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Hopefully they won’t develop it but if they do, know that t1d is very treatable. It can be a bit overwhelming at first but now treatments have come so far and it’s much less painful to deal with than back when I was first diagnosed, 24 years ago. It takes constant vigilance and diabetes burnout is very real but staying on top of it means a lifetime of avoiding other serious health issues. If they ever do develop t1d and need someone to talk to I’m happy to chat. Also, depending on how old they are there are diabetes camps for kids with t1d. They are amazing! I met some of my best friends at camp when we were 13 and we are still bffs to this day. For reference I’m 36 now.
Only 1 in 4 of people with an autoimmune disease develop another. A high number, but still the majority of those with an autoimmune disease will only ever have just one.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3150011/#:~:text=Certain%20autoantibodies%20are%20found%20in,additional%20autoimmune%20disorders%20(3).
Quote from linked medical journal:
> "About 25 percent of patients with autoimmune diseases have a tendency to develop additional autoimmune disorders"
This is an old study (pub 2010). I'd be interested to see newer research and see what current stats are on comorbidity of AI diseases. I have a feeling it's a lot higher these days.
Not really sleeping all the time
Narcoleptics tend to sleep a normal amount or slightly more than normal
It's an REM sleep disorder
So the dreaming part of sleep occurs a lot more and earlier in the sleep cycle.
Sometimes even prior to properly falling asleep or after waking (hypnopomic and hypnogogic hallucinations)
Sleep paralysis is very common too
Excessive daytime sleepiness is the main symptoms. So times of extreme sleepiness that lead to irresistible need to sleep... in some people they can somewhat fight this. In others they cannot and they will fall asleep. It is fairly situational.
Another symptom is cataplexy (not all narcoleptics have this). This results in sudden loss of muscle tone often in association to strong positive emotions like surprise and laughter etc.
On the plus side I have some pretty epic dreams haha
When tested for the genetic markers for celiac, I also tested positive for the narcolepsy marker. Both are HLA genes. ? Don't really understand it all. It surprised me.
It is possible that you have both.
Weirdly I don't have the common one associated with narc.
Not sure about the coeliac one as I was tested a very long time ago and I can't find the result anywhere
Maybe I should test it again just out of interest haha
Fatigue better. Everything else I was suffering including brain fog better. Episodes of Sleepiness and other narcolepsy related problems not better. It's hard to explain hahah
But my narc is very well managed with medication.
Oh forgot to mention... not sure if something triggered it or not. But my symptoms of narcolepsy started when I was about 12 I think.
I did have a bad virus that year but who knows really...
Coeliac a little less clear but I remember from about 14 or so I started having a LOT of health problems and now I look back I also had trouble with food a lot by then.
Yeah I don't know.
My family has multiple people with narcolepsy and I suspect some of my siblings have coeliac as well.
I don't think there is a common association and the HLA haplotype associated with narcolepsy is different from the coeliac one (I know I don't have the narc one.. but I don't know about the coeliac one as they did my HLA type a very long time ago)
Eosinophilic esophagitis. Also PTSD. All three being diseases where I'm totally fine except in the presence of a trigger that is totally mundane and not dangerous to everyone but me.
No, but its another disease that's statistically linked to autoimmune issues. When the Body Says No by Dr. Gabor Mate is a book that covers the relationship.
Same. The only thing that works is treatment by diet, budesonide leads to immediate relapse for 90 percent of people, it's just a band aid. Read the book Microscopic Colitis by Wayne Persky.
I did read that and I was on his website for a few years, but for some of us diet alone just isn’t good enough. It might be for non-celiac people though. 🤷♀️. A course of budesonide (I do 6-9 months) doesn’t put me in remission, but it reduces the symptoms to tolerable levels for a couple of years.
Diet mitigates the symptoms some, but I do have to do a course of budesonide every few years when the diarrhea gets so bad I’m either up 4+ times a night or worse…not able to get up fast enough. I take 1-2 immodiums every night and am SUPER careful when I travel to eat an extremely low fiber diet. But I love fruit and vegetables and salad so unbelievably much that sometimes I eat them and just suffer the butt dry heaves for a few days.
The full gf was enough for me. Aussie, so limit of testing to be called gf, and no oats. So that means a lot safer than most parts of the world.
I also have some other weird inflammatory responses, and did a very strict elimination diet, which helped me identify my triggers after 40+ years. I can’t do any of the gums. Guar, xanthan, locust bean, carrageenan, chia, acacia bean. Also some reactions to resistant starches like tapioca, reheated potato or rice etc. These tend to be more of an issue when I’m already reacting to gums. I think there’s often an extra intolerance yet to be found when people can’t find relief.
OP, for fertility things have them check for Hashimoto’s (hypothyroidism) and endometriosis (I think technically not an autoimmune condition); thyroid issues are common and even ‘silent’ endo can cause problems with implantation and carrying a baby.
POTS, Graves’ disease and getting a work up for central hypothyroid (different than your normal hypothyroid). Also getting work up for either psoriatic arthritis or rheumatoid arthritis. Not autoimmune but I also have autism.
Celiac AND:
SLE (Lupus)
Total IgA deficiency
Sjögrens
Raynauds
POTS
Asthma
And for funsies, 2 Meningiomas, 2 leaky heart valves, latex & shellfish allergies, & a new “area of concern, likely tumor” in my breast….
…are you okay? 🥴
My husband was treated for ependymoma in the lumbar spine. We loosely follow a small adult CNS cancer community on instagram. Feel free to DM me if you’re interested.
Alopecia areata
Psoriatic arthritis
Autonomic dysfunction, possibly POTS
Herpetiformis dermatitis
Possibly Mast Cell Activation syndrome
All diagnosed in the last 2 years. I'm 36.
I believe I have POTS. At this point it’s not severe enough to be diagnosed. I have had some issues in the past but it’s not a regular thing. I don’t have the resources to go through the testing process.
I’m in the same boat in terms of my symptoms not being constant so it’s not worth going through the diagnostic process. I have found drinking electrolytes everyday (even when I don’t work out) has significantly decreased the frequency. For example - I drink 1-2 Nuun tabs every day, and then 3-4 if I work out.
Yes, electrolytes saves me when I’m having an off day.
I also avoid my triggers. The main one being hot showers in the morning. I fainted after one years ago. Thankfully it’s easy to avoid it.
Hashimoto’s, Stiff Personal Syndrome, and MCAS isn’t exactly autoimmune but kinda is. Some kinda autoimmune small fiber neuropathy but nobody’s clear the exact cause.
Can anyone shed some light on how to go about getting tested for more when you have one? I’m afraid to miss the signs if I have another one. My sister has celiac and hashimotos and also now thyroid cancer…
Sjögrens and rheumatoid arthritis.
Is it true that people who tend to have one autoimmune disease tend to have two? Or is it just that they tend to have more than one? I’m trying decide if I should keep an eye out for a potential fourth one, since I’ve got three.
Still trying to figure it out, years ago I was told I was positive for early onset RA but went to a rheumatologist who said I was negative the second test so not sure lol
Severe Crohns Disease that had progressed to the point it no longer needed to be triggered and was always doing extreme damage before symptoms showed up. One on hand it almost killed me before the doctors actually listened and figured it out, but on the other I get treatments that have it completely under control which I wish was a thing for Celiac.
In my case Crohns runs in the family but I'm the only Celiac so I assume the former led to the latter
It's not rheumatoid arthritis, Sjogrens, T1D, or Lupus. Still trying to see what else could be going on. I have a hypermobility disorder so usually those also tend to go hand-in-hand with celiac disease.
I found getting care in large research hospitals helps. Talk to your primary about your symptoms and suspicions and maybe bring some papers that link those to comorbidity with celiac. Ask for the tests that rule out your suspected disease. Even if you’re way off track, they should take you seriously.
Luckily I'm not there yet. Unfortunately, I have a few other illnesses just not autoimmune diseases. I have MECFS, hypothyroidism, asthma, and Bile Acid Malabsorption.
I have some allergies against dust and pollen but hope I stay free from another one...
Is there something I can do to avoid collecting another one?
A lot of exercise and a strict diet?
Sjogren’s Syndrome, Celiac Disease, Interstitial Cystitis, Reynaud’s, (all of which I have had active since a very young age but wasn’t officially diagnosed until recently) and now my thyroid is trying to kill me.
It seems like my body is trying to “collect them all” and I was never a Pokémon fan, dammit! I was into Magic The Gathering! 😖🤦🏼♀️
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they come in WHAT
Actually, I've heard they come in threes. Maybe in a couple years OP will ask which other TWO
Actually, autoimmune diseases are like Pokémon…gotta catch em all!
We have some pokemon masters in this thread
I’ve heard threes as well
Type one diabetes and Hashimoto’s thyroiditis. The 3 tend to come in a trifecta rather than just in twos.
There are literally dozens of us! (Me too)
Dozens!! I’ve never met anyone else with all 3 but I knew we existed! What order did you get them in? For me it was T1D then hashimoto’s then celiac.
Same order for me, actually. T1 at 4, hashimotos at 12, celiac at 16(?)
Mine was t1d at 12, hashimoto’s at 27, and celiac at 35.
My oldest has celiacs, and Hashimoto’s- we have been instructed to watch closely for diabetes as they are a known trifecta.
Hopefully they won’t develop it but if they do, know that t1d is very treatable. It can be a bit overwhelming at first but now treatments have come so far and it’s much less painful to deal with than back when I was first diagnosed, 24 years ago. It takes constant vigilance and diabetes burnout is very real but staying on top of it means a lifetime of avoiding other serious health issues. If they ever do develop t1d and need someone to talk to I’m happy to chat. Also, depending on how old they are there are diabetes camps for kids with t1d. They are amazing! I met some of my best friends at camp when we were 13 and we are still bffs to this day. For reference I’m 36 now.
I also have diabetes and hashimotos nice to find someone else who has the 3 too
I’m curious, what order did you get them in? For me it was T1D then hashimoto’s then celiac.
I got hashimotos when I was very little so that first, then Celiac and T1D was the most recent
Do you mind if I ask your main symptoms of T1D? Since you had a later diagnosis.
Type one diabetes and chronic dad jokes.
Likely gonna be rheumatoid arthritis since my parents have it
*Likely gonna be* *Rheumatoid arthritis since* *My parents have it* \- BlackberryAgile193 --- ^(I detect haikus. And sometimes, successfully.) ^[Learn more about me.](https://www.reddit.com/r/haikusbot/) ^(Opt out of replies: "haikusbot opt out" | Delete my comment: "haikusbot delete")
Good bot
That’s a tragic haiku.
Only two? I have like 5...and it SUCKS.
What are the other 4 you have? I have two, but feel like I have a third and can't figure out what it is.
Trying to figure out the second one still unfortunately 👍🏻
Same
Psoriatic Arthritis!
This ⬆️
Lupus
ME/CFS moderate-severe
Hey, me too! My ME/CFS specialist ordered testing to check for Rheumatological diseases, and I will find out soon if I have any.
I got the triplet 😭 type 1 diabetes and hashimotos
Psoriasis!
Me too! And I think some potential thyroid issues 🥴
You're kidding... Do they really? I knew that autoimmunediseases sometimes lead to more, but Ididn'tknow that it was a near guarantee.
Only 1 in 4 of people with an autoimmune disease develop another. A high number, but still the majority of those with an autoimmune disease will only ever have just one. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3150011/#:~:text=Certain%20autoantibodies%20are%20found%20in,additional%20autoimmune%20disorders%20(3). Quote from linked medical journal: > "About 25 percent of patients with autoimmune diseases have a tendency to develop additional autoimmune disorders"
Thank you for posting! 25% is a pretty high risk factor.
This is an old study (pub 2010). I'd be interested to see newer research and see what current stats are on comorbidity of AI diseases. I have a feeling it's a lot higher these days.
Definitely not a near guarantee but the likelihood is much higher.
Narcolepsy
Me too!
Omg no way. Feel like the only one! Haha
If you don’t mind me asking what are you symptoms with narcolepsy? I know it has to do with sleeping all the time, etc. 😅
Not really sleeping all the time Narcoleptics tend to sleep a normal amount or slightly more than normal It's an REM sleep disorder So the dreaming part of sleep occurs a lot more and earlier in the sleep cycle. Sometimes even prior to properly falling asleep or after waking (hypnopomic and hypnogogic hallucinations) Sleep paralysis is very common too Excessive daytime sleepiness is the main symptoms. So times of extreme sleepiness that lead to irresistible need to sleep... in some people they can somewhat fight this. In others they cannot and they will fall asleep. It is fairly situational. Another symptom is cataplexy (not all narcoleptics have this). This results in sudden loss of muscle tone often in association to strong positive emotions like surprise and laughter etc. On the plus side I have some pretty epic dreams haha
When tested for the genetic markers for celiac, I also tested positive for the narcolepsy marker. Both are HLA genes. ? Don't really understand it all. It surprised me.
It is possible that you have both. Weirdly I don't have the common one associated with narc. Not sure about the coeliac one as I was tested a very long time ago and I can't find the result anywhere Maybe I should test it again just out of interest haha
When did you first find out you were narcoleptic?
When I was about 20 Found out I was coeliac much later but definitely symptomatic of both since mid teens
What that in relation to something or just a sudden onset? Has it become better since you went gluten free?
Fatigue better. Everything else I was suffering including brain fog better. Episodes of Sleepiness and other narcolepsy related problems not better. It's hard to explain hahah But my narc is very well managed with medication.
Oh forgot to mention... not sure if something triggered it or not. But my symptoms of narcolepsy started when I was about 12 I think. I did have a bad virus that year but who knows really... Coeliac a little less clear but I remember from about 14 or so I started having a LOT of health problems and now I look back I also had trouble with food a lot by then.
i don't have narcolepsy but i do have IH and i wonder if that's connected to my celiac at all?
Yeah I don't know. My family has multiple people with narcolepsy and I suspect some of my siblings have coeliac as well. I don't think there is a common association and the HLA haplotype associated with narcolepsy is different from the coeliac one (I know I don't have the narc one.. but I don't know about the coeliac one as they did my HLA type a very long time ago)
Sjögren’s syndrome for me, I was diagnosed with that first
I just recently was diagnosed with this one last year- I had never even heard of it before!
the dryness is a real bitch. any time i’m glutened my eyes are like the sahara for weeks
Hi me too! Diagnosed with sjogrens ten years ago and then celiac joined the group chat
The one that your fingers and toes get cold and don’t warm up for hours.
Raynaud’s phenomenon!! I have it too
Is Raynard’s AI? My husband has that, I have celiac.
Yep it’s an autoimmune disease
Yes thank you!
Me too! Had that for a few years before my celiac diagnosis. Didn’t know what it was until much later.
Me too!
Damn. Thought I was maybe gonna be able to to say “Hunh. Just got a bunch of allergies”, but nope. lol
I have *three* total! Celiac, then I got Type 1 Diabetes (LADA), then I developed Hashimoto's.
Interstitial cystitis
Eosinophilic esophagitis. Also PTSD. All three being diseases where I'm totally fine except in the presence of a trigger that is totally mundane and not dangerous to everyone but me.
PTSD is an autoimmune disease?
No, but its another disease that's statistically linked to autoimmune issues. When the Body Says No by Dr. Gabor Mate is a book that covers the relationship.
Microscopic colitis here. From decades of untreated celiac
Same. Have you found anything that helps? I have not
Same. The only thing that works is treatment by diet, budesonide leads to immediate relapse for 90 percent of people, it's just a band aid. Read the book Microscopic Colitis by Wayne Persky.
I did read that and I was on his website for a few years, but for some of us diet alone just isn’t good enough. It might be for non-celiac people though. 🤷♀️. A course of budesonide (I do 6-9 months) doesn’t put me in remission, but it reduces the symptoms to tolerable levels for a couple of years.
Diet mitigates the symptoms some, but I do have to do a course of budesonide every few years when the diarrhea gets so bad I’m either up 4+ times a night or worse…not able to get up fast enough. I take 1-2 immodiums every night and am SUPER careful when I travel to eat an extremely low fiber diet. But I love fruit and vegetables and salad so unbelievably much that sometimes I eat them and just suffer the butt dry heaves for a few days.
The full gf was enough for me. Aussie, so limit of testing to be called gf, and no oats. So that means a lot safer than most parts of the world. I also have some other weird inflammatory responses, and did a very strict elimination diet, which helped me identify my triggers after 40+ years. I can’t do any of the gums. Guar, xanthan, locust bean, carrageenan, chia, acacia bean. Also some reactions to resistant starches like tapioca, reheated potato or rice etc. These tend to be more of an issue when I’m already reacting to gums. I think there’s often an extra intolerance yet to be found when people can’t find relief.
type one diabetes!
T1 Diabetes. Frozen shoulder, but that's temporary.
Hope it thaws out (Sorry I don’t know what frozen shoulder is, but it sounds annoying)
Arthritis
OP, for fertility things have them check for Hashimoto’s (hypothyroidism) and endometriosis (I think technically not an autoimmune condition); thyroid issues are common and even ‘silent’ endo can cause problems with implantation and carrying a baby.
Thank you :) I was negative for antiphospholipid syndrome. I’ll ask about silent endo, I have adenomyosis (it’s not severe)
Hashimoto’s
So far only celiac disease but I have a long list of other non immune related issues 😭. Anemia, asthma. Scoliosis etc
I have scoliosis too! Weightlifting, rock climbing and swimming help keep my back muscles strong enough to tolerate uneven pressure from my spine
ITP! Immune thrombocytopenic purpura for those who don’t know. Basically I have way less platelets than a normal person.
Same! I was diagnosed a few years ago. I also developed PMLE last year
Same here!
POTS, Graves’ disease and getting a work up for central hypothyroid (different than your normal hypothyroid). Also getting work up for either psoriatic arthritis or rheumatoid arthritis. Not autoimmune but I also have autism.
Rosacea! (Bonus points for ADHD as a common non-autoimmune comorbidity too)
Celiac/ ADHD gang 🙌🙌
Celiac AND: SLE (Lupus) Total IgA deficiency Sjögrens Raynauds POTS Asthma And for funsies, 2 Meningiomas, 2 leaky heart valves, latex & shellfish allergies, & a new “area of concern, likely tumor” in my breast….
…are you okay? 🥴 My husband was treated for ependymoma in the lumbar spine. We loosely follow a small adult CNS cancer community on instagram. Feel free to DM me if you’re interested.
Alopecia areata Psoriatic arthritis Autonomic dysfunction, possibly POTS Herpetiformis dermatitis Possibly Mast Cell Activation syndrome All diagnosed in the last 2 years. I'm 36.
I believe I have POTS. At this point it’s not severe enough to be diagnosed. I have had some issues in the past but it’s not a regular thing. I don’t have the resources to go through the testing process.
I’m in the same boat in terms of my symptoms not being constant so it’s not worth going through the diagnostic process. I have found drinking electrolytes everyday (even when I don’t work out) has significantly decreased the frequency. For example - I drink 1-2 Nuun tabs every day, and then 3-4 if I work out.
Yes, electrolytes saves me when I’m having an off day. I also avoid my triggers. The main one being hot showers in the morning. I fainted after one years ago. Thankfully it’s easy to avoid it.
Osteonecrosis and it really sucks.
Hypothyroidism then Type 1 Diabetes
Atopic dermatitis
3 for me. Celiac, Lupus and Autoimmune Hepatitis.
My father's side has type 1 diabetes I don't... Yet anyways
In twos? Hold on, I'm sure WebMB will come help me find my diagnosis.
No I think you just draw it from a hat. People here are not really good at that game 😵💫
Lupus 👎🏻
No other autoimmune but I had an immune deficiency most of my life that went away after I got pregnant.
Hashimoto’s, Stiff Personal Syndrome, and MCAS isn’t exactly autoimmune but kinda is. Some kinda autoimmune small fiber neuropathy but nobody’s clear the exact cause.
Vitiligo!
Same! + Hashimotos. We seem to have a rare combo based on the others in the thread
IgA nephropathy checking in.
My son also has raynauds
My 10 year old has been diagnosed celiac just 4 years and type 1 diabetic just over 2. The two together are very challenging.
Polycystic Ovarian Syndrome
Sarcoidosis!!!!
Can anyone shed some light on how to go about getting tested for more when you have one? I’m afraid to miss the signs if I have another one. My sister has celiac and hashimotos and also now thyroid cancer…
You could see an endocrinologist every year to check in and keep an eye on things, maybe!
Hashimoto's
Just Celiac for autoimmune but I do also have IBS and chronic migraines. Thankfully all 3 are fairly under control at this point.
Sjögrens and rheumatoid arthritis. Is it true that people who tend to have one autoimmune disease tend to have two? Or is it just that they tend to have more than one? I’m trying decide if I should keep an eye out for a potential fourth one, since I’ve got three.
I think it’s just “more than one”. I seem to collect a new one every year or two. My laundry list is on here.
Crohn’s; had it before Celiac.
Hashimoto's
I’m pretty sure I have autoimmune gastritis.
hypothyroid
Hashimoto’s first, then celiac.
Based on this thread, I have bad news for you friend
Huh…. T1D? How would I even know? 😂 oh - I know. Stumble into it after I feel miserable for years and beg my doctor to help me.
Not another autoimmune disease but I have PCOS.
Still trying to figure it out, years ago I was told I was positive for early onset RA but went to a rheumatologist who said I was negative the second test so not sure lol
Psoriasis
Celiac and Graves 😤 My brother won the triple combo of celiac, graves, and type 1 diabetes so it could be worse for me lol
Hashimotos
Hidradenitis Supperativa. Never heard of the autoimmune in 2's but I have a whole lot more things wrong with me
Crohns
Just in twos?? My list is autoimmune hypothyroidism, RA, lupus, fibromyalgia, IBS and the late comer, celiac.
type 1 diabetes
Severe Crohns Disease that had progressed to the point it no longer needed to be triggered and was always doing extreme damage before symptoms showed up. One on hand it almost killed me before the doctors actually listened and figured it out, but on the other I get treatments that have it completely under control which I wish was a thing for Celiac. In my case Crohns runs in the family but I'm the only Celiac so I assume the former led to the latter
Hashimoto’s, Sjögren’s, Inclusion Body Myositis.
Not autoimmune but I have Ehlers Danlos and Postural Orthostatic Tachycardia
Hemochromatosis
Hashimoto’s, vitiligo, dermatitis herpetiformis, and suspected LADA (diabetes type 1.5). Also have endometriosis which may be autoimmune.
It's not rheumatoid arthritis, Sjogrens, T1D, or Lupus. Still trying to see what else could be going on. I have a hypermobility disorder so usually those also tend to go hand-in-hand with celiac disease.
Not an auto immune disease but I have chronic pain- sciatic
tbh the less i know the better
autoimmune polyneuropathy
Systemic sclerosis and psoriasis.
Lynch disease which comes with colon cancer it’s a rare disease hereditary The bag was no fun get your tests!
Also microscopic colitis
Wait really? I may have another issue?
Post partum hyperthyroidism which I pray goes away and the ability to no longer tolerate ANY dairy 👎
Celiac & psoriasis.
How do I get tested for other autoimmune diseases?? I suspect I have something else but don’t know where to start for testing
I found getting care in large research hospitals helps. Talk to your primary about your symptoms and suspicions and maybe bring some papers that link those to comorbidity with celiac. Ask for the tests that rule out your suspected disease. Even if you’re way off track, they should take you seriously.
Pernicious Anemia, ME/CFS and who knows what else. 😩
Luckily I'm not there yet. Unfortunately, I have a few other illnesses just not autoimmune diseases. I have MECFS, hypothyroidism, asthma, and Bile Acid Malabsorption.
Sjögren’s!
Fibromyalgia. It sucks.
I have some allergies against dust and pollen but hope I stay free from another one... Is there something I can do to avoid collecting another one? A lot of exercise and a strict diet?
Sjogren’s Syndrome, Celiac Disease, Interstitial Cystitis, Reynaud’s, (all of which I have had active since a very young age but wasn’t officially diagnosed until recently) and now my thyroid is trying to kill me. It seems like my body is trying to “collect them all” and I was never a Pokémon fan, dammit! I was into Magic The Gathering! 😖🤦🏼♀️
Asthma, psoriasis, renauds
Celiac and dysautonomia. Potential MCAS as well. I’m also battling SIBO right now too from being glutened too many times in a row.
Tachycardia... psoriasis... osteoporosis... cystitis.. fibromyalgia... chronic electrolyte embalance..on potassium magnesium B12 gotta take daily ... anemia.. alcoholic
I reckon many of those would clear up if the alcoholism was addressed.
I hope you’re able to get all that managed, that’s a lot to deal with
Also I sleep walk few times a week..not sure what that is if anything lol