Thanks everyone so much for all the input. I have never received so much help before, it’s so great!
I did see my doctor today and she still thinks it’s Dermatitis Herpetiformis (DH) the Celiac rash. After doing more research she found that it does take anywhere from 2 to 10 years for the rash to get better once gluten is eliminated. I have been gluten-free for 2 years, but didn’t start looking at body care products until 6 months ago. My doctor did another skin biopsy this time to finally get a real diagnosis. She did one last time as well, but it was inconclusive – she had biopsied a spot, while it should have been of unaffected skin beside a spot. She also did a viral swab and bacterial swab just in case, although we don’t think anything will show.
Some of the comments people have left me have been so helpful. The main trend seemed to be about laundry and body care products. As of last week I was using a natural laundry soap with no corn, soy, gluten, or any other known allergens. Just to be safe though I have already switched to soap nuts and re-washed everything I wear and my sheets/blankets. I use dryer balls now instead of sheets. I do not use soap or hair care products so that was easy. I continue to use apple cider vinegar and baking soda for my hair, and coconut oil as needed for dry skin. I really really really hope that these changes help!
–Edit: Also wanted to add that I got a shower filter as well.
Some other comments have been about mineral or vitamin deficiencies. I do currently take a B complex with 1g B12, 2g vitamin C with bioflavonoids, a multi-mineral without iron, extra magnesium citrate, and fermented cod liver oil with no preservatives. All supplements are gluten, corn, soy free and SCD compliant. My B12, folate and iron levels are in the mid normal level. I haven’t had mineral levels tested. I am now thinking of switching to a liquid mineral supplement to see if that is better absorbed. At this point I won’t bother testing mineral levels, and just assume I’m low.
I’m also going to look more seriously into liver health. The liver aids in detoxing which maybe could help this condition? I’m drinking some lemon water in the morning, hoping to encourage stomach acid and bile output. Also I’m eating lots of veggies including broccoli, cauliflower, cabbage (sauerkraut), onions and garlic. I tolerate eggs well and will continue eating those. My naturopath wants to start me on Chinese herbs for (possible) endometriosis and that should also help my liver. The herbs are Bupleurum and Tang Kuei. I plan to go off the pill and hope that helps my liver health as well, not having to deal with excess hormones.
Some interesting things I learned about DH:
1. Iodine can exacerbate it. The reaction in the skin requires iodine to cause the itching blisters, so it’s advised not to take extra iodine. My multi-mineral had iodine, I will look for one without.
2. Contraceptive pills have been shown to exacerbate it. I have been on the pill way too long now. I want to go off it, and thinking this was the last little push I needed to go off completely. I do suffer from suspected endometriosis, which is why I was put on the pill in the first place. I’m now working with my naturopath to try Chinese medicine and herbs and such to help me get off the pill and deal with it. I may just speed that process up a little.
3. The rash is caused by IgA antibodies present in the blood circulating and depositing in the skin. This is different from allergies where IgE antibodies cause hives, which will respond to anti-histamines. The DH rash will not respond to any anti-histamines, which I found out since it doesn’t respond at all to Benadryl.
4. The levels of IgA antibodies can take a long time to normalize, up to as long as 10 years even when gluten-free. I am hoping that with SCD and healing on that, maybe it won’t take quite that long!
I also just wanted to post what I know this rash is not (based on doctor’s diagnosis and what I have tried):
• Eczema, Psoriasis, Urticaria, Lupus: all possibilities like this were eliminated my first visit to the doctor, who consulted with a dermatologist, did a skin biopsy etc
• Shingles: no pain at all with my rash, and it covers such a large area and reoccurs
• Poison Ivy: first time I got the rash was in January, dead of winter, when everything was covered in about a foot of snow/ice.
• Acute stress: A couple of the rashes may have been provoked by stress but the overwhelming majority of them have come on during periods of relative calm and happiness. I realize long-term stress can certainly affect health in any way and I continue to work on that. I feel much less stressed these days, so that’s the good news!
• Scabies: first clinic visit the doc thought it was scabies. I coated myself in toxic cream to no avail!
Thank you again to everyone. I probably won’t have time to respond to each individually, that’s how many were so helpful! I will figure this out, and feel now like I have some ideas to stay focused on and a plan of action to follow. Oh and I do have a dermatologist appointment, but it’s not for another few months. Hoping to figure it out before then.
—Edit to answer more questions:
I do have 2 cats, they are on gluten-free, grain-free food.