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

So Frustrated! What Would You Do?

Ox on the Roof

Recommended Posts

plumbago Experienced
plumbago
Posted

If you do decide to one day do another endoscopy to find out whether or not you have Celiac disease, of course you probably know that if you are not eating gluten, then in all likelihood you will not get an accurate reading.

Also, make sure your multivitamin does not contain gluten.

Good luck.

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

Celiac.com Sponsor (A8-M):


T.H. Community Regular
T.H.
Posted

Also, as something to help stay gluten free? You could put the kids gluten free, too.

Actually, if you end up positive, you should probably look into getting them tested for celiac disease, and considering your own experience, putting them on a gluten-free diet for a bit if the test is negative and then have a gluten challenge after a few months.

Reason I say this is that of relative 1 degree separated from a celiac, 1 in 22 are celiac as well. When I was diagnosed, we tested my family, and one kid was positive - no symptoms I knew of - and one was negative but symptoms improved significantly on a gluten-free diet, so now the whole house is gluten-free. :-)

Also, if you have any girls, they should probably get tested before trying to get pregnant when they are older, too, just in case, as many celiacs are now asymptomatic, but it can cause miscarriages if undiagnosed during pregnancy. :-(

SGWhiskers Collaborator
SGWhiskers
Posted

I love all the advice you have gotten from everyone here. I'll second or third the gluten free kids idea. I had a hard time recovering until hubby went gluten free. My nieces get me sick a few times a year from hugs, cheek to cheek kisses, and playing. I suspect it is the gluten fingers run through the hair and the occassional accidental hand bumping my mouth that gets me. Maybe at least get them gluten light. Gluten free for most of the day, but maybe a snack right before bath time if you feel they must have Oreo's to not feel deprived.

My second comment is about a friend of mine who developed a mystery illness a year or so ago. I knew her family had a history of autoimmune diseases and I begged her to get celiac testing. It was negative, but she was eventually diagnosed with Rhumatoid Arthritis although I don't know if it was via symptoms or blood testing. Her doctor is a bit unusual in that he skips a lot of testing and goes straight to lifestyle changes that help the majority of his patients. He is published, so hopefully others will follow with the lifestyle changes he recommens. He placed her on a Paleo diet which is like gluten free, but restricts more grains/starches. 6 months later, she is feeling great, knows that the slightest gluten is poison for her, and the doctor has declared her RA in remission. He says she will need to continue the paleo diet for another 6 months and then slowly reintroduce one starch at a time until she is on a gluten/casin free diet for life. My point is that even if it isn't celiac via blood work, you may find relief from another autoimmune disease or gluten intolerance through a gluten free or paleo diet.

Good luck on your journey toward a diagnosis.

Archived

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

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


  • Member Statistics

    • Total Members
      131,683
    • Most Online (within 30 mins)
      7,748
    Jean Tonkin
    Newest Member
    Jean Tonkin
    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.