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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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  • Posts

    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      @rei.b,  I understand how frustrating starting a new way of eating can be.  I tried all sorts of gluten-free processed foods and just kept feeling worse.  My health didn't improve until I started the low histamine AIP diet.  It makes a big difference.   Gluten fits into opioid receptors in our bodies.  So, removing gluten can cause withdrawal symptoms and reveals the underlying discomfort.  SIBO can cause digestive symptoms.  SIBO can prevent vitamins from being absorbed by the intestines.  Thiamine insufficiency causes Gastrointestinal Beriberi (bloating, abdominal pain, nausea, diarrhea or constipation).  Thiamine is the B vitamin that runs out first because it can only be stored for two weeks.  We need more thiamine when we're sick or under emotional stress.  Gastric Beriberi is under recognised by doctors.  An Erythrocyte Transketolace Activity test is more accurate than a blood test for thiamine deficiency, but the best way to see if you're low in thiamine is to take it and look for health improvement.  Don't take Thiamine Mononitrate because the body can't utilize it well.  Try Benfotiamine.  Thiamine is water soluble, nontoxic and safe even at high doses.  I thought it was crazy, too, but simple vitamins and minerals are important.  The eight B vitamins work together, so a B Complex, Benfotiamine,  magnesium and Vitamin D really helped get my body to start healing, along with the AIP diet.  Once you heal, you add foods back in, so the AIP diet is worth doing for a few months. I do hope you'll consider the AIP diet and Benfotiamine.
    • captaincrab55
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      Imemsm, Most of us have experienced discontinued, not currently available or products that suddenly become seasonal.   My biggest fear about relocating from Maryland to Florida 5 years ago, was being able to find gluten-free foods that fit my restricted diet.  I soon found out that the Win Dixie and Publix supper markets actually has 99% of their gluten-free foods tagged, next to the price.  The gluten-free tags opened up a  lot of foods that aren't actually marked gluten-free by the manufacture.  Now I only need to check for my other dietary restrictions.  Where my son lives in New Hartford, New York there's a Hannaford Supermarket that also has a gluten-free tag next to the price tag.  Hopefully you can locate a Supermarket within a reasonable travel distance that you can learn what foods to check out at a Supermarket close to you.  I have dermatitis herpetiformis too and I'm very sensitive to gluten and the three stores I named were very gluten-free friendly.  Good Luck 
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long?   DGP IgG antibodies are produced in response to a partial gluten molecule.  This is different than what tissue transglutaminase antibodies are  produced in response to.   TTg IgA antibodies are produced in the intestines in response to gluten.  The tTg IgA antibodies attack our own cells because a structural component in our cell membranes resembles a part of gluten.  There's a correlation between the level of intestinal damage with the level of tTg antibodies produced.  You are not producing a high number of tTg IgA antibodies, so your level of tissue damage in your intestines is not very bad.  Be thankful.   There may be reasons why you are not producing a high quantity of tTg IgA antibodies.  Consuming ten grams or more of gluten a day for two weeks to two months before blood tests are done is required to get sufficient antibody production and damage to the intestines.  Some undiagnosed people tend to subconsciously avoid lots of gluten.  Cookies and cakes do not contain as much gluten as artisan breads and thick chewy pizza crust.  Anemia, diabetes and thiamine deficiency can affect IgA antibody production as well.   Do you carry genes for Celiac?  They frequently go along with EDS.
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
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