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 Yet

Tiffy

Recommended Posts

Tiffy Newbie
Tiffy
Posted

Hi, I just joined this forum because I believe that I have celiac disease/gluten intolerance. I have been on the gluten free diet for more than three months and I cannot even describe the joy I feel because for the first time in my life I am not suffering from stomach pains and other problems. I took a blood test after being on the gluten free diet for three months, but the test results were negative. I was wondering if anyone could tell me if the symptoms that I suffered through before the gluten-free diet sounds like celiac disease/gluten intolerance.

Extreme weight loss

stomach and intestinal pains

bloated stomach almost all the time(would get worse after I ate, esp. if I ate things with wheat)

-one time it was so bad that I could barely breath and I fainted

constipation(this is embarrassing but sometimes I couldn't go for more than a week!)

Rapid heart beat after I ate things with wheat in it

Joint pains

headaches

always feeling tired

lost appetite (but sometimes I would be really hungry, so even after I ate I would still feel hungry)

muscle pains

muscle spasms

There were probably a lot more that I can't think of right now

These are most of the symptoms I had, I feel so much better now. I did on accident have a piece of pasta in a soup at the dining hall at the end of last week. For probably 4 days I felt pretty sick, but I am a lot better now. I feel so happy that I finally found out what was wrong with me for pretty much my whole life. Thank you for taking the time to read this and if anyone could tell me if the symptoms above sound like celiac disease/gluten intolerance that would be great.

-Thank you!

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

Celiac.com Sponsor (A8-M):


Ursa Major Collaborator
Ursa Major
Posted

Hi, and welcome to these boards. Yes, all your symptoms and what you describe sure sounds like classic celiac disease. Of course your blood work was negative after being three months gluten-free. In order to be positive it should have been done before you eliminated gluten from your diet.

Anyway, it is obvious that you are at least gluten intolerant. You feel sick when consuming wheat, and you feel better when you don't.

Do you know that gluten is not just in wheat, but rye and barley as well? You will need to avoid those, too, to really get better.

OnMyWayToPA Newbie
OnMyWayToPA
Posted

I am also new here, for about the same reason. I believe I may have celiac disease, but have not been tested. Doctors keep telling me I have IBS without doing any tests, but I haven't gotten any better. I can't get into a doctor for 5 weeks, and know that I shouldn't start a diet without being tested, but am not sure I can deal with this for much longer as I have progressively gotten much worse. Any suggestions on how to speed this process up? And how I can get back to being my normal, happy self? :)

Tiffy Newbie
Tiffy
Posted
  • Author
Hi, and welcome to these boards. Yes, all your symptoms and what you describe sure sounds like classic celiac disease. Of course your blood work was negative after being three months gluten-free. In order to be positive it should have been done before you eliminated gluten from your diet.

Anyway, it is obvious that you are at least gluten intolerant. You feel sick when consuming wheat, and you feel better when you don't.

Do you know that gluten is not just in wheat, but rye and barley as well? You will need to avoid those, too, to really get better.

Hi, thank you for the response.

GlutenWrangler Contributor
GlutenWrangler
Posted

Tiffy,

It's great that you have had such a dramatic improvement on the gluten-free diet. Don't worry about your negative blood tests. That's to be expected. Your symptoms are just like mine were, classic Celiac Disease. You symptoms and your positive dietary response is a sure sign that you are a Celiac/Gluten Intolerant. Personally, I believe that Gluten Intolerance is just an earlier form of Celiac Disease, but to each his own. Anyway, welcome to the forum!

-Brian

Tiffy Newbie
Tiffy
Posted
  • Author
Tiffy,

It's great that you have had such a dramatic improvement on the gluten-free diet. Don't worry about your negative blood tests. That's to be expected. Your symptoms are just like mine were, classic Celiac Disease. You symptoms and your positive dietary response is a sure sign that you are a Celiac/Gluten Intolerant. Personally, I believe that Gluten Intolerance is just an earlier form of Celiac Disease, but to each his own. Anyway, welcome to the forum!

-Brian

Hi GlutenWrangler, thank you for the response. It is nice that there are others out there who understand and are supportive.

-Tiffy

Tiffy Newbie
Tiffy
Posted
  • Author
I am also new here, for about the same reason. I believe I may have celiac disease, but have not been tested. Doctors keep telling me I have IBS without doing any tests, but I haven't gotten any better. I can't get into a doctor for 5 weeks, and know that I shouldn't start a diet without being tested, but am not sure I can deal with this for much longer as I have progressively gotten much worse. Any suggestions on how to speed this process up? And how I can get back to being my normal, happy self? :)

Hi, I hope that you get better soon. I believe that one of the things that really helped me was eating plain yogurt three times a day. I feel that the probiotics from the yogurt really help not only the stomach and the intestines but also your whole body. The calcium from the yogurt is also essential for not only your bones but also your intestines.

-Tiffy

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

Celiac.com Sponsor (A8-M):


Archived

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

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


  • Member Statistics

    • Total Members
      131,684
    • Most Online (within 30 mins)
      7,748
    Betty Siebert
    Newest Member
    Betty Siebert
    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

    • Scott Adams
      Draft gluten-free ciders… can they be trusted ?

      By Scott Adams · Posted

      I'd go with a vodka tonic, but that's just me😉
    • Rejoicephd
      Draft gluten-free ciders… can they be trusted ?

      By Rejoicephd · Posted

      That and my nutritionist also said that drinking cider is one of the worst drink choices for me, given that I have candida overgrowth.  She said the combination of the alcohol and sugar would be very likely to worsen my candida problem.  She suggested that if I drink, I go for clear vodka, either neat or with a splash of cranberry.   So in summary, I am giving ciders a rest.  Whether it's a gluten risk or sugars and yeast overgrowth, its just not worth it.
    • Inkie
      Tea Bags and Gluten

      By Inkie · Posted

      Thank you for the information ill will definitely bring it into practice .
    • Scott Adams
      Tea Bags and Gluten

      By Scott Adams · Posted

      While plain, pure tea leaves (black, green, or white) are naturally gluten-free, the issue often lies not with the tea itself but with other ingredients or processing. Many flavored teas use barley malt or other gluten-containing grains as a flavoring agent, which would be clearly listed on the ingredient label. Cross-contamination is another possibility, either in the facility where the tea is processed or, surprisingly, from the tea bag material itself—some tea bags are sealed with a wheat-based glue. Furthermore, it's important to consider that your reaction could be to other substances in tea, such as high levels of tannins, which can be hard on the stomach, or to natural histamines or other compounds that can cause a non-celiac immune response. The best way to investigate is to carefully read labels for hidden ingredients, try switching to a certified gluten-free tea brand that uses whole leaf or pyramid-style bags, and see if the reaction persists.
    • Scott Adams
      Inconclusive results

      By Scott Adams · Posted

      This is a challenging and confusing situation. The combination of a positive EMA—which is a highly specific marker rarely yielding false positives—alongside strongly elevated TTG on two separate occasions, years apart, is profoundly suggestive of celiac disease, even in the absence of biopsy damage. This pattern strongly aligns with what is known as "potential celiac disease," where the immune system is clearly activated, but intestinal damage has not yet become visible under the microscope. Your concern about the long-term risk of continued gluten consumption is valid, especially given your family's experience with the consequences of delayed diagnosis. Since your daughter is now at an age where her buy-in is essential for a gluten-free lifestyle, obtaining a definitive answer is crucial for her long-term adherence and health. Given that she is asymptomatic yet serologically positive, a third biopsy now, after a proper 12-week challenge, offers the best chance to capture any microscopic damage that may have developed, providing the concrete evidence needed to justify the dietary change. This isn't about wanting her to have celiac; it's about wanting to prevent the insidious damage that can occur while waiting for symptoms to appear, and ultimately giving her the unambiguous "why" she needs to accept and commit to the necessary treatment. This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease. One test that always needs to be done is the IgA Levels/Deficiency Test (often called "Total IGA") because some people are naturally IGA deficient, and if this is the case, then certain blood tests for celiac disease might be false-negative, and other types of tests need to be done to make an accurate diagnosis. The article includes the "Mayo Clinic Protocol," which is the best overall protocol for results to be ~98% accurate.    
×
×
  • 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.