• 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.

Introducing Myself

3 posts in this topic

Can someone please tell me how I can post an intro of myself in a specific forum category?

I find this format confusing....




Share this post

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

Hi, I'm Karen. I am 41 yrs old and have had celiac disease for more years than I can remember (since my teens at least). I originally was diagnosed with celiac at age 23 and after 1 year on the gluten free diet with no results, the diagnosis was changed to Crohn's. Finally, 1 1/2 years ago, the blood test confirmed indeed it was Celiac.

I have been on the gluten-free diet since the second diagnosis, but still have not seen any improvement. I basically have had diarrhea permanently for over a decade. I also have hypo-thyroid disease, which is another autoimmune disease affiliated with Celiac.

I came across this board while searching for support. I am currently off work for a two week rest as I had another flare up with excruciating pain. Today is the first day that is seems to be subsiding. Have been eating only rice bread toast for weeks now.

This time though, it also came with the worst case of gas and belching I have ever had. It was absolutely constant - my throat, esophagas, ribs, everything was sore. Has anyone else experienced this? Also, there was a pain in my back on both sides flank area....

I am so worried that there has been so much damage gone unchecked for so long that I will never get better.....

It doesn't help that I work full time, have four children (including 3 yr old twin boys), which doesn't leave much rest time.....

Well, that's me in a nutshell. Hope to gain some valuable info from you guys!!




Share this post

Link to post
Share on other sites

Welcome to the board. I'm sorry to hear about your troubles.

As for not finding any relief after 18 months on the diet, my first question would be to ask if you are 100% positive that you have eliminated ALL possible sources of cross contamination and gluten exposure (be it packaged products, stamps/envelops/play-dough, cosmetics/soap/shampoo, a not-entirely-gluten-free kitchen, medications, or anything else). My second question would be to ask if you have followed up on whether or not you have any other food intolerances or allergies which could be contributing to your symptoms.

I hope you're feeling better soon!


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

  • Forum Statistics

    • Total Topics
    • Total Posts
  • Member Statistics

    • Total Members
    • Most Online

    Newest Member
    Con Smith
  • Popular Now

  • Topics

  • Posts

    • It seems like you really need a concrete or near concrete answer so I would say maybe you ought to get the gene testing. Then you can decide on the gluten challenge.   Thanks! I am convinced our dogs are there waiting for us. Meanwhile they are playing, running, laughing, barking & chasing. I have another favorite quote dealing with dogs: "If a dog will not come to you after having looked you in the face, you should go home & examine your conscience."  ~~~ Woodrow Wilson ~~~
    • I can't help thinking that all of this would be so much easier if the doctor I went to 10 years ago would have done testing for celiac, rather than tell me I probably should avoid gluten. He was looking to sell allergy shots and hormone treatment, he had nothing to gain from me being diagnosed celiac. I've been messing around ever since, sort-of-most-of the time being gluten free but never being strict about it. I really feel like three months of eating gluten would do my body a lot of permanent damage. I've got elevated liver enzymes for the third time since 2008 and no cause can be found which might be good, I guess. I wonder if it would be reasonable to do the HLA testing first, to decide if I really need to do the gluten challenge. If the biopsy is negative, that is. Squirmingitch, love your tag line about dogs in heaven. We lost the best dog ever last December. I sure hope all my dogs are there waiting for me!
    • Most (90%-95%) patients with celiac disease have 1 or 2 copies of HLA-DQ2 haplotype (see below), while the remainder have HLA-DQ8 haplotype. Rare exceptions to these associations have been occasionally seen. In 1 study of celiac disease, only 0.7% of patients with celiac disease lacked the HLA alleles mentioned above. Results are reported as permissive, nonpermissive, or equivocal gene pairs. From: http://www.mayomedicallaboratories.com/test-catalog/Clinical+and+Interpretive/88906  
    • This is not quite as cut & dried as it sounds. Although rare, there are diagnosed celiacs who do not have either of those genes. Ravenwoodglass, who posted above, is one of those people. I think she has double DQ9 genes? Am I right Raven?  My point is, that getting the gene testing is not an absolute determination either way.
    • Why yes it is! jmg and myself are NCIS, I mean NCGS specialist/experts or is it NCGI people ourselves. posterboy,
  • Upcoming Events