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. - trents replied to Sarah Grace's topic in Related Issues & Disorders
      26

      Headaches / Migraines and Hypoglycaemia

    2. - knitty kitty replied to Sarah Grace's topic in Related Issues & Disorders
      26

      Headaches / Migraines and Hypoglycaemia

    3. - trents replied to Sarah Grace's topic in Related Issues & Disorders
      26

      Headaches / Migraines and Hypoglycaemia

    4. - Scott Adams replied to Russ H's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      KAN-101 Treatment for Coeliac Disease

    5. - Scott Adams replied to miguel54b's topic in Related Issues & Disorders
      1

      Body dysmorphia experience


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,155
    • Most Online (within 30 mins)
      7,748

    lfedas
    Newest Member
    lfedas
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      This article does not address migraines at all.  Yes, red wine and sulfites are often mentioned in connection with migraine triggers. With me, any kind of alcoholic beverage in very modest amounts will reliably produce a migraine. Nitrous oxide generators, which are vaso dialators, also will give me migraines reliably. So, I think most of my migraines are tied to fluctuations vascular tension and blood flow to the brain. That's why the sumatriptan works so well. It is a vaso constrictor. 
    • knitty kitty
      Excessive dietary tyrosine can cause problems.  Everything in moderation.   Sulfites can also trigger migraines. Sulfites are found in fermented, pickled and aged foods, like cheese.  Sulfites cause a high histamine release.  High histamine levels are found in migraine.  Following a low histamine diet like the low histamine Autoimmune Protocol diet, a Paleo diet, helps immensely.    Sulfites and other migraine trigger foods can cause changes in the gut microbiome.  These bad bacteria can increase the incidence of migraines, increasing histamine and inflammation leading to increased gut permeability (leaky gut), SIBO, and higher systemic inflammation.   A Ketogenic diet can reduce the incidence of migraine.  A Paleo diet like the AIP diet, that restricts carbohydrates (like from starchy vegetables) becomes a ketogenic diet.  This diet also changes the microbiome, eliminating the bad bacteria and SIBO that cause an increase in histamine, inflammation and migraine.  Fewer bad bacteria reduces inflammation, lowers migraine frequency, and improves leaky gut. Since I started following the low histamine ketogenic AIP paleo diet, I rarely get migraine.  Yes, I do eat carbs occasionally now, rice or potato, but still no migraines.  Feed your body right, feed your intestinal bacteria right, you'll feel better.  Good intestinal bacteria actually make your mental health better, too.  I had to decide to change my diet drastically in order to feel better all the time, not just to satisfy my taste buds.  I chose to eat so I would feel better all the time.  I do like dark chocolate (a migraine trigger), but now I can indulge occasionally without a migraine after.   Microbiota alterations are related to migraine food triggers and inflammatory markers in chronic migraine patients with medication overuse headache https://pmc.ncbi.nlm.nih.gov/articles/PMC11546420/  
    • trents
      Then we would need to cut out all meat and fish as they are richer sources of tyrosine than nuts and cheese. Something else about certain tyrosine rich foods must be the actual culprit. 
    • Scott Adams
      I agree that KAN-101 looks promising, and hope the fast track is approved. From our article below: "KAN-101 shows promise as an immune tolerance therapy aiming to retrain the immune system, potentially allowing safe gluten exposure in the future, but more clinical data is needed to confirm long-term effects."  
    • Scott Adams
      Thank you so much for having the courage to share this incredibly vivid and personal experience; it's a powerful reminder of how physical ailments can disrupt our fundamental sense of self. What you're describing sounds less like a purely psychological body dysmorphia and more like a distinct neurological event, likely triggered by the immense physical stress and inflammation that uncontrolled celiac disease can inflict on the entire body, including the nervous system. It makes complete sense that the specific sensory input—the pressure points of your elbows on your knees—created a temporary, distorted body map in your brain, and the fact that it ceased once you adopted a gluten-free diet is a crucial detail. Your intuition to document this is absolutely right; it's not "crazy" but rather a significant anecdotal data point that underscores the mysterious and far-reaching ways gluten can affect individuals. Your theory about sensory triggers from the feet for others is also a thoughtful insight, and sharing this story could indeed be validating for others who have had similar, unexplainable sensory disturbances, helping them feel less alone in their journey.
×
×
  • 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.