Connective tissue auto immune

Hello @wottone, Welcome to Mayo Connect. I'm happy you found us. Connect is a great place to ask questions and learn what other Connect members with similar health concerns are doing for treatments. I have no medical training or background but do believe nutrition plays a large part in keeping us healthy. I started making changes in my diet after doing some searching and reading an inspiring story by Dr. Terry Wahls who was able to reduce her MS symptoms by making some drastic changes. Here is a link to a previous post with a TED Talk video she has done:
https://connect.mayoclinic.org/comment/70264/bookmark/?ajax_hook=action&_wpnonce=bdfe5b0dc1

I am also tagging a couple of other Connect members who have discussed diet related to autoimmune diseases. @larsona10, @kanaazpereira, @jimhd Do you have any diet suggestions you can offer?

John

Hi @wottone,

I'd like to add my welcome to John's, and also encourage you to view these discussions, related to your symptoms and diet concerns, on Connect:
– Autoimmune Diseases and Fatigue: https://connect.mayoclinic.org/discussion/autoimmune-diseases-and-fatigue/
– Undiagnosed auto immune disease: https://connect.mayoclinic.org/discussion/undiagnosed-auto-immune-disease/
– MCTD (Mixed Connective Tissue Disease): https://connect.mayoclinic.org/discussion/mctd-mixed-connective-tissue-disease/

I'd also like to introduce you to a few active members talking about connective tissue disorders. Please meet @jewel8888 @luladavis @regeanna @faithandlove @jimmorris900 @judeeo @lisaann03. I hope they can share their experiences with respect to diet. @lighthouseceliac, since you've shared some great insights about diet and health on Connect, do you have any suggestions for @wottone?

In the meantime, here's some information about Mayo’s Connective Tissue Disorder Clinic, which diagnoses and coordinates care for people affected with inherited or genetic forms of connective tissue disease: http://mayocl.in/2nMFAuW

@wottone, there are so many connective tissue disorders, and many overlap, so it's not an easy diagnosis by any means. May I ask, if you've had a large blood panel done to pinpoint possible conditions?

my Ana tests were positive and they are concerned about scleroderma due to my skin issues/inflammation and scleritis. The fatigue just seems to come with an auto immune disorder. I have learned to listen to my body and set up boundaries to protect myself. I also have used a point system that was developed by St Joseph hospital in London Ontario. It was developed for concussion patients to help them pace themselves. It is called Parkwood Pacing and can be found on line. It gives points for daily activities ie getting up and dressed is 3 points, talking on the phone is 2 points... when you reach your ceiling (mine was max 12 points when I started,)it was time to shut down and go to bed. Also helped with friends and family when I could say I had used up all my points for the day and needed to go to bed !!! As far as diet goes I concur with @larson10's emphasis on how important our diet is. I read " The Grain Brain" by Dr Permutter and it set me on a path to better diet and improved health. In short the grains of today are not the grains that our grandparents ate and we need to get back to the diet that they used. Food today is over processed and damaging to our gut. I eat fermented foods, organic foods and drink kambucha. I am grain/ gluten free. The paleo diet and no sugar no grains (nsng) movement also have great ideas for eating healthy. My b12 and iron levels have improved and my heartburn has disappeared. If I eat unhealthy food my rashes/fatigue/inflammation and heartburn return so eating healthy has made a big difference. I still suffer from fatigue if I get stressed or ignore my Parkwood points !! Would love to get a more specific diagnosis but in the last 6 months of eating healthy, avoiding stress and resting I have not gotten any worse. !!

You are an inspiration. Medical diets require great self discipline. Celiac Sprue has been such a life changing diagnosis. I always say if your life depends on eating a certain way it is a no brainer. But really not many have any self control because the American diet is completely addictive to say the least. Get Jennifer Esposito's new cookbook. It is full of information and all of her many years of the best recipes for all ways of eating great foods. Keep spreading the word!! So many never associate diet with these 300 symptoms of autoimmune disease.

Thanks for the recipe book info. Everyday is a battle to get out of bed but I find I am having more and more good days. Self care is soooooooo important. Learning to slow down and relax and advocating for myself has been hard. Realizing that I need peace and quiet and standing up to the opinions of those who don't understand auto immune challenges has helped a lot. Stay strong !!!

You are at the top of your game in this battle!!! Go with the day...no two are anything alike. The trick is to not tackle every little thing that comes along. Stay focused on yourself and that alone gives you the energy to help others.

Saludos, I have been advised by my Integrative Medicine doctor to eliminate all nightshades from my diet which is extremely difficult but helps a lot. No potato, chile, tomato, eggplant, etc. Also, he prescribed Omega 3 (fish oil) 4,000 mg a day, and 3,000 mg of tumeric a day (take with black pepper). For 2 years on this elimination diet, I definitely earned some relief! However, I have not been following this diet for the last couple of months. I just could not let another growing season pass without locally grown fresh tomatos and fresh roasted green chile from the Rio Grande Valley of New Mexico! The dominant cultural cuisine along with a new job cooking for a young Indian family their traditional dishes heavy on the nightshades, tomatos, eggplant, chiles, potatos, curries. I am paying dearly . . . I spent most of the weekend in bed in extreme pain all over my whole body, mouth sores, gastric distress, foreign objects in the eye sensation, even an ear ache! I am resolved to clean up my diet again starting today. As, the only thing I can control in this life, is what I put into my mouth.

Hello Lorraine (@lorrainechavez) - I'm with you on the not wanting to eliminate nightshades from my diet. I love fresh tomatoes and peppers so I guess it's fortunate I don't live where the really good stuff is grown. I did give them up for a couple of months and thought it helped reduce the inflammation from my polymyalgia rheumatica (PMR) but not enough to force me to completely eliminate them. They are no longer a staple in my diet but I do occasionally have them. You have reminded me of a saying I found out on one of the forums I follow:

Every time you eat or drink,
You are either feeding disease
or You are fighting it.
The choice is Yours....

Good luck on your resolve. Hope you will keep us updated on the progress and if it helps.

John

My name is Reagan and I have been diagnosed with "Mixed Connective Tissue Disease"

I went to take a nap 4 weeks ago and woke up paralyzed and unable to do anything but crawl to the front door to let the medics in to take me to the ER... my girlfriend is a MD and she suggested a high dosage of Prednisone 80mg for 3days then down to 60... I am now at taking 5mg and by Monday I will stop....

This course of action has allowed me to recover with full mobility..... she is not my Doctor for ethical reasons.... but I value her fine mind along with the 35 years as a doctor...

I am not sure what is coming next, but I have prepared myself by rejecting the fear that first overwhelmed me....

@reagan1mc Hi, Reagan. First, Welcome. 2nd, You have bought a tough one. MCCD is one of those that is typically mis-diagnosed or missed as the lab or MD just scoots on by, looking for something they know about. Besides that, there is a huge confusion on the matter of what is MCCD and what is Amyloidosis, Most of the online pages say MCCD is "like" Lupus or Crohn's or hATTRwt or something else, although most of the big labs now speak of MCCD as the beginning stages of Amyloidosis, and that many folks move through stages from MCCD to some form of Amy, SUCH AS... Lupus, Crohn's, ...... So the confusion in these descriptions and diagnoses is profound. If you read the stuff on the Mayo, Stanford, Wikipedia etc. labs, then read the MCCD You will probably think they are about the same disorder. And I think you will be right. There is a great book by Dr. Morey Gertz, of Mayo, Amyloidosis Diagnosis and Treatment, available from Amazon and others, that actually calls MCCD a mutation of Amyloidosis, and calls Amy a Connective Tissue Disorder. I say this because you will find that you will be treated the same. There are over 1000 mutations of the diseases, probably 2,000 actually. I was on Prednisone for mine, and it had no effect other than to make me sick like a hungover dog. Anyway, hang in there. I am not dead yet, and I have about 15 family members with various mutations of this stuff. You can live until you die of old age or a marathon swim. Just always take care of the little things that come along, like AFib, liver, kidney, spleen, brain, etc. And read my story at https://bit.Ly/1w7j4j8 Good to hear from you.