Hashimotos patient with possible celiac/ncgi?

[bh2468]

Hi everyone! 

I am a 24 year old with hashimotos and am wondering if I might also have celiac or non celiac gluten intolerance. As I mentioned I have hashimotos and despite being on a good dose of thryoid hormone - not optimal but still good - I am still suffering with really bad symptoms - just as bad as when my thyroid levels were lower. I always attributed my continual symptoms to not being on the optimal dose yet but the more my dose and thyroid levels increase I am not getting better at the rate I would excpect especially as my other hypo symtpoms have improved a lot. My symptoms are extreme fatigue, lightheaded, continual low ferritin levels which often dip into iron defiency anemia despite trying many things to rectify them, bad acid reflux, constipation and bloating and somtimes itchy red and pink bumps over my back, knees, elbows, lower legs and some on my chest. I also had a period of dramatic weight loss - lost a 1/3 of my body weight but I have gardually built it back up over the last year since being on thyroid medication but I was incredibly ill when I finally got my hashis diagnosis so I am more likely to believe the weight loss was related to that. 

I had a celiac test in 2018 and it was negative but I began eating gluten free not long after as I had bad digestive symptoms including bloating and alternating constipation/loose stools - though never strictly eg looking for cross contamination. My endocrinologist also told me to eat gluten free when I was diagnosed. Interestingly in late 2019 when I was severely ill I couldn't eat normally and was living on smoothies and shakes - which I have recently found out were all ceritified gluten free. I had a blood test in february 2020 after being fully gluten free without knowing it and with no chance of cross contamination for 6 months and my ferritin was 89 (15-250) - highest its ever been in my LIFE since my first ferritin test despite not eating any iron rich foods including meat and my thyroid levels were also optimal. Shortly after I began to be able to eat normally and I was good for a couple weeks then started to go down hill. I was still eating gluten free but again not checking for cross contamination and the next blood test in april showed my ferritin had shot back down in tandem with me feeling awful and my thyroid levels had also dropped even though I was on the same dose. My ferritin has been low ever since dipping into anemia twice since september and this is despite me eating a incredibly iron rich diet and supplementing. I assumed the thyroid levels dropped because of the ferritin or vice versa but I couldn't work out why they dropped and I have just discvered by accident that the oats I have been having for breakfast every day since I started eating normally again around the time I started feeling ill are not gluten free and even have a warning that says contains gluten. Now im wondering it was this possible gluten ingestion every day for the last year that has been keeping me so ill especially as the itchy eczema type rash is a new symptom that I didn't have before when my thryoid levels were lower. Two days ago I started a FULLY gluten free diet and I am trying to be vigilant about cross contamination and see what happens. I know that hashis is strongly linked to celiac and ncgi and was wondering if this sounded like it could be the case? I am assuming that I should just stay on this stict regime and see if I feel any better but wanted to ask how long would you give it see if I a) feel better and b) if my ferritin levels improve? If things did improve Is this something I should bring up with my endocrinlogist at my June appointment or is it less important to get an official diagnosis because the treatment stays the same regardless and I assume its more likely I have ncgi? Huge thanks! :)

[trents]

Whew! I'm exhausted after reading that.

1 hour ago, bh2468 said:

Hi everyone! 

I am a 24 year old with hashimotos and am wondering if I might also have celiac or non celiac gluten intolerance. As I mentioned I have hashimotos and despite being on a good dose of thryoid hormone - not optimal but still good - I am still suffering with really bad symptoms - just as bad as when my thyroid levels were lower. I always attributed my continual symptoms to not being on the optimal dose yet but the more my dose and thyroid levels increase I am not getting better at the rate I would excpect especially as my other hypo symtpoms have improved a lot. My symptoms are extreme fatigue, lightheaded, continual low ferritin levels which often dip into iron defiency anemia despite trying many things to rectify them, bad acid reflux, constipation and bloating and somtimes itchy red and pink bumps over my back, knees, elbows, lower legs and some on my chest. I also had a period of dramatic weight loss - lost a 1/3 of my body weight but I have gardually built it back up over the last year since being on thyroid medication but I was incredibly ill when I finally got my hashis diagnosis so I am more likely to believe the weight loss was related to that. 

I had a celiac test in 2018 and it was negative but I began eating gluten free not long after as I had bad digestive symptoms including bloating and alternating constipation/loose stools - though never strictly eg looking for cross contamination. My endocrinologist also told me to eat gluten free when I was diagnosed. Interestingly in late 2019 when I was severely ill I couldn't eat normally and was living on smoothies and shakes - which I have recently found out were all ceritified gluten free. I had a blood test in february 2020 after being fully gluten free without knowing it and with no chance of cross contamination for 6 months and my ferritin was 89 (15-250) - highest its ever been in my LIFE since my first ferritin test despite not eating any iron rich foods including meat and my thyroid levels were also optimal. Shortly after I began to be able to eat normally and I was good for a couple weeks then started to go down hill. I was still eating gluten free but again not checking for cross contamination and the next blood test in april showed my ferritin had shot back down in tandem with me feeling awful and my thyroid levels had also dropped even though I was on the same dose. My ferritin has been low ever since dipping into anemia twice since september and this is despite me eating a incredibly iron rich diet and supplementing. I assumed the thyroid levels dropped because of the ferritin or vice versa but I couldn't work out why they dropped and I have just discvered by accident that the oats I have been having for breakfast every day since I started eating normally again around the time I started feeling ill are not gluten free and even have a warning that says contains gluten. Now im wondering it was this possible gluten ingestion every day for the last year that has been keeping me so ill especially as the itchy eczema type rash is a new symptom that I didn't have before when my thryoid levels were lower. Two days ago I started a FULLY gluten free diet and I am trying to be vigilant about cross contamination and see what happens. I know that hashis is strongly linked to celiac and ncgi and was wondering if this sounded like it could be the case? I am assuming that I should just stay on this stict regime and see if I feel any better but wanted to ask how long would you give it see if I a) feel better and b) if my ferritin levels improve? If things did improve Is this something I should bring up with my endocrinlogist at my June appointment or is it less important to get an official diagnosis because the treatment stays the same regardless and I assume its more likely I have ncgi? Huge thanks!

Whew! I'm exhausted after reading that. You might want to go back and use bullet points or more punctuation to break that up a little bit and make it more readable rather than using an extended run-on sentence narrative style.

Anyway, you for sure will not be able to determine if gluten is the principal issue unless you totally commit to eliminating gluten, including cross contamination, from your diet. This usually requires a period of trial and error and education to accomplish.

You are correct, whether or not you have non celiac gluten insensitivity or celiac disease the treatment is the same. Totally eliminate gluten. However, if you intend to get tested again for celiac disease, you must be consuming a normal amount of gluten daily for 8 weeks before the blood test and at least 2 weeks before an endoscopy/biopsy.

As far as your iron levels. Have you been checked for "pernicious" anemia? People who have this require B12 injections.

Even with gluten free oats, about 10% of people with celiac disease react to oat protein the same way they do the gluten in wheat, barley and rye.

[Scott Adams]

We’ve done a lot of articles on the thyroid and celiac connection:

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

To me is sounds like you are likely gluten sensitive, and the best you’ve done in the past is when you were on a gluten-free diet for an extended time. Consider going gluten-free permanently.

[Melissa93]

Hey!

 

I have hashimoto's disease and celiac disease. Was tested for celiac a few times in my life (always positive antibodies but negative/inconclusive biopties), and eventually got diagnosed with hashimoto's at the age of 18. Finally got my celiac diagnoses at age 27 (last year). It sounds like you definitely respond to gluten, whether it's ncgs or celiac disease or fodmaps even, I found it quite hard before to really commit to going fully gluten free without getting an official diagnosis. 

 

I would probably advice to talk to a GI and come up with an action plan. Whether you go back on gluten to get another set of tests, or to get you on a strict gluten-free-diet with possibly a nutritionist to see if your symptoms get better. 

 

I have to add that since I've gone gluten free for a few months now, I have also realized I react to quite a few other foods as well, which basically make me feel like I've had gluten. I'm hoping they are temporarily intolerances while my gut and intestines heal, but it's usually foods that I haven't eaten much in my whole life (like sorghum, millet, topioca etc). 

 

OH! And my TSH got substantionally better once I got on a gluten free diet, like within 8 weeks. And during those weeks I was still frequently glutening myself with cross-contamination, so I'm hoping they will get even better with time.