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

Help!

mkp

Recommended Posts

mkp Newbie
mkp
Posted

I suspected that I had celiac due to multiple bowel and malabsorption issues, but after a negative blood test and endoscope, I thought it would still be worth a try to go gluten free to see if it made any difference in the way I felt. Now, two months in, I feel MUCH better and everyone around me notices the changes. I also find myself getting glutened, if that's even possible. My biggest question is, could I just have a wheat allergy and not a gluten allergy or undetected celiac? I have read a lot about wheat allergy vs. gluten intolerance, but I haven't been able to find anything that talks about someone suddenly developing all of these reactions to the cause after they have eliminated it from their diet. My doctor still thinks that I could possibly have celiac, but who knows! Any help/advice would be great! Thanks!

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

Celiac.com Sponsor (A8-M):


mushroom Proficient
mushroom
Posted

One possible test would be to make an otherwise gluten-free soup and add barley to it. See what happens. If you react to barley you know it's not just the wheat. Just a thought.

GottaSki Mentor
GottaSki
Posted

I am newly diagnosed...my blood tests were very low positive for celiac and my biopsy was obvious celiac confirmed by biopsy in three spots. I asked my doc why my tTG IgA would be only slightly elevated since it is clear that I indeed have celiac. He is a celiac specialist and says they just don't know. Celiacs can have high blood numbers and nothing determined in biopsy, low or no blood numbers and heavy celiac damage to the small intestine. Celiacs can have symptoms or be symptom free -- it seems that research is ramping up in these areas and can only prove helpful to everyone -- whether wheat intolerant or celiac.

Hang in there...I like the idea of adding barley to something to test if it is just wheat.

Gfresh404 Enthusiast
Gfresh404
Posted

I know they sell wheat free bars at Whole Foods that contain other high gluten grains, you could also try that.

I was the same way, started thinking it was just wheat but then realized how much better I felt after not having any gluten whatsoever. I have a feeling you'll come to the same conclusion.. but you never know.

mkp Newbie
mkp
Posted
  • Author

Thanks so much, everyone! I am going to try eating barley to see what kind of reaction I have and continue to be gluten free until I get this figured out!

Archived

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

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


  • Member Statistics

    • Total Members
      131,742
    • 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
      How Come Gluten Didnt Bother Me In Italy

      By Theresa2407 · Posted

      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
      How Come Gluten Didnt Bother Me In Italy

      By Gigi2025 · Posted

      Thanks much Scott.  Well said, and heeded.   I don't have Celiac, which is fortunate.
    • Scott Adams
      Possible celiac - need advice

      By Scott Adams · Posted

      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
      Celiac or not??

      By Scott Adams · Posted

      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
      How Come Gluten Didnt Bother Me In Italy

      By Scott Adams · Posted

      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.