Dermatitis Herpetiformis, Maybe that Rash isn't just Eczema
When the first rash appeared, I was a foster parenting a premature baby and a one year old. I assumed it was a reaction to the wet wipes and constant diaper changing, and I really wasn't too worried. The secondary staph infection was way less than pleasant, and it was honestly what led me to the doctor. My doctor treated me with an antibiotic for the staph and steroid cream for what we assumed was an eczema break out. I was almost thirty-five, and I'd never had eczema. Believe me, I was less than impressed but I knew that it was possible to develop eczema as an adult so I didn't panic. The next two years were an almost constant stream of really itchy, swollen rashes that frequently became infected and never completely went away. I had to sleep in gloves, because sometimes I'd literally wring my hands together (in effort to stop the itching) until they bled. My wedding rings moved to the jewelry box, because my fingers were to swollen to wear them. I spent a small fortune on lotions and different herbal treatments that would bring minimal relief. It was not much fun, and I was never fully convinced it was just eczema. I couldn't believe that it was not going to get any better, but nothing I tried seemed to help. It wasn't until the hydro-cortisone cream stopped helping that I got really desperate. I started looking even more earnestly for answers.
During a miserable few days of what was essentially my worst break out, the answer (praise God) finally came. A friend had recently discovered that she had celiac disease, and while she was researching her new diagnosis, she found my rash on a celiac website. celiac disease is a basically an intolerance to gluten, or wheat products. It can cause serious damage to the intestines (and can be responsible for a host of other problems), and the only treatment for the disease is to completely eliminate wheat from the diet. That means no bread, cake, cookies, noodles, donuts, or pizza that are made the traditional way (lots and lots of wheat flour) can be in the celiac patient's diet. My friend urged me to try going gluten free. I was not exactly sold on the idea of leaving wheat products behind, so I visited the health food store in search of yet another herbal treatment. The lady behind the counter asked if I had ever tried eliminating my gluten. Not exactly what I wanted to hear but I acknowledged that it might be worth a try. The final straw came the following day when my breakout had become completely unbearable and I went to the doctor. My regular doctor was out of the office, so I went to see the doctor who takes care of my kids (not a pediatrician, but a fabulous family doctor). She had seen me a few times throughout my two and a half years of struggling, so she understood I was serious about getting better. She prescribed a different cream and suggested that I might consider a more whole food, or raw, diet. I told her what my friend and the health food store had suggested, and she thought it could help so I decided to give it a try. Within a week of living gluten free, my hands were back to normal. Now, understand, my hands hadn't been completely rash free since the first outbreak, and suddenly my hands were clear. Because I'm human and I really like donuts and pizza, I completely blew my new “diet” on vacation. I thought it would be okay to add the gluten back in because the rash was finally gone, but I was so wrong. Within two days, my fingers began to swell. On day three, the itching started and the rash followed within hours. I didn't need a blood test to tell me that I was gluten intolerant. I needed to get serious about changing my lifestyle and the beginning of that was research. Here is what I learned about Dermatitis Herpetiformis. We'll call it DH for short.
My Hands on Gluten
My Hands Gluten Free
Defining Dermatitis Herpetiformis
DH is, in essence, a celiac rash. It affects approximately 10 percent of celiac patients, but it affects about 25 percent of celiac patients who also have Hashimoto's disease (which I also have). More men are affected than women, and the rashes usually don't start until the twenties or thirties. It is a type of eczema, because eczema is basically a noncontagious inflammation of the skin, characterized by redness, itching, and the outbreak of lesions that may discharge serous matter and become encrusted and scaly (American Heritage Dictionary). But, DH is unbearably itchy and usually has a burning sensation that seems to get better after the little lesions begin to break open. Unlike most skin rashes, it doesn't generally go completely away. It just gets better and then worse again. As long as there is gluten in the diet, the irritant continues to cause the rash.
Possibly the only positive thing about DH is that celiac patients who have DH tend to have fewer of the telltale celiac symptoms, namely the intestinal problems. The bad news is that without the intestinal issues, DH tends to go undiagnosed for much longer and is often not diagnosed at all. I did not bother being tested for celiac, because my little vacation break in the diet was all the confirmation I really needed but testing is readily available. The testing must be done before going gluten free to be accurate, and it can either be a blood test looking for IgA antibodies or a skin test (also looking for IgA antibodies). As I did my research, I discovered that eczema patients who did make a dietary change to a whole food diet tended to have fewer breakouts. Since a whole food diet would inevitably involve less processed foods (gluten havens), it seems likely that many of those patients probably have DH and just haven't been officially diagnosed.
So, What's the Bottom Line?
DH will only get better on a strict gluten free diet, and, at least at this time, that diet is for life. But without the gluten, the rashes go away and stay away. The price is high, but, for the patient who has suffered through a DH rash for any length of time, it is an acceptable price to be pain free. I'm trying to avoid temptation to indulge in gluten-filled favorites, but I definitely fall and eat the occasional no-no. I pay for it quickly with a breakout and swear to do better next time.
Living gluten free involves more planning and some expense, but it is possible. Wheat flour is not the only flour out there. Rice and potato flour are becoming more and more available. Just before I went gluten free, I was going through a $10 container of lotion every single week and spending money left and right on herbal treatments that only provided a little relief, so I funneled that money into the grocery bill. And, thankfully, more and more food manufacturers (including Frito lay and General Mills) and restaurant chains (like Mazzio's and Shorty Smalls) are producing more and more gluten free choices, including donuts and pizza.