Hi all,
I have been dealing with a horrendous rash that may be DH, but getting a diagnosis has been frustratingly elusive. I know you cannot diagnose me, but I figured it could not hurt to tell my story and see what thoughts you all have. It started 3.5 years ago as a few itchy spots under my right breast. They came and went for about a year and then a few similarly itchy spots showed up on my left sideboob (for lack of a better term). This went on for the next 3 years, coming and going, annoying and itchy but not a huge concern. My doctors told me it was probably fungal and that I should wash my running bras in hot water. I tried antifungal creams and they did not seem to work. Still it would go away, sometimes for months at a time, and come back, always in the exact same spot, then with a few more added spots nearby.
Fast forward to this last winter, when it started spreading rapidly and to new areas: a few spots showed up on each flank at waist level, and the original sideboob/underboob spots spread into each armpit and some spots showed up on my lower back/sacrum. These were clusters of red dots, looking kind of like pimples. The itch was out of control - it seemed disproportionate to the size of the spots.
And it just kept spreading over the next 7 months until now. I am in the middle of a flare up, and am covered from armpits to waist, in hive-like, flat topped clusters with some clear fluid filled blisters thrown in here and there. It always starts as a little pimple-like red spot that within 24 hours will reveal itself as the hive-like cluster, spreading rapidly and frighteningly. The craziest thing is how symmetrical it is! If it shows up on one side, I can be assured that the other side will flare up within a couple of days. My torso looks like an angry red Rorschach test. It's on my tummy, down both sides from my armpits to waistline and across my lower back.
So, I have had 5 punch biopsies, several blood tests (including TTG), a patch test and all have been inconclusive. The biopsies have come back with the same thing: Spongiotic dermatitis (which the docs interpret as allergic contact dermatitis). The first three biopsies were all done within the rash, the last two were done with at least one next to the rash site and looked at with direct immunoflorescence.
By the time this last biopsy was done, I had been gluten free for 12 days. I had read about DH and was desperate for an answer and went completely gluten free. This was not that hard since my Significant Other is gluten intolerant, so I don't bring gluten into the house since it's just easier to eat what he can eat. There were a few things I needed to weed out - mainly older condiments, like hoisin sauce. Before deciding to go gluten free, I would only eat gluten-containing items if I went out with a friend, or drove by a bakery - this wold happen, at most once or twice a week. Then I would goo weeks or even months without eating gluten. The last day that I ate gluten was May 30 of this year. The last biopsy - the one done correctly for DH - was done on June 11 of this year, but I now realize it may have been all for naught, as I had been gluten free for 11 days at that point. June 8th and 9th were the worst flare-ups yet, when it it spread to my tummy for the first time. By the time June 11th rolled around, it was looking marginally better (drier, darker red, less itchy). And it continued to improve dramatically until June 28th. Such relief! My skin sloughed and was smooth, with lots of browning spots whereever the rash had been.
Then on June 28th a few dots showed up on my tummy and it started all over again. Desperate, I went back to the internet for answers (not always a great idea, but this forum has been more informative than any of my doctors and derms). I read about Iodine and was dismayed. I had been taking cod liver oil daily from April onward. What's more, from June 20th - 25th I had been at the coast for my 37th birthday and feasted on fish and oysters several nights. Maybe that was the cause of the reflare? The last time I ate something that was iodine rich was last Saturday, July 10th - few bites of salmon, before I realized what I was eating. Gah!
Sheesh. I am going on and on. But I have so much to ask you all. My doctors are stumped. They have ruled out DH, because they feel that it should be gone if I am truly gluten free. I mention the iodine connection and get blank stares. They are talking about prednisone and immunosuppressants, and I do not want those. I want answers!
Everything I've read about DH says that it can take quite a while to clear. I don't know what that means. Does that mean that one can keep having flare ups, even if they are gluten and iodine free?
I am ordering Panel B from EnteroLabs. My doctors are hesitant to do a gene test, since they feel we have ruled out DH. I still feel that DH is the most likey candidate. I am asking for a referral to an Immunologist. Are there any other avenues that you all would suggest I explore?
What I have done thus far:
- Changed out all my underwear and undershirts for unbleached, undyed, organic cotton replacements. This is the only thing that I wear next to my skin.
- Got rid of my running bras (Not that I have been running since I have been so uncomfortable)
- Changed out my laundry detergent for Charlie's Laundry soap and rinse everything twice
- Got rid of shampoo and conditioner. I now wash with baking soda and rinse with apple cider vinegar. I do this over the sink, not in the shower.
- I rarely use soap now, mostly just water. If I do use soap it's Dr Bronner's Baby Mild
- Got rid of all lotions. If I need to moisturize, I use either olive oil, coconut oil or sunflower oil.
- I wash my face with water most days. I will use a little baking soda in water if I need to exfoliate, and dab a littel sunflower oil on to moisturize.
- I eat only at home, or at my mom's house. I feel fairly confident that my home is gluten free. My mom only cooks gluten free stuff when I am over there, but my parents do still eat bread. I never use their toaster.
- I am eating only fresh organic fruits and vegetables many of which I grow myself, pasture raised/grass fed meats, home grown duck and chicken eggs (whites only) nuts, some rice and potatoes.
- I take a B-complex, Calcium/Magnesium/Vit D, and a magnesium/L-theanine mix. All say they are gluten free
- I am also taking a Probiotic called HLC Synbiotic Intensive. They say that they are gluten and casein free
- Xanax, occasionally. .25mg. I started having panic attacks in April. 
What am I missing?
I am sure there are things I am leaving out. I am so baffled and scared. 7 months ago I was one of the healthiest people I know. I still feel healthy underneath the rash, though I am often tired or sad. Here are some pictures: the first shows the symmetry on my tummy, and how angry red it is at it's worst; the second is a close-up of some of the blisters; the third shows my side and how it darkens and scabs over as it starts to heal, plus the brownish areas where the rash has cleared.
