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Tested Neg But Still Wondering

3 posts in this topic long do you have to be eating gluten-y foods in order to have an accurate blood test? I took gluten out of my diet and my symptoms (chronic fatigue, bone and back pain, bloating, gas, diarrhea AND constipation at times, mental fuzzines) have gotten better. I fell off the wagon, so to speak, and went on a gluten binge and all my symptoms returned even worse. It's now been almost 3 weeks without gluten this time around, I'm feeling a bit better but I just got tested and it came back in the normal range. How accurate are the blood tests and could the fact that I haven't been having gluten make a difference? I'm reluctant to go back to gluten just to get another blood test, but I really think that gluten is the cause. Any expertise or input would be appreciated!


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Yes, I believe that could have given you a negative result. Unfortunately, both the blood test and the biopsy require you to be ingesting gluten for an appreciable time prior to the test in order for them to be accurate.

I would recommend that if you are not already seeing a gastroenterologist, that you find one experienced in Celiac Disease and explain your symptoms and the fact that you got better when going gluten free. You can then ask how he/she would like you to proceed to get accurate diagnostic tests. Presumably, you would have to go back to ingesting gluten for a certain amount of time prior to testing.


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THe blood test are not fool proof and for some people it takes time for the disease to register in the blood or damage the villi in the small intestines (per my doctor). So regardless if you start back on gluten again and have blood-work or a biopsy it could ALL come back negative and you could still have celiac disease.

In my opinion there are 4 ways to be disgnosed:

1. through blood-work

2. through a biopsy improvement on a gluten-free diet

4. stool panel test from Enterolab, these test are more sensitive than blood and you do not have to be on gluten for them to be accurate. It is also noninvasive and simple.

I do hope you find some answers soon! Take care :)


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    • Long pause because I wanted my latest lab results and they took forever.  Cortisol, ACTH, estadiol, vitamin a and whatever else were all fine. They are retesting my thyroid in four weeks. I definitely bought the wrong product and glutened myself a few weeks back so I guess that has to wait which really irritates me. My gliadin iga ab was greater than 100 almost two yrs ago at diagnosis so I guess sometime next yr I'll redo that and hope it's down :-/. Trying to do all the right things and get bad information from doctors.  Thanks for all the info you've shared and helped me with. I've had lab work every month since May and will next month for the thyroid again. Sigh. 
    • Hi Carle, Congrats on your symptoms going away.  I did seem to have reactions to rice for a while after going gluten-free.  But after some years on the gluten-free diet I can eat it again.  So reactions can change over time. I was searching for an article on gluten in common store products, but didn't find it.  There was a group that did testing on some common grocery products like beans, rice, corn etc that we would normally consider to be gluten-free naturally.  But they found some level of gluten in some of them.  So it's not impossible to pick up something off the shelf that ought to be naturally gluten-free and find it is contaminated.  That may have happened with the rice you ate.  A quick rinse of water before using the rice might help.
    • Hi Doit, The reference ranges to the right of the test result show the values the result ought to be in for normal readings (no celiac disease).  Your results appear to show no higher than normal results that I can see. However, you aren't following the recommended process for celiac disease blood testing.  The blood test is supposed to preceded by 12 weeks of daily gluten eating.  That is generally enough time to cause a sufficient quantity of antibodies to build up in the blood stream to be detectable by the tests. Not having antibodies in the blood stream doesn't mean you aren't being damaged.  People with DH (dermatitis herpetiformis) sometimes test negative on the standard blood tests.  My theory is possibly because the antibodies are concentrated in the skin instead of the blood.  In gut damage, it is possible the antibodies are concentrated in the gut, instead of the blood.  After some time they show up in the blood also.  The thinking is the antibodies go where the work is.  Anyway, theories aside, it takes very little gluten to kick off an immune response.  Those antibodies are not aimless soldiers.  They start doing their work and destroying gluten and gut tissue even if you don't feel symptoms.  Did you know there are some people who have no GI symptoms of celiac disease but still have it?  They call that silent celiac.  So going by symptoms is not a good way to judge actual damage in the gut. You are wise to go in for followup testing, but the followup testing is hopefully to show compliance with the gluten-free diet, and lower antibody test results.  Have your close family members been tested for celiac disease?  It sounds like they should be.   There is a 5% higher chance of them having celiac than the general population. Welcome to the forum!
    • Thank you!  I emailed the company too but the last time I did that with one I never heard back.  I hate to chance it but could use some relief!
    • Hey all, I'm new here but not new to celiac. Wheat intolerances are all over the place in my family  as well as AI thyroid issues (Hashis). When my CRO and ESR rates were extremely high, my doctor suggested it could be gluten/dairy and I was gluten free for the better part of a year. I've been tested in the past twice, once with a "false positive" and one totally negative. Going gluten free didn't help my inflammation rates go down (they went up actually) and I became more lenient with my diet recently because of the nature of my work (I'm a chef), with little negative effect. At my last appointment, I confessed to having had eaten gluten with no real issue for the past several weeks, and when the doctor prescribed other blood work I wanted a celiac panel "just in case" but we both agreed they'd all be negative.  WELP I just got my results back via email, and the primary panel came back all within normal range, but the celiac reflex panel came back positive  my results are posted below  I've googled what a celiac reflex panel is and haven't come up with anything, I've searched these forums and others and can't find anything that even really explains what this test is. I'd love some help understanding the different tests as well as my results. Thank you in advance!        Ps, it looks like my crop job lopped off the top result, but for those who can't tell, the result is Anti-Gliadin Ab Iga 7    Thanks again!      
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