More Testing For 6 Year Old? And Family?

[expeditionfamily]

Hi, I also posted this in the "testing" section, so I hope that was okay.

History: My almost-6-year-old daughter (birthday is in 2 days!) is a highly sensitive, intelligent, spririted, difficult child. She was very fussy as a baby (in the middle of the night, of course!). She has complained of mild stomache-aches for as long as I can remember, which have always been talked away by her pediatricans. They were never so serious that we took them seriously, I guess. She has had major tantrums since 18mo. old, often to seemingly minor things. She has alwasy been very little - 6lbs, 13oz at birth, and rode the 5%-15% percentile in height/weight ever since.

I took her to an ND in April and he had the US BioTek IgG test performed. Her results showed "moderate" levels of IgG antibodies detected for milk/casein and "high" levels for wheat/spelt/gliatin/gluten. She has been eating gluten/dairy free since May. She has been very agreeable to this diet which makes me think that it makes her feel better. Her diet prior to this contained ALOT of gluten and dairy products.

She seems to have fewer stomachaches, although they haven't gone away completely. Her behavior is improved, although I'm not sure this isn't just maturity kicking in.

Questions:

1. Should I have additional blood tests done? I feel like it would be easy to slip from this diet now because she knows that it "only gives her a little tummy-ache" and she is sometimes willing to put up with that. It seems like having an actual diagnosis and knowledge that eating gluten/(casein?) is harming her body would help us to stay the course.

2. Should the rest of our family be tested? If so, what tests should we do? More than just the IgG test? My husband has always had stomache issues but has never had them treated/tested. My son, who is almost 4, does not complain of stomach pain, although his stools are frequently loose and floating, and he has a bit of "pot belly". I am slightly overweight, frequently feel depressed and fatiqued, and have very hard/large stools.

I appreciate any help you can offer. I'm struggling with preparing separate meals for her at this point as all of us have not jumped on board dietwise.

[Ursa Major]

The testing the ND did is valid, and the positive antibody test along with the diet bringing improvement is really all the diagnosis you should need to realize that your daughter has celiac disease and absolutely should stay on the gluten-free diet for life.

It sounds like your whole family should be on the gluten-free diet, as you sound like you all have problems with gluten and probably dairy as well.

Any testing you would do with your daughter now (unless you do the tests by Enterolab) will be useless. Because in order for them to be accurate, you have to actively have eaten quite a lot of gluten for the past several months.

Actually, temper tantrums, especially in young children, are a VERY common sign of celiac disease. One of my granddaughters had many horrible temper tantrums from the time my daughter put her on solids, until she put her on the gluten-free diet at the age of 15 months. Suddenly, the temper tantrums all but stopped. So, I very much doubt that it is a coincidence that your daughter's tantrums have stopped.

Yes, it would be a good idea to have the rest of your family tested. Have a celiac blood panel done by your regular MD. Your son's symptoms are also typical of celiac disease, and the potbelly is very telling.

Just be aware that celiac disease testing is notoriously unreliable in children under six, and he may end up getting false negatives as a result. In young children the best and only completely reliable test is trying the gluten-free diet.