J AM ACAD DERMATOL

VOLUME 51, NUMBER 1

Jones S29

Extreme itching—A downhill experience

Rory Jones

New York, New York

The intensely itchy sores that began on myhands—and eventually covered my face,head, and arms—first appeared almost six

years before I was diagnosed with dermatitis her-petiformis (DH). The road to diagnosis, and eventu-ally to control, was long and difficult, profoundlyaffecting me, my family, and my concept of whatconstitutes ‘‘illness.’’

I am a writer and producer of educational filmsand new media and very involved with my familyand various charities. I enjoy the heavy schedule andconstant activity. I recharge between projects and getgoing on the next.

The symptoms of what I now know to be celiacdisease probably began in 1982, after my daughterwas born. My thyroid stopped working and I wasconstantly tired. Both were attributed to the preg-nancy and treated with Synthroid (levothyroxine).

In 1993, I was diagnosed with osteoporosis. Theearly onset was never questioned, and I was put onFosamax (alendronate). But by then, my constantexhaustion and growing joint pain led to numerousdoctor visits. I was tested for arthritis, low-gradeinfections, and a list of other conditions that matchedmy symptoms. All negative. I was told that there wasnothing wrongwith me. Perhaps I was over-stressed.I also developed itchy sores on my hands. I treatedthem with over-the-counter creams, but our familymantra was soon ‘‘stop scratching, you’ll get scars.’’

By 1995, the sores appeared regularly on myhands and fingers—always mirrored left to right—and the itching became intense. When they devel-oped on my eyelids and forehead, I went to adermatologist. He examined my skin and treatedthe sores with various cortisone creams. The diag-nosis was ‘‘unexplained dermatitis,’’ possibly fromdry skin and/or stress. They were not malignant, so Iwas told there was nothing to worry about. Over thenext fewmonths, as my joint pain increased, I startedto take Advil (ibuprofen) regularly and the soresspread up my arms, and my face flared up more

0190-9622/$30.00

ª 2004 by the American Academy of Dermatology, Inc.

doi:10.1016/j.jaad.2004.01.020

often. Occasionally, sores appeared on my legs. Thefacial sores would form hard crusts before theypeeled off—my so-called ‘‘iguana period.’’ I couldfind no food or environmental pattern that coincidedwith the flares. I used the creams as needed, learnedto live with the discomfort, and got on with my life.

Over the next three years, I visited my internistregularly and reported the almost constant jointpain, overwhelming fatigue, headaches, sores, anditching. I had complete work-ups, visited numerousspecialists, had many tests and everything was al-ways ‘‘normal.’’ I had scratch tests for most of theusual food and airborne suspects. All negative. Mypsychological state was explored during many ofthese exams and I tried to explain that I was stressedand depressed because I felt sick all the time, not theother way around. In 1997, a new endocrinologist Iwas referred to at Columbia/Presbyterian was thefirst person to note that the severity of my osteopo-rosis and early onset was definitely not ‘‘normal,’’ andordered more tests to determine an underlyingcause. That year, I wore sunglasses to meetings whenmy eyes crusted and long sleeved shirts to cover myarms. In the summer, my friends thought I was beingoverly cautious about sun exposure, an excuse forwhich I was grateful. I did not mention that sun-screen burned the sores I was now constantly hiding.The dermatologist warned me about using too muchcortisone cream, especially on my face, but it was theonly thing that controlled the itching. At times, theitching would wake me up at night—I wanted toscratch my bones.

By 1998, after trying cold compresses, yogurt, andanything else suggested, I used more and moretopicals, took more nonsteroidal anti-inflammatorydrugs, and became impossibly short tempered. Myfamily bore the brunt of my distress. My husband,who had been saintly throughout all this, insisted I do‘‘something, anything’’—see different doctors, takea break, find a way to ‘‘pull myself together.’’ I foundit difficult to rationalize the gravity of the prob-lem—people do not itch to death, so this neededto be put into perspective. I was told repeatedly bymedical professionals that there was nothing wrongwith me. So I stopped working and focused on rest,diet, and exercise. After three months of relaxed,

J AM ACAD DERMATOL

JULY 2004

S30 Jones

healthy living, I felt worse than ever and hit a realphysical and mental low.

Luckily, the endocrinologist had sent a bloodsample of mine to Peter Green, MD, at Columbiawhowas doing a random screening for celiac diseasein osteoporosis patients and I was told that I hadtested positive. Knowing little about the disease, Iwas scheduled for an endoscopy, which surprisedme since I had no gastrointestinal symptoms. At thehospital, while Dr. Green explained the procedure,he saw me scratching my hands and face. Examiningthe sores, he asked if anyone had mentioned der-matitis herpetiformis to me? Would I have a biopsy?

The endoscopy results were inconclusive—themucosa was partly damaged, partly normal. The skinbiopsy was not—I had dermatitis herpetiformis.

The diagnosis dramatically changed my life. Ona gluten-free diet, the joint pain and exhaustionstarted to fade within six to eight weeks. In threemonths, I felt better and had more energy than I hadhad in years. The clouds disappeared. Unfortunately,getting the DH under control was far more difficult.

I found a dermatologist in New York who spe-cialized in DH. She did not feel it necessary to put meon dapsone if I could control the sores through mydiet. My skin continued to erupt, but within sixmonths was dramatically better and the outbreakswere less severe and extensive. I saw her twice andseemed to be doing well on a strict gluten-free dietwith topicals to control the occasional itching. I wasagain warned about cortisone use—but it was noteasy living inmy itchy skinwhen I had a flare-up. Thedapsone alternativewas not without its own dangers.

While the outbreaks were much less severe, it wasa roller-coaster ride to determine what was causingthem. I was super-sensitive to accidental gluteningestion, and found that iodine also seemed to flareup the DH. Nevertheless, my skin continued toimprove. Every six months was better than the last.

Then, in mid-2001, I developed an almost con-stant red rash on parts of my face. My DH specialistwas no longer in practice and I was referred toa dermatologist who diagnosed rosacea. She pre-scribed creams and scrubs in addition to thecortisone. When one area of my cheek started tobleed, I was referred to yet another dermatologistwho took one look at me and said I was havinga cortisone reaction and needed to stop using iton my face immediately. I was put on Protopic(tacrolimus) and went through a rough six weeks,but stopping the cortisone eventually eliminatedthe rash.

The final chapter, or perhaps coda, to the storyoccurred in early 2003. I developed sores all over myarms and hands that looked and itched like DH,although they were not always mirrored. I was (andam) following a strict gluten-free diet, but I alsobegan taking dapsone. A month later, I had a sys-temic allergic reaction to the drug. On re-examiningmy arms, the dermatologist noted that there areeczemas that are almost identical to DH—which isprobably exactly what I had developed. Tacrolimusis now the cream of choice. I have not used thefluocinonide. I keep it for itching emergencies. Thelack of knowledge about DH and the emphasis ontreating symptoms rather than exploring causesmade my journey to diagnosis a disturbing andpainful one. I was given creams that covered up theproblem and created others. Nevertheless, I considerthe DH diagnosis one of the best things that hashappened in my adult life—ironically, it took a gas-troenterologist to see it. My symptoms finally hada name and one voice—I only wish it had spokensooner.

For more information, please visit the CeliacDisease Center at Columbia Web site at www.celiacdiseasecenter.columbia.edu or the GlutenIntolerance Group Web site at www.gluten.net.