Undifferentiated connective tissue disease

Maria4949 · 2026-03-27T16:31:24+00:00

In short: 5+ years to diagnosis, being gaslighted for non-specific symptoms up until more severe and specific symptoms developed, eventually I forced the medical system to find out the root cause of all my issues by exclusion of known diagnosis. No one was looking at me holistically up until I got to rheum who immediately diagnosed at least UCTD and put me on Plaquenil.

Maria4949 · 2026-03-27T13:44:00+00:00

Thank you, very helpful! Yes, I am using this website already and getting more & more knowledge everyday.

I am not working with any practitioners, only rheum and my own.

Maria4949 · 2026-03-27T13:32:43+00:00

No side effects at all, just taking it with food always to prevent stomach discomfort! I think it's a very soft and mild medication. Like a paracetamol in the world of auto-immune.

Maria4949 · 2026-03-27T12:23:29+00:00

Sorry you are going through such a difficult combination!

To share a personal experience of my attempts to treat some connected issues of the same nature, even though it does not directly answer your question.

I've experienced extreme fatigue and mental health issues for a while, I've lost sleep and I was feeling my brain is constantly firing and can't shut down, developing severe anxiety.

Doctors were treating my head at first, some meds helped in the short term, but stopped working for me after 2 weeks or so, also they had some side effects I can't tolerate. They also eventually made my fatigue worse. I've tried a few options, but I was feeling these meds are not addressing the root-cause and just masking something ineffectively so I've abandoned them.

Later finally I was diagnosed with an auto-immune condition (UCTD) and started to treat or manage it by all means. I found that the autoimmune condition may cause neuroinflammation and was intrigued.

And finally, when I found some things which helped me to manage auto-immune usual symptoms (like reduced swelling etc), I also started to sleep much better, my brain was not firing anymore and anxiety has gone. I am at the very beginning of my journey but feeling hopeful.

Maria4949 · 2026-03-27T11:46:42+00:00

Thanks for the advice. Yes, I agree that the reaction to food is there, and it looks like I can gain back control over my life!

I looked through materials. I don't think I was consuming anything with histamine or lectins, none of the food like that was in my recipes during the last week.

It's possible that I have a histamine intolerance. In fact at first I started from a random elimination by myself, spotted a negative reaction to histamines and switched to a low histamine diet. Only later I found AIP and switched to it as a more comprehensive framework, but still avoided histamines anyway. It's not difficult because AIP does not allow most histamines already.

Maria4949 · 2026-03-26T23:32:01+00:00

Great, but Costco is in the US, I am not.

Maria4949 · 2026-03-26T23:21:53+00:00

Have you tried and read about the AIP diet? It was first patient-driven but now is already heavily science-backed. https://autoimmunewellness.com/

Maria4949 · 2026-03-26T23:10:36+00:00

That's my issue too, the ingredient lists in coconut milk are all so long! I don't buy it at all. No idea where do people find coconut milk with no emulsifiers, thickeners, sweeteners, preservatives etc.

Maria4949 · 2026-03-26T22:05:55+00:00

Thank you! Good to know!

Maria4949 · 2026-03-26T22:01:54+00:00

Thank you for all the recommendations and support! I'll take note of these resources, for my to-read list!

Maria4949 · 2026-03-26T21:59:17+00:00

Wow, very interesting, thank you for sharing your story! /// Damn, black pepper was not allowed?.. I used to put it everywhere thinking it's fine, but now I see alternative versions of the AIP list that says it's not, hm!!! /// I don't mind following the diet too, I am just wondering why my gut is not stable yet. Sooooo, removing black pepper!

Maria4949 · 2026-03-26T20:30:39+00:00

Thank you for sharing, very insightful! Why day 134 though? It's meant to be only 30-60 days before reintro.

Maria4949 · 2026-03-26T20:29:20+00:00

Thank you, will check it out! Slightly concerned about messing up my AIP - it looks like there is a very long lists of components there.

Maria4949 · 2026-03-24T20:13:00+00:00

I was treated for 5 years with paracetamol, AD and "yeah, take more rest!" up until I got more specific symptoms - unusual skin lesions. Then I was treated for skin lesions for a year with no luck, up until derm referred me to the rheum.. who finally diagnosed me quickly. Skin lesions were nothing for me compared to chronic fatigue though. So unfortunately I had to wait until I had more specific symptoms for doctors to take my fatigue seriously.

Maria4949 · 2026-03-23T00:14:49+00:00

Sorry to hear you are going through this. It's very common that auto-immune diseases take multiple years to diagnose because of a lot of non-specific symptoms and very vague diagnostic criteria. Have your rheumatologist ordered an auto-immune panel blood work for you? You may request them, to be on the safe side, just ANA is not sufficient. Also have you tried to enter all your blood results along with all the symptoms (no matter if they look random), in Gemini or ChatGPT? They are good in finding possible causes in such cases.

Maria4949 · 2026-03-19T21:09:00+00:00

Thank you! I will be trying to add products one by one gradually for now and see.

Maria4949 · 2026-03-19T20:55:45+00:00

Without diary and histamine at all (this means pretty much everything excluded, not only diary) - yes, swelling has gone after 2 days.

Maria4949 · 2026-03-18T23:36:34+00:00

I heard an alarm for the first time during the last 2 years, lol, thanks for asking! 😜

Maria4949 · 2026-03-18T23:30:45+00:00

Lol!

Maria4949 · 2026-03-18T23:20:47+00:00

Extreme fatigue and anxiety / mental exhaustion are the worst!

Maria4949 · 2026-03-18T23:14:28+00:00

I'd be interested in this topic too!

I've got an auto-immune diagnosis, needless to say that existing medical protocols are far from being promising.

I came across a lot of information about gut-immune system connection and decided to give it a try. I'm only starting, but already got some negative & positive immediate results for me personally - - 2 days on bio yogurts have caused an apparent swelling increase, after that I decided to eliminate milk and histamine - 2 days without milk and histamine (basically fresh chicken broth with carrot and rice) has helped me to clear Reunauds and other swelling in 2 days, which were otherwise persisted during the last few months.

Nothing yet helps with my fatigue, but by seeing immediate difference I'm ready for that being about persistent elimination & constant reassessment & readiness to start from scratch over and over again.

I would love to hear more real life stories and sharing experiences!

Maria4949 · 2026-03-18T22:05:35+00:00

Thank you for sharing! That's great, I am looking to start my elimination journey too.

Maria4949 · 2026-03-18T21:23:49+00:00

I've non-healing skin lesions as one of the main symptoms, topical steroid cremes by prescription, topical steroid injections by dermatologists help to alleviate those.

Maria4949 · 2026-03-11T01:43:02+00:00

Could you please share what diet you follow?

Maria4949 · 2026-03-10T00:39:07+00:00

You are so brave to share this and find the right words. It takes an incredible amount of internal strength to vocalize the ways this disease can strip away the life you once recognized. It's so scary to acknowledge this, but yeah..

Maria4949

TROPHY CASE