Should We Re-Test?

[Irishgirl76]

Hello,

Just to give a bit of background, last year I became interested in the general health benefits of going gluten-free. I started reading about the Paleo Diet, and began clearing all processed foods, grains, and legumes out of my kitchen and quickly noticed an improvemenr in our health. After some time, and lots of reading, I thought that my children and I likely had some issues relating to gluten. I was also planning on having my 7-yr old daughter assessed for Aspergers Syndrome due to some social/behavioural/emotional issues, and knew that a gluten-free diet was also very helpful for these kids. Just out of curiosity, I thought I would have us all tested for "gluten sensitivity", and was shocked when my daughter's blood test came back positive for Celiac, and my own came back indeterminate. My two boys (aged 5 and almost 3) came back negative. However, they have many symptoms similar to those of myself and my daughter.

I'm not sure which test they ran, exactly (I'm kicking myself for not taking note), but I do remember that it was only one test, and there were 3 letters (so not helpful, I know!). My doctor arranged for my daughter and i to have endoscopies but said the boys were totally fine. I'm concerned that their age might be a factor (maybe their antibodies aren't as high because they are so young?), and also I am still breastfeeding my almost-3-year old, and read a study that breastfeeding delays the onset of Celiac. Also, we were (mostly) gluten-free for a couple of months, and I only resumed gluten for a couple of weeks before the blood tests, and probably not enough gluten (as I had already purged my home of gluten and found it difficult to re-integrate it, so it was mostly when we ate out that we would have it).

To complicate things, I am a single mom, and my kids' dad lives a long distance away. They go to his home 5 times a year, for 2 weeks at a time. I believe in order for him to take this seriously, I need to have all the kids DX'd if they actually have it (even though I would treat the younger two as Celiac anyway, I don't believe he would).

We are now back on heavy gluten while awaiting biopsies. If I'm going to have the boys re-tested, now is obviously the time. Also, with my blood results "indeterminate",I'm wondering if I should have my bloodwork re-done, in case I end up with a false negatve on biopsy. I live in Canada, and there is a tax credit for the incremental increase in the cost of gluten-free foods if you have diagnosed Celiac. Also, people take you more seriously if you say "I have Celiac Disease", vs "I have a gluten sensitivity".

Any thoughts? Are there specific tests I should be asking for? Are there tests that are more sensitive for young children?

Thanks very much,

Alissa

[psawyer]

Testing in children is hit-and-miss at best. The blood test is actually multiple tests, but I'm not the expert in that. Perhaps someone else can help.