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Negative Diagnosis

seattlemom

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seattlemom Newbie
seattlemom
Posted

I was diagnosed 18 years ago with Celiac Disease and was on a gluten free diet for 5 years. We moved and I went to a different Gastro physician. He said I did not have celiac disease and so I went back to eating a diet including gluten. I have been feeling badly for about two years now. Chronic fatigue, headaches, stomach issues, joint pain...the list just goes on. I am only 43. I have had every other test done. Tests for auto immune disorders, arthritis, cancer, thyroid problems, and all are negative. I just asked my physician to do the blood test for celiac disease, which came back negative. He insists that I do not have celiac disease. Does anyone know how definitive the blood tests are?? Thanks for any information....: )

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samcarter Contributor
samcarter
Posted
I was diagnosed 18 years ago with Celiac Disease and was on a gluten free diet for 5 years. We moved and I went to a different Gastro physician. He said I did not have celiac disease and so I went back to eating a diet including gluten. I have been feeling badly for about two years now. Chronic fatigue, headaches, stomach issues, joint pain...the list just goes on. I am only 43. I have had every other test done. Tests for auto immune disorders, arthritis, cancer, thyroid problems, and all are negative. I just asked my physician to do the blood test for celiac disease, which came back negative. He insists that I do not have celiac disease. Does anyone know how definitive the blood tests are?? Thanks for any information....: )

Did the gluten free diet you were on for five years help you? Did you feel better, have more energy, lack of stomach pain...if so, then it sounds like your latest doctor is one of those "Celiac is very rare," blah de blah people. Why did he decide you don't have celiac disease? Was it just something he pulled out of the air? Or based on definitive testing?

Which blood test did your doctor do? Mine would only do the EMA test, which came back negative. Up to 20% of celiac patients have negative EMA. I did have an extremely positive response to the gluten free diet, which for me, constitutes a diagnosis.

How were you diagnosed 18 years ago? If it was via biopsy, that is considered the gold standard for a diagnosis, and I'd go with that and tell your current doctor to sod off.

Lisa Mentor
Lisa
Posted

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Did your doctor run all these tests. You should have had all of them, because they can be interpreted as they are interactive?

You can certainly try the diet again. If you have positive dietary response, it's a good indication that you have a gluten issue, either Celiac or an intolerance. The RX is the same, as you well know.

Amyleigh0007 Enthusiast
Amyleigh0007
Posted

Perhaps your body healed and that's why your blood tests are now negative. If you were gluten free for 5 years it might have been enough time for your body to heal itself. You wouldn't produce the antibodies anymore, therefore you would have a negative blood test. It might take awhile for your body to get damaged again, and to produce enough antibodies, for another positive blood test. If you felt better while eating gluten free then I would stay gluten free regardless of what your current doctor says about your Celiac status.

seattlemom Newbie
seattlemom
Posted
  • Author
Perhaps your body healed and that's why your blood tests are now negative. If you were gluten free for 5 years it might have been enough time for your body to heal itself. You wouldn't produce the antibodies anymore, therefore you would have a negative blood test. It might take awhile for your body to get damaged again, and to produce enough antibodies, for another positive blood test. If you felt better while eating gluten free then I would stay gluten free regardless of what your current doctor says about your Celiac status.

The tests I had done were:

Endo IgA Scr None detected

Endo IgA Titer Not applicable

TTGABA 0.6

TTABG 0.6

When I was diagnosed several years ago, it was with a biopsy of the small intestine.

mushroom Proficient
mushroom
Posted
When I was diagnosed several years ago, it was with a biopsy of the small intestine.

Well, there you go. That's it, you have it, regardless of what your current doc says. Show him a copy of your biopsy report, if you have it, but even if you don't, tell him he's wrong and forget him. Go back on the diet and do yourself a big favor.

Amyleigh0007 Enthusiast
Amyleigh0007
Posted
The tests I had done were:

Endo IgA Scr None detected

Endo IgA Titer Not applicable

TTGABA 0.6

TTABG 0.6

When I was diagnosed several years ago, it was with a biopsy of the small intestine.

Did your current doctor dismiss your previous Celiac diagnosis due to negative blood tests done recently? I'm not a doctor but I still think that if you were gluten free for 5 years your body healed and that's why your blood test was negative. The biopsy is the "gold standard" of diagnosis so if your previous doctor diagnosed you based on that then I would be confident you have Celiac. On a personal note, my bloodtest was negative. When I went to another doctor for a second opinion she told me that becasue I had been gluten "light" for over 2 months prior to my testing that made my results inaccurate. She said I could have a biopsy done if I wanted an offical diagnosis but I would have to eat gluten for a good 6 months before the biopsy. She said even in 2 short months of being gluten free your body can heal so much that tests (blood and biopsy) could be inaccurate.

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seattlemom Newbie
seattlemom
Posted
  • Author
Did your current doctor dismiss your previous Celiac diagnosis due to negative blood tests done recently? I'm not a doctor but I still think that if you were gluten free for 5 years your body healed and that's why your blood test was negative. The biopsy is the "gold standard" of diagnosis so if your previous doctor diagnosed you based on that then I would be confident you have Celiac. On a personal note, my bloodtest was negative. When I went to another doctor for a second opinion she told me that becasue I had been gluten "light" for over 2 months prior to my testing that made my results inaccurate. She said I could have a biopsy done if I wanted an offical diagnosis but I would have to eat gluten for a good 6 months before the biopsy. She said even in 2 short months of being gluten free your body can heal so much that tests (blood and biopsy) could be inaccurate.
seattlemom Newbie
seattlemom
Posted
  • Author

Thanks to everyone that replied. My feeling was that I do have Celiac Disease, but when a doctor tells you that the tests don't lie and that I do not have Celiac, it makes me question what I am feeling and what I have been told previously. I have been on a gluten-free diet for about a week now and feel much better. Thanks!!

leadmeastray88 Contributor
leadmeastray88
Posted
Thanks to everyone that replied. My feeling was that I do have Celiac Disease, but when a doctor tells you that the tests don't lie and that I do not have Celiac, it makes me question what I am feeling and what I have been told previously. I have been on a gluten-free diet for about a week now and feel much better. Thanks!!

How can your doctor say you do NOT have Celiac disease? He obviously hasn't looked at your medical history. He should know that the antibodies disappear after going gluten free. You should definitely see if you can get copies of your biopsy report. Obviously if your bloodwork was negative that means you're doing a good job on the diet.

Go with your gut :)

ravenwoodglass Mentor
ravenwoodglass
Posted
Thanks to everyone that replied. My feeling was that I do have Celiac Disease, but when a doctor tells you that the tests don't lie and that I do not have Celiac, it makes me question what I am feeling and what I have been told previously. I have been on a gluten-free diet for about a week now and feel much better. Thanks!!

Glad to hear you are back on the diet. What you experienced was the reason why doctors used to think children outgrew celiac. You healed fully on the diet and it can take years for the disease to become obvious again after adding gluten back in. For you, if I read correctly, it took 13 or so years to become fully symptomatic again. In addition blood testing has a very high false negative rate even when on a full gluten diet and in full blown celiac. If I had waited till I had a positive blood test I would likely be dead by now. I was tested repeatedly when my health was at it's worst and being false negative delayed my healing by years resulting in some permanent damage. Not even one of all the specialists I saw suggested trying the diet or even told me what the test for 'sprue' was. Sounds like our doctors think alike as far as the testing goes, unfortunately.

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