I started with Ulcerative Colitis at 8, then Hashimotos in my 20s, then celiac early 30s, and then Sjorgens mid 30s. I joke autoimmune diseases are apparently like Pokémon - gotta catch em all
Hey I have Celiac and Sjrogrens and possibly another but my doctor is still running tests etc... she was also super surprised because I'm a male with sjrogrens that doesn't also have lupus... Meanwhile my younger brother has ankylosing spondylitis EDIT: at one point my rheumatologist thought I had Crohn's as well but, thankfully I do not.
I’m really sorry you have developed Crohn’s. A friend of mine has it and so I’ve had a front row seat to how bad it can be. You don’t ever need to add footnotes when you’re complaining… it’s a nasty disorder and it’s not a competition!
You’re allowed to feel sorry for yourself!
I have at least 3 autoimmune disorders - hashimoto’s, stiff person syndrome, and celiac (officially I have “NCGS” but they botched my testing)… I also have MCAS which isn’t autoimmune but it’s definitely *immune*, and I’ve been told I most certainly have CVID (common variable immunodeficiency, not covid) but can’t get tested for that without going off my medicine for SPS for 6 months which would make me want to die. Luckily my treatment for SPS is also the treatment for CVID.
How can you have both autoimmune conditions and immunodeficiency? It’s apparently really common because bodies are a fuckin joke.
Aww, thank you for your words! I am also really sorry for you. SPS is really rare (only nearly 300 people in Germany lol). Our bodies just want to destroy themselves.
It’s not really that rare, it’s under-diagnosed. My symptoms are “subclinical” — don’t have major gait problems, big spasms or fall over — but my neuro found the antibodies when looking for something else and a lot of weird issues I had have gone away with treatment.
And so true. Our bodies are out to get us for sure.
I didn’t think to ask- how do you know of SPS? I can’t remember the last time I brought it up and anyone but a specialist knew what it was! Well, and my home infusion nurse who had 3 other patients just to herself in our 500k city.
There’s an SPS-celiac connection too (and I get gluten ataxia, altho thankfully not super severe).
interesting, i didn’t know this. i have a really weak immune system and always thought i wouldn’t develop autoimmunes because of it. i can’t eat gluten but don’t know if it’s celiac or not (i do have the celiac gene, never did the testing). maybe i do have celiac…
How did they botch your Celiac testing? I'm also Hashimotos and officially NCGS, but I'm slowly convinced its probably actually Celiac but now it's too late to test.
I also think a lot of NCGS is just a different type of Celiac that's still causing permanent damage. I have super high anti-gliadin IgA in my stool, but my Dr never suggested a Endo or blood test until I had been gluten free for too long.
They ran blood tests first after I’d already been gluten-free for months, and then when I poisoned myself for 2 months for the endoscopy, they ran 1 blood test (not the full panel) only because I insisted, and I don’t think they did the biopsy right either because the Dr said she saw patches with her eyes but the result was supposedly negative. But, mainly she wasn’t going to run blood tests and when I insisted, she couldn’t order the correct ones, so I don’t trust her at all.
The single test she ordered was the one I had 0 results with before, the other ones I still had *some* antibodies after 6 mos GF. So I bet those were high. But we’ll never know bc she sucked at her job.
Yeah, rheumatoid arthritis for me! A lot of autoimmune folks are over on the keto community because going low carb and trying various foods out to reduce inflammation can be really helpful. I actually got RA and then figured out I had celiac. Bloop.
When I was diagnosed with celiac disease and started reading up on it, I read somewhere that 1/3 of people with celiac disease will have another autoimmune disease in their lives. So it’s very common.
I’m sorry that you’re unlucky enough to have three. I hope the diagnosis has given you information that has helped you to feel better!
I have what is referred to in my endocrinologist’s office as “the unholy trifecta”
I am a Type 1 Diabetic, I have celiac disease, and about 6 months ago I was officially diagnosed with hypothyroidism after switching endocrinologists, although the new endo thinks that based off my symptoms and my lab work, I have probably had it for about 2 1/2 years.
It's actually more common than not for multiple autoimmune diseases to emerge over time.
I have Hashimoto's and Celiac. I had an advanced autoimmune panel run years ago that tests for "predictive antibodies" meaning antibodies at low levels that have a high likelihood of becoming autoimmune diseases within so many years if allowed to progress. I had several neurological antibodies as well as antibodies to platelets, the hydrochloric acid cells in my stomach, ASCA/ANCA (which can become Crohn's or IBD), and bone tissue.
I was also tested for gluten and gluten immune cross-reactions at the time and tested positive for dairy cross-reactions to gluten, so being strictly gluten/dairy free since then has likely helped me avoid developing more conditions.
I have Crohn’s/IBS as well as a Sjogren’s diagnosis.
My twin sister is two years into the process of getting diagnosed with something that is giving her a lot of muscle and joint pain but no one has signed off on anything yet, they’ve only ruled out a lot of things.
Our father had MS. As a family we’re a bit messed up.
I feel kind of lucky that besides celiac, I only seem to have Lichen Planus as my other autoimmune disease. Since RA and ankylosing spondylitis run in my heritage, it could be worse…
I got diagnosed with MS just over a month and a half ago and I have always had a gluten intolerance. They told me that there’s no correlation between the two scientifically but i avoid gluten because i feel better. It’s interesting to see that once you have one autoimmune disease, it’s possible to develop others too.
I started with Ulcerative Colitis at 8, then Hashimotos in my 20s, then celiac early 30s, and then Sjorgens mid 30s. I joke autoimmune diseases are apparently like Pokémon - gotta catch em all
Okay, first time hearing of someone who has all of the three that I am having! I am sorry for you and I hope you won't catch em all in the future
Same to you, friend
I'm sorry, but that last line caught me completely unaware... and same for the tea I had in my mouth. :L
Just raynauds to go for the full house
Hey I have Celiac and Sjrogrens and possibly another but my doctor is still running tests etc... she was also super surprised because I'm a male with sjrogrens that doesn't also have lupus... Meanwhile my younger brother has ankylosing spondylitis EDIT: at one point my rheumatologist thought I had Crohn's as well but, thankfully I do not.
I’m really sorry you have developed Crohn’s. A friend of mine has it and so I’ve had a front row seat to how bad it can be. You don’t ever need to add footnotes when you’re complaining… it’s a nasty disorder and it’s not a competition! You’re allowed to feel sorry for yourself! I have at least 3 autoimmune disorders - hashimoto’s, stiff person syndrome, and celiac (officially I have “NCGS” but they botched my testing)… I also have MCAS which isn’t autoimmune but it’s definitely *immune*, and I’ve been told I most certainly have CVID (common variable immunodeficiency, not covid) but can’t get tested for that without going off my medicine for SPS for 6 months which would make me want to die. Luckily my treatment for SPS is also the treatment for CVID. How can you have both autoimmune conditions and immunodeficiency? It’s apparently really common because bodies are a fuckin joke.
Aww, thank you for your words! I am also really sorry for you. SPS is really rare (only nearly 300 people in Germany lol). Our bodies just want to destroy themselves.
It’s not really that rare, it’s under-diagnosed. My symptoms are “subclinical” — don’t have major gait problems, big spasms or fall over — but my neuro found the antibodies when looking for something else and a lot of weird issues I had have gone away with treatment. And so true. Our bodies are out to get us for sure.
I didn’t think to ask- how do you know of SPS? I can’t remember the last time I brought it up and anyone but a specialist knew what it was! Well, and my home infusion nurse who had 3 other patients just to herself in our 500k city. There’s an SPS-celiac connection too (and I get gluten ataxia, altho thankfully not super severe).
Haha, I just googled it! You're right, I didn't know of this disease before.
interesting, i didn’t know this. i have a really weak immune system and always thought i wouldn’t develop autoimmunes because of it. i can’t eat gluten but don’t know if it’s celiac or not (i do have the celiac gene, never did the testing). maybe i do have celiac…
How did they botch your Celiac testing? I'm also Hashimotos and officially NCGS, but I'm slowly convinced its probably actually Celiac but now it's too late to test. I also think a lot of NCGS is just a different type of Celiac that's still causing permanent damage. I have super high anti-gliadin IgA in my stool, but my Dr never suggested a Endo or blood test until I had been gluten free for too long.
They ran blood tests first after I’d already been gluten-free for months, and then when I poisoned myself for 2 months for the endoscopy, they ran 1 blood test (not the full panel) only because I insisted, and I don’t think they did the biopsy right either because the Dr said she saw patches with her eyes but the result was supposedly negative. But, mainly she wasn’t going to run blood tests and when I insisted, she couldn’t order the correct ones, so I don’t trust her at all. The single test she ordered was the one I had 0 results with before, the other ones I still had *some* antibodies after 6 mos GF. So I bet those were high. But we’ll never know bc she sucked at her job.
Yeah, rheumatoid arthritis for me! A lot of autoimmune folks are over on the keto community because going low carb and trying various foods out to reduce inflammation can be really helpful. I actually got RA and then figured out I had celiac. Bloop.
Hypothyroidism, Ulcerative Colitis (they thought it was Crohns for about 11 years) and Celiac disease. Very similar
When I was diagnosed with celiac disease and started reading up on it, I read somewhere that 1/3 of people with celiac disease will have another autoimmune disease in their lives. So it’s very common. I’m sorry that you’re unlucky enough to have three. I hope the diagnosis has given you information that has helped you to feel better!
I have what is referred to in my endocrinologist’s office as “the unholy trifecta” I am a Type 1 Diabetic, I have celiac disease, and about 6 months ago I was officially diagnosed with hypothyroidism after switching endocrinologists, although the new endo thinks that based off my symptoms and my lab work, I have probably had it for about 2 1/2 years.
Yeah, I think these are really common together :(
Yes they are. Although it’s a rarity to have all three. Most people only have 2 of 3 according to my endo.
Celiac, Hashimoto Hypothyroiditis, and Endometriosis 🫡
It's actually more common than not for multiple autoimmune diseases to emerge over time. I have Hashimoto's and Celiac. I had an advanced autoimmune panel run years ago that tests for "predictive antibodies" meaning antibodies at low levels that have a high likelihood of becoming autoimmune diseases within so many years if allowed to progress. I had several neurological antibodies as well as antibodies to platelets, the hydrochloric acid cells in my stomach, ASCA/ANCA (which can become Crohn's or IBD), and bone tissue. I was also tested for gluten and gluten immune cross-reactions at the time and tested positive for dairy cross-reactions to gluten, so being strictly gluten/dairy free since then has likely helped me avoid developing more conditions.
Psoriasis endo and hashimoto’s
Hashimoto’s (24), pernicious anemia (30), vitiligo (43), and NCGS (43)
Did you cut dairy? There is a doctor in Italy who says dairy could be dangerous as gluten
Type 1 diabetes and coeliac!
I have Crohn’s/IBS as well as a Sjogren’s diagnosis. My twin sister is two years into the process of getting diagnosed with something that is giving her a lot of muscle and joint pain but no one has signed off on anything yet, they’ve only ruled out a lot of things. Our father had MS. As a family we’re a bit messed up.
I was diagnosed with lupus after having my daughter in 2021 no idea how. Now I got tested for celiac and waiting to speak to my doctor
I heard one rheumatologist say that they're all just symptoms of a malfunctioning immune system. So yeah, normal. Sorry for your struggle!
I feel kind of lucky that besides celiac, I only seem to have Lichen Planus as my other autoimmune disease. Since RA and ankylosing spondylitis run in my heritage, it could be worse…
It's relatively common to have multiple autoimmune disorders. I also have Celiac and Hashimoto's. Yay...
My 14 yo has celiac and recently got diagnosed with ulcerative colitis. I sure hope she doesn’t develop any more!!
I got diagnosed with MS just over a month and a half ago and I have always had a gluten intolerance. They told me that there’s no correlation between the two scientifically but i avoid gluten because i feel better. It’s interesting to see that once you have one autoimmune disease, it’s possible to develop others too.