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

Finally Going To The Doctor


JBaby

Recommended Posts

JBaby Enthusiast

Learned about gluten/celiac by accident late april. Researched it, did some food experiements, longest exp lasting 3 weeks and I felt phenominal. Like a new person. Been having difficult time staying on the diet. I saw doc for almost 2 years for all the symtoms that gluten and celiac give a person but these 2 possibilities never came up. I am finally going back with info and proof: what happens when i eat ceratin foods. Like tonight I had 2 slices of pizza hut supreme pizza. Was gluten free for last 3 days. well I felt it within a half hour. Still do and its been an hour and a half. Couldnt breathe. Felt like i was being squeezed. Had to take off my bra, there was that much pressure. Still feel that pressure in chest. brain fog and sooooo tired. I was bouncing like tigger when i cme home from work. I dont want to wste my time at docs on tuesday. I need to be clear with her. I dont have insurance so testing is out unless it is free. Not sure what I am sking you all. I just need to get on a plan and stay on it. This yo yo thing is not good for me. Thanks....Now I am itching!!!! Everywhere. Ugh!!!!!!

JBaby


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



Celiac.com Sponsor (A8-M):



runningcrazy Contributor
Learned about gluten/celiac by accident late april. Researched it, did some food experiements, longest exp lasting 3 weeks and I felt phenominal. Like a new person. Been having difficult time staying on the diet. I saw doc for almost 2 years for all the symtoms that gluten and celiac give a person but these 2 possibilities never came up. I am finally going back with info and proof: what happens when i eat ceratin foods. Like tonight I had 2 slices of pizza hut supreme pizza. Was gluten free for last 3 days. well I felt it within a half hour. Still do and its been an hour and a half. Couldnt breathe. Felt like i was being squeezed. Had to take off my bra, there was that much pressure. Still feel that pressure in chest. brain fog and sooooo tired. I was bouncing like tigger when i cme home from work. I dont want to wste my time at docs on tuesday. I need to be clear with her. I dont have insurance so testing is out unless it is free. Not sure what I am sking you all. I just need to get on a plan and stay on it. This yo yo thing is not good for me. Thanks....Now I am itching!!!! Everywhere. Ugh!!!!!!

JBaby

Diagnosed or not it sounds like the gluten free diet is the way to go for you. It is not worth the pain of waitin for a diagnosis when you have been proved thru the way to feel.

Hope that helps~

JBaby Enthusiast

I agree but for some reason I just need formality. It is apparent. I looked up the pizza dough i had tonight and it containd wheat and now I am having my own itch fest. My wonderful and amazing man left to get me some benadryl to stop the itching.

The Fluffy Assassin Enthusiast
... I dont have insurance so testing is out unless it is free. ...

JBaby

There are doctors who will diagnose you based on your response to the diet, but not many. Before you go, you need to call and find out if she's one of them. Because if she isn't and you can't pay for the testing (blood tests and endoscopy, and you have to keep eating gluten for weeks on end for both), I don't see any point in keeping the appointment. You can post on the Doctors forum on this board to try to find a doctor near you who will give you a diagnosis based on dietary response. But again, unless you know that the doctor you're seeing Tuesday will do so, you'd just be wasting time and money.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,685
    • Most Online (within 30 mins)
      7,748

    tdouglas2901
    Newest Member
    tdouglas2901
    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
      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.