Hi Jessie,

If they ran a single antibody test, it was probably the anti-tTG, and when that is positive it is almost most certain one has celiac disease (95% positive predictive rate). There are other antibody tests sometimes run in conjunction with celiac testing (anti-endomysial and anti-gliadin), but the anti-tTG is sometimes used as a stand alone test.

There are a couple different ways that lab ranges can be set. I am more familiar with one where > 30 is moderate to high positive, but I know I have heard of labs who use ranges than are in the single digits. It depends on the lab. You might want to ask for a copy of the lab report, and that will give the ranges on it. Or, if you know the lab, sometimes you can google up the ranges they use.

Some of your daughter's other health problems may possibly be related to underlying celiac disease. Hypotonia and development delays are also associated with celiac disease.

I've heard remarkable stories about children who weren't walking or talking, doing so once they removed gluten. I've heard of great leaps forward in regard to various learning and developmental delays (including visual/spatial, eye/hand cooridination, balance) in some children. So, there is at least a chance for some improvements in those areas, although, not always so.

You can check out The Gluten File for more on these subjects...also browse through the pages on various neurological manifestations of gluten sensitivity.

Diagnostic Testing
ADHD (there is some info regarding developemental delays, etc, here)


Because celiac disease is a genetic disease, your daughter's doctor should recommend that every blood family member be tested. You might want to browse The Gluten File keeping in mind any family medical history... as it might shed new light. Also, celiac disease can develop at any age in life, so ruling it out at one point does not mean that it is ruled out forever. Periodic retesting should be done every 3-5 years, or sooner if symptoms arise.

Here are some excellent overview articles:
Detecting Celiac Disease in Your Patients by Harold T. Pruessner, MD (AAFP)

Gluten-Sensitive Enteropathy (Celiac Disease): More Common Than You Think by David A. Nelson, JR, MD, MS (AAFP)


As for whether to keep the entire house gluten free... you have a little time to ponder over that for a bit. There are people who successfully manage mixed households, while others feel it easier/better to make the entire house gluten free. We should probably begin a whole new thread just to discuss those considerations.

I do keep a gluten free house...and that began mostly to support my daughter, rather than cross contamination issues. I'll explain all my reasoning later...have to run for now!

Hope this helps!

Cara

BTW... do not worry! The diet is very manageable once you get familiar with it. There are definite obstacles and frustrations, but it is very doable.