• 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.

Tested Negative
0

2 posts in this topic

I'm new to the board. I've read articles about CS here but I guess not enough. After years of agony and endless tests with no answers, I finally read about Ciliac Sprue and put myself on a gluten-free diet. I was elated when my pain, bloating, mental fuzziness, and fatigue suddenly went away. I stayed well for about 5 months and then had a bad relapse after eating in a Chinese restaurant. I think I had several things to eat I shouldn't have, including soy sauce.

So I started investigating more and realized I could really only eat things that were whole foods or prepared items that were already deemed OK. I can deal with it. Anything is better than my quality of life before. As I read more, I realized my grown children and grandchlidren could be at risk. I wanted to get diagnosed so my family would have some definite results in hand if I tested positive.

I went to my GP Doc and asked him for the test for antibodies to endomysium and tissue transglutaminase. He is not at all familiar with this disease and asked me why I would want the test if I tried the gluten-free diet and felt better. I answered I was especially concerned about my grandbabies having it and possibly becoming malnourished.

He is also not at all familiar with the blood tests and after calling the lab to see if they could accomodate the tests, he was told they were esentially the same test. (Are they?) So I only had the tissue transglutaminase, I think.

Anyway, the office called me today and told me the test was negative. I was crushed because if it wasn't CS I must be crazy! Then I read here how one must be "active" to test positive. I can't live like that. I was so, so, so sick last summer. I felt my life was over.

Any other options? And any Docs in the Metro Detroit area who are in the know?

I do have other auto-immune and connective tissue diseases. For me, they pale in comparison to the pain and agony of my Celiac Sprue symptoms.

Thanks so much for your time and sharing.

0

Share this post


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


If you have been gluten-free for that long the test would show up neg. I think you have to be eating Gulten for a while to show up pos. You may want to try the Enterolab you can e-mail Dr. fine and ask if it would work for you. You can do the genetic test and that would tell you if you have the gene.

--Good luck,

Kayla

0

Share this post


Link to post
Share on other sites

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
      107,341
    • Total Posts
      935,593
  • Member Statistics

    • Total Members
      65,008
    • Most Online
      3,093

    Newest Member
    rachel carmichael
    Joined
  • Popular Now

  • Topics

  • Posts

    • You're welcome ritamichelle. Yes, if you are biopsy confirmed then it will be much easier to get your daughter tested. 
    • I agree that In people that have celiac there usually is a trigger. It can be physical or emotional stress as the article states. I wonder though if the people they say 'don't have the genes' are folks that simply have rarer ones. There is research on more genes. I discovered it when I was writing a paper for a class. It was a very long time ago in 'computer age' and my bookmarks died along with the computer I was useing. But it is out there on peer reviewed sites like Lancet, NIH etc. Since celiac was rarely tested for even a couple decades ago there are many folks that may have celiac in their family but it was never known. That was the case in my family. I am confident about that.  I always wondered why my Mom seldom left the house, spent a lot of time in the bathroom, was tired all the time and was always holding her hands the way she did.  Then I became her.  We have so much to learn about celiac. Personally I dislike the term 'NCGS' because it makes folks think at times they don't need to be as strict and it isn't as serious. Too many are told that their biopsies are negative and they then get the NCGS label if they had positive bloods.  I consider celiac to be a spectrum disorder. Not all celiacs have gut impact or at least haven't developed it yet. I had the neuro impact and DH from shortly after I was impaled as a young child. It was many years before any severe GI issues arose.  
    •     http://www.takepart.com/article/2014/08/11/coffee-adulterated https://www.thetimes.co.uk/article/how-was-your-morning-coffee-did-it-taste-like-mud-v6rfdmrrr92 http://grist.org/food/coffee-taste-like-dirt-thats-because-it-might-be/ " Using liquid chromatography, which identifies the individual chemical components of a mixture, the Brazilian scientists found wheat, soy bean, brown sugar, barley, corn, and rice commonly interspersed with the grounded coffee they tested. Large amounts of wood and dirt were also prevalent, an issue not only for purists who prefer to drink their coffee black, but for those with potential allergies to the unknown additives. As TIME reports, the scientists are identifying the rogue coffee with increasing accuracy:" http://www.bodyandsoul.com.au/health/health-news/is-there-wheat-hidden-in-your-coffee/news-story/a3d53a7c36b76156f08d89eab6a396b3   -----   I have also read other references to coffee upsetting those with celiac.   Personally I have a family history of officially diagnosed celiac even though I have never been diagnosed myself..then again Ive never been properly tested. My drs just keep saying the following symptoms are anxiety and wont refer me to a gastroenterologist for:   Loss of bowel control, pale coloured stools, severe bloating, passing undigested food, ataxia, vertigo, migraine headaches, feeling feverish, repeated ulcers on my tongue and in my mouth, feeling generally ill and sleep issues (mostly falling asleep when I dont want to but rarely insomnia).   Because they insist its anxiety as routine blood tests are normal they wont refer me to a gut dr. They did do a blood test for celiac once on my request but it came back negative. This does not phase me when it comes to my suspicians that gluten is an issue for me because:   1 I was on a gluten free diet at the time, hence why i was well enough to crawl to the gps office. 2 I have a family history of celiac 3 MY symptoms are alleviated by a gluten free, dairy free, oat free, corn free diet..and lately, coffee free it seems. Coffee has indeed become a problem for me recently. 4 I could not tolerate gluten based baby foods as an infant. I was admitted to hospital as a baby for being underweight because I was vomitting all my food up. They put me on gluten free formula and i was fine, stopped being sick and gained weight. I could have grown out of it but considering the symtpoms i get on a gluten based diet, i really doubt it.   -----   When it comes to the coffee, food manufacturers will do most anything to make profits if they think they can get away with it. We live in a world where money is most important and if they do get caught...they can always claim they have no idea how the barley got in there!    
    • If you have had a sleep study and been diagnosed, you have sleep apnea. It's definitely different than waking up to go to the bathroom. Are you using your cpap every night for The entire night. Naps too? SA can actually cause death so it's very Important for you to use it every time you sleep. Do you follow up with your doctor yearly? Sorry to sound like the SA police, but I know someone who died from it. He wasn't using his cpap anymore, thought it was uncomfortable.     What Is Sleep Apnea?   Sleep apnea (AP-ne-ah) is a common disorder in which you have one or more pauses in breathing or shallow breaths while you sleep. Breathing pauses can last from a few seconds to minutes. They may occur 30 times or more an hour. Typically, normal breathing then starts again, sometimes with a loud snort or choking sound. Sleep apnea usually is a chronic (ongoing) condition that disrupts your sleep. When your breathing pauses or becomes shallow, you’ll often move out of deep sleep and into light sleep.
    • Summer sausage, rope sausage or link sausage? what were the ingredients? Msg makes me dizzy.
  • Upcoming Events