How To Plan Pregnancy Around Testing?

[Poppy]

Hello All,

I'm happy to have found you. Am wondering what you think of the following:

I was diagnosed with celiac when I was less than 2 years old--it was an eyeball diagnosis made by a pediatrician when my mother went to find out why I was not growing. This would have been in 1965. The doc told her to take me off of gluten, which she did, and I rapidly recovered. She was not told that this is a lifelong condition, so she reintroduced me later, and I did not suffer.

As an adult I became chronically constipated and bloated. When I began trying to get pregnant with my first child (at 36 years), it did not happen for over a year. My nutritionist suggested that I go off gluten (I told her about the celiac diagnosis) and I was pregnant inside of three months.

When my baby developed excema, I took an ELISA/ACT test to see what in my breast milk he may be allergic too, and the results indicated that I was not allergic to gluten (I was on a gluten-free diet but was probably getting traces).

Now I am 40 and trying to get pregnant again. I recently had the anti-gliadin test done, which showed up as negative, and my doctor feels confident about this result. My little bit of research indicates that this confidence may be unwarranted. So now I am wondering: should I do a celiac challenge and do the bloodwork again, now, before getting pregnant, so that I can consider getting my son tested? Or should I wait until after I have had my second child, since the gluten can lead to infertility and miscarriage (just miscarried this last month, am not excited about a possible repeat experience)? Should I try the Enterolab test? How reliable is it? And what is "transient gluten intolerance" and how is it diagnosed?

Lots of questions, I know, but I would be very grateful for any input.

Thanks in advance!!

[lovegrov]

Given your history, I'd say there's little doubt you have celiac. I know you went through a period where you ate gluten with no problem, but that's very, very common in the teen years. In fact, it's almost normal.

If you have celiac but are not allergic to gluten (these two are COMPLETELY different), then the ELISA will be negative. ELISA is NOT a test for celiac.

Unless you must must have a celiac diagnosis, I would stay off gltuen as you try to get pregnant again. IF you have celiac and you're eating gluten, pregnancy will be much more difficult, and even more so at your age.

richard

[Linda74]

I agree with Richard, stay off if you are feeling well. I may be a newbie, but I have read enough to say that your blood tests (anti gliadin, endomyseal etc) should be negative if you are off the gluten, that's how they monitor your progress. Further, there are a few blood tests (antibodies) for celiac, none of which are 100%. People can be diagnosed with biopsy who have had all negative blood results.

As for your baby, you get him tested if you think he is developing signs and symptoms of the disease. ( I have a 7 month old and have been discussing a lot of things like this with my pediatrician- when to test, do I introduce gluten if he is not showing any signs etc. . .) You would get him tested even if you didn't have the disease and he seemed sick, so does it really matter if you have a stone cold diagnosis? The biggest hurdle is getting the doctor thinking about it and you will have no problem with that. Also, eczema and other dry skin related diseases are actually really common in kids, so I don't know if you can relate that the gluten or not ( obviously, I don't have all the information). I am certainly not telling you that your baby does not have celiac, just that common things are common and eczema and other skin things are VERY common in babies, who often outgrow them.

If you are trying to get pregnant, given that you are a little older (no offense here), I would say there is little time to waste. You can always do your challenge later if you really feel the need to know 100%.

These are obviously just my thoughts. I wish you all the best and good luck with your child and the plan for a new one!!

Linda

(Diagnosed 11/04)