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
      126,399
    • Most Online (within 30 mins)
      7,748

    amiamoramiaint
    Newest Member
    amiamoramiaint
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.9k
    • Total Posts
      69.4k

  • Celiac.com Sponsor (A22):




  • Who's Online (See full list)


  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • sh00148
      Morning All, Just an update, I got an urgent appointment through my contact with PALS. The doctor confirmed her levels were the highest possible so she likely had higher levels of inflammation. Since the appointment, they ordered a second set of bloods, but as many of you confirmed he felt there was no doubt she was coeliac so asked us to start gluten-free. Since starting around a month ago, we have had no vomiting and this is the first week that we haven’t had to give her movicol. She’s had a (currently) a two week break from winter colds which is unheard of for her as she used to have a permanent cold in the winter months. Her tummy is softer and deflating quite a lot and her faces looks a little rosier. It’s wonderful and although I know we will have tough times in the future and difficulties with eating out, I feel so happy that we can make her better.    Thanks all. 
    • Wheatwacked
      Yes.  My son was diagnosed at weaning in 1973 His treatment was Nutramigen until he healed and was weaned to a gluten free diet.  Nutramigen with Enflora LGG Toddler: Designed for older infants and toddlers aged 9 to 36 months  While your medical system is causing delay, I think you should start GFD and document improvement and do gluten challenge when the doctors are ready for her.  She is suffering and you don't know how it is affecting her growth and she is positive.  Waiting on the beauracracy.  I still remember how my son suffered while we looked for the reason.  One doctor wanted to give my wife valium because his swollen belly was being caused by her anxiety.  But to know the answer and have to watch her suffer!
    • Scott Adams
      In case your tests turn out negative you may still want to try a gluten-free diet. 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.
    • Jack Common
      Thank you for your answer. Well, I'm going to eat at least 5 slices a day, each of them is 35 grams. I think I'll do blood tests again after four weeks. If the results are negative or not clear, I'll continue the challenge and repeat blood tests again after another four weeks.
    • Scott Adams
      You are correct in looking closer at her diet, as there may still be trace amounts of gluten, even from a gluten-free bakery (are their ingredient suppliers certified gluten-free?). You can search this site for prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/  For people with celiac disease hidden gluten in their diets is the main cause of elevated Tissue Transglutaminase IgA Antibodies (tTG-IgA), but there are other conditions, including cow's milk/casein intolerance, that can also cause this, and here is an article about the other possible causes:    
×
×
  • Create New...