• 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 What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-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

Recommended Posts

jesslee23    0

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:

Share this post


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


DLayman    0

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..

Share this post


Link to post
Share on other sites
wclemens    0

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

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

Share this post


Link to post
Share on other sites
Guest aramgard   
Guest aramgard

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

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
      107,898
    • Total Posts
      938,541
  • Member Statistics

    • Total Members
      65,805
    • Most Online
      3,093

    Newest Member
    Smarting
    Joined
  • Popular Now

  • Topics

  • Posts

    • About 10 days ago I think I ate most of a wheat tortilla (the restaurant stuck to their story that it was a corn tortilla like I had ordered, but I don't believe them - I'm pretty sure it was wheat). Nothing happened in the first couple of days, then I developed intermittent chest tightness, which was one of my primary symptoms before my diagnosis, the others being bloating, food sitting like a rock in my stomach after eating, exercise intolerance, and weight loss.  Anyone else get chest tightness as a symptom of being glutened? I haven't felt this symptom since I became very strict with cross-contamination.
    • I had 23andme testing which showed I have genes DQ2.5 and DQ8. When I learned this I decided to stop eating gluten to PREVENT getting celiac, but didn't worry about cross-contamination. A year later I got sick, and eventually had an endoscopy which showed Marsh 1. My blood tests were negative, as one would expect for anyone eating gluten-free. My gastroenterologist told me I could either decide to live like a celiac, or do the full 12-week gluten challenge. I cleaned up my kitchen and started being very careful with eating away from home, and my symptoms went away.
    • The beginning of your story sounds very much like mine. I stopped eating gluten regularly when I adopted a mostly paleo diet years ago (bonus: my lifelong canker sores disappeared!). When I got 23andme testing done and learned I have both high-risk celiac genes, I stopped eating gluten altogether, thinking I couldn't trigger celiac if I didn't have gluten exposure. But, since I didn't have a celiac diagnosis or symptoms, I wasn't careful about cross-contamination.  Then I got sick. My symptoms were vague: bloating, food sitting like a rock in my stomach after eating, exercise intolerance, weight loss, chest tightness. I had a bunch of tests, tried omeprazole, and eventually had an endoscopy. Because I hadn't eaten gluten in a year, I didn't expect any results suggesting celiac, but sure enough, my biopsies came back as Marsh 1: inconclusive, but all the other reasons to cause this result had already been ruled out or were very unlikely. I then had bloodwork for celiac, which was negative, as expected for anyone on a gluten-free diet. At this point I was sent to a gastroenterologist, who said she could not definitively diagnose me with celiac, and that my options were either to assume I have celiac and live like a celiac, or to do the full 12-week gluten challenge and then repeat all the testing. i didn't want to take the risk of triggering another autoimmune disease by doing the gluten challenge, so I cleaned up my kitchen, replaced my cutting boards, cast iron pans, and anything plastic or silicone, and confined gluten to one corner of the counter. I started being the annoying person at restaurants and potlucks asking a thousand questions. And my symptoms went away. i still don't know whether I have celiac. I struggle with the restrictions it places on my life outside of my home (travel, social life). Periodically I wonder whether I shoukd just do the gluten challenge so I know. But I'm afraid of the possible risks. Your allergist did you a great disservice my telling you to go on a gluten-free diet without testing you for celiac. But that ship has sailed. At this point I would say your choices are the same as mine: either do a complete 12-week gluten challenge and then retest, or decide to live as if you had a firm celiac diagnosis. It can be a tough decision. Good luck and I hope you figure it out and get better very soon!  
  • Upcoming Events