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 And Gluten


mysecretcurse

Recommended Posts

mysecretcurse Contributor

Does anyone know anything about hypothyroidism going along with gluten intolerance?

Something has happened to me this past month where my thyroid seems to have failed.

I have all the symptoms of hashimoto(sp?) disease. Especially I get horrible chills and basically I have to be sitting in a boiling hot bath otherwise I'm shivering even with 3 sweatshirts on (like Im wearing right now). It feels like there are ice cubes on my skin all the time. Also depression, constant fatigue, joint pain, and I get rashes on my skin. I also get Dh in direct relation to injesting gluten but these rashes are different, they are all over my forehead, little bumps.

The hypothyroid is so terrible that I sometimes feel like just ending my life. I literally shiver until every muscle in my body is tense and sore.

I am taking iodine for my thyroid and have been for about a year now. It helped a lot before. It still seems to help but then I keep getting glutened accidentally (seriously, I cannot seem to STOP being glutened I dont know what to do) and with each time I get glutened, it seems the reaction I have is violently worse than before. I was glutened 2 days ago from Tyson chicken, and I notice it drastically increased my hypothyroid symptoms!

So I'm wondering, because I saw in another thread that there is a connection between celiac and the antibodies destroying the thyroid, if I can remain gluten free will that help heal this other condition? I don't think I was ever hypothyroid before having celiac, if I was it wasn't THIS noticable before. But like I said, before even when I ate gluten I wasn't so hyper sensitive to it. I was sick, always, but now when I have gluten there is this horrible reaction.

I'm just scared and have nowhere to turn. My low thyroid seems to have stopped me from functioning in life. I have no insurance and no money so I cannot see a doctor. I haven't been able to afford a doctor in years. So any tips on helping with my thyroid I'd greatly appreciate. Or any knowledge of how this relates to celiac might help me understand better too.

I'd rather die than live like this.


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



Celiac.com Sponsor (A8-M):



Mtndog Collaborator

I am so sorry to hear you are feeling so badly- physically and emotionally. I think that you'll find many of us here have thyroid issues. My thyroid became hypo with celiac but I never tested as abnormal and no matter how much I complained about chills and other related symptoms, no one would do anything about it. I would sit on the beach in July and have goosebumps.

Finally, my doctor put me on Armour for subclinical hypothyroid. I feel MUCH better. I know you said you don't have insurance but you have to take care of yourself. You said you are really depressed but please remember- your thyroid problems can contribute to that.

Do you have an ER or free clinic near where you live? If so, go. Tell them exactly what you told us. Please hang in there and let us know how you are. Feel free to PM me anytime. Beverly

ShayFL Enthusiast

The scary thing is that if your thyroid hormone gets too low....you could die. :(

Google: Myxedema Coma

This isnt something to play with or ignore or hope it gets better. A small number of people recover their thyroid function after gluten-free, but many dont. Me included.

Armour thyroid saved my life!! I was like you....suicidal. It was miserable and I didnt want to live.

You MUST get help for this. PLEASE go to the ER if you have to. And BTW...iodine makes Hashi's worse. :(

Mother of Jibril Enthusiast
And BTW...iodine makes Hashi's worse. :(

This is a tiny point, but yes... At first, iodine might help kick your thyroid up a notch, but as it burns out (from the continuing autoimmune attack) it doesn't have anything left to give! If your thyroid has been destroyed, no vitamin or mineral supplement is going to help.

The good news... thyroid medication is CHEAP. It's not like having diabetes or rheumatoid arthritis. Find a public health clinic and get your TSH tested.

nutrifoodie Apprentice
This is a tiny point, but yes... At first, iodine might help kick your thyroid up a notch, but as it burns out (from the continuing autoimmune attack) it doesn't have anything left to give! If your thyroid has been destroyed, no vitamin or mineral supplement is going to help.

Finally, my doctor put me on Armour for subclinical hypothyroid. I feel MUCH better. You said you are really depressed but please remember- your thyroid problems can contribute to that.

Mother of Jibril- it is important to designate between autoimmune hypothyroidism, and just plain hypothyroidism. She could have the autoimmune kind (like Hashimotos) or she could have the hypothyroidism without autoimmune part.

I am on Armour too for subclinical hypothryoid. I have not yet reached the right dosage.. but I know where you are coming from, I GET EXTREMELY cold sometimes too. Your's sounds very extreme. Find a doctor, get your blood tests (and if if you don't come up) then GET ON ARMOUR. Having untreated hypothyroidism reeks HAVOC on your body.

Get fixed soon :D I hope this helps.

mysecretcurse Contributor

Thank you all for your replies.

I've been getting * a little * better. It seems the farther away from a glutening I get, the better I get, thyroid/body warmth wise. It was weird, I woke up one morning and it was as if I could feel my thyroid working again, or maybe it was just the gluten leaving my system. I felt different. And all day my body temperature seemed to regulate better and I only got like one case of the shivers. Today I haven't had the bad shivers at all yet, although I still definitely feel cold in my extremeties. I think I have very bad circulation, it's something I need to work on.

If I ever have money I will consider getting my thyroid tested and getting some medication. But I literally am pretty homeless right now, I'm just bumming off some relatives for the holidays, so it's not really an option. But if I feel my thyroid drop really low again I'll consider the ER, I didn't know you could die from that! Hopefully it wont happen again.

Thank you all!

Mtndog Collaborator

Just know we are thinking of you and when we all put our heads together, we can find a way to help you!


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



Celiac.com Sponsor (A8-M):



nasalady Contributor
Does anyone know anything about hypothyroidism going along with gluten intolerance?

I'm just scared and have nowhere to turn. My low thyroid seems to have stopped me from functioning in life. I have no insurance and no money so I cannot see a doctor. I haven't been able to afford a doctor in years. So any tips on helping with my thyroid I'd greatly appreciate. Or any knowledge of how this relates to celiac might help me understand better too.

I'd rather die than live like this.

As others have said, this is serious....please get some sort of medical help, even if it's from a free clinic or an emergency room! You could go into a coma. I was nearly at that point when my Hashimoto's was diagnosed, and my thyroid had swelled up to the point where it was pressing on my windpipe making it hard to breathe. I ended up at the ER where they told me that my TSH was over 90! (Most people feel best when TSH <1)

Regarding the link between celiac disease and autoimmune thyroid diseases such as Hashimoto's and Graves disease, please check out some of the medical articles I have posted at the following website:

Open Original Shared Link

The berti2004, volta2001, and hadithi2007 are some papers which specifically address this issue. Research has shown that following a gluten free diet can actually reduce the number of organ-specific antibodies in the bloodstream. My daughter Robin started on a gluten free diet after I shared this info with her because she has tested positive for the Hashimoto's antibodies even though her thyroid is not yet damaged to any significant degree. Perhaps going gluten-free will actually prevent damage!

In any case, I hope you find some way to see a doctor....take care,

JoAnn

Mother of Jibril Enthusiast
Mother of Jibril- it is important to designate between autoimmune hypothyroidism, and just plain hypothyroidism. She could have the autoimmune kind (like Hashimotos) or she could have the hypothyroidism without autoimmune part.

That's true, but let's consider the reasons that someone would have hypothyroidism that was not autoimmune... treatment for Graves disease that went too far, thyroid cancer, removal of the thyroid, being born without a thyroid, or being exposed to massive amounts of radiation. In any of these cases... I think you'd be aware of the problem! It's the autoimmune version that sneaks up on you. ;)

I didn't mean to be misleading... autoimmune hypothyroidism is the most common type.

mysecretcurse - I'm sorry you're in such tough circumstances right now :( Having a thyroid that's not working properly can really diminish the quality of your life. Do try to find a free clinic (public health clinic) if you haven't found one already. Also... what state do you live in? Some states (Minnesota, for example) provide free or subsidized health insurance to people living below certain income levels.

digmom1014 Enthusiast

Don't know if you have a CVS nearby but, ours acts as a nurse practitioner does. They can perscribe meds and do some testing. It might be a cheaper alternative to look into.

GlutenGuy36 Contributor
Does anyone know anything about hypothyroidism going along with gluten intolerance?

Something has happened to me this past month where my thyroid seems to have failed.

I have all the symptoms of hashimoto(sp?) disease. Especially I get horrible chills and basically I have to be sitting in a boiling hot bath otherwise I'm shivering even with 3 sweatshirts on (like Im wearing right now). It feels like there are ice cubes on my skin all the time. Also depression, constant fatigue, joint pain, and I get rashes on my skin. I also get Dh in direct relation to injesting gluten but these rashes are different, they are all over my forehead, little bumps.

The hypothyroid is so terrible that I sometimes feel like just ending my life. I literally shiver until every muscle in my body is tense and sore.

I am taking iodine for my thyroid and have been for about a year now. It helped a lot before. It still seems to help but then I keep getting glutened accidentally (seriously, I cannot seem to STOP being glutened I dont know what to do) and with each time I get glutened, it seems the reaction I have is violently worse than before. I was glutened 2 days ago from Tyson chicken, and I notice it drastically increased my hypothyroid symptoms!

So I'm wondering, because I saw in another thread that there is a connection between celiac and the antibodies destroying the thyroid, if I can remain gluten free will that help heal this other condition? I don't think I was ever hypothyroid before having celiac, if I was it wasn't THIS noticable before. But like I said, before even when I ate gluten I wasn't so hyper sensitive to it. I was sick, always, but now when I have gluten there is this horrible reaction.

I'm just scared and have nowhere to turn. My low thyroid seems to have stopped me from functioning in life. I have no insurance and no money so I cannot see a doctor. I haven't been able to afford a doctor in years. So any tips on helping with my thyroid I'd greatly appreciate. Or any knowledge of how this relates to celiac might help me understand better too.

I'd rather die than live like this.

I'm right there with ya. I also have hypothyroidism. I was diagnosed with Hypothyroidism a few months before they diagnosed me with Celiac Disease. I'm sure you will hear alot about " your normal range" that your Tsh should be. I have heard that this is a black and white issue. Not everyones body is the same so you may need to be on the lower end of the scale.

I have tons of body pains, aches etc and it totally sucks everyday. I don't know if its from the Celiac or the thyroid. Thyroid controls metablolism so when it slows down things get messed up. I hope they figure things out for you. I'm still struggling with my thyroid. I had my medicine changed three times. I don't think it was absorbing well at first because of the Celiacs Disease. Take care, Ted.

Hummingbird4 Explorer

From what I understand, it's statistically more likely than average for a person to who has hypothyroidism to also have Celiac disease and vice-versa. I was diagnosed hypothyroid about 11 years ago and have been on Synthroid ever since. It was never officially diagnosed as Hashimoto's, but I don't think it really matters - the treatment (thyroid hormone replacement) is the same. Just for my own knowledge, I had my thyroid antibodies tested a few months ago and they are higher than the normal range. I was diagnosed Celiac 6 months ago. Are they related? Probably.

In any case, as the others said, it's important to not treat yourself for thyroid issues. Find yourself a doctor somehow and get on thyroid medication. I hope it helps you feel better very soon!

mysecretcurse Contributor

Hi everyone. My thyroid feels fine now. Maybe it wasn't really hypothyroidism but just symptoms of a glutening? I'm not cold anymore. I am still really sick from the gluten though. It's so frustrating. So so frustrating.

I'm in California, there are no free clinics that I know of, ER's would be the worst option because they are thousands of dollars. The reason I'm so against all that is I've been down this road before, me and my ex fiance had no money and no insurance and he had to visit the ER many times, once for a broken hand, once for a busted lip, a bunch of different things happened to him. He ended up over 10 grand in debt and can't even rent apartments and get loans because of it. I also have gone to the ER because of things before, and they didn't even offer me any help, or listen to me when I described my symptoms, as soon as they saw I couldn't pay they pretty much just made sure I was alive and then booted me out.

Maybe it's the area I live in but health care sucks around here. My ex also had to go to a low income clinic before because his back was hurting and the doctor refused to give him treatment when she found out he couldn't pay. We were just sent away. Another time a low income doctor physically abused him, and the only witnesses were me and my ex, and no one believed us! It was such crap. She HIT him, hard in the back when she found out he couldn't pay. It was some middle eastern lady who barely spoke english. We were so upset.

No one gives a sh*t about anything but money. After many many of these incidents I turned away from western medicine and haven't been to a doctor in many years. I simply don't trust them. I'm sure there are great doctors out there too, which sucks, but they are not the ones working at the low income clinics, trust me. These clinics treat people like cattle, barely even speaking to them before sending them on, and they still are too expensive for me to afford.

It's okay though because I am getting better. I am thinking about trying a no grain diet for awhile (not just gluten free but no grains at all). I think the only reason my thyroid shut down was because the glutening was so very severe. Of course it's all just a guessing game but that's how you have to live when there is no one to take care of you but yourself. No one seems to understand that just getting on thyroid medication isn't an option. That costs money! A lot of money I don't have. Since I have none, 2 dollars is a lot. And before you ask no I don't pay for this computer, this internet, this house, I'm bumming off relatives for the holidays. I don't have a house of my own or anything. It's a long long unpleasant story, I won't get into it.

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - ShariW commented on Scott Adams's article in Frequently Asked Questions About Celiac Disease
      4

      What are Celiac Disease Symptoms?

    2. - klmgarland replied to klmgarland's topic in Dermatitis Herpetiformis
      2

      Help I’m cross contaminating myself,

    3. - Scott Adams replied to klmgarland's topic in Dermatitis Herpetiformis
      2

      Help I’m cross contaminating myself,

    4. - Scott Adams replied to Jmartes71's topic in Coping with Celiac Disease
      1

      My only proof

    5. - Scott Adams replied to Colleen H's topic in Related Issues & Disorders
      1

      Methylprednisone treatment for inflammation?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,908
    • Most Online (within 30 mins)
      7,748

    ebrown
    Newest Member
    ebrown
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Who's Online (See full list)

    • There are no registered users currently online
  • Upcoming Events

  • Posts

    • klmgarland
      Thank you so very much Scott.  Just having someone understand my situation is so very helpful.  If I have one more family member ask me how my little itchy skin thing is going and can't you just take a pill and it will go away and just a little bit of gluten can't hurt you!!!! I think I will scream!!
    • Scott Adams
      It is difficult to do the detective work of tracking down hidden sources of cross-contamination. The scenarios you described—the kiss, the dish towel, the toaster, the grandbaby's fingers—are all classic ways those with dermatitis herpetiformis might get glutened, and it's a brutal learning curve that the medical world rarely prepares you for. It is difficult to have to deal with such hyper-vigilance. The fact that you have made your entire home environment, from makeup to cleaners, gluten-free is a big achievement, but it's clear the external world and shared spaces remain a minefield. Considering Dapsone is a logical and often necessary step for many with DH to break the cycle of itching and allow the skin to heal while you continue your detective work; it is a powerful tool to give you back your quality of life and sleep. You are not failing; you are fighting an incredibly steep battle. For a more specific direction, connecting with a dedicated celiac support group (online or locally) can be invaluable, as members exchange the most current, real-world tips for avoiding cross-contamination that you simply won't find in a pamphlet. You have already done the hardest part by getting a correct diagnosis. Now, the community can help you navigate the rest. If you have DH you will likely also want to avoid iodine, which is common in seafoods and dairy products, as it can exacerbate symptoms in some people. This article may also be helpful as it offers various ways to relieve the itch:  
    • Scott Adams
      It's very frustrating to be dismissed by medical professionals, especially when you are the one living with the reality of your condition every day. Having to be your own advocate and "fight" for a doctor who will listen is an exhausting burden that no one should have to carry. While that 1998 brochure is a crucial piece of your personal history, it's infuriating that the medical system often requires more contemporary, formal documentation to take a condition seriously. It's a common and deeply unfair situation for those who were diagnosed decades ago, before current record-keeping and testing were standard. You are not alone in this struggle.
    • Scott Adams
      Methylprednisolone is sometimes prescribed for significant inflammation of the stomach and intestines, particularly for conditions like Crohn's disease, certain types of severe colitis, or autoimmune-related gastrointestinal inflammation. As a corticosteroid, it works by powerfully and quickly suppressing the immune system's inflammatory response. For many people, it can be very effective at reducing inflammation and providing rapid relief from symptoms like pain, diarrhea, and bleeding, often serving as a short-term "rescue" treatment to bring a severe flare under control. However, experiences can vary, and its effectiveness depends heavily on the specific cause of the inflammation. It's also important to be aware that while it can work well, it comes with potential side effects, especially with longer-term use, so it's typically used for the shortest duration possible under close medical supervision. It's always best to discuss the potential benefits and risks specific to your situation with your gastroenterologist.
    • Scott Adams
      Based on what you've described, it is absolutely possible you are dealing with non-celiac gluten sensitivity (NCGS).  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.   Your situation is a classic presentation: a negative celiac panel but a clear, recurring pattern of symptoms triggered by gluten. The symptoms you listed—particularly the extreme fatigue, bloating, neurological-psychiatric symptoms like depression and anxiety, and even the skin manifestations like facial flushing—are all well-documented in research on NCGS. It's important to know that you are not alone in experiencing this specific combination of physical and emotional reactions. The only way to know for sure is to commit to a strict, 100% gluten-free diet under the guidance of a doctor or dietitian for a period of several weeks to see if your symptoms significantly improve. It is also crucial to rule out other potential causes, so discussing these symptoms with a gastroenterologist is a very important next step.
×
×
  • 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.