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turtleturtle

Test Results: Celiac Vs. Gluten Intolerance

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My WBC was really low at my physical and my doctor told me not to eat gluten or dairy for a month. It didn't really surprise me because I pretty much always feel sick. I am about two weeks in and don't feel much better but think I might feel a bit better. Some things are definitely better, namely the eczema that was on my leg has cleared completely and my back-ne is also clearing. Once I started reading about gluten, I sort of wanted to have an intolerance because I actually started admitting to myself how badly I had felt physically over the last couple of years (I had hesitated to really admit it because I didn't think there was any solution). Anyways, my doc just said don't eat dairy or gluten for a month and then she wanted to resee me and check things again but once I started reading about gluten and such I asked for a celiac test and took the blood panel about 3 days into not eating gluten. These are the results which clearly seem to indicate no problem with gluten. My question is is could I still have a problem with gluten and just no celiac or do I need to look elsewhere?

This is what my doctor sent me when I requested her to email me the results:

Endomysial Antibody IgA: negative Normal: negative

T-Transglutaminase IgA: 0.0 Normal:0.0-3.0 U/mL

Immunoglogulin A, Qn, Seru: 236.0 Normal:70.0-400.0 mg/dL

Thanks!

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Easy answer - yes! No question that you could have issues with gluten yet not be diagnosed with celiac.

First, a diagnosis of celiac depends on an endoscopy of the small intestine while a patient is eating gluten that includes a biopsy of at least four areas. Note that blood work, which may be preliminary, is not conclusive. In an endoscopy - done by a GI doctor - a lense will be inserted into the patient's small intestine and the intestine will be viewed for damage (blunted villi) and cells will be taken for a biopsy. However, this procedure is often done incorrectly. For example, in my case, my doctor looked only at one spot of my intestine and did not take a biopsy. He concluded that I was negative for celiac, yet for some reason he couldn't explain my stomach was oozing blood. Clearly something was going on!

Secondly, gluten intolerance is a condition all by itself. Since my doctor didn't do my endoscopy correctly back when I was eating gluten, I don't know if I have celiac. But I know that I react to gluten - with digestive cramps and painful neuropathy (pain in my legs & arms). That said, the medical profession has only accepted this recently, so your doctor may not be aware of this. Science journal (the gold standard of research science) included a study just this year that confirmed that - yes! - gluten intolerance does exist outside of celiac.

By the way, my blood work is inconclusive. You'd never know that I have issues with gluten (whether celiac or gluten intolerant) from labs. Yet, I've had extreme symptoms which have receded on a gluten-free diet.

That your skin issues are clearing up is a positive sign that you're responding to the new diet. Definitely stay on it. It took a long time for my symptoms to resolve after going gluten free. (I'm still not entirely there yet after almost 1 and 1/2 years.) We're all different.

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False negatives are not uncommon at all unfortunately. You could go back on gluten for a bit and have an endoscopy with biopsies but even those have a high rate of false negatives. Your body will give you the answer though. If you feel better without gluten and adding gluten back in makes you ill then you have your answer. Do be strict with eliminating it and then maybe in a couple of months go back to gluten for a week. If you make it that long. It can take a few days to react so if your first couple gluten days you still feel fine know that is not unusual.

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I tested negative when I had the blood test for celiac disease (no biopsy has ever been done as my drs treated the blood test results as conclusive) but I have experienced great improvements health wise by going gluten free. The fatigue that my drs diagnosed as depression for the last 8 years is going, my dizziness has gone completely as has my vertigo. My moods have improved. My stomach is now settled and the diarrhoea I was getting has pretty much gone now. My brain fog has vanished (most days unless I accidentally eat something with wheat or gluten in). My acid reflux has gone. My stomach pain has ceased and I can function again now.

All in all, regardless of what the blood test said, my body has most definitely responded favourably to a gluten free diet.

I also avoid most processed foods and eat a whole foods diet.

Whatever the reason...it has worked.

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My WBC was really low at my physical and my doctor told me not to eat gluten or dairy for a month. It didn't really surprise me because I pretty much always feel sick. I am about two weeks in and don't feel much better but think I might feel a bit better. Some things are definitely better, namely the eczema that was on my leg has cleared completely and my back-ne is also clearing. Once I started reading about gluten, I sort of wanted to have an intolerance because I actually started admitting to myself how badly I had felt physically over the last couple of years (I had hesitated to really admit it because I didn't think there was any solution). Anyways, my doc just said don't eat dairy or gluten for a month and then she wanted to resee me and check things again but once I started reading about gluten and such I asked for a celiac test and took the blood panel about 3 days into not eating gluten. These are the results which clearly seem to indicate no problem with gluten. My question is is could I still have a problem with gluten and just no celiac or do I need to look elsewhere?

This is what my doctor sent me when I requested her to email me the results:

Endomysial Antibody IgA: negative Normal: negative

T-Transglutaminase IgA: 0.0 Normal:0.0-3.0 U/mL

Immunoglogulin A, Qn, Seru: 236.0 Normal:70.0-400.0 mg/dL

Thanks!

The Celiac panel you had done seems a bit strange to me. They didn't test you for any of the anti-gliadin anitbodies or deamidated gliadin peptide antibody. These tests (more so the DGP) are more likely to show a gluten intolerance, and may be positive before the tTG. The EMA and tTG are indicative of villi damage to the small intestine.

Yes, you most definately could have gluten intolerance and not have actual Celiac disease. Google non-Celiac gluten intolerance and see what you get. You might be suprised that by going gluten free you get your answer!

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The Celiac panel you had done seems a bit strange to me. They didn't test you for any of the anti-gliadin anitbodies or deamidated gliadin peptide antibody. These tests (more so the DGP) are more likely to show a gluten intolerance, and may be positive before the tTG. The EMA and tTG are indicative of villi damage to the small intestine.

Yes, you most definately could have gluten intolerance and not have actual Celiac disease. Google non-Celiac gluten intolerance and see what you get. You might be suprised that by going gluten free you get your answer!

I am actually wondering if they only sent me part of the test since I spent part of the afternoon reading more and feel that usually the test should also have the anti-gliadin antibodies (which I think are the more general antibodies which I could have elevated for gluten intolerance if I had that and not celiac) as well. I just emailed the office and asked them to email it to me, perhaps I only got sent the abridged version. I am going in in a couple weeks, we will see.

I definitely will continue on gluten-free and dairy free at least until the doctor's visit. The only other thing though that I want to consider is that I have been on topamax for a while and wonder if that is what is actually messing with my system. But then again I read that migraines that pretty much don't respond to tx (which would be mine) are a common response to gluten. This gives me all this hope that I actually want this diagnosis even though I love bread and pasta. Ha. To not have headaches would be crazy. To not feel run down all the time also amazing, even to have the possibility. Thanks y'all

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Actually I just looked up the test code online and it seems they might have sent me an abridged version

test code is Celiac Panel 83516 x4

which according to a site is supposed to include

Tissue Transglutaminase Antibody, IgA, U/mL; Tissue Transglutaminase Antibody, IgG, U/mL; Gliadin Antibody, IgA, Units; Gliadin Antibody, IgG, Units; IgA, mg/dL.

So we will see...because actually that doesn't make sense because it doesn't have the endomysial antibody..? oh well I'll just wait until I see her

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It may depend on the panel they ordered. I know when I looked out our Lab's test menu, they had several different celiac panels. They also had a gluten sensitivity panel. Some included more tests than others.

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