Recently diagnosed with autoimmune disease - looking for support

Mils -
If in fact all of your symptoms are truly from an an unidentified autoimmune disease, learning to manage your symptoms is likely your best pathway forward.

But to develop this pathway, its important that you focus your efforts on trying to ‘connect the dots’.

I have had to deal with a cascade of viral triggered Celiac Disease symptoms for the last 40 years.

First, understand that if you do have an autoimmune disease, most ADs are not curable. It is a hard new reality to deal with - but it is important to try to control your emotions so that you can better understand how your symptoms are either connected and/or unknowingly added to based on your activities. And, once you get this understanding - you can develop as number of management techniques/tools you can use and you have a better chance to deal with your symptoms.

How to connect the dots: Over the years I have developed as many as 10 ‘autoimmune’ symptomologies that are structurally connected. And understanding the sequence of what each new persistent symptom was and how it connected to the previous new symptom was vital in creating my management pathway.

Although at its onset I did not appreciate how severe the damage that a viral infection can do. In retrospect, that viral infection clearly triggered a family history of CD on my mothers side - she was of Irish ancestry. And CD is a major problem of white Northern European populations - particularly the Scandinavian and neighboring countries. So your ancestry can play a role in your current medical issues.

Where to start: As the medical system learns more about the damaging effects of a viral infections - Vasculitis or inflammation of the body’s vascular vessels can be a significant issue. FYI - Covid is not a flu causing virus as much as it is a Vasculitis causing virus. And, which body parts or organs are damaged by a lack of adequate blood supply can take a while to develop. And, almost certainly will be identified as a major cause of what is now called ‘long covid’.

So, create a list of any unusual symptoms that you had during and immediately after your viral infection and the sequence each new symptom developed. And don’t limit that list to major new physical symptoms alone - as seemingly minor post infection symptoms - like fuzzy brain episodes, afternoon fatigue, new food reactions, rashes, loss of smell or taste, etc can be the footprints of what damage that viral infection may have caused.

Comment: You face a long slog to fully understand how the dots are connected and what tools you have to manage you new realities - BUT working with your MD’s, helping to get them educated, and reaching out for advice on this site are major steps in the right direction.
Chris47 -
PS - you might try the following as possible new tools: get and stay gluten free, switch to only organic food, if vegan start eating any food high in vitamin B12, take B and C vitamins supplements, use dermal patches with Cortisone ointment on localized pain areas, use ThermoCare heat pads to reduce joint and muscle pain.
At the MD level, get periodic CRP for a measure of inflammation and Cortisone blood tests for Adrenal functionality.

And above all, understand that it is imperative that you act as your primary advocate - as modern medical reality is that the old GP as your quarterback guiding your healthcare is no longer the norm!

Thank you Chris, I really appreciate your answer. This was the kind of support I was looking for. I have been diagnosed in March, although the diagnosis is still uncertain, they believe it is an autoimmune disease since I responded well to steroids and then plaquenil. Aside from the beginning, this is my first flare, and the pain is new and much worse than before so I became even more anxious thinking all possible explanations. The doctors don't really have an answer as to why the symptoms are coming back, why new and why worse, but it is great for me to find support from others who have gone through this before I did.
Thank you for all your advice, I am starting to try and connect the dots on my own since, as you said, I will end up having to advocate for myself

Mils -
You are welcome!

Once you have created your symptom sequence list of both of major and minor new symptoms, go to any number of Celiac Disease websites that list CD symptoms.

Compare your list to the websites’ lists and count how many on your list match the published lists. Note: keep in mind that different lists can use different descriptive words for the same condition and some sites have more complete lists than others - so write a list of as many of the different symptoms list items published to get a better comparison.

In my case, the first time I compared lists I had matches of about 50%. But the matches increased to about 80% for the more complete lists as I found more sites. Basically, Celiac foundations, Centers, and government sites usually have the most complete lists!

Finally, even if you only find matches for 20-40%, what is important is which matches you have! So a general symptom like fatigue can have multiple causes, while alternating diarrhea/constipation can be a strong CD indicator.

Above all keep in mind that there are two types of CD patients - Active CDers are about about 3% of the population while Silent CDers can be as much as 12-13%. Actives are usually more easily IDed -, while Silenters often take longer.

And, as much as having a high percent of matches is a good CD indicator, having a match of the sequence of the onset of symptoms is a strong indicator that you have CD and that the damage it has likely done to your body’s ability to function correctly has increased from the initial stages and may well continue to increase.

In my case during the 10 years from CD onset until I began to identify CD as a possibility, significant functional damage was done to various elements in that functionality. Enough so that I have IDed as many as 10 CD related symptomologies!

Good luck on your pursuit of understanding the what, why, and when of your medical challenges! And, keep in mind that once your exploration has highlighted a potential pathway, you will still need to be able to explain how you connected the dots to a number of MDs - until you can find a Doctor that not only wants to help deal with your symptoms but also their causes!
Chris47 -

I was actually tested for CD multiple times (once via biopsy and twice via blood work) and came back negative. Rheumatologist believe my autoimmune disease might be more joint/connective tissue/muscle related. Even so, hearing from anyone going through any type of chronic and uncurable disease, makes my experience a bit more validating and makes me feel a bit less anxious. So thank you so much for your insight!

You have been given a lot of good information by Chris47. I subtle symptoms off and on for years. Then after an emergency appendectomy, everything went south. By the time I saw my first rheumatologist I was a hot case of MCTD. I’ve done my research and worked with my “private”team. (Older daughter is a clinical pharmacist and the younger is an Occupational Therapist.) They are both into nutrition and have helped me with my diet also. I’ve learned to stay out of the sun and heat, dress warm in winter, TRY to de-stress and get plenty of rest. Good luck on your quest. 💜🦋

Please explain what MCTD is? Thanks

Hi, I’m very sympathetic to your situation. I’ve had RA and ILD and AFIB for about 8 years. I take Cellcept, and Plaquinil for the RA.
I found a supplement called MSM with Condrotin that helps with pain, MSM , is an Organic form of Sulfa. I also use the Topical cream available on Amazon.
These are two helpful products. I also use Tylenol daily.
The MSM also seems to give me a little energy.
I’ve suggested these two to product’s to friends an most say they are helpful.
I also
Make myself move, walking or using a recumbent bicycle, no sugar, bread, tomatoes, potatoes, peppers.
Do research, stay on this forum it’s encouraging and helpful. Don’t give up or isolate, get outside and look for a group in your community that you can join for support.
I wish you well, jilly

Welcome @mils. What a great question to ask, regardless of the actually autoimmune condition one has. I LOVE the response you got from @chris47 here: https://connect.mayoclinic.org/comment/735862/

Chris, your post should be required reading for anyone diagnosed with a new or unconfirmed autoimmune disease.

Answers were further augmented by experience and tips from @1950 and @jilliemo12345. @helent, you were right to call out the acronym MCTD. It stands for Mixed Connective Tissue Disorder. We have a few discussion about MCTD and UCTD here:
- MCTD (Mixed Connective Tissue Disease) https://connect.mayoclinic.org/discussion/mctd-mixed-connective-tissue-disease/
- UCTD: Undifferentiated Connective Tissue Disease: https://connect.mayoclinic.org/discussion/uctd/
- How do you cope with Mixed Connective Tissue Disease? https://connect.mayoclinic.org/discussion/mctd-265a2b/

I think @becsbuddy @tsc @marye2 @krcc may wish to add to this discussion.

@mils what are the next steps for you for confirming a diagnosis? Treatment? How are you?

The information you gave mils is so amazing! Thank you for responding!!

Diagnosed with MCTD last year. I guess I don't understand what a flare is because I am always in pain...yes, every day. I take HCQ daily and that saved my kidneys from certain death. I did have 3 rounds of high-dose/taper Prednisone, which worked great initially for relieving pain, but caused 40 lbs of weight gain and a painful buffalo hump (which has decreased after four months of no steroids). Can't try Methotrexate due to kidneys. Cellcept makes me nauseous and dizzy so I am going to try Myfortic. AIP and vegan diet hasn't helped nor has vitamin supplements (Bs, D3, magnesium). My heart, kidneys, digestive system, musculoskeletal system, and now liver are all taking a beating. But my lungs are good...the one set of organs that is supposed to be affected the most. I use a walker or wheelchair every day, so does this mean I am constantly in a flare? I wish I could offer advice but I could use some too.