I found this forum after several days of researching on the internet and I have been reading through the threads of this forum. I’m so grateful that so many have shared their knowledge and their journey. It has helped me to feel less alone and more confident in what I must do.
I'm sharing my journey in the hopes that it will help someone else who is searching for answers too.
Prior to the appearance of this rash 15 months ago, I have had an unbearably itchy back for at least 7 years and at times I could not even tolerate any pressure from clothing. Nothing would soothe or provide relief from the constant itch.
10 years ago I was diagnosed with Dupuytren’s contracture in my right hand. Within the last two years it has developed in both hands and seems to be developing in my feet.
5 years ago I was diagnosed with Osteoporosis ... I was shocked as I try to lead a healthy life ... exercise, eat well, etc.
15 months ago (March 2012), immediately following a nasty bout of flu, I developed
- An intensely itchy/burning rash that has been present constantly ever since. It began on upper chest, then went to my back and buttocks and now has slowly spread to limbs and neck. Raised liquid filled bumps appear that bleed profusely and repeatedly after being scratched and do not heal for months. Nothing soothes these lesions.
- Frequent headaches on waking
- Frequent lower abdominal stomach aches after eating
- An very occasional feeling of discomfort in my left side (?kidney)
Over the last 15 months I have eliminated using, or used only infrequently:
- all known allergenic foods
- scented soaps, shampoos, moisturizing lotions
- showering only twice a week (chlorine?) and because it hurt!
- contact with pets
- dyeing hair
- fragrances
- laundry soap (rinse things x 3)
- multi vitamins
- alcohol
I have had multiple tests over many years and have been advised to avoid eating many foods, and I do. Anaphylaxis is a frightening experience and I've had two incidents some years ago.
Just a few days ago, on the morning of May 7th after a second sleepless, crazy irritable, itchy-all-over night within a week I realized what the culprit was. Both evenings I had eaten a double helping of fresh home made King Arthur bread! Poisoning myself with "goodness". How could I be so naive?
With all the other things I am allergic to I had forgotten that in 1991, the allergist I saw he must have told me to eliminate wheat from my diet because it's one of the things he underlined on the sheet of things I should not eat, but he didn’t emphasize it or I would have remembered. I found the information in my file when I was gathering all my notes together for my appointment to see my allergist next week.
So over the last couple of decades I have not been eliminating wheat from my diet and unfortunately for the last year or so we have been baking all our bread at home and consequently eating more than we normally would because of how good it is.
After finding this forum and reading many of the threads, I now know what I am dealing with. My symptoms and visible lesions suggest Dermatitis Herpetiformis.
Upon realizing this a couple of days ago, I completely eliminated gluten from my diet.
All these years searching for an answer ... I now have hope that my quality of life will be restored and that maybe some of the damage already done to my body can be at least halted if not reversed. The photo in the top right of this page could be me! http://www.lookfordiagnosis.com/mesh_info.php?term=Dermatitis+Herpetiformis&lang=1
I have an appointment with my allergist next week and I plan on going along with notes and photos. I don't want a biopsy or tests ... just a plan of action going forward. Nutritionist maybe? I have a feeling that I will get a lot of help here. Sorry this post is so long ... it's been a long journey!
Best I could do for a photo is this link. It shows a small area of my body that is affected: