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Longterm symptoms unbeknownst


PA Painter

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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.


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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!

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    • Scott Adams
      Welcome to the forum. Can we assume that you've been diagnosed with celiac disease and have been on a gluten-free diet for a while? If so, it sounds like you may be in the super sensitive group, as others here have reported similar issues when working in bakeries, pizzerias, etc. Until you find other work, and perhaps don't have roommates who cook gluten foods, you may need to consider wearing an N95 mask to avoid breathing in any particles.  
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    • jjiillee
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