DOING SURVEY- SCLERODERMA AND DIET

[MINOCINMAN]

This is a question for everyone that has either Limited or Diffuse Scleroderma. Did you change your diet as part of recovery?
If so, could you please list foods eliminated and on a scale of 1 to 10, with 10 being huge improvement and 0 being for no change noticed. This will of course not be scientific, but looking to get a sense of any substantial anedotal evidence to support benefits of diet modification. Your comments should include and addition of nutritional supplements, including vitamin B12 injections, and data of diagnosis and type of SD and current status.
I think this will be very useful for many, including me that question the benefit of diet modification.
All 3 rhemutoligist I have seen with and Dr. S do not see any benefit.

I know we are all very busy, but a brief comment posted would be very much appreciated.

Jeff

[kater]

Hi–just me again!
removing gluten and dairy get a 10 from me for reducing mucous and inflammation–and the only thing that shifts middleage muffintop!
all the rest of these I removed cold turkey so won’t know which is most helpful/not until at some point when I am improved I will try re-introducing some of them a little at a time: all grains and simple carbs, nightshade vegetables–tomatoes, potatoes, peppers, eggplant, paprika, chilies etc, all forms of sugar, no cooked carrots, beets, corn or starchy things but squash is okay and I have reintroduced yams successfully, no red meat, no juice, no preservatives, chemicals, msg, caffeine, no tropical fruit and no more than 3 servings of low sugar fruit a day, and I try to keep away from anything fermented.
I would give removing this group a 7 or 8–I had about 75% improvement in my hands in 2 weeks. I have been on AP for 8 days now and I don’t even know if it is possible it is the AP or something else, but my hands feel quite a bit better this morning, and they look better too–esp. the left.
I am a little surprised Dr. S doesn’t advocate diet. My rheumatologist doesn’t believe in diet either, just plaquenil!! My bloodwork has been slowlyimproving with diet and supplements (below) and in my opinion my balanced and alkaline body chemistry creates the right environment to starve the wee beasties and help the AP work. I am very disappointed to see though that the AP has made my body very acid and I am not sure how to correct that yet.
So, for what I do eat that I think is just as important as what I don’t. TONS of vegetables, esp green, greens powder, brown rice protein powder, nuts, seeds, hemp, some low sugar fruit, legumes, fish, soy, lemons. Organic as much as possible. You get the idea. I know it sounds lame and boring but it is worth the effort and people love my food! Take a look at my favourite food website alkalinesisters.com They use some grains though and I do not. Great ideas for veggies and wealth of food and health info!!

Systemic Scleroderma since 2010. Lyme and Myco P. AP and many other antibiotics and treatments since Nov. 2011. Presently mostly in remission other than fatigue.
Teva Minocycline 100mg a day. Dessicated tyroid, LDN 4.5, LDI, hawthorne, curcurmin, berberine,, caprylex, reishi mushroom, liver protect, zinc,, fish oils, magnesium, vit K2, d3, bcomp, E, C

[Patricia.Ann]

Hi Kater,

That alkaline sisters site is absolutely fantastic. Just had a quick look and those recipes look delicious – and achievable. I feel healthy already just looking at it – lol. I will be out food shopping this weekend for my alkaline stuff.

Thank you for posting that 😀

Patricia x

[mlouise]

I know I am late to post on this topic, but I want to let you know that I have not really noticed much difference with any diet change. WhenI was first diagnosed with SD about two years again i went on a pretty strict, no glutten, no dairy, no sugar diet and I began a down hill spiral in weight that I could not stop even though I went off of the diet after 14 days. 40 lbs later I managed to get things stopped by using Creon and the Budwig Formula. now I try to eat healthy things. I naturally avoid breads and doughy items because they are too difficult to swallow. My AP doc does not encourage any special diets, just what I can eat considering the acid reflux, swallowing problems, and of course avoiding sugars. I have been stable at 115 lbs (a gain of 10 lbs since I hit rock bottom in September, 2010) I have found that certain food items do not sit well with me anymore. I blame it on the Mino, but I not sure. My gut is very sensitive, not so much to what kind of food I am putting in it, but more so on timing. I can not get too hungry or stressed or I will have difficulties with my stomach. I believe it might have to do with the body reactions to stress, certain chemical releases, these effect me more that diet.

[richie]

Hi—I never had any diet limitations nor placed any at all on myself —There were some foods that “bothered me ” such as tomatoe sauce etc –I just eliminated them –but if the particular food caused me no distress -no limitations –incidentally -Dr T uses this approach –no fixed diet rather just a matter of common sense —
richie

[SusanSD]

I have not made strict changes in diet and AP helped within 6 months (systemic sclerosis – diffuse). I do try to eat healthy but I do have a sweet tooth.

I have noticed that I cannot tolerate ice-cream cakes as well (my sister-in-law’s favorite) as I used to but that may be related to the scleroderma and not the AP. I should explain that I don’t have esophageal reflux which is a bit rare.

When I am being really good in my opinion, I am eating low-fat, high-protein foods like walnuts with greek yogurt, and I have tried to eat fermented vegetables for the prebiotic/probiotic benefit, but I don’t eat it regularly enough to notice if it’s helpful.

Good luck to all,

Susan

[Author]

Posts