How do you cope with Mixed Connective Tissue Disease?

Hi, @wofmaria - welcome to Mayo Clinic Connect. Though some of the posts in this discussion on mixed connective tissue disease (MCTD) are a bit older, I'm hoping that members will return and offer some input on diet with MCTD to help the immune system fight off this disease. @bunnysammy @seanlroop @mnkennedy @powerofpositive @regeanna may also have some thoughts, as may @jessicanpayne.

While waiting for some of these members to join in, this Mayo Clinic information on MCTD may be helpful: https://www.mayoclinic.org/diseases-conditions/mixed-connective-tissue-disease/symptoms-causes/syc-20375147

Will you share a bit of your story with MCTD, @wofmaria? Is this something affecting you or a loved one?

Please read about or watch You Tube videos about the Specific Carb Diet and GAPS diet. For some of us what we eat has a huge impact on our immune system. An inflamed gut allows for undigested food particles to enter bloodstream due to leaky gut. One of the responders above mentioned the SCD and gave great advice and suggestions. Other thing I have done is purchase a juicer and drink diluted carrot/celery juice twice a day. Sometimes I juice a piece of ginger or turmeric root and add filtered water. I am proceeding cautiously with juices but think they help. I have eliminated all refined sugar. Only consume those coming from fruit and a little honey here and there. I am mostly dairy free but recently purchased a yogurt maker and made the 24 hour yogurt specified in the SCD book. Will start trying that very cautiously. One tablespoon a day to see how I react. Best to work with a nutritionist, though it took me three months to find one.

Thanks for the information. I have had mild symptoms of something going on for years. The first doctor told me it was all in my head. Ten years ago my mother was murdered in her home. At the same time my eldest was deployed to Iraq as a Marine. My youngest was in his senior year of high school. Hence, the stress set off a chain reaction in my body. My thyroid crashed and I gained 40 pounds within a couple of months. They finally got it regulated, but nothing I did could get the weight back off. About 6-7 years ago I went to the ER one night thinking I was having a heart attack. It turned out to be pericarditis. I spent 2 days in the hospital while they pulled fluid off my heart. I wasn't allowed to go back to work until the next week. Testing was done to decide why I got it and I was diagnosed with autoimmune disease. I tested positive for lupus and RA. I was started on medication, but they still weren't sure which autoimmune disease I had. Following tests were negative. Was it a false positive or are they negative because I'm now on meds. They got the pericarditis under control and added a heart specialist and a rheumatologist to my regime. A year later the pericarditis returned even stronger. The two doctors disagreed on my treatment, but finally my meds were adjusted and the pericarditis was brought under control. About 18 months after that I developed Raynaud's phenomenon. So a dermatologist was added as well as one medicine adjusted. It was brought under control. My heart specialist was able to help me lose the weight and I was able to get back in the gym. Everything started going well. Then I started having back issues and got back injections. About this time I switched rhuematologist and was diagnosed with MCTD. I did not understand until recently that it was my disease. The way he explained it I thought it was just an umbrella to say I have an autoimmune disease but they can't pin point which one. Then I tore the labrum in my hip and they did surgery to repair it. It was never the same and I kept deteriorating. In 2017 I had a L2 to S1 spinal fusion. My hip kept hurting badly and giving me issues. The arthritis in it grew immensely in one year and I had to have a hip replacement on May 29 of this year. It was fabulous and the pain was gone. 10 days into it, it literally ruptured. The doctor showed us the x-ray and said they've never seen anything like it as I literally lost my entire socket. They had to put in a cage to give me an entire new socket. They still can't figure out why it happened. A bone density test was perfect. Most agree it has to be something with my autoimmune disease. After this I once again have switched rhuematologist. That way most of my doctors are in the same network. I like this lady as she explains thing to me and now I understand that MCTD is my diagnosis. She added another medication to try to settle my system down and help with the nephropathy that I have from this fracture. The digestive disease specialist cannot get my stomach, etc. to settle down. There are days I feel pretty good and then days I'm just exhausted and ache in various places. I've been doing a lot of reading, but it's still hard to understand as it seems to be affecting everyone differently. I was wondering about diet. I used to do Atkins, and it works, but I just don't have the willpower anymore to maintain that. I just joined weight watchers, but not sure about it either. Are there certain foods that trigger issues? Are there things to eat that help? I take a couple of supplements and I have a string of meds. I used to be an outdoor person. My son and I usually go camping and hiking every summer, but I haven't been able to go for the last 3 years. I want my life back. I want to finish well, not be the little old lady sitting in the recliner crocheting all the time.

Thanks, I've been hearing about the GAPS diet lately. I will have to do some reading on it.

You have been through a lot and I think stress is definitely a trigger to these autoimmune issues. I wish you good health.

Hello. I am not officially diagnosed, but it has been suggested I may have MCTD with beginnings of Scleroderma (19 yo female). What are some questions you wish you would have asked when doctors were running diagnostic tests? Do you have specific antibodies for which you recommend to be tested? Specific data/ notes you wish you would have recorded about your symptoms? Scans that provided crucial informational?
Thanks in advance!

Welcome to Mayo Connect, @1corinthians926.

You are asking some great questions. Here is some information from Mayo's website that you might find informative, https://www.mayoclinic.org/diseases-conditions/mixed-connective-tissue-disease/symptoms-causes/syc-20375147. I'd also like to invite @wofmaria and @guthealth to this discussion.

Also, here is a link to a video presentation about Scleroderma. While it was shown in 2017, you might find it helpful,
https://connect.mayoclinic.org/webinar/video-qa-about-scleroderma/

I am going through it also.

Hi @jennifer2010, you'll notice that I removed your email address from the public forum. We recommend that you use the secure, private message function to share personal contact information to avoid getting unwanted spam. Keep in mind that by sharing here, you will help many.

It really helps to hear from others who have first-hand experience with MCTD. I really like the questions that @1corinthians926 asked. perhaps you can help answer some of them.
- What are some questions you wish you would have asked when doctors were running diagnostic tests?
- Do you have specific antibodies for which you recommend to be tested?
- Specific data/ notes you wish you would have recorded about your symptoms? Scans that provided crucial informational?

Hello, I’m researching mixed connective tissue disease for my husband. I am a member of the Joint Replacement group on Mayo Clinic. My husband has been suffering for 8 yrs.with pain that has affected several parts of his body. He is currently under the care of a rheumatologist. She has tested him regularly for markers for all sorts of diseases.Back in2012 he had bi lateral TKR, 2015 he had bi lateral hip replacement, 2016 he had 3 levels of neck fused, 2017, he had carpel tunnel done on both wrists. In 2018 he had a fall that caused a subdural hematoma, which almost didn’t end well! But he survived and so did I. All along he has been suffering SEVERE SEVERE pain in both wrists. He is on medication for this and also. B/P issues. It is apparent to me that his pain is increasing in frequency and severity. Does anyone suffer from such debilitating pain caused by MCTD.? And if so, what has been your experience and does anyone have a great doctor for said disease? Thanks. Irish283@irish283