2 1/2 Wks Gluten Free And 11 Yr Son Is Muscle Pain Free!

[carecare]

My 11 yr old son tested positive on his blood test 3 wks ago. His deamidate IGg was high but his tissue transglutemate was negative. I decided to start a gluten free diet with him immediately and not wait the possible 2-3 months for a biopsy. I couldn't see putting him through pain every day to tell us something we already know. I am soooo happy I did that. 2 days ago he said he was pain free. I believe he's been suffering muscle pains for the past year...at least I know that is when he started telling me his muscles hurt. He thought it was always from too much activity the day before. Now he said he knows the difference between muscle pain from gluten and muscle pain from activity. Now to decide what to do with the appointment I initially made with the pediatric GI doctor in the celiac clinic at the Children's hospital in Milwaukee....which is a 2 hr drive for us. Do I still take him to that appointment at the end of the month or call and cancel? If we go...will the doctor be upset that we went gluten free already?...because a biopsy would be useless at this point...since he's gluten free.

Oh and he's been having some constipation issues this past week...I wondered if he was glutened...but not sure. He never has told me about that issue before but that one day last week he told me about his troubles. My husband said his body went through changes when he first went gluten free...that he alternated between C and D for a couple months but then it all evened out. Dh never complained of constipation before so it's something new.

[Mdhriggin]

I did the same thing with my daughter when she was having issues (she was 21 months when the blood test came back positive). My pediatric gastroenterologist ended up having her eat gluten for a week before the biopsy, and it still showed the damage, so it ended up okay. It unfortunately is important to get the biopsy diagnosis, because otherwise getting assistance for food changes in school and so forth may be more difficult because you don't have a "true" diagnosis. Children's Hospital in Milwaukee is very good - what peds gastroenterologist are you going to? Dr. Ellen Blank was my sister's peds gastro, and she is excellent. I might call and say that given the amount of pain your son is in and his reaction to gluten-free, you want to move the biopsy up to ASAP or else you are going gluten-free. It is worth a try, anyway.

[T.H.]

If it were me, I'd reschedule the appointment for maybe a couple more months down the line.

Right now, the Dr. who researched and persuaded everyone that the biopsy was the 'gold standard' has actually said that based on the most recent research, he no longer believes that. Too many people are testing positive by blood test, testing positive with symptoms and poor metabolisms, but negative for biopsy...and get very sick if they stay on gluten because their gold standard was 'negative.'

So taking him off of gluten before a biopsy is not a bad thing, I don't think. New doctor, you just get a copy of his positive blood test, tell 'em he has celiac when you start up, and there you go, the doc will give you a doc's note if you need it for school.

However, if there are any other problems cropping up, it might be worthwhile seeing a gastro. Our daughter had other issues with her gut that we have been unable to figure out completely. We figured out some that improved her health, and elminated some symptoms, but something is still going on. So we're seeing a gastro not for confirmation of the celiac disease, but to check her gastrointestinal health, because that can be so fragile in celiacs, you know?

So a few months form now, if there's any trouble, it's not a bad idea to have him tested. Also, 6 months from now, having him tested for celiac disease again is a good idea, so you can make sure he is healing as he should be.

[maximoo]

@ T.H. The pediatric gastroenterologist I went to WOULD NOT give a dx of celiac w/o the biopsy. He said he has to follow protocol. I said "what would the result be in any event? ( as the blood antibodies were in the high range) My kids go gluten-free? Of course he said "YES" We are @ a disadvantage not having a dx, but I refuse to indulge in the stupidity of it all. I simply have to send lunch to school, and pack lunches for other activities as well.(which isn't so easy at times but I do it). I could easily put the kids back on gluten as they have no physical symptoms but OPs son has muscel pain. He is better in just a few weeks ! I agree with having the boy tested every 6 mths is a good idea & perhaps if that protocol is modified or done away with (as you stated original dr who convinced its the gold standard has retracted) then perhaps I or OP can get an DX w/o biopsy. Do you have the source of that article? Would love to read it!