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

cindylou7

Recommended Posts

cindylou7 Apprentice

I've read the posts of celiacs and other gluten sensitive souls and always thought everyone had it so much worse than I could imagine. I kind of had a "there but for the grace of God" attitude about the multitude of food issues many celiacs face. But I've come to realize that once you have some serious GI issues they don't just go away...sometimes they get worse!

I've been Gluten Free faithfully for quite some time and I am now finding other reactions and beginning a food diary/elimination diet to track it. So far the dairy sensitivity has worsened and I have been experiencing a reaction to soy too. I've also been having heart palpitations and shortness of breath (saw a cardiologist who assured me I was fine other than trivial valve regurgitation). Oh, and diverticulitis issues too, I'm beginning to believe all of my issues are just food related.

I have a new mantra...

I AM NOT CRAZY, OR DEPRESSED, OR A HYPOCHONDRIAC, I JUST HAVE FOOD ISSUES!


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



Celiac.com Sponsor (A8-M):



nvsmom Community Regular

(Hashimoto's) Thyroiditis can cause some of the symptoms you listed as your hormones swing from hyper to hypothyroidism. It could be worth checking out...beyond the food issues. :);)

Best wishes.

cindylou7 Apprentice

(Hashimoto's) Thyroiditis can cause some of the symptoms you listed as your hormones swing from hyper to hypothyroidism. It could be worth checking out...beyond the food issues. :);)

Best wishes.

Thanks, I've had my thyroid checked and it was good, I've wondered about sjogren's because I've also been having swallowing, choking issues, but that could also be due to GERD...oh well...

beachbirdie Contributor

Thanks, I've had my thyroid checked and it was good, I've wondered about sjogren's because I've also been having swallowing, choking issues, but that could also be due to GERD...oh well...

Forgive me for pushing this, but which thyroid tests did they do? Did you see the results?

Doctors often say they have checked the thyroid, but that usually means they tested TSH. If TSH is "normal" they don't look any further. Please, do check with your doc and find out if they ran Free T3, Free T4, and thyroid antibodies (anti-thyroglobulin known as TgAb and anti thyroid peroxidase, known as anti-TPO). You cannot know if you have autoimmune thyroid without those antibody tests, and autoimmune thyroid can definitely cause your symptoms.

As for the diverticulites, I've had two bouts with that. I'm finding that the soy-free, starch-free paleo/primal plan (with SCD variation so I can eat home-made yogurt!) is making a huge difference. I do not have abdominal issues as long as I stick to the plan.

nvsmom Community Regular

Forgive me for pushing this, but which thyroid tests did they do? Did you see the results?

Doctors often say they have checked the thyroid, but that usually means they tested TSH. If TSH is "normal" they don't look any further. Please, do check with your doc and find out if they ran Free T3, Free T4, and thyroid antibodies (anti-thyroglobulin known as TgAb and anti thyroid peroxidase, known as anti-TPO). You cannot know if you have autoimmune thyroid without those antibody tests, and autoimmune thyroid can definitely cause your symptoms.

Beachbirdie is completely correct. I am almost positive that I've had thyroid issues for 15 years but the doctors would just check my TSH, which was a high normal or just above the range, and tell me I was normal.... I accepted that and didn't ask to see the specific lab results; that was a HUGE mistake on my part. My doctor finally "found" a thyroid problem when my TSH was triple the normal range, but my symptoms hadn't changed one iota from when my TSH was in the normal range... he would call it a coincidence. Sheesh. :rolleyes:

Those Free T4 and T3 labs should be in the upper half of the normal range, at about 65-80% of normal, so if the lab range was 0-10, you would ideally want to be at a 7. When my TSH was high, my Free T4 was at 10%, or in the above example it would have been a one... and I didn't feel very good.

Best wishes with it all. :)

cindylou7 Apprentice

Beachbirdie is completely correct. I am almost positive that I've had thyroid issues for 15 years but the doctors would just check my TSH, which was a high normal or just above the range, and tell me I was normal.... I accepted that and didn't ask to see the specific lab results; that was a HUGE mistake on my part. My doctor finally "found" a thyroid problem when my TSH was triple the normal range, but my symptoms hadn't changed one iota from when my TSH was in the normal range... he would call it a coincidence. Sheesh. :rolleyes:

Those Free T4 and T3 labs should be in the upper half of the normal range, at about 65-80% of normal, so if the lab range was 0-10, you would ideally want to be at a 7. When my TSH was high, my Free T4 was at 10%, or in the above example it would have been a one... and I didn't feel very good.

Best wishes with it all. :)

Sorry i took a break from the forum for a bit...

My TSH was 2.28 and my Free T4 was .91

I spent a few days compiling all of my symptoms, organizing the patterns of highs and lows and went to the doc armed with my own "research". I figured that there had to be a reason for all of the things happening to me. They weren't just digestive but arthritic too and then there were the heart palps. He's running an ANA, RA, and Lupus panel as well as checking SED rate and another CBC.

nvsmom Community Regular

Do you know your lab's ranges? A TSH of 2.28 is in the middle of my lab's range (0.2-6.0) but is on the high end if the range is 0.2-2.5... The ranges make a difference.

That's good the doctor is looking into rheumatic diseases too. Good luck with the tests.


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



Celiac.com Sponsor (A8-M):



cindylou7 Apprentice

I don't know the ranges. It starts at .45 but the page cut off the end range. It didn't have a flag on it.

Thanks!

beachbirdie Contributor

Sorry i took a break from the forum for a bit...

My TSH was 2.28 and my Free T4 was .91

I spent a few days compiling all of my symptoms, organizing the patterns of highs and lows and went to the doc armed with my own "research". I figured that there had to be a reason for all of the things happening to me. They weren't just digestive but arthritic too and then there were the heart palps. He's running an ANA, RA, and Lupus panel as well as checking SED rate and another CBC.

Ask them to test your Free T3. If your lab uses ranges like my lab, your Free T4 is on the lowish end. I can't function if my TSH is as high as yours though your mileage may vary. I'd be really suspicious of early hypothyroid here. Endocrinologists are increasingly accepting of new TSH recommendations which say 2.5 (some say 3.0) is the upper end of the range...with that in mind, you are definitely on your way.

Not to mention that many hypothyroid patients show symptoms long before their labs catch up to them. I had a heck of a time getting my doc to stop looking at me as a potential cardiac patient (palpitations, high blood pressure, high cholesterol, anxiety) and start thinking about thyroid. Turns out most everything that was wrong with me at the time WAS thyroid.

Archived

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


  • 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
      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.