Help Need Advice!

[celiacboy]

I am new at this so sorry if I ramble on too much!

My son who is nine years old now, has been a diagnosed celiac for 5 years now. He has done very well with the gluten free diet, but his symptoms have never fully or even close to fully gone away. Recently we seen a new specialist who did the endoscopy, and showed no signs of celiac disease. This specialist said this was because he was on the gluten free diet. Our old speacilist who has now retired, told us that once you test positive for celiac disease you will always test positve.

Now for the frustrating part, my son as I said before is 9 and just finished the third grade, he has missed about 40 days of school, with stomach aches, headaches, and some days his legs are in such pain that he can't even walk. We have seen many different types of doctors, and had many tests run, but nothing will show up.

So we are frustrated with the different answers from the two speacilists and not getting answers or explanations as to what is going on, so we did the unthinkable or what we thought was the unthinkable we let him eat gluten. This is a child who has probably has one normal bowel a month, has had a normal bowel everyday since but one, has had 1 stomach ache, no headaches, and severe leg pain, but not to the point that he couldn't walk.

Please help, I am confused, as I know that gluten can damage him worse, but how do I know if he truly is celiac?

Thank You in advance for any help!

celiacboy

[judy05]

Please help, I am confused, as I know that gluten can damage him worse, but how do I know if he truly is celiac?

I don't know if you have done this already but I would do a gene test or at least have him tested through Enterolab, thats the only way you will know for sure. Is he off dairy? That can cause a lot of the symptoms you describe. He could have other food intolerances and could be tested through York labs.

[KaitiUSA]

Our old speacilist who has now retired, told us that once you test positive for celiac disease you will always test positve.

This is false.Blood tests are done to see if someone is complying with the diet. The antibodies will go down when you are off of gluten.

Has he been 100% gluten free? Are even his products like things he uses on his face, head, and hands gluten free? These things have a high chance of getting into the mouth.

If he has been 100% gluten free do you think there could be another food intolerance? Maybe a testing to see if he can't handle other foods would help.

You truly know he is celiac because he tested positive and was diagnosed. Celiac is commonly overlooked, so the fact that they were able to pick up on that was great.

Also a gene test would be good. 98% of celiacs have the HLA-DQ2 or HLA-DQ8 gene. These predispose you to getting celiac.

[Boojca]

While it is true that once a Celiac, always a Celiac, it is not true that your blood tests or biopsy will always show Celiac. If you go gluten-free, and are faithful, your tests will actually look like you DO NOT have Celiac bc your body has healed. So, my first advice would be to have your sons blood tested to see what his levels are. The biopsy is tricky, bc the whole intestine is not necessarily damaged and if they biopsy in palces there is no damage it will not show up. I would have the whole TTG screen done and see what the numbers say. Because he's 9 he is on his own a lot (I'm assuming) whether it be at school or with friends, so it could be he's getting gluten when he's not with you. I would get the blood tests and see.

Are you ABSOLUTELY positive that you are completely gluten free? Sometimes people think they are, and are actually including even one thing that has gluten in it and that prevents them from healing?

I guess the other suggestion would be to then sit down with your new specialist and say, "Ok, so what else should we look for?" and just start hammering away at it. My gut, though, says that there must be gluten he's getting somewhere....and for some people, even a teeny tiny little bit (like even just some crumbs) can make them feel like they've been hit by a truck!

[cdford]

It is very possible that your child has some additional allergies that are impacting him. It is also very possible that unless you are extremely diligent he is getting gluten from a source you have not previously considered such as soap or laundry detergent. It is also possible that he has another illness going on in addition to the celiac disease. HOWEVER, unless you never allow your child to leave your sight and control, he is probably getting into gluten.

If your nine yr old is like my eleven yr old was, I'd bet he is sneaking gluten when you turn your back. If not intentionally, he is probably not questioning foods when he is with his friends at their houses or out to eat. If it looks gluten-free, it must be. We finally had to transition to making our home gluten-free totally and get her friends' parents involved to get her to stop. This may especially true if he overheard the comment from the doctor that he no longer tested positive. I got that one thrown in my face regularly. In his mind, that may have been the sweet notes of freedom. At one point, we just had to lay down the law and refuse to allow her to go anywhere else without us until she decided it was worth it.

We caught Jenn sneaking into the kitchen at night and snitching her brothers' snacks. We found out she was swapping her gluten-free lunches for stuff at school. She would also "conveniently forget" to take her lunch and was "forced" to get something at school. I finally talked with her teacher and no longer sent emergency money for her to eat there.

We at one point refused to allow her to go back to the grandparents' houses because they would not keep her out of their Lil' Debbies...they would eat their biscuits and gravy in front of her (even taunting her with it sometimes and laughing about her overprotective mother) and one of them took her out for waffles in the middle of the night! That did not end until my mother got really sick and her GI doc told her he thought it was celiac disease. They then decided it was a real disease once they researched it for themselves. Now they are much better.

Once she got a little older and decided that she did not like the scars from the DH spots all over her or the foggy brain and fatigue, she began to make a little more effort. She still will not be bold, but at least she just says she isn't hungry or will eat what I send for her. I go so far as to find out which restaurant the friend's parents plan to eat at and take her the day before to find out what she can order. If she knows, she will simply order it and not make a big deal out of it.

Maybe one day she will decide to be bold, but for now I have to do it for her. Good luck over the next several years. I wasn't sure for a while there if Jenn would live through them.

[connole1056]

All the conflicting information from specialists really bothers me. Especially when the specialists are "experts".I do not think anyone is an expert on anything. It does sound like your child has another intolerance or allergy, if he is absolutely not ingesting gluten. Does he have DH as well? I could not tell from your post, but you did not mention rashes or anything similar so it seems he is not. What about a blood test that would reveal markers for celiac disease? The results of test would not change.I never heard they were done only to determine diet compliance. Was your son diagnosed with an intestinal biopsy? That is the best thing to have done to diagnose celiac disease, but not after going gluten-free because the healed villi would not show celiac disease. I could not understand if you were saying while gluten-free your son had one bowel movement a month, but since eating gluten he has had one every day but one. And it also seemed he had not had headaches and one stomachache since he went back on gluten. But the legs got worse? I am not sure if that is what you meant, but that is how I understood it because you said he's had normal bowels everyday since I took it as meaning since he started eating gluten again.Wouldn't that seem like it was not gluten that he had a problem with? That is what is confusing me. You said you let him eat gluten, but is he still eating it and doing better on those areas, or they have gotten better since he went gluten-free?

[tarnalberry]

How was he initially diagnosed?

[Guest Lucy]

if your son has yeast in his intestins it will act as gluten. Put him on acidophylos or over the counter caprylic acid. You can get these at most health food stores. This would clear up the yeast and then he should respond to gluten free diet.