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

Seacelt

By Seacelt
in Related Issues & Disorders

Recommended Posts

Seacelt Newbie
Seacelt
Posted

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.

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pricklypear1971 Community Regular
pricklypear1971
Posted

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

Skylark Collaborator
Skylark
Posted

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
Seacelt
Posted
  • Author

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
Seacelt
Posted
  • Author

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
kareng
Posted

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
Seacelt
Posted
  • Author

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!!

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pricklypear1971 Community Regular
pricklypear1971
Posted

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.

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  • Posts

    • StuartJ
      Gluten Sensitivity

      By StuartJ · Posted

      Well, three months later and a startling revelation!  After going gluten free (and nearly bankrupt buying special foods), my wife made a lunch of meat potatoes and gravy made with Bertolli white sauce - no wheat there right?  Big flare up withing hours and I was really wiped out with it.  She rechecks the label on the sauce bottle and right at the bottom of the ingredients XANTHAN GUM. There's our #1 suspect again!  So by way of experimenting, she decided to try making a loaf of bread with just regular white flour like she used to do and see what happened; the familiar smell hit me when I walked in the door last night and I sat down to eat this still warm, fresh goodness - I thought even if I have to take Imodium sandwiches, it will be worth it 😋 No ill effects, either overnight or today!  Half the loaf is now gone because I had some for supper, saving just one last slice for breakfast in the morning` - I've used the bathroom once and that was normal, so maybe it is not the gluten after all? Can't wait to try a beer! 😁
    • trents
      Could this be a new intolerance

      By trents · Posted

      Unfortunately, the development of celiac disease usually is not an end in and of itself. It usually brings along friends, given time. It is at heart an immune system dysfunction which often embraces other immune system dysfunctions as time goes on.
    • Celiacpartner
      Could this be a new intolerance

      By Celiacpartner · Posted

      Thanks so much for the responses. I will urge him to go for further investigation. To be 48yrs old and develop a new allergy.. ugh, As if celiac disease isn’t enough! 
    • trents
      Could this be a new intolerance

      By trents · Posted

      This does not seem to be an anaphylactic response but I agree it would be wise to seek allergy-food sensitivity testing. You might look into ALCAT food sensitivity testing.
    • Rogol72
      Could this be a new intolerance

      By Rogol72 · Posted

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