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If The Celiac Panel Shows You Don't Have The Antibody Does That Mean You Don't Have Celiac Disease?

honedo

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honedo Newbie
honedo
Posted

Hi all,

I first found out I have an allegy to wheat with a IgE blood test then a nurse pract. ordered more blood tests, I think a Celiac Panel. She called me and said I don't have the antibody for celiac so I don't have the disease but now the GI doctor wants to do an endoscopy to know for sure. He told me to go off the gluten free diet, so I have. My only previous symptoms were bloating and more recently I've been experiencing muscle spasms and back pain, which did not go away even though i was on the diet for 3 weeks. I thought the endoscopy might be a good idea even if I don't have Celiac since its a camera and he might see any other problems going on? Does that make sense? Or should I be questioning whether to have this done at all?

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Guest nini
Guest nini
Posted

no.

you need to find out exactly what tests were run, you need to know that the gluten free diet, even for three weeks, will affect the results of your biopsy. So, regardless of what the biopsy finds, you should consider staying gluten free as the possibility of false negative test results are highly possible. However, if you get a positive, It's positive.

back to what tests did they run. There is a specific panel of tests that must be run at minimum, to screen for Celiac.

Anti-Gliadin (AGA) IgA

Anti-Gliadin (AGA) IgG

Anti-Endomysial (EMA) IgA

Anti-Tissue Transglutaminase (tTG) IgA

Total Serum IgA

the bare minimum they should have done is the EMA and the tTG... if they didn't at least do those two tests, and show you the results, they can't tell you that you don't have it.

4tomorrow Apprentice
4tomorrow
Posted

I had negative blood results, but the GI saw flattening in my small intestine during my endo. My biopsy was inconclusive.

I had enterolab testing and I have Gluten Sensitivity. Not full blown Celiac but I still have to follow the same diet.

tarnalberry Community Regular
tarnalberry
Posted

no, blood tests are not conclusive. if there isn't enough damage for the antibodies produced in the gut to make it into the bloodstream, you won't get a positive blood test result.

2Boys4Me Enthusiast
2Boys4Me
Posted
I had negative blood results, but the GI saw flattening in my small intestine during my endo. My biopsy was inconclusive.

I thought and endoscopy and biopsy are kind of the same. Isn't the procedure an endoscopy and the samples they take are the biopsy :unsure: ? I don't get it. :blink:

Lisa Mentor
Lisa
Posted

If the GI Dr. did an endo and he/she saw damage to the villi he/she should have taken 6-8 samples to be tested. My guess that he/she only took a few. If he/she saw damage, then most likely you have Celica.

honedo Newbie
honedo
Posted
  • Author

Thanks all for the info....I'm confused though, nini, I thought you had to consume gluten before the endoscopy so it will show positive results for celiac. If I'm gluten free won't I take a risk having negative results because of the diet?

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Guest nini
Guest nini
Posted
Thanks all for the info....I'm confused though, nini, I thought you had to consume gluten before the endoscopy so it will show positive results for celiac. If I'm gluten free won't I take a risk having negative results because of the diet?

um yes, I guess I wasn't clear in my explanation... you have to be consuming gluten for the endoscope to be accurate, BUT you said you had already been gluten free for 3 weeks, SO, I was just reminding you that even if you eat a ton of gluten leading up to the endoscope, the fact that you were gluten free for 3 weeks theoretically "could" affect the test results. Realistically IF there is damage it won't go away in 3 weeks, but you never know. The human body is amazing in it's ability to heal itself and Dr.s are reluctant to dx Celiac unless they see full fledged villous atrophy.

All I was saying is if after your biopsy you are still left with inconclusive results, please consider giving the gluten free diet a good effort to see if it improves your health issues. Ultimately a positive dietary response to a gluten free diet is the best indicator.

CMCM Rising Star
CMCM
Posted

I had a blood test (admittedly it didn't appear to do all the necessary tests) in 2001 which came back totally negative, very low results. At the time, and for at least 20 years prior to that, I had been plagued with digestive and other symptoms, including back and muscle aches and asthma type symptoms. So from that test, the doctor grandly pronounced me non-celiac. My symptoms got worse between 2001 and now, and a recent Enterolab stool test revealed a totally different picture. The test showed antibodies and auto-immune reactions, but no malabsorption (which doesn't necessarily mean there is no damage), and I have 2 genes (celiac plus gluten sensitivity). Since I have long-term ongoing symptoms, I should not eat gluten. I personally do not feel the need of undergoing the physical stress and expense of a biopsy. My doctors are relatively useless anyway, since they don't know squat about celiac disease. Even if I ignore the possible health consequences of continuing to eat gluten, the fact is, I am really sick and tired of dealing with these digestive consequences so what I need to do is obvious: stop eating gluten. Following the diet is really important for putting things into perspective.

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    • Heatherisle
      Blood results

      By Heatherisle · Posted

      Aw thank you so much for replying so quickly. Just wish the endoscopy had been clearer but as you say she might be in the early stages although she’s had gastric intestinal symptoms for a few years now but was told it was IBS. She won’t get the results for about 12 weeks which is frustrating, so hopefully if she trials a gluten free diet things will hopefully improve even if only slightly. I know improvements aren’t likely to happen immediately
    • trents
      Blood results

      By trents · Posted

      Well, you've done both stages of testing now, the blood testing and the scope/biopsy so there is no reason to postpone trialing a gluten-free diet. And, yes, we get many reports on this forum from people with similar diagnostic experiences that leave them without desired clarity. My take would be your daughter is in the early stages of developing active celiac disease, perhaps transitioning from NCGS (Non Celiac Gluten Sensitivity) to celiac.
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      Blood results

      By Heatherisle · Posted

      Sorry, typing error, not strophic, should read strophic!!!! Did it again, atrophic, not strophic, (flippin technology)
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      Blood results

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