New Here And Doctor/hospital Dont Know What They Are Doing

[alexsmummy]

Hi Everyone.

My son - Alex - will be 4 in October and since he was born he has suffered with chest/ear infections.

Once he became potty trained we realised that he still had a problem with his poo - nasty sticky diarreah which smell really really nasty and was never once solid.

Last summer when he was 2 almost 3 we noticed he kept getting this rash on his legs, tummy and ankles - sometimes his wrists too.

http://i30.photobucket.com/albums/c301/Hel...moto_0099-1.webp

We assumed it was something to do with the washing powder or softner so spent a while trying out various ones.

At the beginning of this year we decided nothing seemed to be working so took him to the doctors who referred us to the hospital.

There we had blood tests to check what it could be - they suspected coeliacs or a dairy allergy.

The results came back to my doctor and we was told the coeliacs was clear but he had high IgEs (?).

We had waited til our next appoinment (today) to see where we go from here only to be told by the consultant that he is NOT allergic to milk and they still suspect coeliac disease but aren't sure because he is growing normally and his metabolllism seems fine.

He has to have more blood tests and another stool sample.

The thing is, i am not convinced, i think it could still be dairy.

We took him off milk, cheese and yoghurt and the rash became less often and for the first time in his life he had a solid normal poo. If we accidently give him any of these things he will flare up again and we know the next day when he has his spots back and a really nasty nappy the next morning (he still wears a nappy at night time and chooses to do his poo in it every morning)

He also suffers from glue ear and will most probably need grommets.

any advice most welcome

Helen

[April in KC]

There we had blood tests to check what it could be - they suspected coeliacs or a dairy allergy.

The results came back to my doctor and we was told the coeliacs was clear but he had high IgEs (?).

We had waited til our next appoinment (today) to see where we go from here only to be told by the consultant that he is NOT allergic to milk and they still suspect coeliac disease but aren't sure because he is growing normally and his metabolllism seems fine.

He has to have more blood tests and another stool sample.

The thing is, i am not convinced, i think it could still be dairy.

We took him off milk, cheese and yoghurt and the rash became less often and for the first time in his life he had a solid normal poo. If we accidently give him any of these things he will flare up again and we know the next day when he has his spots back and a really nasty nappy the next morning (he still wears a nappy at night time and chooses to do his poo in it every morning)

Hi Helen - sorry you're going through such a confusing time in the search to find answers for your son. My oldest son has multiple coexisting conditions - Celiac Disease, IGE food allergies (to peanut, soy, pork, oranges, plus elevated total IGE which means he can develop new allergies), plus a GI condition called eosinophilic gastroenteritis. Eosinophilic disorders have food and sometimes environmental allergy triggers. They affect the GI tract, but they occur in kids with a history of atopic illnesses like eczema and food allergies...significantly for you, also elevated IGE. You might check out the APFED.com website for more info on EOS. I'm not saying your son has an EOS disorder, only that it's possible.

Coexisting conditions can throw doctors for a loop sometimes.

Are you in the UK? I'm in the U.S. Do you have access to specialists like a pediatric GI and a board-certified allergist? If so, you may need them both. If you have any input, ask for a GI who is familiar with eosinophilic disorders...since your child has high levels of IGE it would be good to be evaluated for that. There are numerous other GI conditions, too. It's rare to find one specialist who understands diseases outside their specialty...so you need multple perspectives. The typical GI person might not know much about IGE allergies, and the allergist or pediatrician might not know much about Celiac Disease. I asked around until I found a GI who specialized in treating kids who also had food allergies.

It sounds like you might have at least two things going on...gluten sensitivity (indicated by the positive Celiac blood work) and some type of IGE allergies. In my opinion, the two can be related - since the "leaky gut" of Celiac can allow undigested food proteins to escape from the intestine, where they can be identified and attacked by the body's immune system.

If your son has positive Celiac-related blood work, he should not ever eat gluten (even if it does not seem to trigger many symptoms right now). The exception would be if they are asking him to stay on gluten long enough to retest and/or do an endoscopy with biopsies.

It does not matter whether he is normal height--so was my son--but Celiac was affecting my son's absorbtion of vitamins. Physicians who think that kids with Celiac Disease must be wasting away are out of touch with the latest science, which shows there are a variety of presentations. And Celiac is a lifetime, genetic condition...it can't be cured. If you keep a Celiac off gluten from a very young age, you will greatly increase his chances to have a healthy life.

Does your son have any other symptoms? At four, it was beginning to be clear that my son had some behavioral disturbances and also some subtle gross motor delays. Sometimes those things aren't clear until you get around other kids of the same age and make comparisons.

If your son does better without milk, remove it. Some of these food-triggered conditions are tricky to identify. Have you RAST tested your son for milk? This will show his IGE level just for milk. But also remember that eosinophilic disorders can be triggered by a food that does not show up on a standard IGE allergy test. Celiacs can be lactose intolerant while their villi are damaged, and if you read here, you'll find that some Celiacs have a permanent intolerance to a protein in milk called casein. One theory for this intolerance is that casein and gluten molecules are similar enough that some Celiacs' immune systems mistake casein for gluten.

If possible, obtain copies of your son's blood tests, particularly the Celiac-related tests and any blood work that showed elevated levels of IGE. Do you know if they only tested "Total serum IGE" or if they tested food-specific levels of IGE?

Some ideas....ask to have several of your son's vitamin levels checked if his BMs have not been normal for a long time. A, D, E, and K are the fat-soluble vitamins. Others to check might be the B vitamins - others here might have suggestions.

If you're looking for websites related to IGE allergies or eosinophilic disorders, let me know.

Good luck - and trust your mom instincts.

[NewGFMom]

Hi there,

My son had a very abnormal celiac blood panel when he was 3 and he was growing pretty normally. He had had a few dr's visits with low weight gain over the years, but his long term growth told a very normal story.

But he was plagued by stomachaches and weird poop. So they did the celiac panel, more to rule it out and lo and behold! his labs weren't even close to normal.

If your son's celiac labs were borderline, I'd definitely have him tested again. My husband got tested and was low positive (TTG was 11 and normal is 1-5). He did the biopsy and they redid the blood work and his TTG was 0 the next time and his biopsy was negative. Keep in mind that my husband has NO symptoms and the only reason for the test was that he has a celiac child.

If you're hesitant to pull the gluten, I'd wait until you can get more definitive testing. The biopsy really isn't that big of a deal. It's scary to go through it, but the procedure is really minimally invasive and it could give you some real insight into what's going wrong. If it's not celiac, maybe they'll find out what is while they're looking.

I agree with the last poster that you should see a celiac specialist that really understands the symptom spectrum of this disease. Personally, I find it much easier to live without gluten than dairy The problem with pulling foods is that it takes a while to see any definitive results. It took my son nearly a year to heal and for his stomach to stop hurting after we pulled the gluten.

best of luck to you and trust your instincts. You know your kid better than anyone.