We're Back On Gluten

[mama2two]

Oh gees, where do I start? I do a recap as briefly as I can. AT 4 years old my daughter started having mucus in her stools, distended gassy abdomen, forceful burping, abdominal pain, passing large amounts of gas, ulcers in her mouth, etc. Did some different testing, celiac panel came back negative, but pedi suggested try gluten free diet for the summer, diet made all these things go away, if she did get gluten, in two days she would have mucus again, we got better at avoiding gluten and she got to the point that all symptoms were gone. Now she is 6 almost seven, and we decided to finally see a pediatric GI doctor, to get some advice, and maybe more concrete answers. We had done testing through enterolab which showed that my daughter has a gene for gluten intolerance and a gene pre-disposing her to celiac disease, and said she should avoid gluten due to the reaction in her stool. This doc basically said that these results were null and void, and said that according to her panel she does not have celiac. She was concerned with her short stature and the fact that my husband and I are both tall. She said to put her back on gluten for a week and she expected her to have mucus in her stool during this time and we would do some stool studies( previous stool studies showed split fat in her stool). I asked her about "what if her gut has healed and it takes longer than one week, she said as long as she was not having symptoms, including any behavioral problems to keep her on gluten. Well she has been eating gluten for about a month or so now and she has had no mucus or complaints of abdominal pain, and she is happy to be eating gluten again. I got a hard time from lots of people having her on a gluten free diet without a definative diagnosis, even though I was just doing what my pediatrician advised me to do. But now life is easier with birthday parties and eating out etc., but I can't help but feel like I may be giving her something that may be doing her damage, and that makes me very uneasy. I am still waiting to see what happens, but I am thinking of asking her to repeat the celiac panel, since she has been having gluten. Following a gluten free diet is very hard and I don't want to impose this on her unnecessarily, but I don't want to feed her food that may cause her to develop cancer, or be infertile, etc. I seem to remember reading about a honeymoon phase that kids can have, between the ages of 6-11 or something, is this what's going on? I don't know, and I'm not sure what my next step should be if anything?! What to do?

[jerseyangel]

I can only tell you what I would do if this were one of my sons--since she's doing ok on gluten, I would at this point consider this a gluten challenge and keep her on it for a good 4-6 months. The longer the better as long as she's feeling good. At that point, I would insist on them repeating the Celiac Panel.

I would remain very cautious even if it's still negative because years ago doctors told parents of Celiac kids that after their symptoms went away on the gluten-free diet, they could go back on gluten--and we now know that that was the wrong way to go. If it's Celiac, it won't go away even if the symptoms seem to.

Best of luck!

[Pattymom]

This is the struggle I feel with my kids who are not officially diagnosed. With my 3 year old, we did a month long glutne challenge and a scope and it showed nothing, the Gi said how great we dont' have to wrry about ogign to school and parties, etc. however, he knows are home is gluten free, as I am diagnosed officially, and he says it's a healthy diet and I can certainly keep her on it if I want. She did get behavioral symptoms and some constipation, though it's so hard to stick to a diet when the evidence doesnt' support you, and thus, neither do you many people. Her symptoms were awful on it, just enough to muddyeverything.

my son, 7, is also gluten free, following advice from a naturopath. he wasnt' tested before, and I regret that, though he has fewere stomach aches, he did not grow, gain weight, or improve his ADD like I was hoping. It's so hard to know.

Now my 13 year old son, had lots of GI complaints at age 5-7, we never tested for celiac then, I wasn't diagnosed yet, I didn't know and my then family MD wasn't useful. It went away on it's own mostly, and did come back with a vengance at around 12. He noticed that the symptoms were way worse when he ate gluten ( at parties, scout, etc) and took himself off in February. He now feels great, yet, has started cheating some, since, again we have no evidence and it's so hard when you are out to be different.

I would go with the few months nice long trial, and the repeat testing. the you can get a good answer.

Good luck.

Patty

[Amyleigh0007]

I agree with jerseyangel. I would take this time as a challenge and have her officially tested at the end. I think that is a great idea.

[JAMR]

I have identical 11yr old triplet daughters, I have celiac myself (genes positive, DH and diet proof). They tested negative on celiac gene, antibodies, yet have many but mild symptoms similar to mine. Eczema, issues in gut, slow to gain weight, lethargic, fat in the stool. I decided to put just one on a gluten-free diet for 3 weeks (and dairy and yeast free). The weeks is over tomorrow, her stolls have improved (1 a day from 2 or 3), less fat in the stools, better color, less muscle aches but having said that its not overly dramatic. I am expecting to use her return to gluten (and dairy and yeast) as a challenge. My fear is nothing really definitive comes out, so I might conclude that something else is responsible for the symptoms, like fructose or soy, or chemicals. Its frustrating, and I do not wnat her (and probably the other 2 girls) to have celilac, but at least it would be something that can be addressed. My own diagnosis took a few years, and plenty of trial and error. Now I have done it (and apart from the accidents, I am feeling like a miracle man.

I will just have to take it a step at a time, document symptoms, diet as we go and work with what I have got. Celiac is such a difficult one to pin, and I do not want to impose a difficult diet regime for no good reason. My concern is that the dna test was not done correctly and the antibody tests are only 80% good. I understand the dna test is definitive, al I have readsays that if dna is negative, then you cannot get celiac? Anyone hear any different?