Auto-Immune Disease and Diet

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Hey all! <3

For starters, thank you for coming to this thread and reading my post. I'd like to start by saying I personally have never tried to stick to a specific diet, I have only gone for eating healthier in general. However, this past year I was diagnosed with Sarcoidosis. I have to take steroids during flairs and it makes it extremely difficult to keep control of my intake. I am asking for any tips, tricks for feeling fuller for longer, or any diet suggestions for autoimmune diseases.

I have heard a few suggest Keto, and I honestly don't know much about it. If you do participate in Keto, do you have any tips or knowledge that I could possibly use?


Thank you so much for taking some time here and being a helper. I hope you have a blessed and wonderful day. :)

Replies

  • heybales
    heybales Posts: 18,842 Member
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    Welcome to MFP!

    I'd suggest start testing what types of foods fill you up if you don't know already.

    Will Keto with high fat and moderate protein and low carb do it?
    It doesn't for many, and for many they have gotten fat on it, so it really didn't work.
    Initial water weight loss works for most, but is that really what you want to lose - water weight for 2 weeks?

    Does high fiber do it for you, does a mix at each meal, does simply eating the protein and fat before carbs help?

    These are all things you'll have to determine on your own - take notes and experiment.

    I will suggest though - a reasonable diet is always better for fat-mainly loss and keeping the body from stressing out and adapting. Which makes the fat loss harder.

    Your body is already under stress then, what is reasonable for others likely won't be for you.
    That will have a huge bearing on feeling hungry if you attempt to cut too many calories.
    Which means you have to know how to setup and use MFP correctly to keep that reasonable diet.
  • Luke_rabbit
    Luke_rabbit Posts: 1,031 Member
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    I would highly recommend that you do some research looking at well done scientific studies for diet and autoimmune diseases (even if they were for different conditions than yours).

    Then do the best you can to start shifting your diet in the recommended direction, without trying to make drastic changes all at once.

    Because autoimmune diseases are still somewhat mysterious, it's incredibly easy to get sucked down an internet rabbit hole of crazy theories and testimonials, so remain extremely vigilant to avoid that.

    But also remember that no diet will likely stop all flares, so try not to get discouraged. Everyone is different, and a diet (or even a medicine) that helps "virtually everyone" with a condition, may not work for you.

    My only advice on "steroid hunger" is to accept that those will be maintenance eating days to help your body feel better.

    Good luck.
  • lgfrie
    lgfrie Posts: 1,449 Member
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    I have UCTD and have had to do the steroid thing during flare ups. First thing I'd say is to really drill down with your rheumatologist, and maybe a nutritionist with rheumatological expertise, on diet stuff and try your best to avoid going down, as @bold_rabbit says, Internet rabbit holes, of which there are plenty. Actually, I agree with @bold_rabbit 's whole post.

    Being a carb lover and not remotely a keto person, I would have to admit that, in my particular case, I could've done myself a lot of good during steroid treatment times if I'd eaten keto or something close to it. I found with steroids that my cravings weren't for fat or or protein, it was for carbs, and getting a handle on that was super-hard and I did gain quite a lot of weight during those times, doing things like hand-feeding myself entire boxes of Captain Crunch late at night. Once I figured it all out and got the carbs mostly out of the house while taking steroids, the problems were minimized greatly. So I do think keto may be a good way to approach it. That said, I encourage you to discuss this issue with medical professionals first and foremost, and maybe last too.
  • Luke_rabbit
    Luke_rabbit Posts: 1,031 Member
    edited January 2021
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    To add my personal story as a complement to my other post:

    I have a condition that is considered a potential autoimmune disease. The jury is still out. I use a high dosage steroid cream 2x a week regularly and then twice a day for several weeks during flares. Even topical steroids (at least for me) cause some water retention and hunger. (But not as much as oral steroids which I have used for injuries.)

    The gold standard treatment for my condition is immunosuppressant creams, but those have been a total failure for me. That has caused some conflict with my medical team (which, honestly, is stress that I don't need).

    I have never tried a diet approach. I also have severe GERD and my diet is totally focused on keeping stomach acid under control, but, in general, my diet is similar to recommendations for anti inflammatory, so I figure that helps.
  • ssmith0903
    ssmith0903 Posts: 25 Member
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    Thank you all so much for your input and for sharing personal stories. It really helps and I'll definitely do more research and discuss some things with my physicians
  • whoami67
    whoami67 Posts: 297 Member
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    You might look into the AIP (autoimmune paleo) diet. You may or may not find it beneficial to your health. I think it's pretty good, but there's not one size fit's all answer in autoimmune conditions. Sadly, I think steroids are going to make you gain during your flare ups and there probably isn't a lot you can do about it.