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Best ways to manage limited Scleroderma/CREST syndrome/aligned autoimmune diseases

by 10 · February 27, 2012 at 11:26 AM

So a close relative has been diagnosed with scleroderma after years of symptoms having symptoms of a leaky gut, Raynaud's and other markers. Now, her fingers get all puffy from the cells producing too much collagen and this may affect organs along the line, although thankfully this hasn't happened yet and doctors are keeping a close eye.

She has altered diet drastically, from SAD to mostly 'paleo' (no legumes, dairy, grains etc but some grain like seeds). This has improved things already, along with the some of the 'kitchen sink' (probiotics, enzymes, D3, increased activity) being thrown at the leaky gut, dysbiosis and other problems.

My question to you all is twofold: are there any ways to specifically manage and mitigate excess collagen production, and, more broadly what are your recommendations with regard to possible 'Paleo' diet tinkering and supplementation to manage this condition?

Any insight would be great, cheers.

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5100 · February 25, 2012 at 03:11 AM

Stay gluten-/dairy-/egg-/legume-/nightshade- and nut-free for life. That's pretty restrictive but doing that reduces the severity of symptoms for my connective tissue related autoimmunity. Every time I stray, I pay with my dry eyes and throat, and say, "I shouldn't have."

Also, supplement with gut antioxidants: NAC, copper, zinc, iodine, Vit C, Vit K2.

EDIT: Also, I'm soy-free as well and things like MSG. My diet has so far has been limited to restricting the above. I haven't tried restricting any FODMAPS, and it will be difficult for me to do that, since I consume lots of tubers. If I stay away from the above, my symptoms become very mild, though I'm not completely in remission. But if I stray, I can feel the effect for 1-2 weeks. It takes that long for me to completely rid myself of residual symptoms. That's why I try to be strict.

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10 · February 27, 2012 at 11:26 AM

Thank for the suggestion re recoriding reactions in a diary, I will definitely pass it on. At the moment things are quite ad hoc in the 'adjustment phase' as we come to terms with teh condition... Thanks.

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10 · February 27, 2012 at 02:21 AM

Thanks very much, very helpful. Perhaps you could also say how reactions to foods are tracked? Is it just personal symptoms, the typical ones like puffiness, dry eyes etc, and if these don't manifest then a food (potato, say), in moderation might be okay?

Cheers.

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