Clinicians, if you read anything today, read this: A case of total body contact dermatitis of unknown etiology, hives and dermatographism.
Ellen found my practice after listening to a podcast I did on allergic disease with Dr. Amy Meyers for her Autoimmune Summit. It’s at times like these that I’m glad I do outreach of this nature. I don’t resolve all the various issues that folks come to my office with, but there are certainly those times when “it was meant to be” seems to fit.
For the last year-and-a-half, Ellen had a total body rash so severe that she’d contemplated suicide, despite an otherwise storybook life. (See baseline and follow-up photos below.)
Two baseline photos sent to me on 01-21-2015. Note that these pictures were taken while on prednisone.
Ellen is a married 39 year old woman with two young kids. She called my office out of desperation, she said. She had a total body rash so severe that she’d contemplated suicide, despite an otherwise storybook life. She described her rash as feeling by turns painful/burning/pruritic. Visually, it was red/raised/scaly/crusty with oozing vesicles; sparing only her anterior thighs, hands and face…. It was non-responsive to almost every medication except oral and topical prednisone and about 200mg of Benedryl per day. And even these big guns were limited in their efficacy, only taking the edge off and enabling her to survive her day.
Understandably, however, her dermatologist said that after 18 months, he had to permanently taper her off the steroids. She’d gained over 40 pounds, and her skin was so friable that even the slightest scratch of an itch resulted in bleeding. They’d previously tried Plaquenil (worsened rash), cyclosporine (couldn’t tolerate) and Cellcept (developed severe flu-like symptoms).
What Ellen described as a rash was actually a collection of different skin problems, including contact dermatitis of unknown etiology, eczema (atopic dermatitis), hives and dermatographism.
It turns out that what Ellen described as a rash was actually a collection of different problems, including contact dermatitis of unknown etiology, hives and dermatographism. She’d seen multiple dermatologists, including a top researcher at a local university. Patch testing was positive for eugenol, nickel, fragrance, neosporin, bacitracin and UVB. He suspected her reaction was caused by sun and sunscreen and advised avoidance. She did, to no avail. They also gutted and rebuilt their home’s interior, sparing no expense to remove all possible antigenic materials. Nothing worked.
Literally any item that Ellen came into contact with could leave its mark. Her back was a mirror imprint of her nightgown in the morning. Her purse left a band on her arm after she carried it.
Ellen was reactive to virtually EVERYTHING in her environment. Her dermatographism — unlike what you learn about in school, “I can write my name on her back” – -was more reactive than anything I’ve encountered. Any item she came in contact with could leave its mark. Her back was a mirror imprint of her nightgown in the morning. Her purse left a band on her arm after she carried it.
Her hives were similar in sensitivity. Ellen hadn’t had a hot shower in months, as she’d break-out in full-on hives. Warmth from her car seat heater? Hives on her calves.
Surprisingly, Ellen’s personal history isn’t significant for any remarkable allergies beyond seasonal hay fever; nor is there a very compelling family history. That said, skin prick testing done after the start of the rash, showed positive reactions for almost everything environmental, but no foods.
As I investigated for antecedent and triggering factors, there were two clear smoking guns. Indeed, Ellen herself knew these were big deals. (FYI- I’ve added the timeline to my patient intake forms, so they can start connecting these dots even before we begin talking.)
- Difficile colitis after sushi-triggered food poisoning was a clear antecedent factor in the development of Ellen’s rash.
In 2010, Ellen developed food poisoning after eating sushi. She was hospitalized for a week. After developing C. difficile colitis, she was treated with vancomycin. Her gut function has been a problem ever since; she passes up to six loose BMs daily. The lasting damage to her microflora and gut wall had to be a piece of her extreme hypersensitivity response.
After six months of no sleep, lattes and straight sugar diet, Ellen suddenly developed the rash.
Just preceding the onset of the rash, in mid-2013, Ellen’s year-old infant girl would not sleep for more than 45 minutes at a stretch. Ellen herself got very little sleep through the night, and as a result of this, her food intake deteriorated. Her diet consisted of “lattes and sugar.” After six months of this, Ellen woke up with the rash.
When Ellen came to our clinic, my overriding focus was getting her through the final leg of her steroid taper without the common, but devastating possibility, of rebound dermatitis.
Patch testing pre-treatment.
When she came to my office, my overriding focus was getting her through the final leg of her steroid taper without the fairly common, but devastating possibility, of rebound dermatitis. We had about two weeks to prepare her body. Not enough time for lots of labs, but we ordered them anyway. They would guide us later.
Of course, I anticipated finding nutrient deficiencies after years-long chronic diarrhea; IgE food allergies (yes, despite the skin prick testing being negative) and IgG sensitivities; and dysbiosis, intestinal permeability. I also suspected food cross reactions with her myriad environmental allergies (nickel, latex, pollens, etc.), and a possible histamine and/or lactose intolerance. Since her home environment was impeccably clean, we didn’t need to look there.
Ellen had started a full Paleo diet prior to our appointment. This dietary change did NOT benefit her skin, although there was mild gut improvement.
Remember that Ellen found our clinic through the Autoimmune Summit. She was savvy with regard to her health. She’d already stopped gluten for some time and had started a full Paleo diet. These dietary changes did NOT benefit her skin, although there were some mild gut improvements. (Dairy seemed to worsen diarrhea.)
As you can imagine, after I removed all the possible food reactions, Ellen was left eating basically leaves and twigs. Not quite. But her diet was Spartan in the beginning. And for this kind of therapeutic- and temporary- restriction, unless you have the time to figure out these diets yourself and determine nutrient sufficiency (not to mention recipes, shopping lists, palatability, restaurant options, etc., etc.), you need a whip-smart nutritionist on your team who works very closely with the patient. Her diet also needed to be organic and preservative/additive-free, as much as humanly possible.
In the beginning, I stopped the various supplements she was already on so we could monitor skin. I was careful in prescribing a simple, traceable starting protocol of hypoallergenic nutrients primarily geared toward dampening the possibility of rebound dermatitis. These included an essential amino acids blend, diamine oxidase (for possible histamine intolerance), and very low dose probiotics (lactobacillus and bifido-specific species for allergy). Homeopathic sulfur (for itch), cromolyn sulfate (mast cell stabilizer), and bicarbonate (anti-histamine) were all prescribed as needed. I also added a prescriptive ceramide topical and dilute bleach baths.
The sulfur, bleach baths, ceramide topical were reported as useful; bicarbonate and cromolyn sulfate were never used. Ellen responded to our protocol so rapidly, she stopped steroids before the end of her prescribed taper. She never experienced rebound dermatitis. Not surprisingly, Ellen lost over 40 pounds — the steroid induced weight gain — over the course of about ten weeks. Her diet was not calorie restricted.
Below are Ellen’s baseline and follow-up photos. Note that she had a mid-treatment flare after having cantaloupe and Boar’s Head salami. I believe the offender was most likely the cantaloupe, given its potent cross-reactivity with certain pollen, although the additives in salami could’ve been at issue.
Currently, Ellen’s skin is clear. She experiences transient, mild rashes on occasion, but she describes herself as totally better. We are currently expanding her diet very carefully — nickel and histamine containing foods appear to be fine, although they may have been an issue early on; she tolerates many of the common antigenic foods, like egg and soy. We continue to rebuild her gut and improve her nutrient status. Her supplement protocol is more involved, as I am no longer concerned with rebound rash; and she’s much less reactive. We’ve started sublingual immunotherapy for environmental and food antigens.
In conclusion: If this case has been interesting to you, Stay Tuned! I intend to write about it in greater detail for publication, will include her laboratory results and will cite references.
02-09-15. First follow up photo. Much improvement! Life is good. Off prednisone and Benadryl for about 20 days.
Mild flare after eating cantaloupe. 02-19-15
03-20-2015 Follow-up photo. Relief! Note the 40+ pound weight loss!
*Note-If you are wondering, this patient arrived at my practice already on a gluten and dairy-free Paleo diet. It wasn’t the answer here.