Hashimoto's and gluten sensitivity.

[Cry123]

Hi, I was diagnosed with Hashimoto's after my daughter was born, but had a goiter big enough since 12 that I tricked my stepsister into thinking I'd been born a boy.  I went over a decade asking doctors why I had an Adam's apple and no one could tell me.  And we were middle class folks with extremely good health insurance.  I was not a healthy kid.  Anyway, I had been reading a lot about the connection between Hashimoto's and gluten sensitivity.  My TSH came back showing I need to adjust my meds again, so I went in to see the doctor about that.  While there I asked about gluten and Hashimoto's, he wasn't all that convinced but I reminded him I have had problems with diarrhea all my life off and on, but the last few years it's been mostly on.  And then he agreed it might be worth just going gluten free for a while but not to get fixated because people do that when they don't need to.  I came out of there feeling a bit of a fool for even bringing it up but made the decision to give it a try.  So after a few days I woke up feeling strangely energetic.  Worked in the garden, went shopping, came home did more garden work then made dinner.  Doin' good, then today I wake up feeling like total hell, a few trips to the bathroom, back pain, joint pain and extreme anxiety - we did lose everything in the fires last year here in Oregon so wind now make all of us anxious.  But it was that anxiety that comes with extreme brain fog also.  I was so disappointed, then I remembered - I was making dinner for everyone very last minute and I threw together pasta sauce... and made pasta for everyone else...testing it along the way. My annoyingly long story leads me to - is it possible to notice feeling better so soon, then return of gluten sensitivity that fast.  I seriously doubt I have Celiacs, more gluten sensitivity maybe.  

Thank you so much to anyone who reads this.

[trents]

  On 6/25/2021 at 11:34 PM, Cry123 said:

Hi, I was diagnosed with Hashimoto's after my daughter was born, but had a goiter big enough since 12 that I tricked my stepsister into thinking I'd been born a boy.  I went over a decade asking doctors why I had an Adam's apple and no one could tell me.  And we were middle class folks with extremely good health insurance.  I was not a healthy kid.  Anyway, I had been reading a lot about the connection between Hashimoto's and gluten sensitivity.  My TSH came back showing I need to adjust my meds again, so I went in to see the doctor about that.  While there I asked about gluten and Hashimoto's, he wasn't all that convinced but I reminded him I have had problems with diarrhea all my life off and on, but the last few years it's been mostly on.  And then he agreed it might be worth just going gluten free for a while but not to get fixated because people do that when they don't need to.  I came out of there feeling a bit of a fool for even bringing it up but made the decision to give it a try.  So after a few days I woke up feeling strangely energetic.  Worked in the garden, went shopping, came home did more garden work then made dinner.  Doin' good, then today I wake up feeling like total hell, a few trips to the bathroom, back pain, joint pain and extreme anxiety - we did lose everything in the fires last year here in Oregon so wind now make all of us anxious.  But it was that anxiety that comes with extreme brain fog also.  I was so disappointed, then I remembered - I was making dinner for everyone very last minute and I threw together pasta sauce... and made pasta for everyone else...testing it along the way. My annoyingly long story leads me to - is it possible to notice feeling better so soon, then return of gluten sensitivity that fast.  I seriously doubt I have Celiacs, more gluten sensitivity maybe.  

Thank you so much to anyone who reads this.

Expand Quote  

If you have celiac disease or gluten sensitivity, once you go off of gluten for any length of time you become more intolerant of it than you were when consuming it daily. Getting "glutened" after being off of it typically makes you sicker than a dog.

What makes you think you have gluten sensitivity and not celiac disease? The symptoms are largely the same. 

Your physician gave you a bum steer in telling you to go off gluten as a trial. Now, if you go in for testing after having started the gluten free diet, the testing will be invalid. For the antibody blood test you would need to be eating regular amounts of gluten daily (equivalent of two slices of wheat bread) for 6-8 weeks and for the endoscopy/biopsy you would need to be back on daily gluten for at least 2 weeks.

Edited June 26, 2021 by trents

[Cry123]

Thank you Trents...why don't I think I have celiacs?  Just really hoping, but honestly I don't really care - if I feel better staying clean of gluten I will do it.  It’s the social aspect that gets me, I'm shy as it is around new people, I fear having a dietary restriction will bring unwanted scrutiny and attention.  

Just have to remember not to test that pasta or accidentally eat a cracker.  My daughter is a pastry chef and has many of the same symptoms, much worse though, so now she is wondering and considering experimenting with gluten free recipes. 

[trents]

Yes, the social aspect is the hardest dimension of having a gluten disorder. Friends and family can be hard to get onboard. It requires patient education and grace. It's a good idea to prepare ahead of time with some gracious responses to the skepticism of family and friends. 

By the way, if you have celiac disease, there is a 44% chance that your first degree relatives will have or will develop it as well. So your daughter has an almost even chance of having what you have.

[Scott Adams]

The only way to find out for sure would be to get tested for celiac disease. It’s a simple blood test so perhaps you should do that before you go Gluten-Free? You need to be eating gluten daily for at least 6 to 8 weeks before any blood test.

Here are some articles about celiac disease in relation to thyroid issues:

https://www.celiac.com/celiac-disease/celiac-disease-amp-related-diseases-and-disorders/thyroid-pancreatic-disorders-and-celiac-disease/

[KylieG]

  On 6/25/2021 at 11:34 PM, Cry123 said:

Hi, I was diagnosed with Hashimoto's after my daughter was born, but had a goiter big enough since 12 that I tricked my stepsister into thinking I'd been born a boy.  I went over a decade asking doctors why I had an Adam's apple and no one could tell me.  And we were middle class folks with extremely good health insurance.  I was not a healthy kid.  Anyway, I had been reading a lot about the connection between Hashimoto's and gluten sensitivity.  My TSH came back showing I need to adjust my meds again, so I went in to see the doctor about that.  While there I asked about gluten and Hashimoto's, he wasn't all that convinced but I reminded him I have had problems with diarrhea all my life off and on, but the last few years it's been mostly on.  And then he agreed it might be worth just going gluten free for a while but not to get fixated because people do that when they don't need to.  I came out of there feeling a bit of a fool for even bringing it up but made the decision to give it a try.  So after a few days I woke up feeling strangely energetic.  Worked in the garden, went shopping, came home did more garden work then made dinner.  Doin' good, then today I wake up feeling like total hell, a few trips to the bathroom, back pain, joint pain and extreme anxiety - we did lose everything in the fires last year here in Oregon so wind now make all of us anxious.  But it was that anxiety that comes with extreme brain fog also.  I was so disappointed, then I remembered - I was making dinner for everyone very last minute and I threw together pasta sauce... and made pasta for everyone else...testing it along the way. My annoyingly long story leads me to - is it possible to notice feeling better so soon, then return of gluten sensitivity that fast.  I seriously doubt I have Celiacs, more gluten sensitivity maybe.  

Thank you so much to anyone who reads this.

Expand Quote  

Hi there!

 

I have Hashimotos and NCGS. I’ve only been on the journey since February but I have felt so good just a few days after I went gluten free….but whenever I accidentally get ‘glutened’ I get the aches and pains come back, massive anxiety and sometimes brain fog and muscle fassiculations.

It’s a massive learning curve. I just need to stop putting things in my mouth without thinking about it haha! Good  luck! 😊