Diet and autoimmune issues

Posted by margar1 @margar1, Jan 12, 2023

I need some guidance on altering my diet if necessary. I have 4 autoimmune conditions, and I’m getting worked up at Mayo for a 5th. Has anyone honestly had any benefit from a gluten free (GF) or non-dairy diet? I seem to be the poster child for stray autoimmune conditions and I would very much like it to stop. Thank you.

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Hi @margar1, You mentioned in your first post you are having a workup for Sjogren's and you have 4 autoimmune conditions. I don't have any experience with gluten free or non-dairy diets but have tried to keep to an anti-inflammatory diet. Here are a few references you might find helpful.

-- Diet Review: Anti-Inflammatory Diet
https://www.hsph.harvard.edu/nutritionsource/healthy-weight/diet-reviews/anti-inflammatory-diet/
-- AIP (Autoimmune Protocol) Diet: Overview, Food List, and Guide
https://www.healthline.com/nutrition/aip-diet-autoimmune-protocol-diet

Have your doctors suggested a gluten free or non-dairy diet?

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Hi @marg1 - After three bouts of double vision and droopy eyes each one month apart, I was diagnosed with MuSk myasthenia gravis. My care team is at a university and doesn’t feel like there is enough evidence and research to recommend anything beyond a healthy diet; however, they didn’t have a problem with me trying dairy free/gluten free. I cut out both immediately following my diagnosis and haven’t had a flare since then. I found this article which cites several functional MDs diet suggestions very helpful. https://me-over-mg.com/f/food-for-thought-series-%E2%80%93-part-2-%E2%80%93-gluten

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If you eat gluten, beef, sugar, dairy etc and you have a flare or more pain then you have to stay away from it.
I went off all of them then added them back slowly to see which ones were affecting me.

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@johnbishop

Hi @margar1, You mentioned in your first post you are having a workup for Sjogren's and you have 4 autoimmune conditions. I don't have any experience with gluten free or non-dairy diets but have tried to keep to an anti-inflammatory diet. Here are a few references you might find helpful.

-- Diet Review: Anti-Inflammatory Diet
https://www.hsph.harvard.edu/nutritionsource/healthy-weight/diet-reviews/anti-inflammatory-diet/
-- AIP (Autoimmune Protocol) Diet: Overview, Food List, and Guide
https://www.healthline.com/nutrition/aip-diet-autoimmune-protocol-diet

Have your doctors suggested a gluten free or non-dairy diet?

Jump to this post

They said a Mediterranean diet is good for reducing inflammation, and said if I wanted to see if a GF diet would work then that was fine. I’m just torn about it given how hard it is to be GF.

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I started with a diagnose of hypothyroidism, and was treated with Synthroid. Over time Synthroid seemed to lose it's effectiveness. An Endocrinologist felt I had an absorption problem. I switched to Tirosint, and went gluten free on my own accord. I progressively lost weight on Tirosint, too much in fact. I then for a while tried a combo of Synthroid and Tirosint (under doctor care) but felt definitely worse after a while. So I resumed taking only Synthroid (again under doctor care), and I believe my following a gluten free meal plan over this period enabled me to once again absorb Synthroid satisfactorily. I seemed to have developed a "sensitivity" to gluten at some point and time. I have read on a thyroid patient help site that this is pretty much the rule, not the exception.

As for dairy I have been tolerating lactose free products without any difficulty.

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In reply to @margar1….. I have a number of health issues including chronic migraine and digestive issues. Each year, I would try a new intervention in an attempt to reduce my high rate of migraines (along with medications and Botox). After many years, I finally decided to try a gluten free diet. Within a couple weeks, my digestive tract felt SO MUCH BETTER that I have never returned to eating gluten. Surprisingly, six months later my migraines reduced from about 18 to 9 a month. Each year they have continued to be stable or decrease a little more. This is my journey with experimenting with no gluten…..I believe you will notice if it is helpful or not. Each intervention I tried prior to this was unsuccessful (other special diets; vitamin/minerals, etc).
I think trying these types of interventions are difficult and take a strong commitment due to the major change it is to one’s lifestyle, initially. However, if it works, it will be worth it. If not, you know you tried……. Good luck in your journey….

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Hi @margar1, at one point in my digestive issues and pharmaceuticals were no longer an option (long story of 3 endoscopies and putting on drugs with side effects I was experiencing), I decided on my own I needed to do something to get relief. Following some others journeys and what they had done, I decided I had nothing to lose and went dairy free, gluten free and sugar free. After about 2 weeks, I started feeling better - my digestion improved, acid reflux was going away, my energy was returning. During those 2 weeks, I did research on functional medicine and pursued treatment via that medical field. Testing results revealed I was gluten intolerant, I had SIBO (small intestinal bacterial overgrowth), and a fungus. I was also told that my hypothyroidism was definitely Hashimoto's - an auto immune disorder. So the changes I had started on my own were actually helping. Hope this info helps and wishing you the best.

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@margar1

They said a Mediterranean diet is good for reducing inflammation, and said if I wanted to see if a GF diet would work then that was fine. I’m just torn about it given how hard it is to be GF.

Jump to this post

@margar1
Some years ago I was also being evaluated at Mayo for GI autoimmune disorder. One part of the evaluation was eliminating certain foods and medications- one at a time for 4 weeks. This included gluten and dairy products.
No particular good elimination made a difference.
You could discuss food elimination with your Mayo health care team, getting practical advice on how to go about it. There are also blood tests that can pinpoint if you are allergic to certain foods.

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@gigi4

Hi @margar1, at one point in my digestive issues and pharmaceuticals were no longer an option (long story of 3 endoscopies and putting on drugs with side effects I was experiencing), I decided on my own I needed to do something to get relief. Following some others journeys and what they had done, I decided I had nothing to lose and went dairy free, gluten free and sugar free. After about 2 weeks, I started feeling better - my digestion improved, acid reflux was going away, my energy was returning. During those 2 weeks, I did research on functional medicine and pursued treatment via that medical field. Testing results revealed I was gluten intolerant, I had SIBO (small intestinal bacterial overgrowth), and a fungus. I was also told that my hypothyroidism was definitely Hashimoto's - an auto immune disorder. So the changes I had started on my own were actually helping. Hope this info helps and wishing you the best.

Jump to this post

@gigi4
I’m curious- do you still have SIBO symptoms? Do you need anything else to control it?
Apparently, gluten sensitivity- celiac disease, autoimmune, often coexist with Hashimoto’s.
My 2 daughters both have celiac disease and one of them also Hashimoto’s. Both have food allergies too.

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