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Negative celiac blood test but migraines and celiac rash with gluten

By Anonymous November 30, 2014 - 9:58am
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After a year of GI problems, I was given a Celiac blood test. This was negative. I continued to have stomach issues and terrible migraines. I also had a rash for several years that a Dermatologist thought looked like a Gluten rash. I decided to do an elimination diet and felt so much better after several weeks with no trigger foods. Immediately after adding gluten back to my diet I developed the rash again and the worst migraine of my life. I have been off Gluten for 6 months- no rash fewer headaches. I have been recently diagnosed and treated for Papillary Thyroid Cancer. When telling the doctor of my gluten sensitivity I was told with my negative blood test I do not have Celiacs. Is it possible that I can have Celiacs with a negative blood test? I know to get a positive Celiacs test I would have to go back on gluten. People tend to think I am just jumping on the Gluten free bandwagon because I do not have a Celiacs diagnosis. So frustrating!

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EmpowHER Guest

Your dermatologist should have done a Skin Biopsy of the rash and tested you for Dermatitis herpetiformis (DH). If that came back positive you would have a definite yes to Celiac.

December 1, 2014 - 10:52am
EmpowHER Guest
Anonymous (reply to Anonymous)

I complained about the rash while at the Dermatologist but at the time it was not flaring up. I sent her a picture of it when it came back and she wanted to do a biopsy but it was a weekend and she wanted to do it when it was fresh. I started a gluten free diet after that it only recurred when I inadvertently ate some gluten. I don't really want to go back on gluten just to get the test done but it would be nice to have a conclusive diagnosis I. Is it worth it ?

December 1, 2014 - 5:03pm


Hi Anonymous - Thanks for sharing your story and bringing your concerns to EmpowHER.

First, a comment about your doctor. As scientists, doctors tend to see things in black and white, relying on evidence based data to form opinions. It's not surprising that your doctor would say that a negative test for celiac disease would mean that you do not have celiac disease, which is a digestive and autoimmune disorder.

That doesn't mean that your own testing through an elimination diet was inaccurate and should be discounted. You know your own body better than anyone else, and your detective work is something to be applauded as not many people would take the time and effort to do this.

There is increasing evidence that gluten can promote inflammation in the body even when a person doesn't have a specific allergy or sensitivity to it. I suggest you continue your detective work, but instead of focusing only on gluten that you look at foods which trigger inflammation and inflammatory reactions. The goal, after all, is to feel better and to be able to eat foods that don't interfere with your health and well-being.

I am sorry to hear that you are also dealing with thyroid cancer, and hope you are getting the help and support you need. An anti-inflammatory diet is often recommended for cancer patients/survivors, so that's another reason for you to continue your anti-gluten diet and to research anti-inflammatory diets too.

It really doesn't matter what other people think about what you do, and don't do, with your diet. What's important is that you trust your gut, go where your own testing is leading you, and adopt the diet that is best for your health and helps you feel good.

Hope that helps and you will keep us informed of your progress.



November 30, 2014 - 12:56pm
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