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

Help! I'm Celiac, Pcos, With Severe Thyroid Problems Since Childhood!


Seacelt

Recommended Posts

Seacelt Newbie

Hi, I just joined because my specialist, dr and naturopath are at their wits end.. they're all working together to try and regulate my thyroid which has been extreme hyper to hypo since grade 3! I'm not eating gluten at all but now my thryoid has gone totally off and is super low, my vitamin d borders on rickets and my iron will not absorb. They're convinced somehow my celiac is out of control and blocking abosorption.. I'm even drinking oj when I eat red meat to help with absorption (I was a long time vegetarian and am not enjoying the red meat thing but it's necessary.. ). Just wondering if anyone has experienced this with their celiac and thyroid and if they have any advice.


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



Celiac.com Sponsor (A8-M):



pricklypear1971 Community Regular

Have they done an endoscopy to see what's going on?

Skylark Collaborator

Welcome to the board. That doesn't sound fun at all. I have had big thyroid trouble since I went gluten-free too. I'm still not sure what caused it.

Have you tried going off dairy? It can be a big problem for celiacs, plus if you're digesting poorly opiate-like peptides from dairy can get across your gut and mess with your immune system.

Seacelt Newbie

Have they done an endoscopy to see what's going on?

I can't do the celiac test.. last time I accidentally ate some chocolate that had gluten in, I had to run to the store to buy benedryll.. my throat was swelling up.. I am meeting with a GI soon to discuss options and a celiac specialist nutritionalist.

Seacelt Newbie

Welcome to the board. That doesn't sound fun at all. I have had big thyroid trouble since I went gluten-free too. I'm still not sure what caused it.

Have you tried going off dairy? It can be a big problem for celiacs, plus if you're digesting poorly opiate-like peptides from dairy can get across your gut and mess with your immune system.

I never used to eat dairy, but I have been lately having a glass with dinner, my fiancee and his family drink a lot of it and I've picked up the habit.. Going to try going off it totally for a bit and see if it helps. I'm taking probiotics regularly to aid in digestion. but literally in a manner of weeks my thyroid goes from 50 times to high to 30 times to low. My specialist has never seen the like, and it only started happening a year ago and I've been gluten free for 3 years so it seems kind of odd. I had radioactive iodine in grade 12 after they gave up trying to regulate it when I was a kid and it balanced out for quite a while. My specialist figures I had celiac as a kid and that was why it was soo bad.. go figure lol

kareng Grand Master

I can't do the celiac test.. last time I accidentally ate some chocolate that had gluten in, I had to run to the store to buy benedryll.. my throat was swelling up.. I am meeting with a GI soon to discuss options and a celiac specialist nutritionalist.

If you have Celiac and been diagnosed and gluten-free for a year or more, they may want to do an endoscopy to check and see if the gluten-free diet has helped or if there is still damage. You wouldn't have to go off your diet as they want to see if the diet has helped.

Seacelt Newbie

If you have Celiac and been diagnosed and gluten-free for a year or more, they may want to do an endoscopy to check and see if the gluten-free diet has helped or if there is still damage. You wouldn't have to go off your diet as they want to see if the diet has helped.

darn.. I was hoping to avoid it... my friend just had it and I've heard horror stories!!


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



Celiac.com Sponsor (A8-M):



pricklypear1971 Community Regular

If you have Celiac and been diagnosed and gluten-free for a year or more, they may want to do an endoscopy to check and see if the gluten-free diet has helped or if there is still damage. You wouldn't have to go off your diet as they want to see if the diet has helped.

Exactly.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      126,445
    • Most Online (within 30 mins)
      7,748

    Bonnie Robinson
    Newest Member
    Bonnie Robinson
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.9k
    • Total Posts
      69.4k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • akacase
      Hi Folks, Type 1 diabetic here; I got diagnosed almost 8 years ago and have been pretty strict gluten-free since, but since reviewing labs from that time. In the last few years, my doctor said the test wasn't conclusive (blood test) as my tTG-IgA was 4 (reference range 4-10 is a weak positive from our lab); all other values were normal. I had no symptoms and still don't. If I accidentally eat something with gluten, all celiac panels yearly show up as unfavorable (eating gluten-free). I have the gene for celiac, and my mother and grandmother both have the disease. I had an endoscopy that was for a gallbladder-related issue (which ended in a cholecystectomy), and that was over two years ago. The Dr. had me do a gluten challenge for only a week to state that he didn't believe I was celiac, which I didn't think, so I continued with gluten-free, but my GP would like a conclusive diagnosis, which I'm OK with, but I'd like some advice on how long to eat gluten for? How much? Is sourdough and naturally leavened bread OK? Below is the original comment from my biopsy, which was a 7-day challenge, where I ate at least two pieces of toast every morning for breakfast, sometimes a bit more throughout the day:   After that test, it did indeed turn out that I had a massive H. Pylori infection, as well as a shot gallbladder, which could corroborate the findings. I guess I'm asking how I should proceed with this challenge. I'd like to know for sure. My other siblings do not have celiac, but they also are Type 1 (yay). It's not like I want to go out and feast on gluten; I'm over it, but it would be nice not to worry about eating out. If I do the test, there's a wonderful local bakery that makes naturally-leavened bread, which I'd like to eat mostly, but I'm scared of a negative screen because of sourdough. Is around three weeks fine? My new endoscopy is on January 2nd. Thanks for reading!
    • Jane Donnelly
      My mother married a bread maker when I was 4 years old. Within a year, I started experiencing full-blown migraine headaches. I would lose my eyesight, vomit, and be nauseous for days, needing to be shut in my room in complete darkness. I was so sick. At 17, during my first year in college on a swimming scholarship, I developed Meniere's disease. Despite the challenges, including swimming on Valium, I became an All-American in swimming, even as I suffered hearing loss and dizzy spells throughout my college years. Diagnosing my condition was a struggle; I was allergic to everything—soy, yeast, wheat, and dairy. My life became a mess, with multiple surgeries on my ears, knees (from soccer), and nose due to Celiac disease. I eventually became allergic to NSAIDs and Aspirin, suspecting that my body was overreacting to other allergens because I didn't know I had Celiac. My mother rarely took me to the doctor, preferring to save money for her "family cabin." During all this time, I was being sexually abused by a family friend while my mother pursued her master's in social work. When we discovered I had Celiac, my mother and stepfather were inconvenienced by my need for a special diet, particularly on Thanksgiving. My mother openly complained, asking if I was going to ruin Thanksgiving Dinner. They didn't change anything for me until my little cousin was diagnosed with Celiac and they finally bought gluten-free flour. Now, with both my biological parents deceased, my brother inherited the family house instead of us sharing it, as my mother had promised. I loved that house and had helped build the heirloom garden, which my brother has since destroyed. He threw away our mother's and grandmother's heirloom jewelry, not knowing where they were hidden. I was devastated when my house burned down. My brother acts like everything is his and even changed the locks, barring me access to things he doesn't care about, like all the books. My stepfather ignored my health issues, and my mother prioritized saving money for her "family cabin." With her Alzheimer's diagnosis, my stepfather anticipated I'd also develop the disease and dismissed my health concerns. After my mother's death, all the money went to the upkeep of her dream cabin, leaving me without support. Despite my contributions and sacrifices, I received nothing while my brother inherited a $1.7 million home. I'm now living with my ex-husband because my stepfather changed the will. I need legal advice but have no money or support. I hope someone reading this can help. I've lost hearing in my right ear and suffer from multiple health issues, all stemming from my undiagnosed Celiac disease and the neglect I faced. I just want what is fair. Thank you, Jane Donnelly  PS I apologize for the rough draft
    • RMJ
      Vitamin K is also thought to help bone health, although not all scientific studies agree. 
    • trents
      @marion wheaton, are you on vitamin and mineral supplements that are appropriate for bone health in order to offset the malabsorption problem until your gut heals thoroughly? I'm talking about supplements more potent than an adult multivitamin. We routinely recommend to newly diagnosed celiacs to be taking a high potency B-complex, 5-10k of D3, Magnesium glycinate or Magnesium citrate, and zinc picolinate. All supplements need to be gluten free of course.
    • RMJ
      I’ve been taking oral alendronate for 4 years.  I haven’t had any doctors be concerned about it.  My dentist recommended against the related iv medications because of potential adverse effects on the bones in the jaw - osteonecrosis.  Supposedly rare side effect but he had seen it several times. I originally had the same concern as @trents - slowing resorption instead of building new bone.  I learned that that was a problem with the original bisphosphonates but not so much with alendronate and other newer ones.
×
×
  • Create New...