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

New to site...having suspicious symptoms..HELP!


clutchlee

Recommended Posts

clutchlee Rookie

Have had long standing fatigue and occasional headaches, and insomnia.  More recently, after starting to digest meals, I have a burning sensation of mouth, lips, and throat.  Blurry vision comes along as the burning mouth occurs.  Some abdominal gas and soft stools.  Feel pretty "lousy" all day as this is happening.  Primary docs don't have a clue.  Routine labs normal.

Anyone...can you share what you think, make recommendations for testing, have similar experiences?

Thanks so much for anything.....I'm getting desperate.

clutchlee


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



Celiac.com Sponsor (A8-M):



GFinDC Veteran

Hi clutchlee,

The burning sensation could be GERD (acid reflux) or esonopilic esophagitis, or maybe gastritis.  All of those can be related to celiac disease symptoms also.  Fatigue is a common problem with celiac as it impairs the gut's ability to absorb nutrients

You can ask for a celiac blood test to be done.  You should keep eating at least some gluten every day until all the testing is done though.  The usual testing is blood tests for immune system antibodies to gliaden a protein in wheat.  Then an endoscopy to check for celiac type damage to the villi lining of the small intestine.  They should take 4 to 6 biopsy samples for review.

There are some getting started tips in the Newbie 101 thread in the Coping With subsection.

Welcome to the forum! :)

cyclinglady Grand Master

I will just add a link to the University of Chicago's celiac website which is, in my opinion, one of the better sites for explaining all things celiac:

Open Original Shared Link

I hope you find relief soon!  

Lochella Newbie

I was told my levels were high at 250, is that super high??

Lo

Jmg Mentor
5 hours ago, Lochella said:

I was told my levels were high at 250, is that super high??

Lo

Hi lo and welcome?

You may be better off starting a new topic and including any further info you have. For example, a test result will usually come with range info, this shows what the normal range is and helps you work out what your score means. It should also say which marker is being tested...

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,743
    • Most Online (within 30 mins)
      7,748

    MistyMoon
    Newest Member
    MistyMoon
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):




  • Who's Online (See full list)

    • There are no registered users currently online

  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Theresa2407
      Maybe you have a low  intolerance to Wheat.   Rye, Barley and Malt are the gluten in Celiac disease.  It has always been stated Wheat and Gluten, not just a Wheat intolerance.  Barley will keep me in bed for (2) weeks.  Gut, Migrains, Brain fog, Diahrea.  It is miserable.  And when I was a toddler the doctor would give me a malt medicine because I always had Anemia and did not grow.  Boy was he off.  But at that time the US didn't know anyone about Celiac.  This was the 1940s and 50s.  I had my first episode at 9 months and did not get a diagnosis until I was 50.  My immune system was so shot before being diagnoised, so now I live with the consequences of it. I was so upset when Manufacturers didn't want to label their products so they added barley to the product.  It was mostly the cereal industry.  3 of my favorite cereals were excluded because of this. Malt gives me a bad Gut reaction.
    • Gigi2025
      Thanks much Scott.  Well said, and heeded.   I don't have Celiac, which is fortunate.
    • Scott Adams
      Do you have the results of your endoscopy? Did you do a celiac disease blood panel before that?  Here is more info about how to do a gluten challenge for a celiac disease blood panel, or for an endoscopy: and this recent study recommends 4-6 slices of wheat bread per day:    
    • Scott Adams
      It is odd that your Tissue Transglutaminase (TTG) IgA level has bounced from the "inconclusive" range (7.9, 9.8) down to a negative level (5.3), only to climb back up near the positive threshold. This inconsistency, coupled with your ongoing symptoms of malabsorption and specific nutrient deficiencies, is a strong clinical indicator that warrants a more thorough investigation than a simple "satisfactory" sign-off. A negative blood test does not definitively rule out celiac disease, especially with such variable numbers and a classic symptomatic picture. You are absolutely right to seek a second opinion and push for a referral to a gastroenterologist. A biopsy remains the gold standard for a reason, and advocating for one is the most direct path to getting the answers you need to finally address the root cause of your suffering. Here is more info about how to do a gluten challenge for a celiac disease blood panel, or for an endoscopy: and this recent study recommends 4-6 slices of wheat bread per day:    
    • Scott Adams
      There is a distinction between gluten itself and the other chemicals and processing methods involved in modern food production. Your experience in Italy and Greece, contrasted with your reactions in the U.S., provides powerful anecdotal evidence that the problem, for some people, may not be the wheat, but the additives like potassium bromate and the industrial processing it undergoes here. The point about bromines displacing iodine and disrupting thyroid function is a significant one, explaining a potential biological mechanism for why such additives could cause systemic health issues that mimic gluten sensitivity. It's both alarming and insightful to consider that the very "watchdog" agencies meant to protect us are allowing practices banned in many other developed countries. Seeking out European flour and your caution about the high-carb, potentially diabeticgenic nature of many gluten-free products are excellent practical takeaways from your research, but I just want to mention--if you have celiac disease you need to avoid all wheat, including all wheat and gluten in Europe.
×
×
  • 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.