp]

I was diagnosed with Celiac disease two months ago (complete villous atrophy on a biopsy) and so we tested my children. My youngest daughter (4) tested positive on the EMA and TTG test. She had been having light colored, sort of fluffy stools about 3 times a day for the last couple of months. Her family doctor said to put her on the gluten free diet while we waited to get in to the pediatric GI doc. Two weeks later, her stools were normal and her behavior (which had been odd) was back to normal. When we finally got in to see the GI, he said we had to do a gluten challenge for two months and then do an endoscopy to be sure of the disease. He admitted that he was 96% sure that she has Celiac disease, but that medicine requires certainty. So, one week into the gluten challenge she's complaining of headaches and tiredness and her stools are light colored again. I very, very strongly feel that we should stop this right now, skip the endoscopy and say that 96% is sure enough. Does anybody have any advice for me out there? I'm particularly worried that in these two months, not only will she become very sick but that one of the side effects of Celiac disease might develop. Is that possible? I have two autoimmune diseases and some neurological damage myself and autoimmune diseases run in my family. What are the risks of keeping her on this gluten filled diet and is it really necessary?

[Murph]

Ohhhhh boy 2 months is a long time when only 1 week does that!

And there are many tales of endoscopies not *finding* the damage, tho later celiac is proven. That being said - I don't see why an endoscopy can't be performed now. The villi do NOT repair overnight. It's not like the antibodies in a blood test.

If I were you, I too would worry about celiac-related disorders and I'd say 96% is sure enough. Maybe the genetic test for HLA DQ2/DQ8 would bump it to 100% in the Dr's mind.

Two months is a long time.

[shayesmom]

I was diagnosed with Celiac disease two months ago (complete villous atrophy on a biopsy) and so we tested my children. My youngest daughter (4) tested positive on the EMA and TTG test. She had been having light colored, sort of fluffy stools about 3 times a day for the last couple of months. Her family doctor said to put her on the gluten free diet while we waited to get in to the pediatric GI doc. Two weeks later, her stools were normal and her behavior (which had been odd) was back to normal. When we finally got in to see the GI, he said we had to do a gluten challenge for two months and then do an endoscopy to be sure of the disease. He admitted that he was 96% sure that she has Celiac disease, but that medicine requires certainty. So, one week into the gluten challenge she's complaining of headaches and tiredness and her stools are light colored again. I very, very strongly feel that we should stop this right now, skip the endoscopy and say that 96% is sure enough. Does anybody have any advice for me out there? I'm particularly worried that in these two months, not only will she become very sick but that one of the side effects of Celiac disease might develop. Is that possible? I have two autoimmune diseases and some neurological damage myself and autoimmune diseases run in my family. What are the risks of keeping her on this gluten filled diet and is it really necessary?

Yes, medicine requires certainty while completely bypassing common sense at times. That's a big part of the reason why it takes about 9-11 years to get a Celiac diagnosis in this country. We're so busy trying to get ALL of the tests to come up positive before advising a dietary change (that could completely resolve the situation). Meanwhile, I've seen doctors who weren't even close to 96% sure on a diagnosis pull out the prescription pad and start writing. It's mind-blowing at times.

Dietary response is an accurate indicator of the problem. The fact that TTG and EMA also came back positive and that you also have been diagnosed....well, what are the odds that your dd has something completely unrelated? Has the doctor mentioned any other potential diagnosis that absolutely needs to be ruled out? And how long have you gone without being diagnosed? Would you have changed anything on the way to get diagnosed?

This truly is your choice and your decision. You can call the doctor up at any time and tell him what is going on as well as your concerns. You can ask about a diagnosis of gluten sensitivity at the very least for school purposes. That's what I got for my dd because once I found how the diet worked on her....there was just no going back (though in the beginning, I naively thought that we'd challenge at a later time ). Now, I've read too much about the damaging effects of gluten and I have no problem keeping the whole family gluten-free. My dd, like yours, is also 4. Believe it or not, she is her own best advocate and has no problem saying no to gluten...as well as dairy, soy and eggs....no matter what her classmates are eating. She knows (or actually...remembers) how she felt on those foods and avoids them at all costs. You may want to get your own dd's input on this. Although young, you may be surprised what she has to say once all the info is presented to her.

HTH

[kbtoyssni]

Sounds like you're pretty convinced. I would only do the gluten challenge if you needed more proof (beyond what you've already got in blood tests and dietary response) to commit to putting her on a gluten-free diet. Don't do it just to please the doctor.

[lamp]

Yes, medicine requires certainty while completely bypassing common sense at times. That's a big part of the reason why it takes about 9-11 years to get a Celiac diagnosis in this country. We're so busy trying to get ALL of the tests to come up positive before advising a dietary change (that could completely resolve the situation). Meanwhile, I've seen doctors who weren't even close to 96% sure on a diagnosis pull out the prescription pad and start writing. It's mind-blowing at times.

Dietary response is an accurate indicator of the problem. The fact that TTG and EMA also came back positive and that you also have been diagnosed....well, what are the odds that your dd has something completely unrelated? Has the doctor mentioned any other potential diagnosis that absolutely needs to be ruled out? And how long have you gone without being diagnosed? Would you have changed anything on the way to get diagnosed?

This truly is your choice and your decision. You can call the doctor up at any time and tell him what is going on as well as your concerns. You can ask about a diagnosis of gluten sensitivity at the very least for school purposes. That's what I got for my dd because once I found how the diet worked on her....there was just no going back (though in the beginning, I naively thought that we'd challenge at a later time ). Now, I've read too much about the damaging effects of gluten and I have no problem keeping the whole family gluten-free. My dd, like yours, is also 4. Believe it or not, she is her own best advocate and has no problem saying no to gluten...as well as dairy, soy and eggs....no matter what her classmates are eating. She knows (or actually...remembers) how she felt on those foods and avoids them at all costs. You may want to get your own dd's input on this. Although young, you may be surprised what she has to say once all the info is presented to her.

HTH

The doctor did not mention other problems. He just said that he wanted to rule out some other diseases and make sure it wasn't just a wheat allergy. He also said something really odd. He suggested that if the biopsy revealed that her villi weren't too damaged, then maybe she wouldn't need to stick too closely to the diet. That comment goes against everything I've read and made me very nervous about trusting this doctor. I think I must have heard him wrong. Anyway, my GI thinks I've had Celiac at least 15 years. I only recently developed the more "typical" stomach symptoms. Before that it was fatigue, weakness, autoimmune diseases, muscle pain, etc.

Thank you, thank you, thank you! I appreciate this and everyone's advice. I asked my daughter what she wanted to do and she really doesn't like this "test" we're doing and has asked to go back to the gluten free diet. That's it. I'm calling the doctor tomorrow and explaining what's happening. Hopefully he will at least provide a diagnosis of gluten sensitivity for school related things.