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jennat's Elimination Diet to treat Rosacea Fulminans / Pyoderma Faciale


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Elimination Diet to treat Rosacea Fulminans / Pyoderma Faciale

After following this restricted diet for two years, my skin is clear, even healing....as long as I stick to the diet strictly, but no other treatment. This means I cook everything I ingest; no restaurants, no cheating, no convenient snacks. My nose is still slightly red and sensitive to cold and stress, easy to swell in the morning (a good indicator of my current state), but nothing like the purple, disfigured rhinophyma I was experiencing.

Current diet:
Meat, fish, eggs, green leafy vegetables and herbs, mushrooms, zucchini, green peas, ginger, turmeric. Pure olive oil or animal fats for cooking; cannot even tolerate certain brands (may be tainted with other oils or rancid). I tolerate one cup of coffee in the morning; plus turnip, rutabaga and parsnip in limited quantities (just 1-2 servings per week).  

Attempts at adding certain foods over past two years:
High priority was alcohol or chocolate, but just didn't work, painful zits can appear within 20 minutes and then bloating, joint pain, fatigue in a downward spiral if I push my limits. For health, I wanted more fiber, but can't tolerate legumes/grains except I was able to introduce green peas, so yummy! I was also diagnosed with leaky gut, possibly SIBO, but associated symptoms (bloating, GI inflammation/discomfort, etc) also minimized with my strict diet. Daily exercise helps me cope with stress, avoid impulse for alcohol (most difficult part).

What keeps me going: 
I have my life back, no longer ashamed to show my face, feel strong and healthy, not drained and exhausted or stuck in bed for weeks on end. It's been a painstaking process, but well worth it. It started with a rash, then R fulminans, then awful GI stuff after attempting to treat skin with antibiotics. I was worried about autoimmune disease because I developed other inflammatory/pain/fatigue reactions, but so far no antibodies present. Because the antibiotics made things initially better but then worse, I feared accutane and steroids. I didn't see an end to it, wanted to treat more than symptoms. Diet may not be the true root, but at least I have predictable control over my own body and life. After a lot of tinkering and analysis of my nutrient intake, I feel like I'm on a sustainably healthy trajectory. I have a neighbor with ulcerative colitis, she's only 12. I feel lucky that for me, this all started in adulthood, I had plenty of time for luscious deserts and looking good, and I'm mature enough to deal with the emotions and discipline.

Most helpful things to figure this out:
1. Being strict and observant. I've tracked my symptoms/reactions daily along with food intake on a spreadsheet. I introduce only one new thing (food/supplement) at a time, allow one week for a trial. That's crucial. Overall, I can see that I have thresholds. I can have a sip of wine when I'm feeling strong and be OK; but two glasses and zits appear, then worse if I don't control myself. If I'm feeling low, the following things help stem inflammation: bone broth, tea of marshmallow root and slippery elm bark, tulsi and ginger.
2. I've tracked nutrition daily, very carefully on another spreadsheet, for months at a time to ensure I'm getting balance of nutrients and vitamins. Calcium and Vit D are tough, so I eat lots of small fish, often 2-3 times per day, which also keeps Omega-3 fatty acids up and inflammation down. Leafy greens are amazing powerhouses of nutrients, even parsley! Shellfish and meats provide some tasty variety, but I limit pork/beef/chicken because it's so protein-heavy, expensive and I have concerns about toll on my colon (read about cancer threat) plus the environment and the animals themselves. Liver makes me feel remarkably strong, but cannot cover up taste with onions, so I drown it with bacon, grilled veggies and homemade herbal mayonnaise.
3. I've tried herbal treatments and nutrient supplements but I react to additives in most pills. Glutamine was prescribed for leaky gut, but I reacted terribly (fatigue, skin inflammation, joint pain). The only thing that seemed to help was pure Betaine HCL, had to be gelatin capsules and no additives. Overall, I do better when I cut out all pills.
4. Getting enough sleep also seems important. At a certain time of the month, my whole system seems more vulnerable, so no root veggies or any new trial foods at this time.  
5. Cooking/Traveling/Social Meals are all tough. I need to have access to a kitchen (or at least a small portable cookstove) and plan ahead when traveling. At holidays/gatherings, I take care of my own food and people can deal with my weirdness. Backpacking has been more limited; dried meats, dehydrated pea soup and a camping-friendly egg carrier all help. 
6. Support from a doctor and my partner. The doctor makes me feel like I'm not crazy; he's an MD in integrative medicine at UCSF. He suggested the elimination diet. Having a supportive partner makes everything so much better, he's amazing to eat alongside me and helps with cooking, new recipes.

I'm happy to share and discuss with others, please feel free to reach out!
Rosacea Forum post #29
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