• Ads by Google:
     




    Get email alerts Celiac.com E-Newsletter

    Ads by Google:



       Get email alertsCeliac.com E-Newsletter

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Very Confused
0

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:

0

Share this post


Link to post
Share on other sites
Ads by Google:
Ads by Google:


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..

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites
Ads by Google:


Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      106,803
    • Total Posts
      932,560
  • Member Statistics

    • Total Members
      64,296
    • Most Online
      3,093

    Newest Member
    igone02@verizon.net
    Joined
  • Popular Now

  • Topics

  • Posts

    • Ken, I have the same thing. Did you ever find a reason or solution? I'm tired of shampoos and creams that only work short term. My problem cropped up after I had gone gluten-free. Thanks!
    • Hi, I recently was tested (blood) and got a positive for celiac disease. I'm 31 and have had 3 kids, and no longer have the urge to urinate. I birthed all of my children naturally, no c-sections, no surgeries. I thought perhaps there was some trauma during the birth and attributed it to that. But have come across a few things online saying that bladder problems can be related to celiac disease? I have been to a few doctors for this problem, including a very confused urologist (I asked him about my stomach bloating issue with pictures of it- before having any clue it was from celiac!) and he wanted to run some tests but I have not been back. I had multiple (or perhaps just one very bad) urinary infections which would not go away for about 6 months. The last round of harder antibiotics finally killed it off. Has anyone else had this problem? I have not met with a GI yet to ask, I'm super poor right now! hah.
    • You're right on the extremes, I'm sitting in a gluten-free food festival right now and still unsure if to eat anything which I guess means I've hit the extreme end of the scale. Seem to be noticing the recovery pattern over the course of 6 weeks or so after a gluten hit. Will be very interesting to see what the blood test readings come out like when I eventually get them done again. And thanks for the good wishes
    • Your getting plenty of proteins for once and I would drop the L-glutamine supplement what brand is it? Paleo Protein as in the brand? They were not gluten free last I checked, I got sick from it 2 years ago or so when they changed to a non dedicated facility.
    • Very interesting. However, my positive on the DGP test is on the combined assay. When separated into IGA and IGG they are within normal range. Twice the IGA was a point or two above normal range, which can be easily disregarded per University of Chicago.  Much of the research done on NCGS is showing activation of cells which are different then in celiac. Placing it still in a gluten related illness spectrum, but an entirely different kind of mode of transport, if you will, then celiac disease. Odd, because I am pretty sure I read that 1st degree relatives of celiacs have a higher prevalence of NCGS suggesting it is, in part, that they are related. But I cannot recall where I read that.  I think my specialist doc is following the right track given that all of this began at the tail end of a 6 week challenge in 2015/16 and I have an increase in IELs.  which, as I've stated before, is a very non-specific finding however. Symptoms continued On a gluten free diet for me months after.  however I was only on it for that 3 months after they found some inflammation. So maybe I didn't give it long enough.  Or like I said, maybe it's something else. We shall see! 
  • Upcoming Events