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Very Confused
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5 posts in this topic

Hi,

First off, my name is Jessie and I just found the website tonight. I am very confused! I have a 21 month old son who has had serious health issues for about the last year. Starting with Upper Respitory infections, horrible diahhrea, 2 bouts of pneumonia, Benign Transient Hyperphosphatasemia, IgA deficient, IgG too active, etc etc etc. About a month ago he developed an AMAZING appetite. He eats more than his daddy! He looked like he was getting skinnier to me so on Friday we went and had him weighed. His growth had started to slow down when he started getting sick but he hasn't grown any longer or gained any weight since October. We are running stool cultures and have a followup appointment with his Ped to discuss those results and what might be going on.

I work at a medical clinic and one of my nurse practitioners suggested Celiac to me. After reading a little bit about it, it just sounds like Joshwa. EVERYTHING sounds like him. My BIL has Chrone's disease so is that a first degree relative?

My poor baby has had so much testing done in his life that he cries when someone comes at him with a stethoscope. I don't think that we're willing to do a biopsy at this point. Does anyone have any suggestions for non-invasive testing?

If you've read this far, thank you. I appreciate any help that you could throw my way. I promise that I won't be this long winded all the time! :rolleyes:

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There are stool tests avaiable. They are through enterolab and you can get information on them at their website. www.enterolab.com

There is always a celiac blood panel.

My son just had an endoscopy and biopsy done but not the blood test. The problem is that the biopsy can miss a spot of damage as it can be spotty..

The tests from enterolab are not generally accepted by most doctors out there as they are relatively new. But Dr. Fine is celiac and has pretty much dedicated his professional energies to helping those with celiac, and those who think that they have it..

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I've used Enterolab, and think very highly of them. We took my now nine month old grandson off milk after he had diarrhea, stomach cramps, severe diaper rash, and lots of distress. I am gluten sensitive and allergic to milk and dairy, and I sent for the full spectrum stool test from Dr. Fine ($368) and learned that our grandson is also gluten sensitive and allergic to milk and dairy. He has only eaten grains and milk by accident, and the consequences were so awful--crying, fussiness, inability to sleep, stomach distress, etc. for three days. He is now growing normally and is such a wonderfully happy little boy. I highly recommend the Enterolab test kit. At Christmas I gave the simple gluten sensitivity test kit to my husband, brother, sister, and three grown children ($118 each with 10% off each kit after the first) and we have since learned that my husband and brother are NOT gluten sensitive--yay! Theirs didn't test milk or dairy or if they carry the gene, as did my grandson's. We are daily becoming more aware of how to live with Celiac. I hope that you, too, find relief soon. My heart goes out to your little boy and you all. Welda

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Hi Welda in reading your post you talk about the enterolab and testing that they do. My Lily's GI doctor told me that there isn't a test to test for dairy protein defifiencies is this not true? I'm just curious? We eliminated her dairy and Lily has maintained a low iron level but it hasn't dropped to transfusion level so he said going by the process of elimination he was pretty sure that was the cause. Then she was sent for the celiac blood panel which came out positive GI doctor told me that it also can come out possitive if there is a dairy issue. I found this to be inconsistent and thought perhaps you had some knowledge of this?

Heather

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Heather, Try reading the article on Dr. Fines testing on Celiac.com. Many doctors seem to be resistent to his testing. But it seems Italian researchers are taking his testing very seriously. The article is "Italian Researchers Develop Ultra-Sensitive Intestinal Anti-Tissue Transglutaminase Celiac Disease Screening Technique. Many-many Celiacs do develop a problem with dairy products. But many of us also heal and can eventually use dair products. I did have to eliminate them for about 6 months. Now, after several years, I can use most dairy products, except to drink cow's milk. I use goat milk without a problem. But if you have a problem with caseine, then you should eliminate dairy altogether. That seems to be what Dr. Fine tests for.

Welda, Try reading the above article. Sounds like a really good start to early diagnosis. Shirley

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