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
      126,455
    • Most Online (within 30 mins)
      7,748

    LKiernan1527
    Newest Member
    LKiernan1527
    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

    • Beverage
      Sounds like you're very careful with food.  Any possible airborne or non-eating exposures? One time I got really sick from feeding my neighbor's chickens, the feed would get kicked up and I'd inhale the dust, read the ingredients, yup gluten. Another time we were doing some home remodeling, removed some old plaster, probably gluten in that. Anything like that?  Anybody lip kissing gluten eaters?  Any contact with pets that are eating gluten?  Body products like shampoo and lotions? 
    • Beverage
      Oh gosh. I remember being shocked when my new doc said he thought I had Celiacs (went in bcuz kidneys were failing, no intestinal issues), but relieved at first to find an explanation for my issues.  Then as I hit the library and the internet and read up on Celiacs, I got sooooo depressed and overwhelmed.  Funny you say "is it an italian thing?" ... I'm not Italian, but half Portuguese, so we're both full of fire. I had to keep repeating in my head something my Mom used to say (she had been raped as a teen, got pregnant from it, forced to marry the bastid, he beat them, she finally got away, married my dad years later and had a wonderful life full of love and lots of laughing), she would say "it's not what happens to you in life, it's what you do with what happens to you in life, how you go forward" So I finally accepted that this is what i have, everyone has something, and i will do what i have to do to get healthy and will probably end up living longer and better in the long run.  Start with your home, clean the kitchen from top to bottom. Read the info here on what to keep and what to toss, food and cookware, body products, just go through everything one at a time. You will get better at reading labels, it will be second nature.  Eat more whole foods, meat and veggies.  I remember running every dish in my house through the dishwater on the super cycle. It was probably overkill, but I felt better. You will make mistakes and have set backs, but you will prevail and the fire in your soul will get you through.  The people here are so supportive, never give up. 
    • GardeningForHealth
      So, an update...whatever is going on with me goes way beyond gluten. I have been keeping a food diary since June 2024, and I now have a long list of foods that I reacted to. My methodology was to test a specific food several times to verify a reaction. Here are the results: Anything that comes out of a sealed package (can, jar, sealed bag) triggers a reaction. The reaction is always the same: brain fog, fatigue, dizziness, and headache, significant enough to prevent working, and lasting for at least 3 days. This includes all "gluten-free" or "organic" packaged items except for 2 items: a certain brand of sweet potato chips, and another brand of plantain chips.  It is absurd and ridiculous that these items cause a reaction, but I have tested them at least twice each, and they in fact do cause brain fog, fatigue, and dizziness significant enough to prevent me from being productive. When my diet includes the foods in the below list for a whole month, I experience ~20+/- bad days and 10 or fewer good days during that month: Tea from any grocery store Tea, organic Tea, grown in USA, never-sprayed, loose leaf Dairy Organic catchup Any and all brands of gluten-free breads and dessert items Cassava flour, any brand Gluten-free flour, any brand Cucumbers from a grocery store, but not from my garden (likely due to Apeel coating) Most apples (likely due to Apeel coating) Zucchini (likely due to Apeel coating) Plums (likely due to Apeel coating) Potatoes  Sausage Any processed meat Bottled spices  Gluten-free dairy-free ice cream Rice, any brand, even after washing 3 times Environmental non-food triggers that will cause the exact same symptoms: Smoke from a fire Strong cleaning chemical fumes And the list goes on. So here are my safe foods; this is all I can eat now (when I eat this way throughout a whole month, I experience over 20 good productive days and 5 or so bad days): Fresh unprocessed meat in their whole forms such as chicken, beef, pork, fish, shrimp (yes, I cook it, I do not eat raw meat) Fresh unprocessed vegetables and fruits (except the ones above) in their whole form  Packaged sweet potato chips of a certain brand Packaged plantain chips of a certain brand Anything I grow in my garden Now, what in the world is this? I've never heard of something this bizarre and wouldn't have believed it unless this had been my own personal experience. I have delayed posting this here, because I haven't been able to make sense of it myself.
    • Lkg5
      Totally agree with you about oxalates.  Changed my diet recently since reading about them.  No more daily handfuls of almonds or almond milk.  Turns out they are very high in oxalates.  Noticed an immediate improvement in my digestion and urine was no longer cloudy.  Pecans and walnuts are a safer alternative.  Spinach, too, is a definite no-go.
    • Scott Adams
      I agree with @trents on the sourdough bread--regular bread should be used, or Saltine crackers, etc.  
×
×
  • Create New...