Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • 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
      129,966
    • Most Online (within 30 mins)
      7,748
    Susan Allsopp
    Newest Member
    Susan Allsopp
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Wheatwacked
      Newly diagnosed, struggling

      By Wheatwacked · Posted

      Hello @CeliacNew, If you are Vegan to help you feel better, reconsider returning to omnivore.  Actually, since you are already on a very restrictive diet, transitioning to gluten free might be easier for you.  Read the ingredient labels, Particularly vitamin D and Choline require supplements for vegan diet because our primary source is sun, eggs and beef.  B12 also.
    • Wheatwacked
      Multiple symptoms and mixed provider responses

      By Wheatwacked · Posted

      Once you've completed testing and still don't have improvement, start a trial gluten free diet.  Looking for imprvement that may indicate Non Celiac Gluten Sensitivity, which is 10 times more prevalent than Celiac Disease. Deficiencies in vitamins B6, B12, D, and C can manifest as skin rashes.  Virtual guaranty you are deficient in vitamin D.
    • cameo674
      Help vetting HLA-DQ typing provider

      By cameo674 · Posted

      So those rs numbers tell researchers where the dbSNP is located in a Genome so that other reasearchers or an AI system can look in that specific spot for that Snip of information.  You can look those rs # s by pasting the numbers after rs into the lookup on this page https://www.ncbi.nlm.nih.gov/snp/ right under the Blue header bar at the top of the webpage.  Since you are not a researcher, I do not know how this will help you though.
    • cameo674
      Finally got in to doctor to get my referral and I lucked out and got into Gastro the same day - question about different transglutaminase results

      By cameo674 · Posted

      So I posted here once before, and everyone advocated that I get into a GI doc.  I finally got into my functional health appointment on 6/16 to get my blood results evaluated and get the Gastro referral. I was told that I would be fortunate to see a gastro doctor by December, because of the number of people waiting to get in, but they did believe that I needed to see a GI doc among others.  Well, the stars aligned. I got home. I looked at MyChart and it showed an appointment available for later that same day. I never clicked so fast on an appointment time. The gastro doc ran some additional blood work based off the December values that had confirmed my daughter's suspicion that I have undiagnosed stomach issues.  Gastro has also scheduled me to get an upper endoscopy as well as a colonoscopy since it has been 8 years since my last one. She said it would rule out other concerns if I did not show Celiac per the biopsies.  Those biopsies will not occur until August 29th and like everyone here stated, Gastro wants me to keep gluten in my diet exactly as everyone suggested. To be honest, I was barely eating any gluten since I figured I would have plenty of time to do so before testing.  Doc is also looking for the cause of the low level heartburn that I have had for 30 years.  I have mentioned the heartburn to PCPs in the past and they always said take a tums or other OTC drug.  The upper endoscopy is for ruling out eosinphilic esophagitis, h. pylori, and to biopsy the duodenal bulb and second portion to confirm or exclude celiac. The colonoscopy will have random biopsies to rule out microscopic colitis. I didn't really catch her reasoning for the bloodwork.  Doc looked at the December numbers and said they were definitely concerning for Celiac.  She also said, “Hmm that’s odd; usually it’s the reverse”, but I did not catch which result made her say that. She seems very through.  She also asked why I had never bothered to see a GI before.  To be honest, I told her I just assumed that the heartburn and loose stool were a part of aging.  I have been gassy since I was born and thought constantly passing gas was normal?  Everyone I know with Celiac have horrible symptoms that cannot be attributed to other things.  They are in a lot of stomach pain.  I do not go through that.  I attribute my issues to the lactose intolerance that comes with aging, but have slowly been eliminating foods from my diet due to the heartburn or due my assumption that they did not agree with a medication that I was prescribed. I have already eliminated milk products especially high fat ones like ice cream; fats like peanut butter; acids like citrus and tomatoes; chocolate in all forms; and breads more because it is so hard to get in 100 grams of protein if I eat any foods that are not a protein.  I would not have even done the testing if my daughter had not brought up the fact that she thought I might have an undiagnosed condition since she has issues with bloating and another sibling has periodic undiagnosed stomach pain that GI docs throw pills at instead of helping.  Who knew that Bristol scale 5 and 6 were not considered normal especially multiple times a day? I watched my MIL go through basically the same bowel changes starting at 50 so to be honest, I really did think it was normal before this week's appointment.   December 2024's blood tests ran through Quest Labs were:  Deamidated Gliadin (IgA) 53.8 U/mL Above range >15.0 U/mL; Deamidated Gliadin (IgG) >250.0 U/mL Above Range >15.0 U/mL; Tissue Transglutaminase (IgA) 44.0 U/mL Above range >15.0 U/mL; Tissue Transglutaminase (IgG) <1.0 In range <15.0; Immunoglobulin A (IgA) 274 mg/dL In range 47-310 mg/dL 6/16/25 bloodwork:  Until today, I did not really know what all the four tubes of blood were for and since I did not understand the results, I got into the clinical notes to see what was ordered, but it did not exactly explain why for everything. Immunoglobulins IGG, IGA, IGM all came back in range:  IGG 1,010 mg/dL In range 600-1,714; IgA 261 mg/dL In range 66-433 mg/dL; IGM 189 mg/dL In range 45-281.  How do these numbers help with diagnosis? Google says she checked these to see if I have an ongoing infection? I do have Hashimoto's and she did say once you have one autoimmune disease others seem to follow. Celiac Associated HLD-DQ Typing: DQA1* Value: 05; DQA1*DQA11 Value: 05; DQB1* Value: 02; DQB1-DQB11 Value: 02; Celiac Gene Pairs Present Value: Yes; Celiac HLA Interpretation Value: These genes are permissive for celiac disease.  However, these genes can also be present in the normal population. Testing performed by SSOP.  So google failed me.  I think these results basically say I have genes, but everybody has these genes so this test was just to confirm that there is a vague possibility?  Maybe this test result explains why I do not have the horrible symptoms most individuals with celiac have?  I told the GI my assumption is that I am just gluten intolerant since I do not have the pain? So maybe this test explains why I have antibodies? Comprehensive Metabolic Panel: Everything was in the middle of the normal range.  Google says this just says I am metabolically healthy. Tissue Transglutaminase ABS test results – Done by the Mayo Clinic’s Labs –  T-Transglutaminase IGA AB --Value: 3.1 U/mL – Normal Value is <4.0 (negative) U/mL; Tissue Transglutaminase, IgG -- Value: 15.3 U/mL High -- Normal Value is <6.0 (Negative) U/mL – Interpretation Positive (>9.0) – These are the only labs the GI did that have been labeled Abnormal.  I am confused at how/why these came back different than the December labs? Because these numbers seem to be the opposite of what the were in December and I know I have eaten less gluten.  They were definitely measured differently and had different ranges. This must be why she said they are usually opposite? Molecular Stool Parasite Panel said I was Negative for Giardia Lamblia by PCR; Entamoeba Histolytica by PCR and Cryptosporidium Parvum/Hominis by PCR.  So at least I do not need to do a parasite cleanse like everyone on TikTok seems to be doing. So I guess, I am just really asking why the Tissue Transglutaminase numbers are different.  Was it because they were truly different tests? Is it because I have not consumed the crazy amount of gluten one is suppose to eat prior to testing? To be honest, I thought that was only for the biopsy testing. I generally only eat twice a day, and the thought of eating the equivalent of 6 slices of bread is daunting. Even in my youth, I probably only consumed the equivalent of maybe 3 slices a day. Like I said before, now I usually focus on trying to eat 60 gram of protein.  I am suppose to consume 100 grams, but have failed to succeed. I will focus on eating gluten starting in July now that I know my procedure date.
    • Scott Adams
      Worried about being isolated

      By Scott Adams · Posted

      I agree with @trents and wiping down the spot you eat your lunch, and eating the food your brought from home should be safe for even sensitive celiacs. Gluten can jump on your food, so it would likely better better for you to continue eating where you prefer.
×
×
  • Create New...