Just Joined And, Guess!, Have Questions

[kaylee]

Hello everyone,

I have been getting an awful lot out of reading these boards over the past little while and have just joined so I can partipate. It feels like a really nice shared space.

I am writing because I have been concerned for my son. almost 18 months old, for many months already. Doing a search on the internet of his main symptoms brought celiac disease into view. The symptoms have been: chronically distended belly, very small size (although weight good), some diarrhea/constipation, frequently flushed and sandpapery cheeks, very poor sleep, anemia, and, above all, chronic extreme (and to us for months, incomprehensible) irritability with out of the blue fits of screaming.

Cutting a long story short, antigliadin tests were done and came back negative (iga <1!). My son had been off gluten for 3 weeks when blood was taken as I had figured out by then that there must be some dietary thing happening. The change in him since he has been gluten-free is spectacular, with the screaming completely stopped and the irritability down to what I would call toddler normal. He is a transformed child (and it feels terrible to know he was suffering physically for so long ...).

Anyway, that there is some problem with wheat is obvious, but this is where I have questions. What IS the problem?? I have come to understand that negative bloodwork does not necessarily equal absence of celiac disease. I really would prefer to have an idea of whether this is simply a transitory childhood intolerance (which is what I am hoping!) or whether it is in fact a lifelong disease. Since you have had vast and varied experiences, I am hoping you will share thoughts, suggestions as to next steps, similar experiences and what you did etc.

The one thing is, at this stage it is out of the question for me to put him back on gluten. There have been 3 also very spectacular and unplanned gluten challenges (er, mistakes on my part re: labels) which show he has become highly sensitized to the stuff even in trace quantities since becoming gluten-free.

I'm sorry this is so long. Life has been intense recently and makes it hard for me to fit it into a reasonable paragraph! Thank you very much in advance for your input. Kevyn

[tarnalberry]

Well, there are two issues...

1. If his IgA was that low, he may have been IgA deficient, in which case a low IgA reading wouldn't be able to tell you if he was celiac or not. (Did he have the full panel of blood tests, including tTg?)

2. He had been gluten free for three weeks. There may not have been any further antibodies in his system to show up on the test.

You could try an allergist, to see if a different test can determine wheat allergy (as opposed to gluten intolerance - two different things), or you can go off the the results of the dietary challenge.

[Guest jhmom]

My son had been off gluten for 3 weeks when blood was taken as I had figured out by then that there must be some dietary thing happening. The change in him since he has been gluten-free is spectacular, with the screaming completely stopped and the irritability down to what I would call toddler normal. He is a transformed child (and it feels terrible to know he was suffering physically for so long ...).

In my opinion, this statement above in itself is a TEST! An improvement on a gluten-free diet is considered a test and accepted by some doctors out there. If your child had Celiac or gluten sensitivity it is a "lifelong" illness and he will always have to adhere to a gluten-free diet.

Good luck to you and your family

[kaylee]

Thanks for your ideas. I agree that the difference in diet is a test in and of itself and actually a very powerful one for seeing that wheat/gluten is a general problem. I'm just feeling somehow at this early stage that I want a clearer picture about what is underlying the whole thing!

With regards to IgA deficiency - is it only of interest if the IgG is high (which was not the case)? As far as I know, only the antigliadin tests were done. I only found out about all the other tests AFTER these had been done so didn't know to ask for them.

I'm just feeling unsure about how far to pursue this right now. I would be grateful for any more thoughts on the matter (and then I will start moving on!).

Thanks so much -

Kevyn

[lovegrov]

If you can't put him back on gluten because of the terrible reactions, there might not be much more you can do from a testing standpoint. For an accurate test, he has to be eating gluten.

If he has an allergy, it's possible he can outgrow that. But if it's celiac, it's celiac for life. Some people do indeed seem to go into remission as teenagers but it comes back. In addition, even when it's in "remission," you might be setting yourself up for other autoimmune diseases and problems if you eat gluten.

richard

[YankeeDB]

Another thought is to do a stool test via enterolab. (www.enterolab.com) They claim to detect gluten sensitivity even after a period of being gluten-free as the anti-bodies linger in the stool longer than in the blood. There is also something called a "rectal challenge" but that might not be something you want to put your little one through!