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

Not Diagnosed But.......


Tasha2004

Recommended Posts

Tasha2004 Contributor

Last February my Endo gave me the Celiac blood workup. My Mom has Celiac and my sister and I have diabetes, so there is a good chance of problems in this area as well.

Well, my IgA showed an irregularity (I think it was a 60 and normal was 30). Every other test was totally negative and in fact could not be even conducted. They sent me for a bone scan, which showed very little problem and they also checked for anemia etc. I didnt show any signs or symptoms of anything.

This year I have started to show a slight problem with anemia, though they are not concerned about it. Now the problem with my stomach is a rather constant problem of (what we call on another board "Burbbling.") Bubbles bursting, and some gas but no other problems at all. I know there is a possibility of thyroid problems causing stomach trouble, and I have been treated for Graves disease and am now hypo thyroid. I could easily also have diabetes related stomach damage.

I have no desire to have the old tube down the throat, but my physicians wouldnt mind ordering another blood test. Is this something that might show a change? I assume if everything was still negative, it might mean I had a different sort of problem?

again, I have no symptoms but this bubbling feeling, and it is bothersome but not something that makes you feel sick. I have tried to check what causes it, and am more led to believe it comes from Diet Soda, Onions, Cabbage, and for some reason Instant Oatmeal. I can not tie it in to eating breads of any kind. Last night I intentionally made a meal of stir fried veggies and rice, and today the problem has been just awful. I know there are hidden sources of Gluten though, but it just doesnt seem to be connected to that.

Any thoughts?


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



Celiac.com Sponsor (A8-M):



Dwight Senne Rookie

Hi Tasha,

I don't have a definite yes or no answer, the best I can say is maybe! The only definitive test for Celiac is the endoscopic biopsy (camera down the throat). Even that is not foolproof, as the skill and experience of both the gastroenterologist taking the biopsies and the pathologist examining the biopsy slides are crucial. However, it is much more determinative than the blood tests.

As for your reservations about the endoscopy, fear not! They will give you a mild sedative and you will not remember a thing. Mine was a breeze and I would consent to have another one in a heartbeat!

Unfortunately, there are no hard and fast symptoms of Celiac Disease. That is one of the things that makes this disease so difficult to diagnose. I recommend discussing the possibility of an endoscopy with your gastroenterologist, and if he/she thinks it's warranted (I think it is), get it done!

Tasha2004 Contributor

Thanks, I just went ahead and had the Endo put another blood test on the paperwork so I can see if there is any difference over one year. I figured that was a safe place to start!

Nin Newbie

From all that I have read I t hink you probably are pre-celiac, and you could do a stool test with "enterolab" which is more sensitive than the blood test.

The Italian Doctors who are way ahead have now come up with a test similar to the stool test, they think this is the way of the future because the blood test doesn't pick up everyone.

Good luck!

Tasha2004 Contributor

I know, I read the research on this and I think it would be very beneficial, but I dont have the money to invest in it!

Wonder if they ever do research studies? I would be perfect for it.

And I agree, I think one day I could have Celiac.

Mom didnt get really sick until she was 65, but by then she was pretty miserable.

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. - tiffanygosci replied to tiffanygosci's topic in Introduce Yourself / Share Stuff
      1

      Celiac support is hard to find

    2. - trents replied to mamaof7's topic in Parents, Friends and Loved Ones of Celiacs
      1

      Help understand results

    3. - mamaof7 posted a topic in Parents, Friends and Loved Ones of Celiacs
      1

      Help understand results

    4. - Dizzyma replied to Dizzyma's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      3

      Newly diagnosed mam to coeliac 11 year old

    5. - tiffanygosci posted a topic in Introduce Yourself / Share Stuff
      1

      Celiac support is hard to find

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

    • Total Members
      132,954
    • Most Online (within 30 mins)
      7,748

    Barb E
    Newest Member
    Barb E
    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

    • tiffanygosci
      EDIT: I did find a monthly Zoom meeting for Celiacs through the Celiac Disease Foundation, so I'll be able to talk with some other people on January 15. And I also found a Celiac Living podcast on Spotify made by a celiac. I feel a little bit better now and I am still hoping I will find some more personal connections in my area.
    • trents
      Welcome to the celiac.com community, @mamaof7! It means for the one celiac disease antibody test that was ordered, she tested negative. However, other tests should have been ordered, especially for someone so young who would have an immature immune system where there would be a high probability of being IGA deficient.  The one test that was ordered was an IGA-based antibody test. It is not the only IGA antibody test for celiac disease that can be run. The most common one ordered by physicians is the TTG-IGA. Whenever IGA antibody tests are ordered, a "total IGA" test should be included to check for IGA deficiency. In the case of IGA deficiency, all other IGA tests results will be inaccurate. There is another category of celiac disease antibody tests that can be used in the case of IGA deficiency. They are known as IGG tests. I will attach an article that gives an overview of celiac disease antibody tests. All this to say, I would not trust the results of the testing you have had done and I would not rule out your daughter having celiac disease. I would seek further testing at some point but it would require your daughter to have been eating normal amounts of gluten for weeks/months in order for the testing to be valid. It is also possible she does not have celiac disease (aka, "gluten intolerance") but that she has NCGS (Non Celiac Gluten Sensitivity, or just "gluten sensitivity" for short) which is more common. The difference is that celiac disease is an autoimmune disorder that damages the lining of the small bowel whereas NCGS does not autoimmune in nature and does not damage the lining of the small bowel, though the two conditions share many of the same symptoms. We have testing to diagnose celiac disease but there are no tests for NCGS. To arrive at a diagnosis of NCGS, celiac disease must first be ruled out. A gluten free diet is the solution to both maladies.   
    • mamaof7
      For reference, daughter is 18 mths old. Was having painful severe constipation with pale stool and blood also bloating (tight extended belly.) Liver and gallbladder are normal. Ultrasound was normal. Dr ordered celiac blood test. We took her off gluten after blood draw. She is sleeping better, no longer bloated and stools are still off color but not painful.    "GLIADIN (DEAMID) AB, IGA FLU Value  0.84 Reference Range: 0.00-4.99 No further celiac disease serology testing to be performed. INTERPRETIVE INFORMATION: Deamidated Gliadin Peptide (DGP) Ab, IgA A positive deamidated gliadin (DGP) IgA antibody result is associated with celiac disease but is not to be used as an initial screening test due to its low specificity and only occasional positivity in celiac disease patients who are negative for tissue transglutaminase (tTG) IgA antibody."   Anyone know what in the world this means. She isn't scheduled to see GI until late April. 
    • Dizzyma
      Hi Trent and Cristiana, thank you so much for taking the time out to reply to me.  My daughters GP requested bloods, they came back as showing a possibility of celiac disease, she advised me to continue feeding gluten as normal and wait on a hospital appointment. When we got that the doctor was quite annoyed that the gp hadn’t advised to go gluten free immediately as she explained that her numbers were so high that celiac disease was fairly evident. That doctor advised to switch to a gluten-free diet immediately which we did but she also got her bloods taken again that day as it made sense to double check considering she was maintaining a normal diet and they came back with a result of 128. The hospital doctor was so confident of celiac disease that she didn’t bother with any further testing. Cristiana, thank you for the information on the coeliac UK site however I am in the Rrpublic of Ireland so I’ll have to try to link in with supports there. I appreciate your replies I guess I’ll figure things as we go I just feel so bad for her, her skin is so sore around her mouth  and it looks bad at an age when looks are becoming important. Also her anxiety is affecting her sleep so I may have to look into some kind of therapy to help as I don’t think I am enough to help. thanks once again, it’s great to be able to reach out xx   
    • tiffanygosci
      I have been feeling so lonely in this celiac disease journey (which I've only been on for over 4 months). I have one friend who is celiac, and she has been a great help to me. I got diagnosed at the beginning of October 2025, so I got hit with all the major food holidays. I think I navigated them well, but I did make a couple mistakes along the way regarding CC. I have been Googling "celiac support groups" for the last couple days and there is nothing in the Northern Illinois area. I might reach out to my GI and dietician, who are through NW Medicine, to see if there are any groups near me. I cannot join any social media groups because I deleted my FB and IG last year and I have no desire to have them back (although I almost made a FB because I'm desperate to connect with more celiacs). I'm glad I have this forum. I am praying God will lead me to more people to relate to. In my opinion, celiac disease is like the only food- related autoimmune disease and it's so isolating. Thanks for walking alongside of me! I'm glad I know how to help my body but it's still not easy to deal with.
×
×
  • 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.