kaylee

My understanding is that the antigliadin tests could be high if you have a wheat allergy (as opposed to celiac disease). The thing is, I'm not sure if you would expect both IgA AND IgG to be high in wheat allergy, or if just one or the other being high is enogh to suggest this. Something to look into a bit farther.

Best,

Kaylee

Hi Mel,

I am currently trying to figure things out with my 18-month-old son and can really relate to all the questions/frustrations/uncertainties on the one hand and the intense desire to get things moving on the other. I fully agree that waiting until July is NOT a good plan - for your daughter, for you , for your family for obvious reasons.

We were so concerned about our son's symptoms that we charged ahead and removed wheat from his diet because we figured that his problems were linked to something he was eating on a very regular basis. Unfortunately I hadn't done all the research on celiac disease that I have since done, so by the time he was tested he had already been gluten-free for a while. You obviously have to decide how best to convince your doctor of the importance of the testing, probably also emphasizing the fact that you would like to try the gluten free diet for her for a while and that the testing therefore must be done before she is gluten-free.

But that's not my point - my point is this: the results of removing gluten from our son's diet were so amazing that it became obvious within about 5 days that we were on to something. After 10 days there was no room left for doubt that gluten had been having a major and very negative impact. Although the change in eating habits is very big and requires a lot of thought and inhabitual preparation to start with, if gluten IS a problem then you will be delighted by its removal, even if complicated to get used to, because of how much better your daughter will feel. You could go the elimination diet way, but you could also just start going gluten-free and wait for a few weeks to see whether there are any positive changes with just that. There will be time to eliminate other things along the way. We eliminated dairy products after a week without gluten and that was clearly also a good move here for now, but everyone is different.

Although your situation with travelling and your mother-in-law sounds stressful, maybe rather than thinking about how stressful it is it would help to focus on seeing the diet as an initially short-term experiment - try ot out and see what happens! There are all sorts of things for children to eat that are gluten-free and appetizing. ALso, rather than wasting away with a restricted diet, if gluten has been a problem then your daughter could quite possibly start to gain some weight.

Best,

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

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