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.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Jmartes71 replied to Jmartes71's topic in Related Issues & Disorders
      3

      New issue

    2. - knitty kitty replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      44

      My journey is it gluten or fiber?

    3. - knitty kitty replied to hjayne19's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      13

      Insomnia help

    4. - trents replied to hjayne19's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      13

      Insomnia help

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,102
    • Most Online (within 30 mins)
      7,748

    Dawn74
    Newest Member
    Dawn74
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • Jmartes71
      Nope its just me because they can eat wheat and when we use same pans I found out last year thanks to you guys and the autoimmune website im learning,we are not to share though clean, same with sponge. I just wish doctors understood. I am with new gi and new pcp but im falling apart because blood work is fabulous.Im so ANGERY.I have reached out to my local representative, in Stanislaus but its just weekly stuff.Im going to need to physical go down there.Any recommendations on what to say and do because this is absolutely ridiculous. If I didn't have my husband though we are really hurting with one income, I would absolutely be one of the homeless population. Thats alarming begging to be heard about a diagnosis that was given as an adult and dealing with this, medical needs to stick to patients regardless of switching insurance or doctor. 
    • knitty kitty
      If you haven't noticed a difference yet, bump up your Thiamax.  Add in another Thiamax with breakfast and lunch.  Increase the NeuroMag as well.  You can add in another Benfotiamine, too.   Thiamine is safe and nontoxic even in high doses.  Taking more is fine. I had to bump mine up several times when first starting.  It's a matter of finding what works for you.  Everyone is different.   Stick with it.  Some of the health improvements are very subtle and gradual.   Keep going!  You're doing great!
    • knitty kitty
      Hello, @hjayne19, About half of the people with Celiac disease react to the protein Casein in dairy the same as to gluten with the inflammation and antibodies and all.  Reacting to Casein is not the same as lactose intolerance nor a dairy allergy.  Damaged villi are incapable of producing lactAse, the enzyme that digests lactOse, the sugar in dairy.  When the villi grow back, the villi can resume making lactase again.  I react to casein. Keep in mind that part of the autoimmune response to gluten and casein is the release of histamine.  Histamine causes inflammation, but it is also powerful excitory neurotransmitter, causing heightened mental alertness.  Histamine release is what causes us to wake up in the morning.  Unfortunately, excessive histamine can cause insomnia.  Our bodies can make histamine, but foods we eat contain different amounts of histamine, too.  Our bodies can clear a certain amount of histamine, but if overwhelmed, chronic high histamine levels can keep inflammation going and cause other health problems.   I got very weary of playing Sherlock Holmes trying to deduce what I was reacting to this week, so I adopted the low histamine version of the Autoimmune Protocol diet, a Paleo diet designed by a doctor with Celiac, Dr. Sarah Ballantyne.  Her book, The Paleo Approach, has been most helpful.   The low histamine AIP diet cuts out lots of foods that are known to be irritating to the digestive tract.  After a few weeks, when my system was calmer and healing, I could try adding other foods to my diet.  It was much easier starting with safe foods, adding one thing at a time, and checking for reactions than trying to figure out what I was reacting to with so many variables.  I learned to recognize when I had consumed too much histamine from different combinations of foods.  Everyone is different and can tolerate different amounts of histamine in their food.  B Vitamins help us make enzymes that break down histamine.  Vitamin D helps regulate and calm the immune system.  Supplementing with Thiamine helps prevent mast cells from releasing histamine.  Keeping a food-mood-poo'd journal helps identify problematic foods.   I hope you will consider trying the AIP diet.
    • trents
      You may be cross reacting to the protein "casein" in dairy, which is structurally similar to gluten. People assume lactose intolerance is the only problem with dairy. It is not, at least for the celiac community.
    • hjayne19
      Hi @knitty kitty  Just revisiting this to get some help. I found after understanding the extent of my anxiety, my sleep got a little better. Flash forward to a few weeks later I have had a few bad sleeps in a row and I feel desperate for a good nights sleep. I understand worrying about it won’t help but one thing I had tied things too was dairy. Initially when I went gluten free I felt great for the first few weeks then started having some stomach pain. So thought maybe I was lactose intolerant. I started eating lactose free Greek yogurt and that did help take the cramping away I guess. Over the last few months I haven’t eaten it every single day and I went a few weeks without it. The last few nights I did have a small amount with breakfast and noticed that was the only new thing I’ve really added to my diet. I had seen a few other posts about this. Is it possible to still react to lactose free? Would this potentially be a dairy allergy? Or something else. 
×
×
  • 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.