Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

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


honedo

Recommended Posts

honedo Newbie

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?


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Guest nini

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

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

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
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

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

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?


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Guest nini
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

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.

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,762
    • Most Online (within 30 mins)
      7,748

    dangunderson
    Newest Member
    dangunderson
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • knitty kitty
      For back pain, I take a combination of Cobalamine B12, Pyridoxine B 6, and Thiamine B 1 (in the form Benfotiamine), which have an analgesic effect.  These three B vitamins together work way better than those over the counter pain relievers.  Theses are water soluble B vitamins that are easily excreted via the kidneys if not needed.  Thiamine will also help the nausea. Interesting Reading... Mechanisms of action of vitamin B1 (thiamine), B6 (pyridoxine), and B12 (cobalamin) in pain: a narrative review https://pubmed.ncbi.nlm.nih.gov/35156556/#:~:text=Some of these processes include,Analgesics
    • knitty kitty
      @stephaniekl, welcome to the forum, Is your daughter taking any nutritional supplements?   Weight loss and failure to thrive are two symptoms of thiamine insufficiency.  Thiamine deficiency symptoms are not recognized as such by doctors.   I experienced similar symptoms when I became malnourished.  Thiamine deficiency symptoms can become worse quickly, and can affect one emotionally and mentally.  Although blood tests for thiamine aren't accurate, do have your daughter checked for nutritional deficiencies.  Thiamine B 1 works with the other B vitamins and magnesium.  Thiamine and Niacin B 3 help improve Gerd.  All the B vitamins are frequently low due to malabsorption.  Vitamin D will help calm the immune system.  Thiamine helps the immune system fight off viruses like those tick borne illnesses.   Thiamine Mononitrate, which is in many vitamin supplements, is not bioavailable.  I was taking a multivitamin containing thiamine mononitrate and still became deficient in thiamine. Thiamine in the form Benfotiamine has been shown to promote intestinal healing.  A form called TTFD (tetrahydrofurfuryl disulfide) is also excellent for correcting thiamine deficiency.  A combination of Thiamine, Cobalamine B12, and Pyridoxine B 6 has analgesic properties.  I take it for back pain.   Keep us posted on your progress! Interesting Reading... The importance of thiamine (vitamin B1) in humans https://pmc.ncbi.nlm.nih.gov/articles/PMC10568373/#:~:text=Thiamine absorption in the jejunum,system [51–53].
    • trents
      Has prednisone or some other systemic steroid been tried that might quiet her immune system down for a while? I have two acquaintances with Lyme's disease. It is a wicked condition that has long fingers.
    • stephaniekl
      We have.  She is so limited as to what she can eat.  She has a nutritionist, but they are even at a loss.  Right now, her pain is so significant that she can only eat 5-10 bites a meal.   We just got some labs back today and she is hypoglycemia, anemic and her immune system is shot.  She also is positive for 3 tickborne illnesses.  Thanks for your help! 
    • RMJ
      A much better suggestion than that of the new doctor!
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.