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Update: Frustrated and looking for your help!

I have gotten a rash a number of times since January 2008. This picture is from my bout last May, which I documented in pictures thoroughly. This picture was the clearest and most PG that I could share. The rash off and on has been going on almost 2 years and I am still getting it. I thought it was related to gluten exposure but now I’m not so sure as I have been super careful the past 6 months to not even have it in my house. I mean really, unless someone is going around the Health Food Store sprinkling flour on all the produce, there’s no way I’m being exposed.

Doctors and naturopaths look at me like I’m an alien. None of them have ever seen it or have any explanation. It does not seem triggered by any food. It does not seem triggered by stress. It does not seem triggered by a change in my lifestyle in any way. Basically after 2 years I’m as dumbfounded as the first time I got it. I just have no idea.

I thought the last time I got it that taking vitamin C in large doses was helping. This time it is not so it was probably a coincidence. Nothing helps, not even Benadryl. I sleep (barely) with ice packs, shifting them and shifting my position every hour. It’s miserable.

The “rash” starts out on my chest, always. It sometimes covers as much as my entire chest from neck down to bottom of the rib cage, up the back of my neck covering my scalp, and all the way down my back to my tailbone. I sometimes get some random spots at the bend in my leg at the hip.

If anyone has ever seen this or have any advice for me PLEASE contact me or comment or anything!

See my previous post on Celiac Disease for a full history of the rash.

Kat

I have been following the Specific Carbohydrate Diet since January 2008 to recover from Celiac disease. As part of the diet, I don't eat grains, sugar or potatoes and prepare all my meals from scratch.

43 Comments

  1. I would think that it's food related (though stress surely doesn't help).
    I've had rashes (including in my back and chest but not nearly as serious as yours) because of a lack of omega 3s (which usually goes with dry skin) and/or eggs.
    Now it's all gone.
    Do you eat dairy products too?

    I think it's important that you remain non-stressed (drink herbal teas such as lavender, lemon balm, oatstraw…), that you get proper sleep and nourishment (if you do GF grains, oats are know to soothe the nerves). Also eat lacto-fermented foods (yogurt, sauerkraut, kimchee, kefir…etc).

    It is possible that your skin rash is due to an imbalance in your gut (I wouldn't say candida because I'm no expert) so working on your gut's flora may be a good idea.

    I also know that skin eruptions are a form of detoxification so detoxing your body with nettle, dandelion…(liver friendly herbs) may be as good idea as well.

    As I said, I'm no expert but I hope these tidbits can help you somehow and that you'll feel better soon (keep us posted).

  2. Also you could use the following on your skin: aloe vera gel, calendula infused oil, shea butter and african black soap.

    These are very soothing and helpful for skin problems.

  3. Now that I'm re-reading your post, something came to my mind: maybe it's simply your detergent. If indeed you've been using the same detergent for as long as you've been having these symptoms, you might very well be allergic to your detergent.

  4. Hi Alchemille,
    I have eaten SCD yogurt on and off the past 1 year. I got the rash both when I was off dairy and on. I do eat sauerkraut, fermented salsa etc on a daily basis.

    I do have candida but it has been a lot better lately. Maybe some symptoms have gone but the rash remains? I am still on diet/supplements to try and get rid of it. Lots of raw garlic!

    I have been very good about sleep, 9 hours a night every night. I'm in bed by 10:30. I have been sleeping quite well lately. I am really working on stress and feel like lately I have been getting better with that. Maybe I just need to de-stress even more!

    I am interested in the detox thought, I am trying more and more to eat a diet supporting my liver health and may look into detox type herbs.

    Detergent, I did change to a natural one. My skin cleared up on my back (back acne) but the rash still happens. Someone else said to try getting rid of fabric softener/dryer sheets. I think I will try that for sure.

    Thanks for all your help, it can be quite miserable dealing with this alone. Nice to have some help 🙂

  5. It looks so much like poison ivy it is unbelievable. If it itches madly, it could be poison ivy or a related plant. Do you think there is any way you are getting exposed to a plant? My daughter kept getting poison ivy on her temple one year and it drove me crazy trying to figure out where it was coming from. One day I looked out the window and saw her in her tree swing with her temple resting against the rope. There was poison ivy on the tree but no obvious ivy on the rope. She knew how to avoid it (as we all must in the south) but we never saw any ivy on the rope. It must have been transferred to the rope and stayed on there for months (it is oil-based so doesn't wash away with water). Even if it isn't plant-based it really looks to be a contact rash. I am ordering Soapnuts because we are all allergic to corn, maybe that could be a detergent alternative for you to try. Believe me it is impossible to find clothes detergent with a totally clean label so we are going to give Soapnuts a try.

    Another thought: Maybe you are reacting to the chlorine/flouride in the water? I know that my face gets rosy red every time I take a shower and I have toxicity issues. The shower seems to inflame any skin issues on me and my daughter. I am looking into a shower filter for us.

    One more thought: do you have a front load clothes washer? We had problems at one time with mildew/mold issues in the door gasket of our washer. You could be sensitive to mold.

  6. Hi Kat,

    Whenever I have hardcore detox I get the rash. Mine doesn't blister over though.. It gets red and even at times painful and then dissipates.
    Detox I had happen was when I was treating Long term Lyme Disease and doing certain homeopathic protocol and regular die-off. I also connect the rash to when I eat too much or too little yogurt- but I could be wrong about that.

    Recently I redid my fatty acids profile from Metametrix;

    http://www.metametrix.com/content/DirectoryOfServices/0040FattyAcids-Plasma

    I added Borage oil and it seems to have helped my over all skin sensitivity and PMS. I got a bit of a rash break out a couple of weeks ago but it was tame comparing to past rashes.

    I also take D3 sourced from Wild Salmon and not Lanolin which is usually sheep wool derived.

    Jodi

  7. Hi Kat,

    I don't use any type of soap- I can't or my skin gets really irritated especially in the winter..

    Have you tried putting Arnica on it?

    What kind of supplements are you taking?

    Jodi

  8. My heart goes out to you, that looks so uncomfortable. I wanted to say that in a Celiac's presentation I went to, the MD who was speaking said that Dermatitis Herpetiformis (the rash associated with Celiac Disease) is always symmetrical on the body. Hence if you have it on your left wrist, you will have it on your right. I do not get the rash so I don't have experience personally but with some research maybe you can tell if it is gluten related.

    Also I use essential oils instead of dryer sheets. If you want to get rid of the sheets but still have that nice smell when you open the dryer. Wet a small rag or wash cloth. Drop up to 10 drops of your favorite essential oil (use only 100% pure EO for this) and toss in with the clothing being dried.

    Good luck to you!

  9. Hi Kat – Have just found your blog. Have the Dr.'s ever suggested psoraiasis? I have that and it sure looks the same. I usually only get it around my hair line and the occasional patch on my leg. They say it is hereditary, stress and diet play a huge roll. The only time I am free of it is in the summer months when there is sun exposure. I too have found aloe vera gel to help relieve the itching and burning sensations. I eat whole, organic foods as well as gluten and lactose free for the past 15 yrs. and still have psoraiasis. Good luck, hope it gets better for you. Ina from the Westcoast

  10. my first thought was DH but if you're strict on the GF diet including hygiene products that seems unlikely, then I thought psoriasis. It looks horrible I'm so sorry. I hope you figure it out soon. Do you eat dairy? I get a rash when I eat dairy, and I break out in bad acne when I eat too much sugar. I wish we had more answers for you!

  11. I had the same kind of "mystery" rash that came about about a year and a half ago. Mine was really bad. I tried everything: switching detergents, aloe, calendula, aveeno oatmeal baths, dead sea products, antihistamines, really everything. I had a battery of allergy tests done which all came up negative. Finally, I went to the doctor and got a prescription for mometasone furoate. It is a steroid cream. It was the only thing that helped me, and it helped immediately and a little went a long way. I know it's a steroid, but it is the only thing that helped and my skin was really awful, really painful before it. I am now mostly back to "normal", though I keep a tube in my nightstand for maintenance. I'm still not sure what caused it, and it's really frustrating not to know, but at least I can manage it now. I hope this helps!

  12. Kat, since you posted this as a thread at the forum, I have got to the bottom of what is causing
    my rash! SOY! When Susan posted about Cod liver oil I remembered that mine
    caused problems for me too and when I looked into it I found out that many cod
    liver oils have soy – I think as a preservative. I also remembered that getting
    rid of the laundry sheets, after reading many of them contained soy, made my
    legs feel so much better. Then I remembered reading about Celiacs and soy – how
    many celiacs react to soy similarly to gluten and soy can do the same thing to
    the intestinal villi (and perhaps Derm Hep too?). So I scoured my supplements
    and personal products and found a bodywash with soy and found that the 5-htp
    spray the doctor gave me contained soy. Within 24 hours the itching stopped, it
    looks like the rash is clearing up completely, and a nagging pain in the lower
    right quadrant of my intestines is even feeling better! I hope that this info
    helps you – I would really look into the laundry detergent. Apparently a lot of
    them have soy, and I just ordered one that specifically says "no soy".

    Good luck!

    Dawn

  13. That looks just like a fungal diaper rash my son had at one time. Have you ever had an ELISA IgG food allergy panel done? Also, Baking soda can be used in place of detergent. I feel for you and understand the desperation and frustration to get some relief. I wish you the best.

  14. Have your doctor take a biopsy of it to check for psoriasis. Psoriasis is an autoimmune disease also. My daughter has it and crohn's disease. She is following the SCD, so she is also gluten free. Good luck. I hope you can find out what it is.

  15. Dead sea mud (and salt) also helps with psoriasis and various skin affections.
    This is why lots of people with skin problems go to the Dead Sea.

  16. My daughter has the same thing all over her arms. Like you, I've gone crazy trying to figure out what's causing it, and I can't, though I know it definitely has something to do with SCD. The prescription steroid works, but it always comes back.

  17. I get weird little rash spots on my legs a lot. I've been getting them on and off for about a year and a half now. It's not nearly as much as you've said you've gotten but it looks similar. It's very itchy and will even burn horribly. And it will often last for a week or more! I thought my last bout of it was due to a pair of wool socks I wore but it only showed up on one of my legs so I thought it was odd. I was just wondering if you had any suggestions (aside from going gluten free as I have been doing this for about a month now). I never have it when I go to my doc so it's really frustrating.

    I would appreciate ANY help or advice you can offer!
    Brandy

  18. I actually am doing grain free (Specific Carbohydrate Diet) and that helps. Eating plenty of good fats seems to help my skin the most. Lots of butter/ghee, cod liver oil, fish oil, olive oil.

    Also getting rid of harsh soaps and shampoos helps. I use a natural bar soap for washing, and then baking soda/vinegar for my hair. Soap nuts for washing clothes and laundry balls instead of dryer sheets.

    Stress and lack of sleep seem to trigger mine as well. I recently had a bout of the rash but it was very minor, probably because I was eating and sleeping well, and taking care not to stress.

    I haven't had much luck with doctors on this one yet!

  19. Kat, I hope you find some relief permanently. I posted earlier about corn allergy and I have learned a lot more since then. Going grain free has probably cut out a lot of corn in your diet, but it is hidden in so many places with so many names. Apparently a rash like yours is common in corn allergic individuals. There are over 180 different corn derivatives. There is corn in vinegar and waxes for fruit/veggies and all medicines have corn, it is on raw meat, the carrier for synthetic vitamins used to enrich grains and dairy are made from GMO corn (even organic dairy). Try using Bragg's organic apple cider vinegar for your hair since it has no corn. Make sure the natural bar soap has no corn because "natural" items can contain GMO corn derivatives.

    It sounds like you are really doing well on your diet. We are doing GAPS which is based on SCD and it has helped us tremendously, too. We love making and eating fermented veggies. 🙂

    If you need help avoiding corn (and it is really difficult even for us and we don't eat any processed foods at all), you can get some tips on the avoiding corn forum. http://forums.delphiforums.com/AvoidingCorn/messages. Good luck

  20. Thanks KC, the soaps and everything I use are corn-free. Meats are direct from farmers and corn-free. veggies are all organic with no wax at all. I never thought about plain white vinegar though. I use apple cider vinegar on my hair, but tend to use white vinegar in food because of taste preference. Maybe I should get used to the apple cider vinegar taste instead.

    Thanks for the info!

  21. Hey Kat,
    That stuff looks really similar to what I have. I have UC, and also follow the SCD since august 2009, quite a bit of the rash that was on my chest is gone, but I still have some on my lower legs and feet pretty bad, I am drug free since October 2009, and somewhat just hoping it goes away, unfortunately, its not looking like that is the case so far on some body parts. You have a great blog, I cant wait to get back to reading more!
    -Adam (ihaveuc.com) blog site I've started a few months ago geared towards ulcerative colitis people, with the message of "DIET IT IMPORTANT!!!" but docs probably wont tell you that…unfortunately

  22. Hi Adam! I checked out your blog too, lots of great info. I like that a few of you are coming together on it. Great work!

    My rash has been absent since this last one. I plan on writing an update again soon. I have some theories..

    I still don't have any diagnosis of any kind, but it seems rashes and skin problems are associated with many different auto-immune diseases. I would hope your rash gets better as your other symptoms get better. I'll let you know when I post about it again, you can see if any of the things I do might help you.

  23. Hi Scott,

    My PUFA intake is only about 2-3%. I'm well aware of it! My PUFA % is lower since getting the acne back, but it hasn't helped at all. The acne really is just the hormone problems I think. Sugar doesn't seem to affect it either.

    I really need to do a post on PUFAs, people on SCD eat way too many nuts.

  24. Ok that is excellent, PUFA's at 2% to 3% is great. They can take up to 2 – 4 years to cycle out of the body though, and in that time still cause issues. Ya the best nut for mega low PUFA's is the macadamia, and they are yummy!

    My belief about solving the acne riddle has been to repair the metabolism. I have been following a over-feeding principle for the last 6 months (details on my blog). But it has done my skin good so far and the milk diet is the last 'extreme' thing I will try, and my skin seems to be responding as well.

    Reasoning behind overfeeding with nourishing foods, is to pour nutrients into the body, while also bringing leptin in nominal ranges. Leptin is thought to be a master hormone, that affects, thyroid, adrenal, insulin, cortisol, sex hormone, serotonin… get your hormones functioning optimal and therefore reducing and finally getting rid of acne. Much to be studied there!

    I don't believe certain foods cause acne, it is what your body does with food that causes acne. Broken metabolism means broken hormones… then all sorts of things go wrong, diabetes, obesity, auto-immune, digestion, skin probs…

    If you have not come across her yet, Schwarzbein has alot of good info that might work well with you and SCD. I have two of her books and would gladly loan them to you.

  25. autoimmune responses:
    have you had immunizations, my understanding is that some of them contain squalene (spelling?) as an adjuvant to make the shot more potent my firing up the immune system, sometime the immune system does not calm back down and instead begins attacking things it shouldn’t because it has nothing else to do, so it seems our immune systems can attack our own bodies when in this state because of mans interfering with the body in this manner.

    I wonder if you have had the rash or less of while sick or no?

    there are plants that cause rashes like this does it itch, poison ivy, poison sumac, poison oak comes to mind if it itches.

    if it does not itch pollen form the mugwort (artimesia, wormwood family) will cause a rash, i once chopped on down some to stop it from spreading seeds, my mistake, the pollen covered me, it was in full bloom, and within an hour i was covered in a similar looking rash wherever my skin was exposed it was unsightly but other than that no major discomfort. I turns out that back in the days of the romans woman used to use it like rouge today.

    so we have;

    topical, contact type reaction. like bathing water with high iron or bacteria or detergents, etc.

    true autoimmune where the body attacks itself for whatever reason, usually genetic but sometimes man made problem.

    immune where the body attacks something and one result is the rash or the rash is symptom like chicken pox (does not look like it)

    food sensitivity where you ingest a particular foodstuff(s) that causes a reaction for whatever reason, like shellfish. usually this is very bad and almost immediate.

    food sensitivity where you ingest particular foods and because of a defect in your gi tract, large molecules not normally found in your blood cause a reaction occur, like wheat or soy, as in ulcerative colitis, celiac, etc.

    another, an organism has made itself at home in you, could be zoological as in a worm or a fluke, or a particular bacteria or a virus and not necessarily in their usual places.

    could be also chemicals from the environment, stuff like round-up, it is after all a endocrine disruptor and that could be topical or ingested. genetically modified organisms have antibiotic markers in them (could be a problem), some have bt toxins in them (could be a problem, rashes have been reported where sprayed with bt) and some have genes to modify the plants natural reaction to being sprayed with round-up, excessive round-up residue left on plants you ingest. dioxins and pcb exposure can cause rashes although those dont look like yours.

    rarely, it could be psychogenic in nature, where for whatever reason the mind causes this symptom.

    medications reacting to sunlight, or fluoride or chlorine in water. even breathing the vapor of such water.

    biochemical imbalances, for example too much bromine displacing iodine. bromine from bromoseltzer or brominated vegetable oil also they were (dont know now) using some kind of bromine as a fungicide on croplands for fungicide on crops like strawberries. or too much iron which can lead to a good may bizarre symptoms both in the blood and the liver, which obviously can have effect throughout the entire body.

  26. @joe Thank you for posting all this info. I did find out the rash was strictly related to gluten ingestion, but have heard from others who are still trying to figure out what might be causing theirs. It can be a combination of things too, so it’s worth investigating all possibilities!

  27. Greetings! I was just searching for help myself! Oh man how the last year has been intense with my reactions, which primarily occur on my face neck and chest. Sometimes the itching is so so bad. I have pictures that I have taken which could be used for a horror movie. I have had many where my WHOLE FACE is red, with hives, all down my neck,and chest. I am really really frustrated as I have yet to find out the cause.
    only recently introduced to the GAps diet, and am making broths, as I do feel my reactions are related to gut dysbiosis. But non the less, I am really tired of breaking out nearly every day. I think now i am reacting to the fermented foods, and am slowing down on the raw coconut ferment i have been drinking. I am just so wanting to feel better.
    So, I can TOTALLY relate. please email and maybe we can share on some things that do work for us…..
    Ruth

  28. Hi Kat.

    As with all the others responding to your forum, I was searching the internet for pictures that looked similar to the re-occurant rash I have on my upper back and sometimes get on my chin that itch like crazy!! I came across your picture and couldn’t believe how similar it is to what I get! As a matter of fact, I have it right now. I wanted to mention that I was diagnosed with herpes 2 last summer and everytime I have a herpes outbreak I get this strange itchy rash all over my upper back. The doctor says its acne, but I really dont think he knows what it is, to be honest. I have never had acne itch so much and spread around the base of my neck and behind my ears.

    I read somewhere on here that someone was suggesting a possible link between this rash triggered by auto-immune disorders. I think that could be what is going on here. I also have ulcerative colitis. Anyone else feel there could be a link between auto-immune disorders and this re-appearing skin condition?

  29. @Ruth email sent 🙂

    @Mommg I’ve had many tests done and don’t have any herpes related viruses. There is a definite link between autoimmune disorders and rashes. Mine is certainly related to Celiac and as long as I’m staying away from gluten I don’t get it anymore. If you’re still suffering from yours send me an email and I can share some advice and resources.

  30. I came across your post while searching Crohns disease and rashes. I was recently diagnosed with Early Crohns (just meaning not full blown or needing surgery at this point,) but this rash has been persistent over the last few years. It became so prominent on my cheeks and forehead that my Dr. began testing me for Lupus. Turns out the only thing that works even a little is triaminalone (something like that) lotion or a course of steroids. It at least gives temporary relief but then it comes right back. It is now mainly focused on my chest, neck, and arms. occasionally I will get a break out on my stomach and a few on my legs and back. I could not believe I found someone with the same rash. At least I do not feel alone and like a wierdo anymore. I hope it helps even just a little.

  31. Hi I have had a rash going on 5days it looks similar to this. I do have a friend that has gluten allergies and he had mentioned to me recently that theres also gluten in cleaning products. I wonder if that includes soaps and shampoos?

  32. Just came across your blog in hopes to find answers for my sons skin rashes. Reading the first few sentences of your story, made me think of my Aunts battle with hives. Have you ever had any kind of surgery? My aunt had similar rashes pop up for years. After 8 years, they finally discovered that she is allergic to metals. She had back surgery prior to the rashes and they had put in a chrome piece to fix things. They finally took it out and she no longer has hives. Just thought I’d mention it just in case! It might not be metal but any mesh or anything in your body might trigger a reaction from an old surgery! Good Luck!

  33. I had a rash that looked like yours. It started on my ankles and spread up my legs until it covered my whole body and lasted for years. I realised that it got worse when I had my period. I went off the pill and within 2 weeks 90% of the rash cleared up. The hormones in the pill were causing the rash.

  34. @Kat

    I don’t know if anyone has mentioned this in any of the above comments (and I realize I’m posting WAAAAAAAY after-the-fact), but I’m fairly certain that irritation is some type of Candidiasis (skin yeast infection). I have the SAME thing, in the SAME location, and after about 6 hours of research, it seems the most fitting.

    Hope you’re doing better (8 years later!).

    Cheers,

  35. Last week I got the exact same rash as you, never had it before. The only thing I changed was a month ago going low carb high fat, it seems to me, it’s the keto rash; when eating very low carb several people experience this. The cure seems to be eating more carbs.

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