Is The 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?

[jerseyangel]

Hi lamp, and welcome

If she were my child, I would skip the gluten challenge. She already has positive bloodwork and a favorable response to the gluten-free diet--that plus my own diagnosis would be enough for me.

[DarkIvy]

I was under the impression that positive bloodwork IS good enough for an official diagnosis. Usually the problem with bloodwork is that people with negative bloodwork can still have celiac, so getting the biopsy in that case makes sense. But if the bloodwork is positive.... what's the point?

I can relate, though. I myself was gluten free for about three weeks and am currently on the gluten challenge for the biopsy. My bloodwork was all negative, but celiac is in my family and I've got all the symptoms, and saw HUGE improvement while gluten-free. Your daugher sounds a lot like me: I had weird stools, weird behaviour, and loads of headaches and fatigue when I am eating gluten.

My decision to go ahead with the challenge despite this are because I'm 20 and old enough to decide that I want the diagnosis, and that the biopsy is only a week away so I might as well get through with it. I'll be living in a sorority house starting this fall, so I need paperwork from the doctor saying that I can't eat gluten. This way the cook can accomodate my diet and I can bring in some of my own gluten-free appliances. I also feel that having an official diagnosis would be helpful if I ever need a gluten-free perscription or land in the hospital and need to request special foods. I also realize that I could put this off, but it would require my doing another gluten challenge later in my life. The sooner I get it over with, the sooner I can go gluten-free for good and never have to worry about it again. I'm 99% sure I've got celiac, but having the medical backing if I need it is comforting.

I'd call your doctor's regular doctor and her GI. Explain the situation and see what happens. Depending on how long she was gluten free, she may not need to be on the challenge for 2 months... that sounds like way too much. Perhaps they will decide that the bloodwork and dietary response are enough.

[pedro]

Hi

I agree, I would skip the gluten challenge. The positive biopsy is enough for me. The faster she starts healing process the better.

Take care.

[chatycady]

A gluten challenge after a period of gluten free can actually be dangerous. We need a better diagnosis! Forcing the body to get "sick enough" to determine a correct diagnosis is actually, in my opinion, nuts! It's like telling someone with heart disease to create a heart attack so the Dr. can diagnois heart disease.

I hope you give up the gluten challenge for your child and stick with the diet.

A friend's daughter has been having all sorts of digestive problems. She is miserable and is throwing up, misses school, has terrible heartburn, she's struggled for years, but after visiting with Dr's. the past two months, they are still debating on whether or not to do a biopsy. She isn't losing weight, or anemic so they do nothing. Just think of the damage being done as they sit and take a "wait and see" attitude. She could be on the diet getting better, or at least she could try the diet. But she isn't given the opportunity, because she is a child. Sad.

[lamp]

A gluten challenge after a period of gluten free can actually be dangerous. We need a better diagnosis! Forcing the body to get "sick enough" to determine a correct diagnosis is actually, in my opinion, nuts! It's like telling someone with heart disease to create a heart attack so the Dr. can diagnois heart disease.

I hope you give up the gluten challenge for your child and stick with the diet.

A friend's daughter has been having all sorts of digestive problems. She is miserable and is throwing up, misses school, has terrible heartburn, she's struggled for years, but after visiting with Dr's. the past two months, they are still debating on whether or not to do a biopsy. She isn't losing weight, or anemic so they do nothing. Just think of the damage being done as they sit and take a "wait and see" attitude. She could be on the diet getting better, or at least she could try the diet. But she isn't given the opportunity, because she is a child. Sad.

After reading all these posts I have decided to stop the challenge. Someone else also advised me to ask my child what she thinks about all this. She had been really upset when we made her start eating gluten again and when I asked her what she wanted to do, she said she wanted to go gluten free again. So that's it. We're done with this craziness. I just don't understand why doctors think that asking us to hurt our bodies or our child's body is ok. "Do no harm" is the motto, isn't it?

Anyway, thank you all so much for your advice!