hospital suspect coeliac disease, i still think dairy is the problem - advice needed please

[JackJacksmummy]

My DS is almost 4 and for as long as i can remember he had had sticky - gluey, vile smelling poo (sorry TMI)
Last year he started to develop these weird spots on his legs, ankles and tummy.
We have taken him to the doctor numerous times and was eventually referred to the hospital and he had blood test.

The doctor got the results through before the hospital and his coeliac screen came back clear but IgE levels came back "high"

We had stopped him on all dairy products - poo became more solid and "normal" smelling and the spots are not as often although still does get them when we've accidently given him something which has milk but using a different name IYKWIM - usually this is also reflected in his poo also.

Anyway, the consultant at the hospital said today he is NOT allergic to milk and they suspect coeliacs although he is growing at a "phenominal" rate compared to what they would expect.

He is tall for his age, in 4-5 year old clothes but not fat - not boney either though.

I dont know what to do other than pay for private testing to rule out the dairy allergy for myself.

what do you think?
Sorry i have missed out loads of other things too so please ask more Qs if you need to.

The thing is, that coeliac disease can cause dairy intolerance as the villi are damaged and stop producing lactase, which is required to digest the lactose in milk.

Presumably they are going to do a biopsy which will show whether he has coeliac disease anyway ?

Personally, I'm tall and was never very thin, but have coeliac disease, and looking back I know that I had symptoms as a child, so it doesn't always happen that coeliacs are thin and don't grow.

the only way to get a result for coeliac disease is to do a gut biopsy, so I suspect private testing isn't going to tell you much more than you have already.

I'm not an expert on coeliac in children; you need flaming toaster for that; but regarding growth, mine was normal all my life and I was in fact overweight when I was finally diagnosed at age 35.

Many coelicas also have a short term lactiose intolerance as their gut can not process the lactose as it is so damaged from the coeliac disease. It could be a combination of the two. I know that I couldn't tolerate lactose for ages after my diagnosis.

Sorry I'm not much more help than that, but there is more info on coeliac disease and symptoms/diagnosis here

aha cross posts cmot

thanks for the info - they want another stool sample and more blood tests because they seem to have lost some information before they make any definite decisions on where we go from here.

If you do a search for flaming toaster under the allergies topic she has posted stuff about IgA and IgG tests before which might help clarify things for you.

I hope you get an answer soon