1. < Autoimmune Diseases

Undifferentiated Connective Tissue Disease

Posted by marymaryoregon @marymaryoregon, Apr 11, 2023

Autoimmune diseases are tricksy. Symptoms can come and go unexpectedly, test results aren’t always super helpful, so much about diagnosis relies on an individual’s judgment, and some of them have stupid names like “undifferentiated connective tissue disease” (UCTD).

UCTD doesn’t have an agreed upon criteria for diagnosis, but many providers and researchers use a definition of a positive ANA test for at least 3 years plus at least one symptom of a “defined” connective tissue disease (lupus, RA, Sjögren’s, scleroderma).

Some people with UCTD will eventually have enough symptoms (or positive test results) to change the diagnosis to lupus, RA, Sjögren’s, etc. A few people will stop having symptoms altogether. But the majority of people with UCTD will continue with that diagnosis.

I’d love to hear more about your experiences as I’m at the very beginning of my journey with UCTD. Has anything helped you in your day to day? How do you explain your diagnosis (or maybe/kind-of/might be diagnosis) to your family and friends? Does anyone want to help create some kind of patient support/awareness group or website or have any suggestions for existing groups or websites out there?

Interested in more discussions like this? Go to the Autoimmune Diseases Support Group.

carolinlv | @carolinlv | Jul 25 10:48pm
In reply to @ebero "Gosh, I feel like I'm late to the party.....all the posts are from 2023! I was..." + (show)
@ebero

Gosh, I feel like I'm late to the party.....all the posts are from 2023! I was Dx with UCTD yesterday. For symptoms, I could cut and paste @marymaryoregon's post, they are so similar.
I told the rheumatologist that for all these years I thought I just had a collection of problems--saw an eye doctor for extreme dry eyes, used creams for dry skin, saw an ENT because I had trouble swallowing and a constant sore throat that turned out to be caused by GERD. Had constant stomach troubles that improved as I veered towards GF and the DF lifestyle. Saw my GP when I started hypothyroidism years ago, and for arthritis in knees and hip recently. I saw a hand specialist for my stiff hands..... Only after falling twice and getting referred to a neurologist for balance issues (and ultimately SFN) did I learn that I have something I've never heard of that could be causing it ALL! Go figure. I have high ANA, low platelets, tested positive for both lupus and RA, but don't really have either of those.
My GP put me on the Auto Immune Protocol diet and that has made a big difference with the neuropathy. My hands and feet don't burn and buzz as much now, but they are clearly worse if I stray into processed sugar, or ingest too much natural sugars (fruit.) Caffeine also seems to be a trigger, as does peanut butter. I would be interested in talking to anyone about this. And, how do we deal with having a problem that is largely invisible? People really do think you're making it up and my discoveries about food sensitivities are treated with scorn (by my husband) and disbelief (by everyone else.)
Thanks for listening. 🙂

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It doesn’t look like you’ve gotten any help with your questions.☹️ I have them also! I just got tests back that indicate I have SLE. I’m 72 years old and this comes as no surprise. My 37-year-old daughter has scleroderma. She started with a lupus diagnosis, which then changed to a mixed connective tissue disorder diagnosis and they have now landed on scleroderma. Her problems surfaced for the first time after the birth of her six-year-old son. She was asked early on by every doctor she saw if there was any autoimmune history in her family. She always responded no, though it had to come from somewhere. Well, it appears it came from me😭 I also suffer dry eye (Crazy how uncomfortable something that sounds so simple can be!), GERD, extremely dry skin, type two rosacea, and neuropathy. Honestly, that’s all I can remember right now, but I know there’s more. Because I don’t look physically ill, I know my husband is tired of my complaints and my friends and family don’t understand why I have to cancel plans at the last moment because I just don’t feel well and can’t really say why. Does any of this sound familiar? I’ve been reviewing all of my test results since I received them this afternoon. I know a call will be coming from my doctor any day now to go over them. One thing I can tell you for sure, your thoughts on food sensitivities are spot on. Because my daughter has suffered horribly, she has done a ridiculous amount of research. She changed her diet totally to try and fend off medication for as long as she could. She went completely plant-based for a year and had much less inflammation and pain. She did it as long as she could, but finally had to give into medication. Meal prep also became untenable with a husband and two children. They did not want to eat her cashew based sauces!🤢 so you are not crazy! What you put in your body has a huge impact on how much inflammation and pain you have. I hate the way these little boxes let me type so I will stop here and we can converse more hopefully! I’m sorry we’re both going through this! I have watched my daughter decline over the last five years and it breaks my heart. I hope we can all find the help we need.❤️

REPLY
1 reply
ebero | @ebero | Jul 26 5:47am
In reply to @carolinlv "It doesn’t look like you’ve gotten any help with your questions.☹️ I have them also! I..." + (show)
@carolinlv

It doesn’t look like you’ve gotten any help with your questions.☹️ I have them also! I just got tests back that indicate I have SLE. I’m 72 years old and this comes as no surprise. My 37-year-old daughter has scleroderma. She started with a lupus diagnosis, which then changed to a mixed connective tissue disorder diagnosis and they have now landed on scleroderma. Her problems surfaced for the first time after the birth of her six-year-old son. She was asked early on by every doctor she saw if there was any autoimmune history in her family. She always responded no, though it had to come from somewhere. Well, it appears it came from me😭 I also suffer dry eye (Crazy how uncomfortable something that sounds so simple can be!), GERD, extremely dry skin, type two rosacea, and neuropathy. Honestly, that’s all I can remember right now, but I know there’s more. Because I don’t look physically ill, I know my husband is tired of my complaints and my friends and family don’t understand why I have to cancel plans at the last moment because I just don’t feel well and can’t really say why. Does any of this sound familiar? I’ve been reviewing all of my test results since I received them this afternoon. I know a call will be coming from my doctor any day now to go over them. One thing I can tell you for sure, your thoughts on food sensitivities are spot on. Because my daughter has suffered horribly, she has done a ridiculous amount of research. She changed her diet totally to try and fend off medication for as long as she could. She went completely plant-based for a year and had much less inflammation and pain. She did it as long as she could, but finally had to give into medication. Meal prep also became untenable with a husband and two children. They did not want to eat her cashew based sauces!🤢 so you are not crazy! What you put in your body has a huge impact on how much inflammation and pain you have. I hate the way these little boxes let me type so I will stop here and we can converse more hopefully! I’m sorry we’re both going through this! I have watched my daughter decline over the last five years and it breaks my heart. I hope we can all find the help we need.❤️

Jump to this post

Thank you for your reply. My 33 year old daughter also has several autoimmune related problems, and was diagnosed before me. Hope you both find some answers and solutions. I’m doing well on the AIP diet and hydroxchloroquine. (That’s a bad one to start young, since it can lead to other problems, I’m not advocating it, just reporting for myself.)
Take care, ebero

REPLY
1 reply
carolinlv | @carolinlv | Jul 26 11:06am
In reply to @ebero "Thank you for your reply. My 33 year old daughter also has several autoimmune related problems,..." + (show)
@ebero

Thank you for your reply. My 33 year old daughter also has several autoimmune related problems, and was diagnosed before me. Hope you both find some answers and solutions. I’m doing well on the AIP diet and hydroxchloroquine. (That’s a bad one to start young, since it can lead to other problems, I’m not advocating it, just reporting for myself.)
Take care, ebero

Jump to this post

I was doing some research on the AIP diet last night. I will do whatever I need to, but that one does not look easy! I have a really bad back and it’s difficult for me to do a lot of meal prep. Thanksgiving dinner is a two day event for me.☹️ so standing at a counter preparing some of the things I’ve seen is not something I’m looking forward to. Any easy tips you can share?

REPLY
ebero | @ebero | Jul 26 3:41pm

Greetings! I have lots of easy AIP ideas. And with the heat of summer, I do most of my cooking in the toaster oven or crock pot. Sweet potatoes are my go-to easy food item. Rinse, place on foil in toaster oven, 1 hour at 350F. Sweet potatoes are very versatile and portable. They make great travel food since they don't require refrigeration during a road trip. They are also great for bulking up a smoothie.
I spend more time making smoothies than any other food item. I use unsweetened coconut milk (the kind in the milk section of the grocery store,) unsweetened coconut milk yogurt, spinach, a sweet potato if I have one baked and already cold, and frozen bananas or other frozen fruits. Plus, a few spoonfuls of flax seed for fiber and a sprinkle of cinnamon and maybe a teaspoon of vanilla flavor. Process and enjoy!
Another easy food is tuna fish in the tear-open packets. I carry a few in the car in case I need a fast food meal. Tuna on a salad is great for greens and protein. I have oil and red wine vinegar on the table all the time now.
Chicken in the crock pot: slice an onion, one carrot and one stalk of celery, place in crock pot with a teaspoon of salt and 2-3 skinless chicken breasts. Cover with water and set on high for five-six hours. Ta da! Cooked chicken ready for any recipe. I like to chill it and then use as chicken salad: cube chicken, add minced celery, grapes, and then other items as you can tolerate them: tiny tomatoes, green pepper and/or goat cheese (none of those are on the AIP diet.) Mix with a spoonful of coconut milk yogurt and a sprinkle of seasoning--can be salt-free. Serve on lettuce. Don't throw out the chicken broth. It can be served in a mug as a hot drink or frozen for future recipes. You can also make chicken soup by adding more sliced carrots and more onions to the crock pot when you start. Hope this helps, ebero

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