Multiple Autoimmune Diagnosis?

#1

So, I’m wondering how many of my fellow type 1’s are carrying multiple autoimmune diagnoses, and when they started compiling?

I’ll go first…
Diagnosed age 9 with Juvenile onset type 1 Diabetes Mellitus. Suffered with Eczema since age 12 (2nd autoimmune). Chronic fatigue sometime in my 40’s. Fatty liver at age 45. Lupus at 52. (Although it was present for years but Not Diagnosed). Have been working and managing with all.

Thankfully this past year things have turned a corner and I think I’ll be preventing adding more terms to my chart, but curious how common is this?

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#2

I think it’s very common to have multiple autoimmune conditions. It may be more uncommon to have a single autoimmune condition and never develop a second.

I could list at least 10 immune-mediated conditions, ranging from minor to life-threatening, I’ve been diagnosed with from about age 4 until now (late 30s). Some are straightforward autoimmune conditions, some are straightforward allergic conditions, and some are somewhere in between that researchers are still trying to figure out. A couple, though serious and present for years, have thankfully gone into remission or resolved completely (for which each is known to do; no miracles here). I’ve pretty much resigned myself to the fact that I’ll probably develop more immune conditions in the future.

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#3

Yes. I’m hearing that. Not sure why my medical teams ever mentioned it. The one I’m most happy has disappeared from bloodwork and skin is the Lupus. Simple changes made all the difference. :hugs:

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#4

It is interesting this topic came up as my doc and I were talking about this last week.
I have sarcoidiosis, vitiliga, tested for lyme multiple times, now being tested for celiac and RA( rheumatoid arthritis). I have had these diseases for over 30 years

#5

Wow! Did any of those LYME tests come back as positive?

#6

No lyme disease. I do not think I have celiac disease either based on my research and internet medical degree

#7

T1D - 44 years, RA - 19 years, Ankylosing Spondylitis (AS) 6 years. Check out this organization for more on multiple autoimmune diseases.

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#8

Interesting, thanks

#9

I am a TD2 but have three autoimmune disorders: Hashimoto’s Thyroiditis, Celiac Disease and recently, Chronic Autoimmune Gastritis. I am doing my best to ward off additional AI issues by following a LCHF diet and stringently avoiding processed foods.

I base my health on how I feel and my lab results. The LCHF diet keeps my blood meter happy and Gluten Free non-processed diet has put my celiac disease and Hashimoto’s in remission (recent intestinal biopsies revealed a healed small intestine and I no longer have an enlarged thyroid or nodules). My Gastritis? I am still trying to determine the triggers. Falling off the LCHF wagon may be a factor or stress.

My goal is to prevent another diagnosed autoimmune disorder by diet, exercise and plenty of research.

#10

Yes multiple here. Type1, hashimotos, asthma, raynauds, ezcema, fybromyalgia, something like celiac although I did not test positive yet maybe due to stopping gluten for several months before the last test, ocular rosacea and maybe more. I have arthritis symptoms and my grandfather had ra, but tests are neg currently. Stopping gluten and grain has not helped my hashis, I need meds for that. The autoimmune attack in that disease continues apparentlly even with meds although meds can slow it and diet etc. my thyroid levels are better while antibodies are higher but most importantly bg management is better with the thyroid meds.

#11

My Hashimoto’s has improved, but it was long damaged before I got my celiac disease diagnosis. I will be on thyroid hormone replacement for the rest of my life even though my nodules and enlargement are gone. I think Rosacea is linked to thyroiditis. In any case, I also have ocular Rosacea. When it flares, I can not use my contacts.

I have had a few episodes of autoimmune hives that last about six months. My allergist thinks they are related to Hashimoto’s, but I think it is due to celiac disease (when flaring).

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#12

I’ve had random hives on and off for years and was going crazy trying to figure out what I was reacting to, assuming they were related to allergies. My allergist says they’re an autoimmune condition. I think that like other autoimmune conditions, they can probably be connected to a tendency towards autoimmune conditions in general and not liked to any one specific condition.

#13

Type 1 and RA -both in my 20s.

#14

That is good your goiters resolved at least. I don’t have that but I have trouble swallowing etc. scan of thyroid was grainy etc. I also feel that all these things are related and flares often involve more inflammation in my eyes, rashes, itching, inflammation in my whole body, which was happening leading up to type 1 diagnosis. I am currently on the verge of another ai diagnosis which was mentioned in the past of interstitial cystitis. Oddly enough except for eliminating acid foods like vinegar etc for my gerds or gluten/ grains, diet does not help me at all.

I do several things for dry eyes in case they may help you. Restasis, freshkote eye drops, preservative free moisture drops, steroid drops for flares, ocusoft and hypochlor eyelid wash, tranquil eyes masks with foam moisture pads when sleeping and in the past, motorcycle goggles when I did not have to wear glasses. Humidifiers etc. I tried contacts but they got stuck in my eyes the first week and I scratched my eye trying to get one out which had fallen out already. I ended up in the er. I am planning to try again though because glasses are awful for me.

#15

Me too. I had similar problem with contacts

#16

Where did you get this mask? I have problems with dry eyes and have been told by my ophthalmologist to use artificial tear drops four times a day in addition to Patanol (allergy) eye drops as needed. Even with doing that, at night my eyes frequently get so dry and irritated that it wakes me from sleep and just pours tears down my cheek when I get up. Extremely annoying. Regular sleep masks do nothing for me (I thought they might help in case dust mite allergies are contributing), but something like this may help. I’ve wondered if Graves’ contributes to my dry eye issue because I never had major problems until I was diagnosed, and I’ve read Graves’ antibodies can attack the eyes and thyroid separately or together.

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#17

Yep-it is prolly graves. Hashis for me and occular rosacea and who knows what else. Jen, you should do all the things I am doing.

The thing that helps me the most has been Restasis so I would try that. Since it can cause inflammation my eye doctor had me use a steroid drop before I put the Restasis in for a month and then my body adjusted to it. At the time I was waking up several times a night with my eyeballs totally dried out putting drops in.

I wake up anyway with the blood sugar etc but this was really bad- he was worried I was going to get serious damage to my eyes- I had signs of damage already. So that was when I started on Restasis. Now I still have flareups but I actually feel tears in my eyes again- just great.

Fresh Kote is a must too, you can purchase it at their website. It is expensive but it is totally worth it. It is the only one that really helped me at all although I still use the single generic ones that have no preservatives. There is a preservative free version of FreshKote now too. Freshkote at night after restasis before tranquil eyes. During the day I use the single vial drops as needed.

Tranquil eyes are made by eye eco, you can get a kit on amazon too. I am very sensitive but I am able to sleep with these. This helps a lot because it keeps your eyes closed and moist overnight.

I suggest a steroid drop when needed instead of allergy drops because they dry your eyes out. Drink lots of water and clean your lids and brows with those washes too.

http://ww.freshkote.com/

https://www.eyeeco.com/tranquileyes-travel-and-sleep-kit-blue-dry-eye-sleep-mask.html?cat-id=60&gclid=Cj0KCQjw_r3nBRDxARIsAJljleEEfBEttt8CzT_dlDzOuwFsU-8uiHf7SSJPnlllwQLGx6mndSd7gAsaAscUEALw_wcB

#18

Thanks for all the suggestions. I’ll check them all out and see whether they’re available here. I looked at the Eye Eco page and am definitely buying one of their products, though I’d like one I can also use during the day if needed, so I’ll take a look around their offerings. Hopefully everything is available here, particularly the medications.

I used steroid drops once after eye surgery and my understanding was they can’t be used long-term because they can lead to side effects like cataracts (which I already have) and high eye pressure (which I’ve had in the past). But I will ask about changing to a type of allergy drop that won’t dehydrate my eyes. I think it’s mostly antihistamines that cause dehydration. The eye drops I take are a combined antihistamine and mast cell stabilizer, so I’ll see if I can change to one that’s just a mast cell stabilizer. Though I also take oral antihistamines daily, so I’m sure that may contribute as well.

Do you see an ophthalmologist or optometrist for your dry eyes? I see both, but I have a feeling that my optometrist would be more interested in helping me with these issues. My ophthalmologist did say that he could see my eyes dry through his equipment, but didn’t say anything about damage, although I’ve had a severe corneal abrasion in the past (I very nearly ended up in emergency) and I was warned after it healed to use gel drops if my eyes felt dry and gritty, so I do think there’s a potential for damage there. I’ll probably make an appointment with my optometrist to discuss this with him, and maybe my GP as well if my optometrist can’t prescribe drops.

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#19

I would def go to an ophthalmologist Jen, they usually know more and they can rx anything. I go to a retinologist and an Opthalmologist. The r does not do rx glasses which I need. I had damage to my vision during dka, my vision went totally blurry and then had 4 rx as it recovered but it never went back to what it was so I need glasses all the time now.

My eyes and my inflammation elsewhere in my body were some of the symptoms leading up to type 1 / Dka. Going on insulin helped but it didn’t get rid of the dry eye, it gets worse with bg flutuations highs etc too. I hope maybe restasis can help since you can’t use steroids. Def try freshkote and the eye washes, fresh kote is much better than an allergy drop.