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

Hypothyroidism Or Super Sensitive Gluten Reaction?

butterfl8

By butterfl8
in Coping with Celiac Disease

Recommended Posts

butterfl8 Rookie
butterfl8
Posted

Okay, enough muddling though on my own--I'm turning to the experts!

So last Monday I went to my friend's house with a great deal of apprehension. I did not eat anything!! But she had made her daughter's birthday cake, and pizza crusts earlier that day, from scratch. So there was most likely flour floating around in the air. I did not spend much time in the kitchen. By the next morning, total blah. Brain fog, sleepy, minimal intestinal involvement, but I could tell I was in trouble. Week goes on, and my muscles are sore, hurting like I want/need a massage, but also feeling as if I will scream if someone touches me. The reason I think of hypothyroidism is because I have been COLD even worse since I was diagnosed in July. I've never had the muscle pain from glutening before, but it also feels like every time is a different response. My thyroid was tested in March, before I got really sick, and was normal then. My doctors seem to think that means everything is fine. Any input? Help?

Thanks in advance!

-Daisy

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

Celiac.com Sponsor (A8-M):


YoloGx Rookie
YoloGx
Posted
Okay, enough muddling though on my own--I'm turning to the experts!

So last Monday I went to my friend's house with a great deal of apprehension. I did not eat anything!! But she had made her daughter's birthday cake, and pizza crusts earlier that day, from scratch. So there was most likely flour floating around in the air. I did not spend much time in the kitchen. By the next morning, total blah. Brain fog, sleepy, minimal intestinal involvement, but I could tell I was in trouble. Week goes on, and my muscles are sore, hurting like I want/need a massage, but also feeling as if I will scream if someone touches me. The reason I think of hypothyroidism is because I have been COLD even worse since I was diagnosed in July. I've never had the muscle pain from glutening before, but it also feels like every time is a different response. My thyroid was tested in March, before I got really sick, and was normal then. My doctors seem to think that means everything is fine. Any input? Help?

Thanks in advance!

-Daisy

Hi Daisy,

I think breathing in gluten dust takes longer to get rid of than eating it. At least it has for me. I am now loathe to do into certain restaurants if you get my drift as well as houses at certain holidays if there is a bunch of home baked goods if they aren't all gluten-free. It took me 3 weeks before I could function last year after Thanksgiving, 5 before I was fully well.

I think exercise and saunas could help when you are up to it. Of course drink massive amounts of water and do all the usual things--enterically coated probiotics, bromelain/papain enzymes, detox herbs (dandelion and yellow gentian), eat tons of vegetables and blend a brew of fresh veggies each day too. Its a slow trek however, or was for me anyway. The massage(s) sounds like an excellent idea!! maybe it won't last as long for you. I was in a real bad way... Good luck!

Bea

dilettantesteph Collaborator
dilettantesteph
Posted

I found inhaled gluten bothered me for longer too. I think that it gets stuck in the hairs (villi) between your nose and stomach and gets absorbed by the mucous membranes and brought down to the stomach for a long time. I got sick for three weeks from inhaled gluten. At that time my normal gluten reaction lasted only a week.

YoloGx Rookie
YoloGx
Posted

I am wondering now if a quick use of a neti pot with salt in warm water to clean out the sinuses would help??

Have just read too taking L-glutamine is excellent against being glutened. Might be worth trying.

Bea

butterfl8 Rookie
butterfl8
Posted
  • Author

Thanks everyone! I do love my l-glutamine. Apparently it is supposed to focus on healing the intestine. . . it does seem to help mine. All my typical gluten reactions are better now. But the cold and muscle soreness are still hanging on. Of course it doesn't help at all that Denver is in deep freeze mode with a high today of 12 degrees. Driving to work this morning it was an entire -2. But time goes on and so must I!!!

-Daisy

  • 1 month later...
labbott Newbie
labbott
Posted

Thanks everyone! I do love my l-glutamine. Apparently it is supposed to focus on healing the intestine. . . it does seem to help mine. All my typical gluten reactions are better now. But the cold and muscle soreness are still hanging on. Of course it doesn't help at all that Denver is in deep freeze mode with a high today of 12 degrees. Driving to work this morning it was an entire -2. But time goes on and so must I!!!

-Daisy

Butterfl8, I just saw this post and realize it is a month old but wanted to tell you I am having the same kind of issue. If I am exposed to airborne gluten I have serious neurological issues and severe fatigue then the neuro symptoms pass after a few hours but I am left with severe fatigue and the next day I have severe hypothyroid type symptoms. I am beginning to suspect that an airborne exposure is causing my body to start attacking my thyroid now. My Dr is baffled but we cannot seem to regulate my thyroid and it is making me nuts!!

mysecretcurse Contributor
mysecretcurse
Posted

Yes, breathing it in seems to hurt me worse too! Ugh... its awful. Terrifying. I won't be somewhere with flour in the air. Period.

Good news is the thyroid thing DOES heal! I used to be so sick... literally shivering and unable to get warm at 70 degrees... I spent an entire winter sore all over my body from the constant shivering and having to soak in 2-3 hot baths throughout the day just to survive. No amount of blankets or sweaters helped... among other "broke down thyroid" symptoms like depression, exhaustion, etc.

I've healed a lot! I walked to the gym the other day in 50 degree weather in only a t shirt and light sweater! I can tolerate the cold so much more and my sleep, mood, and other things are much, much better now. I feel my thyroid works now. The longer you are away from gluten and other foods that bother you the more and more you heal, it just is a slow process.

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

Celiac.com Sponsor (A8-M):


labbott Newbie
labbott
Posted

Yes, breathing it in seems to hurt me worse too! Ugh... its awful. Terrifying. I won't be somewhere with flour in the air. Period.

Good news is the thyroid thing DOES heal! I used to be so sick... literally shivering and unable to get warm at 70 degrees... I spent an entire winter sore all over my body from the constant shivering and having to soak in 2-3 hot baths throughout the day just to survive. No amount of blankets or sweaters helped... among other "broke down thyroid" symptoms like depression, exhaustion, etc.

I've healed a lot! I walked to the gym the other day in 50 degree weather in only a t shirt and light sweater! I can tolerate the cold so much more and my sleep, mood, and other things are much, much better now. I feel my thyroid works now. The longer you are away from gluten and other foods that bother you the more and more you heal, it just is a slow process.

So how long did it take for your thyroid to start functioning well enough for you to start functioning?? I am not functioning well at all right now and would soooo love to know that this was a temporary thing. Also as I said my Dr seems to be baffled about how to fix my thyroid if airborne gluten keeps impacting it so are you saying after a while your body stopped attacking it because of airborne gluten?? I am desperate for help right now but don't know who exactly can help me since my Dr seems shocked by my degree of sensitivity.

Archived

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

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


  • Member Statistics

    • Total Members
      131,685
    • 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
      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.