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

Could It Be Something Else? On Top Of Celiac?


miss vivian

Recommended Posts

miss vivian Newbie

Hey all.

Well, I had an accident where I ate gluten last Sunday. Now it's over a week later, and I still have that old burning sensation in my upper abdomen - just like before.

I have been totally gluten-free. Since I got the call from my gastro telling me that I had this, I went off gluten, except for my mistake last week....

I was looking at my blood work - and I was diagnosed due to a high anti endomysial level. However, my IGA level was normal... I had the biopsy done 5 weeks after going gluten free - and of course, the biopsy was normal. I did the biopsy just to see what damage was done, and it was good to know that things look good in there. :)

Anyway, here's what I'm driving at....

Do you think a high anti endomysial level is the most accurate diagnostic test?

Why is my IGA level 133 - when the normal range is 75 - 310?

What else could be causing this PAIN?? I'm beginning to think maybe I have cancer.. I know that sounds terrible, but why all of this pain for no reason? UGH! Shoot me now!

I have not strayed and I will not stray. I am a gluten free girl, just frustrated tonight....

take care and thanks for reading and helping me out.. this forum is awesome!

-V


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



Celiac.com Sponsor (A8-M):



lizard00 Enthusiast

It takes me at least a week to get over being glutened. It's very frustrating how long the effects take to wear off in some of us. Hang in there, hopefully it will pass soon.

Here's some information regarding the testing. Your IgA number is a total number, which just shows that you create a normal amount of IgA antibodies. IgA is a part of our immune system that helps fight off colds, viruses, etc, but is also created abundantly in the small intestine. Which is why it plays an important part in celiac. They test the whole number to make sure you are not deficient, since the majority of the celiac panel is based on IgA.

(* I added the red to highlight the answer to your question)

Hope it helps!

Table 1: Serologic tests for celiac disease--pitfalls

Serology

Comment

AGA

Relatively non-specific

Anti-EMA

Highest overall sensitivity and specificity, but poor sensitivity in patients with partial villous atrophy

Anti-tTG

Sensitivity and specificity not equivalent to anti-endomysial antibody, Less sensitive in partial villous atrophy

Total IgA

Screens for IgA deficiency. Often present if IgA deficient and one of the following present: IgG AGA, IgG anti-endomysial antibody, IgG anti-tTG.

Open Original Shared Link

Lori T. Newbie
Hey all.

Well, I had an accident where I ate gluten last Sunday. Now it's over a week later, and I still have that old burning sensation in my upper abdomen - just like before.

I have been totally gluten-free. Since I got the call from my gastro telling me that I had this, I went off gluten, except for my mistake last week....

I was looking at my blood work - and I was diagnosed due to a high anti endomysial level. However, my IGA level was normal... I had the biopsy done 5 weeks after going gluten free - and of course, the biopsy was normal. I did the biopsy just to see what damage was done, and it was good to know that things look good in there. :)

Anyway, here's what I'm driving at....

Do you think a high anti endomysial level is the most accurate diagnostic test?

Why is my IGA level 133 - when the normal range is 75 - 310?

What else could be causing this PAIN?? I'm beginning to think maybe I have cancer.. I know that sounds terrible, but why all of this pain for no reason? UGH! Shoot me now!

I have not strayed and I will not stray. I am a gluten free girl, just frustrated tonight....

take care and thanks for reading and helping me out.. this forum is awesome!

-V

left a post for someone else with this advice too: get checked for liver issues and if you still have your gallbladder, that too. I do not have mine and have just found a site that helped with the pain I was having.Thought I had been glutened but it did not go away. You need a specific diet for this area of digestion. Check out the site: gallbladderattack.com. Good info that may apply to you. I think for me, I ate something that triggered the response that had gluten. But, a glutening alone will set me up for at least a weeks worth of agony regardless. It sucks I know. Going on a very light, almost clear liquid diet for a day or so speeds things up for me. Lots of water helps to move whatever I ingested out. Hope you feel better soon. Take care.

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. - trents replied to Atl222's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Increased intraepithelial lymphocytes after 10 yrs gluten-free

    2. - cristiana replied to Atl222's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Increased intraepithelial lymphocytes after 10 yrs gluten-free

    3. 0

      Celiac Friendly Sports Camps - Academy Camps - Virtual Open House

    4. - lizzie42 posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      0

      Low iron and vitamin d

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

    • Total Members
      133,219
    • Most Online (within 30 mins)
      7,748

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

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • cristiana
    • trents
      Cristiana, that sounds like a great approach and I will be looking forward to the results. I am in the same boat as you. I don't experience overt symptoms with minor, cross contamination level exposures so I sometimes will indulge in those "processed on equipment that also processes wheat . . ." or items that don't specifically claim to be gluten free but do not list gluten containing grains in their ingredient list. But I always wonder if I am still experiencing sub acute inflammatory reactions. I haven't had any celiac antibody blood work done since my diagnosis almost 25 years ago so I don't really have any data to go by.   
    • cristiana
      I've been reflecting on this further. The lowest TTG I've ever managed was 4.5 (normal lab reading under 10).  Since then it has gone up to 10.   I am not happy with that.  I can only explain this by the fact that I am eating out more these days and that's where I'm being 'glutened', but such small amounts that I only occasionally react. I know some of it is also to do with eating products labelled 'may contain gluten' by mistake - which in the UK means it probably does! It stands to reason that as I am a coeliac any trace of gluten will cause a response in the gut.  My villi are healed and look healthy, but those lymphocytes are present because of the occasional trace amounts of gluten sneaking into my diet.   I am going to try not to eat out now until my next blood test in the autumn and read labels properly to avoid the may contain gluten products, and will then report back to see if it has helped!
    • lizzie42
      Hi, I posted before about my son's legs shaking after gluten. I did end up starting him on vit b and happily he actually started sleeping better and longer.  Back to my 4 year old. She had gone back to meltdowns, early wakes, and exhaustion. We tested everything again and her ferritin was lowish again (16) and vit d was low. After a couple weeks on supplements she is cheerful, sleeping better and looks better. The red rimmed eyes and dark circles are much better.   AND her Ttg was a 3!!!!!! So, we are crushing the gluten-free diet which is great. But WHY are her iron and vit d low if she's not getting any gluten????  She's on 30mg of iron per day and also a multivitamin and vit d supplement (per her dr). That helped her feel better quickly. But will she need supplements her whole life?? Or is there some other reason she's not absorbing iron? We eat very healthy with minimal processed food. Beef maybe 1x per week but plenty of other protein including eggs daily.  She also says her tummy hurts every single morning. That was before the iron (do not likely a side effect). Is that common with celiac? 
    • Scott Adams
      Celiac disease is the most likely cause, but here are articles about the other possible causes:    
×
×
  • 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.