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

by (10)
Updated about 10 hours ago
Created February 25, 2012 at 1:54 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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5132 · February 29, 2012 at 5:58 PM

U need to explore alternative food sources. For me, it was tubers. I eat either boiled or microwaved yams or sweet potatoes for breakfast. Coffee. Some bacon every now and then with steamed kale or collard greens.

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289 · February 29, 2012 at 6:03 AM

I am struggling with staying on an autoimmune version of paleo, I have a hard time keeping off eggs and nuts. What do you eat for breakfast? I can't do meat in the morning :(

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5132 · February 27, 2012 at 3:57 AM

sumfing as serious and multifaceted as Scleroderma/crest.

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5132 · February 27, 2012 at 3:57 AM

Scleroderma is a much more complex and serious disease thant what I have (Sjogren's). So there may be various symptoms. I basically only have dry eyes, puffy eyes, dry throat and mouth, and a bit of brain fog. That's about it. Everyday, I record my symptoms in a spreadsheet journal and rate the severity of my symptoms: e.g., 4 = very mild vs. 8 = severe. I also record whether I strayed or not and if I did, with what: e.g., accidnetal ingestion of gluten, wheat, eggs, nightshades, etc. Without keeping a thorough journal I don't see how u can reliably track ur reactions, esp. when u have

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5132 · February 25, 2012 at 3:26 AM

I do have some dry red wine. I don't seem to react to it, although I can't be 100% sure since I assumed dry red wines are ok (pinot noir, cabernet, merlot, etc.). Also, I've experimented and I seem pretty okay with lentils but not okay with other legumes. But I don't have any terrible yen for lentils, I stay legume free anyway.

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2341 · February 25, 2012 at 3:18 AM

Are you also alchol free? Or can you tolerate a glass of wine?

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5132 · February 25, 2012 at 3:11 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.

3c6b4eed18dc57f746755b698426e7c8
5132 · February 29, 2012 at 5:58 PM

U need to explore alternative food sources. For me, it was tubers. I eat either boiled or microwaved yams or sweet potatoes for breakfast. Coffee. Some bacon every now and then with steamed kale or collard greens.

A0d4481f4b568e4edc7d8c72102dcfc1
289 · February 29, 2012 at 6:03 AM

I am struggling with staying on an autoimmune version of paleo, I have a hard time keeping off eggs and nuts. What do you eat for breakfast? I can't do meat in the morning :(

3c6b4eed18dc57f746755b698426e7c8
5132 · February 25, 2012 at 3:26 AM

I do have some dry red wine. I don't seem to react to it, although I can't be 100% sure since I assumed dry red wines are ok (pinot noir, cabernet, merlot, etc.). Also, I've experimented and I seem pretty okay with lentils but not okay with other legumes. But I don't have any terrible yen for lentils, I stay legume free anyway.

0faecc3397025eab246241f4dcd81f5e
2341 · February 25, 2012 at 3:18 AM

Are you also alchol free? Or can you tolerate a glass of wine?

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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 2:21 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.

3c6b4eed18dc57f746755b698426e7c8
5132 · February 27, 2012 at 3:57 AM

sumfing as serious and multifaceted as Scleroderma/crest.

3c6b4eed18dc57f746755b698426e7c8
5132 · February 27, 2012 at 3:57 AM

Scleroderma is a much more complex and serious disease thant what I have (Sjogren's). So there may be various symptoms. I basically only have dry eyes, puffy eyes, dry throat and mouth, and a bit of brain fog. That's about it. Everyday, I record my symptoms in a spreadsheet journal and rate the severity of my symptoms: e.g., 4 = very mild vs. 8 = severe. I also record whether I strayed or not and if I did, with what: e.g., accidnetal ingestion of gluten, wheat, eggs, nightshades, etc. Without keeping a thorough journal I don't see how u can reliably track ur reactions, esp. when u have

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