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My Blood Tests


pixiegirl

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pixiegirl Enthusiast

To recap my story, 8 years of digestive problems, supposedly have IBS, chronic diarrhea. I go to my doctor and get tested for celiac 3 weeks ago, right after I have the test I start to eat totally gluten free and in less then a week every single symptom I've had is magically gone.

Then the doctor calls me up and tells me all my blood work is totally normal (I had lots done) and that the tests for celiac are all negative. I asked that they send the test results to me and I got them today. I'd like to know if anyone can help me understand them.

The tests ordered were: endomysial iga, gliadin abs, reticulin abs.

this is what the results say:

endomysial iga: negative

gliadin abs, gliadin igg ab: 2.5 (negative is less then 25)

gliadin iga ab: 5.1 (negative is less then 25)

reticulin abs: negative (at 1:20 dilution)

So it seems like every test I had was very very negative, right? How does one explain the change I had by taking gluten out of my diet? How do I find out if I can eat gluten or not?

Susan :(


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Guest jhmom

Susan, I too had negative blood work, my doctor told me that it is it takes time for a disease to show up in labs, etc and apparently for some us it takes longer than others ;) !

If you had such dramatic results being on the gluten-free I would stay that way as that is a test in itself. Have you explained your gluten-free results to your doc? I would hope that he would accept them, some doc do and some don't I guess. Ultimately it's up to you, do you want to "wait" on this disease to show up in labs or test results and remain in pain or enjoy your reclaimed health?

In my opinion (as I had both) Negative blood test and negative biopsy does NOT mean you do not have celiac disease, but an improvement on the diet means your body apparently cannot tolerate gluten.

I wish you well..... :)

tarnalberry Community Regular

Likely you simply don't have enough damage for the blood tests to come up positive. But the diet is a test in and of itself. If eating apples always made you feel sick, would you keep eating apples? No. If you're comfortable and confident in the results of the diet, stick with it. (You can also look into other testing methods like York's tests and Enterolab's tests.)

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    • par18
      Scott, I agree with everything you said except the term "false negative". It should be a "true negative" just plain negative. I actually looked up true/false negative/positive as it pertains to testing. The term "false negative" would be correct if you are positive (have anti-bodies) and the test did not pick them up. That would be a problem with the "test" itself. If you were gluten-free and got tested, you more than likely would test "true" negative or just negative. This means that the gluten-free diet is working and no anti-bodies should be present. I know it sounds confusing and if you don't agree feel free to respond. 
    • SilkieFairy
      I realized it is actually important to get an official diagnosis because then insurance can cover bone density testing and other lab work to see if any further damage has been done because of it. Also, if hospitalized for whatever reason, I have the right to gluten-free food if I am officially celiac. I guess it gives me some legal protections. Plus, I have 4 kids, and I really want to know. If I really do have it then they may have increased risk. 
    • par18
      Been off this forum for years. Is it that important that you get an official diagnosis of something? It appears like you had a trigger (wheat, gluten, whatever) and removing it has resolved your symptom. I can't speak for you, but I had known what my trigger was (gluten) years before my diagnosis I would just stay gluten-free and get on with my symptom free condition. I was diagnosed over 20 years ago and have been symptom free only excluding wheat, rye and barley. I tolerate all naturally gluten free whole foods including things like beans which actually helps to form the stools. 
    • trents
      No coincidence. Recent revisions to gluten challenge guidelines call for the daily consumption of at least 10g of gluten (about the amount in 4-6 slices of wheat bread) for a minimum of 3 weeks. If possible, I would extend that two weeks to ensure valid testing.
    • SilkieFairy
      Thank you both for the replies. I decided to bring back gluten so I can do the blood test. Today is Day #2 of the Challenge. Yesterday I had about 3 slices of whole wheat bread and I woke up with urgent diarrhea this morning. It was orange, sandy and had the distinctive smell that I did not have when I was briefly gluten free. I don't know if it's a coincidence, but the brain fog is back and I feel very tired.   
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