Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Longterm symptoms unbeknownst


PA Painter

Recommended Posts

PA Painter Apprentice

I have been experiencing extreme , GERD, lactose intolerance, arthritis, weird rashes, constant itchy skin for well over 10 years. I thought it was post traumatic arthritis. 3 months ago the GERD had gotten to where I could not swallow properly and was in constant burning agnony. None of the over the counter treatments worked. Out of desperation I tried a gluten free diet and now have almost zero arthritis pain and I feel SO SO much better. It is unbelievable! I will gladly never eat gluten again. I am afraid to find out how much damage has been done. I just recently started an insurance plan with Capital Blue Cross and will be seeing a doctor asap. I hope I am not asked to eat gluten again to test. I am deathly afraid of it now.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



trents Grand Master

Welcome to the forum, @PA Painter! Unfortunately, once you have been into the gluten free diet for awhile as you have, all testing for celiac disease will be invalidated. The only other thing you could do would be to get a genetic test done to see if you have one or more of the genes that determine potential for developing celiac disease. But with your cluster of symptoms there is not much doubt in my mind that you have celiac disease and not NCGS (Non Celiac Gluten Sensitivity). 

PA Painter Apprentice

Thank you for the reply. In a way I am relieved to finally know what is going on with the arthritis etc, but am a little freaked about all of the potential problems that could spawn from this. I have had family tell me I'm crazy which is BS. I appreciate the heads up on gene testing. I'd rather not eat gluten ever again

trents Grand Master

Welcome to the forum, @PA Painter! Unfortunately, once you have been into the gluten free diet for awhile as you have, all testing for celiac disease will be invalidated. The only other thing you could do would be to get a genetic test done to see if you have one or more of the genes that determine potential for developing celiac disease. But with your cluster of symptoms there is not much doubt in my mind that you have celiac disease and not NCGS (Non Celiac Gluten Sensitivity). 

40 minutes ago, PA Painter said:

Thank you for the reply. In a way I am relieved to finally know what is going on with the arthritis etc, but am a little freaked about all of the potential problems that could spawn from this. I have had family tell me I'm crazy which is BS. I appreciate the heads up on gene testing. I'd rather not eat gluten ever again

It is common for celiacs to develop other autoimmune conditions. They tend to cluster.

Scott Adams Grand Master

As far as dealing with family and friends goes, Celiac.com has published a book on our site by Jean Duane PhD called Gluten-Centric Culture, which covers many of the social aspects of having celiac disease:

This chapter in particular covers issues around eating with family and others - Gluten-Centric Culture: Chapter 5 - Grabbing A Bite Together:

 

 

PA Painter Apprentice

Thank you!

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

  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,752
    • Most Online (within 30 mins)
      7,748

    Sue Gaertig
    Newest Member
    Sue Gaertig
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scott Adams
      Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.  
    • Beverage
      I order tea from https://www.republicoftea.com/ All gluten free. Sign up for the newsletter and they send discounts regularly. 
    • Gigi2025
      Hi Theresa,  A few of my friends have your same story. You may be right about barley, etc.  18 years ago at a football game while clapping, suddenly my 4th finger was in agony.  It looked like a vein had burst. It was blue for a couple hours, then disappeared.  Finally realized it happened every time when drinking beer.  It's occurred several times over the years when opening a jar, lifting something that was a bit heavy, holding on to tight to something.  Immediate icing stops the pain and discoloration.  Now avoiding wheat in the US, it rarely happens.  Thanks for the reminder.  Will have Entero Labs run another test. Unfortunately they've relocated to Switzerland/Greece.
    • Russ H
      The EMA test is an old and less sensitive test for anti-tTG2 antibodies. It relies on a technician using a microscope to check for fluorescence of a labelled substrate (typically monkey oesophagus or human umbilicus), giving a simple positive/negative result. It is similar to running a standard anti-tTG2 test but with a high cut-off, making it more specific but less sensitive. Transient rises in tTG2 can be caused by e.g. viral infections and inflammation. Very high levels of anti-tTG2 (>x10 standard range) are almost certainly coeliac disease but moderately raised levels can have several causes apart from coeliac disease. Other food allergies can cause villi blunting but that is much rarer than coeliac disease or other non-coeliac causes. Not All That Flattens Villi Is Celiac Disease: A Review of Enteropathies
    • Theresa2407
      Maybe you have a low  intolerance to Wheat.   Rye, Barley and Malt are the gluten in Celiac disease.  It has always been stated Wheat and Gluten, not just a Wheat intolerance.  Barley will keep me in bed for (2) weeks.  Gut, Migrains, Brain fog, Diahrea.  It is miserable.  And when I was a toddler the doctor would give me a malt medicine because I always had Anemia and did not grow.  Boy was he off.  But at that time the US didn't know anyone about Celiac.  This was the 1940s and 50s.  I had my first episode at 9 months and did not get a diagnosis until I was 50.  My immune system was so shot before being diagnoised, so now I live with the consequences of it. I was so upset when Manufacturers didn't want to label their products so they added barley to the product.  It was mostly the cereal industry.  3 of my favorite cereals were excluded because of this. Malt gives me a bad Gut reaction.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.