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

Had My Endoscopy - Do I Try Going Gluten Free?


MyHandful

Recommended Posts

MyHandful Newbie

I just had an endoscopy done last Monday and I will have the results early next week. The GI doctor said everything looked normal and he is fully expecting the biopsy to come back negative (I only tested positive on a IGA anti gliadin test and have more constipation than diarrhea issues). He did tell me I could try going gluten free for 3 to 4 weeks to see if I feel better and if I don't than I know it's probably not the gluten.

Do you think it's worth it to try going gluten free? I have 5 kids so it would be a lot of work to go gluten free and change all our meals even for a month. I make 100% whole wheat bread all the time from grinding my own flour. So it would be a huge adjustment, but on the other hand I feel horrible right now. I have nerve, muscle, and joint pain and horrible fatigue. I have stomach cramps all the time.

Could my symptoms be caused by just a gluten intolerance and not celiac disease? I think it would be easier to give the gluten free diet a try if I thought it was at least a possibility.

Thanks!


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



Celiac.com Sponsor (A8-M):



leadmeastray88 Contributor
I just had an endoscopy done last Monday and I will have the results early next week. The GI doctor said everything looked normal and he is fully expecting the biopsy to come back negative (I only tested positive on a IGA anti gliadin test and have more constipation than diarrhea issues). He did tell me I could try going gluten free for 3 to 4 weeks to see if I feel better and if I don't than I know it's probably not the gluten.

Do you think it's worth it to try going gluten free? I have 5 kids so it would be a lot of work to go gluten free and change all our meals even for a month. I make 100% whole wheat bread all the time from grinding my own flour. So it would be a huge adjustment, but on the other hand I feel horrible right now. I have nerve, muscle, and joint pain and horrible fatigue. I have stomach cramps all the time.

Could my symptoms be caused by just a gluten intolerance and not celiac disease? I think it would be easier to give the gluten free diet a try if I thought it was at least a possibility.

Thanks!

You had positive bloodwork - which is rarely false (when positive)

So whether your biopsy comes back negative or positive you should definitely go gluten free for atleast a month and see if your symptoms resolve.

I had the exact same symptoms as you - and all resolved on the diet.. :)

happygirl Collaborator

If you think trying the diet is worth the inconvenience of a few weeks, then yes, try it. What will hurt to try it? If its not the answer - then you keep pursuing other routes and go back to eating gluten. If it is the solution - then you have an answer!

Sometimes its better to know than to not know.

ravenwoodglass Mentor

There are false negatives even with the biopsy for many different reasons. Yes you need to get on the diet and give it at least a couple of months. If you were positive on blood tests chances are extremely good that you need the diet. It is not as hard as doctors seem to think it is and you have come to a great place for info on it. The change in the way you feel will make the inconvience well worth it. Don't let celiac take away your children's childhood. They need a healthy parent who is able to go for walks, play with them at the playground, go to movies and sporting events, go to school functions and just to be painfree. Celiac didn't just effect me, it also strongly effected my children and my ability to be a good Mom. It also lead to my kids living with the constant fear that their mother was dieing. That fear got so bad that my DD at age 14 told me that the family would understand if I committed suicide. No child should have to grow up like that. In additon if the diet helps you make sure that you get your children tested at the first sign of issues they may have. Mine also showed positive on testing but the doctors only tested after I was diagnosed. Before that we were told that my kids issues were from everything from not wanting to go to school to being depressed to the typical IBS diagnosis. After their diagnosis they became kids who almost never missed school and grades went from average to excellent earning them both scholarships. The DD I mentioned has done so well that she completed 2 bachlors degrees, one a five year degree she completed in 3 years and the second in nursing less than 2 years after the first. It is hard to adjust at first to the diet, especially since we are so sick but it does get easier in time.

Archived

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


  • 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):




  • Who's Online (See full list)

    • There are no registered users currently online

  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scott Adams
      I'd go with a vodka tonic, but that's just me😉
    • Rejoicephd
      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
      Thank you for the information ill will definitely bring it into practice .
    • Scott Adams
      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
      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.