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Oooops, My Blood Work Is Back!


Kottemamman

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Kottemamman Apprentice

Dear celiac friends,

I've been waiting for a week to get the results of my blood work. Today it finally arrived!

Tissue transglutaminase <1 (ref.range <7)

S-Gliadin IgA 1.2 (ref.range <7)

My doctor claims it is normal, but I am worried by the fact that I do have Gliadin IgA-antibodies at all, as I have understood that they are less sensitive but more specific to celiac. I would feel better with no antibodies at all (and a working stomach..;))

So, does anybody have any ideas on what to do? My mother has just been diagnosed with celiac disease (she is very obese, and I don


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ravenwoodglass Mentor

Go with the diet, then if you still have doubts when you are feeling better you can always do a SHORT gluten challenge, in others words eat it in pure form, cream of wheat or triscuits, for a few days until you react. If you are not asymptomatic that is the best way of diagnosis that there is. Many, many of the testing procedures are woefully inadaquate and they miss alot of us. If your Mom is celiac chances are real good if you are having problems that you are also.

JenKuz Explorer
Dear celiac friends,

I've been waiting for a week to get the results of my blood work. Today it finally arrived!

Tissue transglutaminase <1 (ref.range <7)

S-Gliadin IgA 1.2 (ref.range <7)

My doctor claims it is normal, but I am worried by the fact that I do have Gliadin IgA-antibodies at all, as I have understood that they are less sensitive but more specific to celiac. I would feel better with no antibodies at all (and a working stomach..;))

So, does anybody have any ideas on what to do? My mother has just been diagnosed with celiac disease (she is very obese, and I don

aikiducky Apprentice

Kottemamman, it's very common to have negative blood tests but a positive biopsy. A negative blood result does not guarantee that you don't have celiac. So you could consider asking for a biopsy.

It's quite possible, also, that you would test positive in a few years time. If you want to do that, you just have to continue eating gluten until possibly at some point you do test positive.

The third option is to go gluten free and see if that helps. It might mean that you never will get an official diagnosis, so you should only do that if you don't think you need one. I don't have an official diagnosis because i refuse to go back on gluten to be tested, and so far I haven't needed an official diagnosis for anything, but your circumstances might be different.

Pauliina

tarnalberry Community Regular

the IgA test can tell you anything if they didn't have a total IgA taken as well. a nontrivial portion of celiacs are IgA deficient. I'd either ask for *full* testing, or try the diet and see how it goes.

Kottemamman Apprentice

Great, they didn

little d Enthusiast

You know there are alot of people here are fortunate enough to have family members currently with celiac disease and have been tested and all positive, but me well all my relatives have never gone to get tested let along go to a doctor if they are sick they just treat themselves so I have gone into this blindly understanding that I have a problem, I guess that it helps that I work in the medical field, so i guess I just might be more intune with what my body is telling me and not afraid to go get tested and helps to have insurance as well. So to all get tested first before you start the diet that is what i did, self diagnosis with the help of my sister who is going through the same we started the diet for a few months BIG MISTAKE and then got tested and heartache of hearing that I'm negative it must IBS we can start you on some meds to help. SO I have been a yo yo with the diet and all symptoms have come back and I now regrete not listening to what my body is telling me, knowing that it only has helped me in the past so I do say TEST FIRST then the diet, hopefully you too won't get a false negative. Learn alot people before starting the diet it will help you in the long run.

donna


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natalie Apprentice

I had negative blood work but a positive biopsy. It depends how bad you want a firm diagnosis. If you are happy to just go on the gluten-free diet and avoid the doctors then try it out.

Natalie

Kottemamman Apprentice

Well, I really can

natalie Apprentice
Well, I really can
  • 2 weeks later...
Kottemamman Apprentice

Hi friends,

just a short update! I have now been gluten-free for ten days and...yes, there really are some changes. My stomach is not that swollen anymore (e.g. I have stopped looking 5-6 months pregnant). Normal intestine reflexes are developing, so when I eat I also need to go to the bathroom afterwards. No sign of diarrhea, still a tendency towards constipation (I am adding more fibers, that should be beneficial). The most curious thing for me is that I am loosing weight (I added a couple of not-so-appreciated pounds when I turned hypothyroid, and those pounds didn

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    • trents
      NCGS does not cause damage to the small bowel villi so, if indeed you were not skimping on gluten when you had the antibody blood testing done, it is likely you have celiac disease.
    • Scott Adams
      I will assume you did the gluten challenge properly and were eating a lot of gluten daily for 6-8 weeks before your test, but if not, that could be the issue. You can still have celiac disease with negative blood test results, although it's not as common:  Clinical and genetic profile of patients with seronegative coeliac disease: the natural history and response to gluten-free diet: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5606118/  Seronegative Celiac Disease - A Challenging Case: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9441776/  Enteropathies with villous atrophy but negative coeliac serology in adults: current issues: https://pubmed.ncbi.nlm.nih.gov/34764141/  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.
    • Xravith
      I'm very confused... My blood test came out negative, I checked all antibodies. I suppose my Total IgA levels are normal (132 mg/dl), so the test should be reliable. Still, I'm not relieved as I can't tolerate even a single biscuit. I need to talk to my doctor about whether a duodenal biopsy is necessary. But it is really possible to have intestinal damage despite having a seronegative results? I have really strong symptoms, and I don't want to keep skipping university lectures or being bedridden at home.
    • Scott Adams
      They may want to also eliminate other possible causes for your symptoms/issues and are doing additional tests.  Here is info about blood tests for celiac disease--if positive an endoscopy where biopsies of your intestinal villi are taken to confirm is the typical follow up.    
    • Scott Adams
      In the Europe the new protocol for making a celiac disease diagnosis in children is if their tTg-IgA (tissue transglutaminase IgA) levels are 10 times or above the positive level for celiac disease--and you are above that level. According to the latest research, if the blood test results are at certain high levels that range between 5-10 times the reference range for a positive celiac disease diagnosis, it may not be necessary to confirm the results using an endoscopy/biopsy: Blood Test Alone Can Diagnose Celiac Disease in Most Children and Adults TGA-IgA at or Above Five Times Normal Limit in Kids Indicates Celiac Disease in Nearly All Cases No More Biopsies to Diagnose Celiac Disease in Children! May I ask why you've had so many past tTg-IgA tests done, and many of them seem to have been done 3 times during short time intervals?    
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