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Why I’m Not Being Tested For Celiac Disease

In a comment on My Health Experiment post, Casey asked:celiac-disease

When you were deciding to eliminate gluten, did you pursue testing for celiac? Do you mind me asking how you made the decision to test or not to test (if it came up)?

I was going to answer in the comments there, but I realized that I had a lot to say.

Here's why I am not pursuing testing for Celiac Disease, even though I think I have it.

My quitting gluten was a spur of the moment decision based on chronic pain. I just wanted the pain to go away, and I quit eating it the same day my friend suggested it.

If I'd planned a little more, I would have had the Celiac Disease testing done before stopping gluten.

My doctor did do the blood tests for celiac 2 weeks after I'd stopped gluten, and they were negative. From everything I've read, there's a good chance those results are a false negative. Apparently, the tests look for antibodies, and if there's no gluten in your system, there would be fewer antibodies.

Since I stopped eating gluten, two different doctors have told me that my symptoms suggest I have Celiac Disease.

The only way to know for sure if I have it is to go back to eating gluten for a few weeks and deal with the pain that would ensue (and the bloating and diarrhea and excess gas and sluggishness, etc).

The only treatment for Celiac Disease is a gluten-free diet, and I'm already doing that. Since I'm following the diet anyway (and see profound results from it), I don't see a need to put myself through the torture of eating gluten for an extended period of time in order to confirm the diagnosis.

Is it possible I don't have Celiac Disease? Yes. It's also possible I have a gluten sensitivity. It's possible that the tests would show nothing at all. The bottom line is that I have less pain, significantly less digestive distress, more energy, and generally feel better on a gluten-free diet, so I'm sticking with it.

© 2013 – 2018, Tara Ziegmont. All rights reserved.

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8 thoughts on “Why I’m Not Being Tested For Celiac Disease”

  1. I’ve asked our Dr’s to test my daughter for this but they refuse. She doesn’t have physical pains except from her skin problems.
    But I totally agree, why put yourself back in pain when you know what’s working for you. Diagnoses or not you’re feeling better and that’s what matters.

  2. We had our daughter IgG tested. She was choking on food, but the allergy tests came back negative. (Good luck finding someone who will do the IgG — generally alternative drs.) Her results were the highest they’d ever seen; also tested high on dairy. Our son who has intestinal issues benefitted greatly from this change. After 10 months, everyone seems to have healed. It’s not an easy lifestyle as we had to eliminate a lot of other ingredients as well (including yeast). Our daughter’s next scope came back clean. I know the drs. wouldn’t believe me if I told them what we did, but she’s much better now.

    I will say, I really don’t enjoy gluten foods any more and it forced us to try new things. I believe as a society we need to get away from processed food. I’m no angel in that regard, but I really am trying!

    I hope you have good results as well.

  3. Two weeks is a very short time for antibodies to normalize. Most people with celiac disease take months to years to achieve this. Perhaps you have gluten sensitivity; perhaps it is a bigger problem with other ingredients. Celiac disease is an autoimmune disease with life-time consequences. While it is too late for you to confirm or rule out the diagnosis, please don’t let your children start their lives without knowing for sure.

  4. My situation was very similar to you…I was beyond sick and so tired of doctors not giving me an answer. My blood test came out negative, the doctors ordered an upper and lower GI scan and I remember vomiting all over their equipment, they took an endoscopy with no answer….then I went gluten free on my own. I remember the first time I was able to actually eat something and not vomit, I felt like a new women. Months later I found a really good doctor who gave me a genetic testing for celiacs…low and behold, I have the gene.

    Point being – only YOU know how YOUR body feels. Keep doing what you’re doing to be healthy. I promise, it gets better over time.

  5. I was diagnosed with Celiac disease last year. I tested positive for Wheat Allergy. Then I had been off wheat for too long that even going back on it for two weeks might not give a positive result in a biopsy. My Dr. did DNA tests instead. She is a Functional Dr. and really great about helping me get to the root of my problems. Anyhow, I highly recommend being tested not due to the avoiding gluten part, but due to the fact that there are many side effects of celiac disease that a good Dr. will help to make sure you are not suffering from. (Many vitamin deficiencies, bone loss, etc. are caused by celiac disease and are easier to be tested for and get covered by insurance if you are diagnosed.)

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