1. < Autoimmune Diseases
Mentor

Food for Thought - Why so many Autoimmune Diseases?

Posted by John, Volunteer Mentor @johnbishop, Jan 29, 2018

Let me start by saying change is not easy and I am still looking for answers. Over the years I have used a myriad of excuses for not eating healthy - but at some point I have to take responsibility for my choices. For me giving up fast food was really hard and to be honest I think about it when I'm bored so I try to keep my mind occupied. I like learning as much as I can about my health and using natural food and supplements when possible to fix what ails me so to speak. I ran across a short TED Talk by Dr. Terry Wahls - "Mind your Mitochondria" that makes a lot of sense to me and strengthens my resolve to make changes in my eating habits.

What do you think? Can we change?

John

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

alpineir | @alpineir | Feb 20, 2018
In reply to @jigglejaws94 "Inflammation, inflammation, inflammation --- is the root of autoimmune disease. We have to continue to get..." + (show)
@jigglejaws94

Inflammation, inflammation, inflammation --- is the root of autoimmune disease. We have to continue to get a handle on this. Diet is a huge factor.

Jump to this post

Agree Agree Agree....also gluten is a source too. Gluten Free is the way to go. Gluten causes inflammation

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alpineir | @alpineir | Feb 20, 2018
In reply to @darlia "We agree... Diet and nutrition. I started a couple of months ago to mostly eat a..." + (show)
@darlia

We agree... Diet and nutrition. I started a couple of months ago to mostly eat a Vegan menu

Jump to this post

Moderation of Vegan though. You can occasionally add your animal proteins too. Plant based is the new buzz word

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Darlia | @darlia | Feb 21, 2018
In reply to @darlia "We agree... Diet and nutrition. I started a couple of months ago to mostly eat a..." + (show)
@darlia

We agree... Diet and nutrition. I started a couple of months ago to mostly eat a Vegan menu

Jump to this post

Greetings Lisa~.. I would say that it is helping me feel much better to leave beef, chicken and pork alone. I have had some turkey and chicken and small amt of grass fed hamburger and a few pieces of bacon and some cheese too recently .. but this was over the last couple of months and it was in a small amount. Mostly eating without meat. We do eat fish and eggs too. The Vegan diet lasted for a couple of weeks and then we thought, okay, we can't do the complete switch all at once, but need to ease into it.. So, I make many recipes that are without meat and we use more grains like brown rice, wild rice, black beans, Kasha and buckwheat and lots of vegetables. I love to cook so experimenting has been fun. Pinterest has many many good ideas and recipes for anything you want to try. Also, I found a good resource in a site called Ancient Grains.
https://wholegrainscouncil.org/whole-grains-101/whats-whole-grain/ancient-grains
If you watch the documentary produced by Netflix Originals called
"What the Health?" .... You will be so amazed at how the 'meat' that is produced today is killing us!
Stay Safe!
Darlia

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Lisa | @techi | Feb 22, 2018
In reply to @techi "@johnbishop John last week l went to a new rheumatologist and the first thing he said..." + (show)
@techi

@johnbishop John last week l went to a new rheumatologist and the first thing he said why have you come to see me? I really don't know if that's the new questions the doctors ask you or what but anyway l told him about the mayo clinic and he explains to me if they cant find out why your ana and rnp is high then l won't but he decided to run all the test over again. Then by the end of the week he was prescribing hydrocholquine which l had an allergic reaction. I spent 80.00 for the med, er visit then another er visit because they thought l was having a stroke which was crazy and then when l go back to the er the doctor tells me werent you here the night before? Rude, rude,rude. Then l had to have a ct and it was normal so l called the doctors office to see if they where going to give me another med. Since having being told to return in 6months to now 2months. So l called the doctors office again because l could only leave the nurse a message. Now l have an appointment to see him. I asked her why am l going through all this? What did he see? Well she finally said mixed connective tissue. I looked that up and it seems like its just a lot of autoimmune immune diseases which l knew at the beginning but which one? Its like you are an experiment to something they dont have a clue. So l just wanted to know if this could be the problem you have with your liver that you already know you have liver disease. I thought you might know. It seems like the patient knows more than the doctor.

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@johnbishop yes john he did diagnoses me with that l was suppose to see my rheumatologist today but the weather was bad so l get to see him next week and maybe tell him l wasted 80.00 on meds and now he can give me samples to see if l am not allergic to them and if l am not he can give me the prescription for free. I had wasting money on medicines that l cant take. You know what l mean. Havs a good evening John and thanks for the information l will look it up.

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Mentor
John, Volunteer Mentor | @johnbishop | Mar 1, 2018

Hi @kgoodwin9, thank you for allowing me to share your private message in this discussion. I think it may be helpful for other members who may also be looking for answers and allow them the chance to share information they have learned.
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I have large areas of calcinosis and many the diameter of golf balls. Ones on my buttock are about 3 1/2" x 5". Very large. Been to many local doctors in Florida, Sarasota and to Mayo Clinic in Rochester for autoimmune but they took pics of the calcinosis at that time 11/2015. Since then they grew larger to the sizes I indicated in memo. Are there any groups that have this issue that I should join?
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Hello @kgoodwin9, I'm not aware of any support groups for Calcinosis but I did a search and found discussion of calcinosis on buttocks that may help. It was started in 2010 and has 2 pages of posts with the newest from 2014.
— https://www.sclero.org/forums/topic/9651-calcinosis-on-buttocks/
-----------

Anyone have any information they can share with @kgoodwin9?

Thank you,
John

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1 reply
mschock | @mschock | Mar 3, 2018
In reply to @johnbishop "Hi @kgoodwin9, thank you for allowing me to share your private message in this discussion. I..." + (show)
@johnbishop

Hi @kgoodwin9, thank you for allowing me to share your private message in this discussion. I think it may be helpful for other members who may also be looking for answers and allow them the chance to share information they have learned.
----------
I have large areas of calcinosis and many the diameter of golf balls. Ones on my buttock are about 3 1/2" x 5". Very large. Been to many local doctors in Florida, Sarasota and to Mayo Clinic in Rochester for autoimmune but they took pics of the calcinosis at that time 11/2015. Since then they grew larger to the sizes I indicated in memo. Are there any groups that have this issue that I should join?
----------
Hello @kgoodwin9, I'm not aware of any support groups for Calcinosis but I did a search and found discussion of calcinosis on buttocks that may help. It was started in 2010 and has 2 pages of posts with the newest from 2014.
— https://www.sclero.org/forums/topic/9651-calcinosis-on-buttocks/
-----------

Anyone have any information they can share with @kgoodwin9?

Thank you,
John

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An amazing woman. Time for me to refocus on my hunter gatherer diet. Thanks for sharing

REPLY
Texas Freedom | @oregongirl | Mar 7, 2018
In reply to @jigglejaws94 "Inflammation, inflammation, inflammation --- is the root of autoimmune disease. We have to continue to get..." + (show)
@jigglejaws94

Inflammation, inflammation, inflammation --- is the root of autoimmune disease. We have to continue to get a handle on this. Diet is a huge factor.

Jump to this post

Yes, for awhile there Gluten was in a very small shelf in the store. Now packaging tells if it is non gluten. I agree it boils down to what we eat. But, in the past when we ate of the junk food and had hamburger night a home, little did we know that they more than likely introduced Pesticides, antibiotics, and fat that hardens in our blood vessels. Until about 4 years ago, I was a terrible eater. My husband had died and I did not want to cook. Hello Fast Food, french Fries, frozen dinners. Now, if it is lunchtime and I am not hungry, I might have a juice drink. If I eat my larger meal for lunch, dinner is way less. I can only hope it works.

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emmar21 | @emmar21 | Mar 27, 2021

I have been dealing with health issues for quite a long time. In November I had a terrible flare, since then I continue to have little flares. My primary doctor believes that I have an autoimmune disorder. He has referred me to a Rheumatologist at Wash U but the appointment isn't until May. I would really like to go ahead and start the elimination diet protocol so I can start feeling better. However, I am not sure if I should wait to start this until after my appointment with the Rheumatologist. Will it be difficult for them to give me a proper diagnosis if I start this process before seeing the doctor?

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2 replies
Ingegerd Enscoe, Alumni Mentor | @astaingegerdm | Mar 29, 2021
In reply to @emmar21 "I have been dealing with health issues for quite a long time. In November I had..." + (show)
@emmar21

I have been dealing with health issues for quite a long time. In November I had a terrible flare, since then I continue to have little flares. My primary doctor believes that I have an autoimmune disorder. He has referred me to a Rheumatologist at Wash U but the appointment isn't until May. I would really like to go ahead and start the elimination diet protocol so I can start feeling better. However, I am not sure if I should wait to start this until after my appointment with the Rheumatologist. Will it be difficult for them to give me a proper diagnosis if I start this process before seeing the doctor?

Jump to this post

@emmar21 Welcome to Mayo Connect! There are a lot of us here with similar ailments that are looking for answers.
You didn’t mention what type of flares you have.
I agree with you that you should postpone your elimination diet until you see the Rheumatologist. Just continue as usual to avoid confusion.
Please report back after your visit! We all learn from each other.

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1 reply
Mentor
Becky, Volunteer Mentor | @becsbuddy | Mar 29, 2021
In reply to @emmar21 "I have been dealing with health issues for quite a long time. In November I had..." + (show)
@emmar21

I have been dealing with health issues for quite a long time. In November I had a terrible flare, since then I continue to have little flares. My primary doctor believes that I have an autoimmune disorder. He has referred me to a Rheumatologist at Wash U but the appointment isn't until May. I would really like to go ahead and start the elimination diet protocol so I can start feeling better. However, I am not sure if I should wait to start this until after my appointment with the Rheumatologist. Will it be difficult for them to give me a proper diagnosis if I start this process before seeing the doctor?

Jump to this post

@emmar I really have to agree with @astaingegerdm about not starting an elimination diet until you see the rheumatologist. You want the doctor to see you exactly as you’ve been the past years that you’ve been having problems. What you can do, is to start a notebook of all the changes/problems you’ve noticed, when you have had flares and maybe what triggered them. I find it so helpful to have all my information with me when I go to the doctor. Please stay in touch with MayoClinicConnect and let us know what you find out from doctors. Will you do this?

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