Oh Zizzle, I feel terrible for you! It definitely sounds like some of your food is giving you problems, but maybe your derm is right and you need something more systemic. I know that Joe has been on Imuran for like three years and it works wonders. At least the drug has been around for many years. It sounds like your immune system is going crazy!
If you don't want to go that route, I agree with some folks here about the diet. Just stick with a few things you know are safe... at least for a while to see if you get significantly better.
Hope things get better soon
leah
Partial elimination or nuclear Autoimmune Protocol??
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi Zizzle,
Sorry to hear the rash is heating up again. I hear you when you say you would take MC over the rash - nothing worse than being constantly itchy.
What about going back to your Phase 1 MRT foods + your Enterolab restrictions + histamine/salicylate restriction? That will yield just a few foods, but is probably the best prediction of what is safe for you. That may be the best elimination diet for you personally. Once the rash is under better control then test one new food per day - that's true elimination diet protocol.
Also, don't forget to look for reactive ingredients in things like toothpaste, lipstick and medications etc. Sometimes even trace amounts of a reactive food can cause symptoms. I also think with skin reactions you have to be very careful with personal care products. For example, if you are coconut sensitive then don't use products with sodium lauryl sulfate or if you are lamb sensitive avoid lanolin. I had a client who had ongoing skin reactions and come to find out she was using a basil essential oil on her skin and she was sensitive to basil per her MRT.
Do you suppose it is possible you are sensitive to something in your clothing, like latex, spandex, dyes, chemicals?? Sometimes foods even play a role in that (like banana or avocado cross reacting with latex).
I agree with Tex to keep searching for the culprit, especially since you are still having MC issues on steroids.
Mary Beth
Sorry to hear the rash is heating up again. I hear you when you say you would take MC over the rash - nothing worse than being constantly itchy.
What about going back to your Phase 1 MRT foods + your Enterolab restrictions + histamine/salicylate restriction? That will yield just a few foods, but is probably the best prediction of what is safe for you. That may be the best elimination diet for you personally. Once the rash is under better control then test one new food per day - that's true elimination diet protocol.
Also, don't forget to look for reactive ingredients in things like toothpaste, lipstick and medications etc. Sometimes even trace amounts of a reactive food can cause symptoms. I also think with skin reactions you have to be very careful with personal care products. For example, if you are coconut sensitive then don't use products with sodium lauryl sulfate or if you are lamb sensitive avoid lanolin. I had a client who had ongoing skin reactions and come to find out she was using a basil essential oil on her skin and she was sensitive to basil per her MRT.
Do you suppose it is possible you are sensitive to something in your clothing, like latex, spandex, dyes, chemicals?? Sometimes foods even play a role in that (like banana or avocado cross reacting with latex).
I agree with Tex to keep searching for the culprit, especially since you are still having MC issues on steroids.
Mary Beth
"If you believe it will work out, you'll see opportunities. If you believe it won't you will see obstacles." - Dr. Wayne Dyer
Hi Mary Beth,
Thanks for weighing in. I currently only use coconut oil with jojoba oil mixed in on my skin. I recently started adding tea tree oil to the mixture bc it helps with the itching somewhat -- and kills more of whatever might be happening on the skin's surface. The rash causes surface erosions that could get infected, but the coconut oil has kept me infection-free. I am about to add MSM sulfur powder to the coconut oil. My mom in Guatemala suggested sulfur for all skin ailments. I also changed my family's detergent from All Free and Clear to a super-natural brand from Whole Foods -- Green Mission Organic Unscented. Since the rash is primarily on my upper back and chest, I wash my bras with baking soda only.
I have to buy relatively loose undergarments because tight elastics make me itch like crazy. Most of my bras and clothes are 100% cotton. Interesting that I was moderately reactive to bananas and avocado on MRT. Latex-related?? I finally cut them out last week, but sure hope I can reintroduce later.
I have GOOD NEWS! As of 2 days ago, I am officially on the Autoimmune Paleo Protocol while also eliminating my remaining MRT yellow foods. I'd been off all grains except rice for a week, and off pork for 2 weeks. I slipped up and ate a seafood salad including shrimp, another MRT food, and paid a hefty price on Friday night, so I decided to go cold turkey on everything. It's strangely easier this way. My only slip ups were adding mustard to a marinade (no seeds allowed, and mustard seems problematic for many ppl), and eating a few of my husband's homemade French fries.
I'm also drinking at least one cup of kefir water a day (got the grains last week...so easy!!), and eating naturally fermented pickles and sauerkraut (no histamine reactions that I can tell).
All this to say...my rash is 20-30% improved already!!!!!!!!
I can't believe it!!!!!!!!!!!!! The skin is more supple and less dry, the redness has calmed down, the bumpiness is now smooth again, the itch is half of what it was, I only need to apply oil twice a day, and the erosions are not multiplying anymore!!! I was able to run-walk 3 miles yesterday without discomfort and I'm sure the exercise and sweating helped. There is still lots of dusky purple to clear, and my knuckles are still red, but this is major progress!!!!! I think I have halted this thing!
So, this leads me to believe my autoimmune disease is, in fact, a food sensitivity, or several. Some that I least suspected. Unless its just about reducing general inflammation to reduce disease activity. I really hope it's a specific few foods!!
My dermatologist wanted me on methotrexate as of Friday and was putting in a call to my rheumatologist to try to make it happen. That was my wake-up call. No more messing around. I have to beat this without medicine.
Of course I'm still on 15 mgs prednisone and 400 mgs Plaquenil, but I hope to start tapering pred again real soon to get back to 6 mgs, then take my sweet time getting off. Luckily I have no negative side effects.
I'm so hopeful!!! Thanks for all the support everyone! I can wear a bra without crying! Yippee!!
Thanks for weighing in. I currently only use coconut oil with jojoba oil mixed in on my skin. I recently started adding tea tree oil to the mixture bc it helps with the itching somewhat -- and kills more of whatever might be happening on the skin's surface. The rash causes surface erosions that could get infected, but the coconut oil has kept me infection-free. I am about to add MSM sulfur powder to the coconut oil. My mom in Guatemala suggested sulfur for all skin ailments. I also changed my family's detergent from All Free and Clear to a super-natural brand from Whole Foods -- Green Mission Organic Unscented. Since the rash is primarily on my upper back and chest, I wash my bras with baking soda only.
I have to buy relatively loose undergarments because tight elastics make me itch like crazy. Most of my bras and clothes are 100% cotton. Interesting that I was moderately reactive to bananas and avocado on MRT. Latex-related?? I finally cut them out last week, but sure hope I can reintroduce later.
I have GOOD NEWS! As of 2 days ago, I am officially on the Autoimmune Paleo Protocol while also eliminating my remaining MRT yellow foods. I'd been off all grains except rice for a week, and off pork for 2 weeks. I slipped up and ate a seafood salad including shrimp, another MRT food, and paid a hefty price on Friday night, so I decided to go cold turkey on everything. It's strangely easier this way. My only slip ups were adding mustard to a marinade (no seeds allowed, and mustard seems problematic for many ppl), and eating a few of my husband's homemade French fries.
I'm also drinking at least one cup of kefir water a day (got the grains last week...so easy!!), and eating naturally fermented pickles and sauerkraut (no histamine reactions that I can tell).
All this to say...my rash is 20-30% improved already!!!!!!!!
I can't believe it!!!!!!!!!!!!! The skin is more supple and less dry, the redness has calmed down, the bumpiness is now smooth again, the itch is half of what it was, I only need to apply oil twice a day, and the erosions are not multiplying anymore!!! I was able to run-walk 3 miles yesterday without discomfort and I'm sure the exercise and sweating helped. There is still lots of dusky purple to clear, and my knuckles are still red, but this is major progress!!!!! I think I have halted this thing! So, this leads me to believe my autoimmune disease is, in fact, a food sensitivity, or several. Some that I least suspected. Unless its just about reducing general inflammation to reduce disease activity. I really hope it's a specific few foods!!
My dermatologist wanted me on methotrexate as of Friday and was putting in a call to my rheumatologist to try to make it happen. That was my wake-up call. No more messing around. I have to beat this without medicine.
Of course I'm still on 15 mgs prednisone and 400 mgs Plaquenil, but I hope to start tapering pred again real soon to get back to 6 mgs, then take my sweet time getting off. Luckily I have no negative side effects.
I'm so hopeful!!! Thanks for all the support everyone! I can wear a bra without crying! Yippee!!
1987 Mononucleosis (EBV)
2004 Hypomyopathic Dermatomyositis
2009 Lymphocytic Colitis
2010 GF/DF/SF Diet
2014 Low Dose Naltrexone
2004 Hypomyopathic Dermatomyositis
2009 Lymphocytic Colitis
2010 GF/DF/SF Diet
2014 Low Dose Naltrexone
Zizzle,
That's great news.
FWIW, I believe that virtually all so-called autoimmune diseases are not really diseases at all — they're symptoms of food sensitivities.
Tex
That's great news.
FWIW, I believe that virtually all so-called autoimmune diseases are not really diseases at all — they're symptoms of food sensitivities.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
BTW, I contemplated doing the GAPS diet instead, but I decided I needed some carbs in the form of sweet potatoes and fruit. Does anyone think I'm making a mistake by not going totally low carb? Apparently GAPS suggests we continue to feed our pathogenic bacteria if we eat carbs, but AI Paleo says we need some good carbs to feed our good bacteria. Who's right? Does it matter if you're just trying to ID a food sensitivity?
1987 Mononucleosis (EBV)
2004 Hypomyopathic Dermatomyositis
2009 Lymphocytic Colitis
2010 GF/DF/SF Diet
2014 Low Dose Naltrexone
2004 Hypomyopathic Dermatomyositis
2009 Lymphocytic Colitis
2010 GF/DF/SF Diet
2014 Low Dose Naltrexone
I just bought a bottle of MSM powder (non-toxic sulfur) to add to my topical oils, but now that I read more about it, I wonder, should we all be taking it??
It's not particularly expensive, so I doubt there's a money making conspiracy behind it, but who knows? Makes sense to me that sulfur is important for life and our food system is ridding the food supply of naturally occuring sulfur.
http://www.msm-info.com/MSM alleviates the symptoms of a large number of allergies, including food allergies, contact allergies, inhalation allergies, and others. The major anti-allergic characteristic of MSM caused by its ability to bind to the mucosa and present a natural blocking interface between hosts and allergens. Besides, MSM alleviates allergies through detoxification and elimination of free radicals, and improvement of cell permeability. A direct correlation between concentration of MSM used and resistance to allergens has been established. Several authors have noted that MSM works as a histamine inhibitor at least as well as the traditional antihistamines, without the negative side effects (5, 6, 7).
It's not particularly expensive, so I doubt there's a money making conspiracy behind it, but who knows? Makes sense to me that sulfur is important for life and our food system is ridding the food supply of naturally occuring sulfur.
1987 Mononucleosis (EBV)
2004 Hypomyopathic Dermatomyositis
2009 Lymphocytic Colitis
2010 GF/DF/SF Diet
2014 Low Dose Naltrexone
2004 Hypomyopathic Dermatomyositis
2009 Lymphocytic Colitis
2010 GF/DF/SF Diet
2014 Low Dose Naltrexone
In nature, virtually all successful organisms evolve to specialize in a rather unique environment, utilizing specific energy (food) sources. With that in mind, it would be evolutionary suicide for all organisms to attempt to utilize the same food sources. Whenever an unutilized or underutilized feedstock (source of energy) becomes available, a unique organism capable of utilizing that feedstock always appears (or evolves). In the long run, no energy source goes unutilized (or underutilized) for long.Apparently GAPS suggests we continue to feed our pathogenic bacteria if we eat carbs, but AI Paleo says we need some good carbs to feed our good bacteria. Who's right? Does it matter if you're just trying to ID a food sensitivity?
Therefore, to assume that all pathogenic bacteria rely on specific carbs as feedstock defies logic. That line of thinking only applies to the most common, better-known species. Surely, pathogenic bacteria exist that are capable of utilizing just about any discrete energy source that one could dream up (IOW, sources other than carbs). And if we wipe out all of their competition, then they should thrive. But the medical profession tends to be mostly blind to less-common issues (and rare organisms), so if we suddenly build up large populations of mostly-unknown bacteria in our body, we won't even be aware of the problem, because conventional testing protocols do not detect them.
Sure, burning down the barn will get rid of the rats (in that particular barn), but that doesn't mean that burning down the barn is the best solution in the long run. LOL. It's always more complicated than that.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Sigh, I was feeling hopeful until I read a recent conference update about my disease. It seems the possibility of an ongoing viral trigger is very likely, as I suspected. I'm not sure whether my rheumy has tested me for this new antibody, but I certainly intend to ask him to! ILD is a horrible, permanent condition!
Anti-MDA-5 and interstitial lung disease
One autoantibody that has gained attention in recent years is anti-MDA-5, also known as anti-CADM-140, which is often seen in patients with amyopathic dermatomyositis (ADM).
Patients with ADM represent a subset of dermatomyositis patients who have cutaneous manifestations of dermatomyositis for 6 months or longer and have no clinical evidence of proximal muscle weakness but may have mild serum muscle enzyme abnormalities. More extensive muscle testing in these patients generally demonstrates no or minimal abnormalities. However, these patients should not be considered to have simply a benign cutaneous form of disease; in fact, they have a frequency of malignancy similar to that of patients with classic dermatomyositis (14% in one series of nearly 300 patients, compared with 15% in classic dermatomyositis).
In addition, ADM patients also have a relatively high frequency of lung disease, Dr. Oddis said. In a published review of the literature of nearly 200 patients with ADM, 10% had interstitial lung disease (ILD) – an important point given that the rash of dermatomyositis may be subtle and missed, he noted.
The Asian population seems to be particularly at risk for this complication. Two studies in recent years have demonstrated that Japanese ADM patients with anti-MDA-5 present with rapidly progressive ILD. A 2011 study showed an increased incidence of acute or subacute interstitial pneumonitis in Chinese patients. Other studies have shown similar findings in Korean and other Asian populations, Dr. Oddis noted.
The presence of anti-MDA-5 represents a novel cutaneous phenotype involving palmar papules and cutaneous ulcerations, severe vasculopathy, and rapidly progressive ILD. The target autoantigen in these cases is MDA-5, which is involved in innate immune defense against viruses, he explained, noting that this supports the possibility that a viral trigger plays a role in the disease.
"I think this complication is filtering into the U.S. population, as we have seen it in our myositis cohort," Dr. Oddis said of the anti-MDA-5 association with ADM and severe ILD. He noted that he recently cared for a 70-year-old white male with "double pneumonia" (a finding that "should always raise suspicion of autoimmune ILD") in June of 2012, a rash of dermatomyositis in September of 2012, and vasculitic skin changes in January of 2013. He presented without muscle weakness.
1987 Mononucleosis (EBV)
2004 Hypomyopathic Dermatomyositis
2009 Lymphocytic Colitis
2010 GF/DF/SF Diet
2014 Low Dose Naltrexone
2004 Hypomyopathic Dermatomyositis
2009 Lymphocytic Colitis
2010 GF/DF/SF Diet
2014 Low Dose Naltrexone
Zizzle,
IMO you are putting way too much faith in the speculation of medical researchers, and you're forgetting that diet trumps most (maybe all) medical treatments. Remember that it is a fact that the conclusions reached in most medial research articles are absolutely wrong. And after all, if those guys really knew what they were doing, there would be effective (and safe) medical treatments available, that actually work.
You can bet that the subjects mentioned in those studies were treated by conventional medical methods, and most likely, none of them made any diet changes, at least they didn't make the proper diet changes. You should think of them the same way that some of us on this board view MC patients who refuse to change their diets — they are controls in our ongoing trials to discover and verify the best ways to treat this disease.
Tex
IMO you are putting way too much faith in the speculation of medical researchers, and you're forgetting that diet trumps most (maybe all) medical treatments. Remember that it is a fact that the conclusions reached in most medial research articles are absolutely wrong. And after all, if those guys really knew what they were doing, there would be effective (and safe) medical treatments available, that actually work.
You can bet that the subjects mentioned in those studies were treated by conventional medical methods, and most likely, none of them made any diet changes, at least they didn't make the proper diet changes. You should think of them the same way that some of us on this board view MC patients who refuse to change their diets — they are controls in our ongoing trials to discover and verify the best ways to treat this disease.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Just dropping in with a not-so hopeful update. I'm almost at day 7 of AIP diet and continue at 15 mgs prednsione and plaquenil. The rash has not progressed, but it's not retreating either.Some old rash areas appear to be healing, but new areas are still hot and red. I screwed up and had a little soy sauce last night in a stir-fry (with no rice 
). Had tummy gurgles, gas and D. Frankly, the loose stool is still with me most days, because I'm eating so many darned vegetables and salad! My only starch is LOTS of sweet potatoes, carrots and squashes, but I am DYING for some rice!! And cashews or almond butter! And tomato sauce! I'm also overdosing on coconut, as Oskri shredded coconut with mango bars are the only safe bar I can carry in my purse for hunger emergencies. I'm eating one a day!
My skin is definitely smoother and less dry, so something is working, but I have a nagging feeling this is not going to be my answer. I'm curious how long it takes other rashes like eczema or psoriasis to respond to total elimination diets. Am I being impatient? Should I exercise to sweat more and move the toxins out of me faster?? If I'm going to eat like a rabbit, I at least want some results!!
Going to get my rx filled for steroid ointment and Protopic after all. Gotta hit this from all angles.
I follow an AIP recipe group on Facebook and posted a question about autoimmune rashes and their response. So far, I got these totally depressing posts:
5 months with no RICE and nothing flavored with paprika or other nightshade spices?? I can't do this!!!
). Had tummy gurgles, gas and D. Frankly, the loose stool is still with me most days, because I'm eating so many darned vegetables and salad! My only starch is LOTS of sweet potatoes, carrots and squashes, but I am DYING for some rice!! And cashews or almond butter! And tomato sauce! I'm also overdosing on coconut, as Oskri shredded coconut with mango bars are the only safe bar I can carry in my purse for hunger emergencies. I'm eating one a day! My skin is definitely smoother and less dry, so something is working, but I have a nagging feeling this is not going to be my answer. I'm curious how long it takes other rashes like eczema or psoriasis to respond to total elimination diets. Am I being impatient? Should I exercise to sweat more and move the toxins out of me faster?? If I'm going to eat like a rabbit, I at least want some results!!
Going to get my rx filled for steroid ointment and Protopic after all. Gotta hit this from all angles.
I follow an AIP recipe group on Facebook and posted a question about autoimmune rashes and their response. So far, I got these totally depressing posts:
I noticed a little bit of improvement and then none at all and I'm past day 40. Glad to know that more relief should be coming soon. I flared up the psoriasis this past week with a stupid hot dog. I forgot about paprika. :( Now my joints are aching in my hands and I've never had that much joint pain before.
Don't give up, it took months for my psoriasis to improve! It has now been 8 months and its 90 percent better! No more bleeding, painful skin!!! I started seeing a great improvement after 5 months.
5 months with no RICE and nothing flavored with paprika or other nightshade spices?? I can't do this!!!
1987 Mononucleosis (EBV)
2004 Hypomyopathic Dermatomyositis
2009 Lymphocytic Colitis
2010 GF/DF/SF Diet
2014 Low Dose Naltrexone
2004 Hypomyopathic Dermatomyositis
2009 Lymphocytic Colitis
2010 GF/DF/SF Diet
2014 Low Dose Naltrexone
Zizzie,
Sorry things are not working out so well. After reading your posts this past week, I noticed that you have made numerous changes to your diet by adding keifer, fermented pickles and sauerkraut and starting the AIP diet. It must be hard to sort out how food is affecting you with all those changes. Is it possible to make a small list of foods and track how you are responding? Have you tried keeping a journal? Just a thought.
Sorry things are not working out so well. After reading your posts this past week, I noticed that you have made numerous changes to your diet by adding keifer, fermented pickles and sauerkraut and starting the AIP diet. It must be hard to sort out how food is affecting you with all those changes. Is it possible to make a small list of foods and track how you are responding? Have you tried keeping a journal? Just a thought.
Donna
Diagnosed with CC August 2011
Diagnosed with CC August 2011
I'm trying to keep a journal. I am doing better now. Thankfully it seems I have put a stop to the skin erosions and ulcers. They are all healing, and there are no new ones in sight. YAY!!!!! My skin feels more supple and healthier overall, but light pink and purple itchy patches still remain. They are worst when I get out of the shower, of course. I am finally using the Clobetasol steroid ointment (petroleum jelly based) and tolerating it just fine. The oily goop is rather soothing actually. Haven't had the nerve to start Protopic on the bridge of my nose yet...it's so close to the eyes.
My hope is to clear the rash with the diet and ointments, then start tapering prednisone again to get below 10 mgs. At that point I'll start reintroducing foods.
Problem is, I have to spend 5 days at a conference in Boston November 2-6. What/where will I eat?? I can only imagine being able to find steak, broccoli, sweet potatoes, and salads in restaurants, if that! Yikes!
I made my own natural grass-fed beef jerky - I'll have to have that with me at all times. Dates, coconut bars, carrot sticks, sardines, canned tuna in oil, ??, sweet potato chips? What else will travel well that has no nuts, seeds, grains, etc?
My hope is to clear the rash with the diet and ointments, then start tapering prednisone again to get below 10 mgs. At that point I'll start reintroducing foods.
Problem is, I have to spend 5 days at a conference in Boston November 2-6. What/where will I eat?? I can only imagine being able to find steak, broccoli, sweet potatoes, and salads in restaurants, if that! Yikes!
I made my own natural grass-fed beef jerky - I'll have to have that with me at all times. Dates, coconut bars, carrot sticks, sardines, canned tuna in oil, ??, sweet potato chips? What else will travel well that has no nuts, seeds, grains, etc?
1987 Mononucleosis (EBV)
2004 Hypomyopathic Dermatomyositis
2009 Lymphocytic Colitis
2010 GF/DF/SF Diet
2014 Low Dose Naltrexone
2004 Hypomyopathic Dermatomyositis
2009 Lymphocytic Colitis
2010 GF/DF/SF Diet
2014 Low Dose Naltrexone