Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • 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
Tasha2004
Posted

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
Dwight Senne
Posted

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
Tasha2004
Posted
  • Author

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
Nin
Posted

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
Tasha2004
Posted
  • Author

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.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,345
    • Most Online (within 30 mins)
      7,748
    Louise Sullivan
    Newest Member
    Louise Sullivan
    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

    • trents
      Gluten exposure when trying to conceive

      By trents · Posted

      My reaction to a gluten bolus exposure is similar to yours, with 2-3 hours of severe abdominal cramps and intractable emesis followed by several hours of diarrhea. I don't necessarily equate that one large exposure to gluten with significant intestinal lining damage, however. I think it's just a violent reaction to a what the body perceives to be a somewhat toxic substance that I am no longer tolerant of because I have quit exposing myself to it regularly. It's just the body purging itself of it rather than an expression of significant damage. Before diagnosis, when I was consuming gluten daily, I had little to no GI distress. I was, for the most part, a "silent celiac". The damage to my small bowel lining didn't happen all at once but was slow and insidious, accumulating over a period of years. The last time I got a big shot of gluten was about three years ago when I got my wife's wheat biscuits mixed up with my gluten-free ones. There was this acute reaction after about two hours of ingestion as I described above. I felt washed out for a few days and fully recovered within a week or so.  Now, I'm a 74-year-old male. So, I'm not worried about being pregnant. And I don't want to contradict your physicians advice. But I just don't think you have done significant damage to your small bowel lining by one episode of significant gluten ingestion. I just don't think it works that way.
    • Skydawg
      Gluten exposure when trying to conceive

      By Skydawg · Posted

      Wondering about some thoughts on how long to wait to try to get pregnant after a gluten exposure?  I have been diagnosed for 10 years and have followed the diet strictly. I have been cross contaminated before, but have never had a full on gluten exposure. I went to a restaurant recently, and the waiter messed up and gave me regular bread and told me it was gluten free. 2 hours later I was throwing up for the whole evening. I have never had that kind of reaction before as I have never had such a big exposure. My husband and I were planning to start trying to get pregnant this month. My dr did blood work to check for electrolytes and white blood cells, but did not do a full nutritional panel. Most of my GI symptoms have resolved in the past 2 weeks, but I am definitely still dealing with brain fog, fatigue and headaches. My dr has recommended I wait 3 months before I start to try to get pregnant.   I have read else where about how long it can take for the intestine to fully heal, and the impacts gluten exposure can have on pregnancy. I guess I am really wondering if anyone has had a similar experience? How long does it take to heal after 1 exposure like that, after following the diet so well for 10 years? Is 3 months an okay amount of time to wait? Is there anything I can do in the meantime to reduce my symptoms? 
    • ShadowLoom
      Gluten Free Cannabis Edibles

      By ShadowLoom · Posted

      I’ve used tinctures and made my own edibles with gluten-free ingredients to stay safe. Dispensary staff don’t always know about gluten, so I double-check labels or just make my own.
    • Scott Adams
      Damage after 13 years gluten free

      By Scott Adams · Posted

      It's great to hear that there are some good doctors out there, and this is an example of why having a formal diagnosis can definitely be helpful.
    • RMJ
      Damage after 13 years gluten free

      By RMJ · Posted

      Update: I have a wonderful new gastroenterologist. She wants to be sure there’s nothing more serious, like refractory celiac, going on. She ordered various tests including some micronutrient tests that no one has ever ordered before.  I’m deficient in folate and zinc and starting supplements for both. I’m so glad I decided to go to a new GI!
×
×
  • Create New...