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Sarah Fisher

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Sarah Fisher Newbie

hello all! Can some help help me please? I’ve been suffering from gluten intolerance symptoms but my doctor says that’s impossible as my blood test doesn’t indicate that. I’ve basically had bowel problems diagnosed as IBS, sore knees and elbows diagnosed as eczema and anxiety/exhaustion. I’ve attached a couple of photos of my elbows and knees. Does anyone recognise this as a gluten intolerance rash? Does anyone else have any experience of it not showing up in blood tests? My elbows And knees are driving me insane so would appreciate some help. Many thanks in advance. 


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trents Grand Master

Sarah, there have been several form participants of late whose blood tests were negative but who have definite symptoms of Celiac Disease. Some have even had positive intestinal biopsies for Celiac Disease after negative blood tests. So some questions for you.

1. Do you know what specific blood tests were done? Some doctors are not up on which ones to run that are more specific for Celiac Disease.

2. You use the term gluten intolerance. Did you mean to do that? That is not the same as Celiac Disease.

3. Were you by any chance already eating gluten free when you had your blood test? That would invalidate the blood test and give a false negative.

Scott Adams Grand Master

Yes, it would be helpful if you could share your blood test results. You may have recorded antibodies just below a level the indicates celiac disease, but this could still mean that you are gluten sensitive. Knowing more about your results would be helpful.

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    • trents
      I think most of us, when we first got our diagnosis, imagined that going gluten free would be the magic the bullet that would restore us to perfect health. We soon find out that it usually isn't quite that simple and that celiac disease has long fingers.
    • Celiacsugh
      Thanks! I still have much to learn, I'd hoped going gluten-free would be a magic bullet and I'm learning my system is still very sensitive which is overwhelming and discouraging at times. Thanks for the yogurt tip! There is comfort in knowing that this is common during early healing and I'm not alone! 
    • Celiacsugh
      Thanks so much for the response. Are you usually able to pinpoint a trigger when you get the pain again? What I didn’t share in my earlier post is that I also usually eat out on weekends (though I share celiacs/needs to be gluten-free) and I’ve also been under a lot of stress lately in my personal life. While I’m speculating that it’s the wine it could certainly be a number of things. Do you ever notice the pain more when you are stressed? Learning so much about the brain/gut connection and celiacs. Thanks, there is comfort in hearing others have experienced similar symptoms. 
    • Raquel2021
      This was my main symptom. I still get it from time to time. Also feels like a burning pain on the upper abdomen. I think the wine could definitely cause the pain to be worse. There are do many things I still can't eat.
    • trents
      Yes and this is true of gluten free ready made, processed and prepackaged foods in general. In particular, hard to digest polysaccharides are commonly used in these products that give many celiacs issues and I personally don't handle some emulsifiers well. IMO, reactions to these ingredients are often mistaken for a gluten reaction.
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