New To This, Have Some Questions

[chrisd]

So my son has had severe constipation, soar distended stomach since he was about 3 months old. At about 11 months he started getting up every night screaming hysterically, not wanting to be touched, fed, held, nothing. He would just roll around the bed as if he were in pain. About this time he also became very sick for months with pneumonia and chronic sinus infections.

I was told by the Dr's that his hysterical fits was probably just a behavioral issue, even though he acted like he was in pain. I work with behavioral children and was told by a colleague that they have tried gluten free diets to help with this. So I tried it and like magic he started acting better, sleeping through the night, his bowels got better etc. The Dr's seem amazed by this and so the talk of celiac came up.

He was tested, but since he is currently gluten free it came back normal. He was shown to be anemic though. Now the Dr's are thinking of putting him back on gluten for a month to find out if he is really celiac. Is this the only way to truly determine celiac? Is there any other options? Part of me really wants to know for sure, but I don't want to cause him pain to find out. He is also taking supplements for his anemia, but he still looks sick, all the time.

This probably sounds very rambly, I'm just trying to find out some more information, opinions etc.

[ShayFL]

Unfortunately for a "gold standard" Dx, he will need to be eating gluten, get blood work and then a biopsy of his intestines. And the sad thing is that 1 month might not be long enough to get a positive. Add to that, there are naturally a lot of false negatives for children under the age of 6.

It is a hard decision for you to make for sure. I feel for you. But he might need to be on gluten (equiv to 3 or 4 slices of bread a day) for a good 3 months and even then it might be a false negative (young children's immune systems are not fully developed yet).

You could ask for a GENETIC test. Just to see if he even has the genes for Celiac. It will not Dx Celiac, but it will give you another piece to the puzzle.

If it were me, personally, I would keep my child gluten-free. You already have a positive response to the diet. The anemia should improve naturally with time and eating iron rich foods. Consider Floravital gluten-free. Gets the iron up fast and gently. No constipation and no tummy upset.

[Lisa]

So my son has had severe constipation, soar distended stomach since he was about 3 months old. At about 11 months he started getting up every night screaming hysterically, not wanting to be touched, fed, held, nothing. He would just roll around the bed as if he were in pain. About this time he also became very sick for months with pneumonia and chronic sinus infections.

I was told by the Dr's that his hysterical fits was probably just a behavioral issue, even though he acted like he was in pain. I work with behavioral children and was told by a colleague that they have tried gluten free diets to help with this. So I tried it and like magic he started acting better, sleeping through the night, his bowels got better etc. The Dr's seem amazed by this and so the talk of celiac came up.

He was tested, but since he is currently gluten free it came back normal. He was shown to be anemic though. Now the Dr's are thinking of putting him back on gluten for a month to find out if he is really celiac. Is this the only way to truly determine celiac? Is there any other options? Part of me really wants to know for sure, but I don't want to cause him pain to find out. He is also taking supplements for his anemia, but he still looks sick, all the time.

This probably sounds very rambly, I'm just trying to find out some more information, opinions etc.

Welcome Chrisd,

Testing children under the age of 5 is known to be unreliable. Testing for adults is not what we would like regarding accuracy. There is a gene test that could be done, regardless of the gluten status of your son.

Celiac tendency can be inherited. Perhaps you or your husband have had digestive issues.

I always hate it when doctors want to add gluten back to a child's diet, when it creates such discomfort, for the sake of a diagnosis. I also understand the need to know.

I will let the other mothers who have dealt with this choice, add their comments.

Good luck and glad to have you here.

[Fiddle-Faddle]

My children do not have nearly the terrible reactions to gluten that your son has--and yet I have decided to make them gluten-free, and we didn't bother with an endoscopy.

2 of them had so much improvement on a gluten-LITE diet (because I was gluten-free, so I wasn't making gluteny breakfasts and dinners), that we tried gluten-free, with even more improvement. We did 2 gluten challenges, and that was enough to convince me that gluten does not belong in their bodies.

I couldn't care less if it's celiac or gluten intolerance. The end result is the same:no gluten.

In addition to the endoscopy/biopsy being unreliable, it is not 100% safe. The procedure involves sedation--which is maybe 95-99% safe for children, but what if your child is the one that has a bad reaction to the sedation? And for what? The possibility that the doctor will tell you that your child can or can't eat gluten? You already know he shouldn't. And this is flu season now, and MRSA infections are on the uprise in hospitals. Not a risk I would take unless there were no alternatives. But the alternatives are clear--blood work and dietary response. You already have the dietary response.

Now, if there is a clear reason to look for something else (other than damaged villi), I'm all for it, but that likelihood seems small at this point.

At any rate, you always have the option of doing an endoscopy down the road. Since you KNOW gluten is an issue, damaged villi should be gone on a gluten-free diet, so they should be looking for something else if symptoms continue.

[chrisd]

Wow, thanks for all the speedy replies! Yeah I was starting to lean towards not putting him back on gluten, just because of all the pain and upset it will cause. Its nice to hear others opinions and sides to this, especially when others have dealt with it longer. So again, thanks for all of your input!