Dear Members and Friends of VSI,

Advances in vitiligo genetics research have confirmed that non-segmental vitiligo (NSV) is an autoimmune disease and that it shares one or more genes with other autoimmune disorders,  including celiac disease, rheumatoid arthritis, Type 1 diabetes, lupus, Graves’ disease, Addison’s disease, psoriasis, inflammatory bowel disease, Hashimoto’s thyroiditis, and multiple sclerosis. What does this gene linkage mean?

For the scientist, it provides clues as to the biochemical pathways that are involved in the expression of vitiligo. These pathways become potential targets for new therapies aimed at stopping the disease process.

For the individual, it raises the question as to whether they have a greater chance of developing one of these additional autoimmune disorders. If they do face a greater risk, what does this mean for them?

In this newsletter we focus on celiac disease (CD), one of the autoimmune disorders linked to vitiligo and one of great interest to many people with vitiligo. Many of our members contact us asking if they are at greater risk of developing CD. Two recent small studies raise the possibility that they may be.

We thank the many volunteers whose participation made these studies possible. Without your willingness to become involved, this research would not have happened. Opportunities to volunteer for research studies are listed at the end of this newsletter. Even as one individual, you can make a difference. If all of us act, believing in the “power of one,” future generations will benefit from what we do today.

Jackie Gardner
Executive Director

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Is there a connection between celiac disease (CD) and vitiligo? We are frequently asked this question by people who have both conditions. Some scientists have raised this question as well, publishing the results of two small studies that looked into the possibility. Their data pointing to a possible relationship is consistent with the fact that both diseases are genetic autoimmune disorders and share a link to autoimmune thyroid disease.

What is celiac disease?

People with CD cannot tolerate gluten, a very common gluey protein found in such grains as wheat, barley and rye. Other grains containing gluten are bulgur, durham, farina, graham flour, kamut, matzo meal, semolina and triticale. It is pervasive in a wide range of foods, including food additives in certain condiments such as ketchup. It may also be found in everyday products such as medicines, vitamins, and lip balms.
The gluten proteins wreak havoc with the immune systems of people with CD once they’re absorbed into the small intestine. These proteins block the small intestine’s ability to manufacture digestive enzymes and absorb nutrients from food. People without celiac disease can also be intolerant to gluten.

Is there a connection between CD and vitiligo?

The data pointing to this specific connection has changed somewhat over time. It is only in recent years that science has begun to reveal the complex interrelationships between some autoimmune diseases. As new genes in the field of autoimmunity continue to be discovered and identified, connections that were previously unknown have begun to surface. While older research showed little or no evidence of a connection, data from more recently-published studies seems to suggest a possible link.

In one such study, the investigating team at a Belgian hospital was attempting to measure the prevalence of CD in a group of 400 patients with type 1 diabetes, also an autoimmune condition. During the course of the study, they observed that vitiligo was more common among those diabetes patients who also had CD.

In another study, university researchers in Turkey looked at 55 children and adolescents diagnosed with CD over a six-year period to see if there were any skin conditions associated with CD.  They observed a higher than normal prevalence rate of several skin conditions, including vitiligo. Over 9% of the CD patients had vitiligo, a greater frequency than seen in the general population (½  - 1%). Interestingly, the vitiligo appeared only in those children and adolescents who were not following a strict gluten-free diet. In fact, none of the skin abnormalities observed in the CD study patients were observed in those following a gluten-free diet.

This same Turkish team of scientists did a second study in which they screened 61 children and adults with vitiligo to see if there was a higher prevalence of CD. They again found an above-average incidence of CD in the vitiligo patients, diagnosing 11 vitiligo patients (18%) with CD, while the rate of incidence in the general population is about 1%.

Anecdotally, various people with vitiligo have reported being helped by a gluten-free diet, but, in the  absence of a scientific review of these reports, we cannot know if the improvement was or was not due to other factors. The relationship of gluten intolerance to other autoimmune diseases has only become the subject of mainstream discussion in recent years. As research continues, evidence of even more connections may surface. Heightened sensitivity to the whole topic most likely led to one doctor’s recent reported observation of a young girl’s vitiligo improving following her adoption of a gluten-free diet.

The patient was a 9-year-old girl affected by generalized vitiligo, with typical depigmented lesions on her face, trunk and limbs. She had not responded to vitiligo treatment for over a year, and she had a history of well-controlled hypothyroidism for two years. After one year of a gluten-free diet and no active treatment for vitiligo, her depigmented skin progressively repigmented, and maintained its pigmentation seven years after initiating the gluten-free diet.

This young woman's experience does not provide definitive proof that gluten intolerance and vitiligo are connected. There may have been one or more other factors involved that we have yet to discover. However, this doctor's observation provides additional evidence that such a scientific investigation is warranted.

What could connect CD and vitiligo?

An autoimmune link?

CD’s potential to trigger underlying autoimmune disease such as vitiligo was put forward in a recent study. Researchers in a study of 172 patients with autoimmune thyroid disease found that 3.4% of these patients also had celiac disease, a higher percentage than the 0.6% and 0.25% found in the study’s two control groups. The study concluded that undiagnosed celiac disease might actually be part of the process that triggers an underlying autoimmune disease such as autoimmune thyroiditis. In their findings, they wrote: “We believe that undiagnosed celiac disease can cause other disorders by switching on some as yet unknown immunological mechanism.”

CD has been reported to be associated with several other autoimmune disorders, including Type 1 diabetes, autoimmune liver disease, rheumatoid arthritis, Addison’s disease, and Sjogren’s syndrome. Could CD also trigger vitiligo, another autoimmune disease? It is a reasonable question to ask given what we know to date.

A thyroid disease link?

Those with vitiligo have been shown to have a significantly higher incidence of autoimmune thyroid disease than the normal population. It’s actually the most common autoimmune disease among vitiligo patients and/or their family members. Autoimmune thyroid disease also occurs in the CD population at a higher rate than in the general population. Could vitiligo and CD be connected through a possible common gene also shared with thyroid disease?

A common gene link?

We know from federally-funded genetics research that the gene NLRP1 (formerly known as NALP1), has been confirmed as being associated with vitiligo, as well as with celiac disease, Addison’s disease, systemic sclerosis, and lupus, and with type 1 diabetes in two out of three studies. We recently learned from a newly released study about another common gene, LPP, which is associated with vitiligo, celiac disease and rheumatoid arthritis. Perhaps these genes may be involved in mediating vitiligo and CD.

A stress link?

Another consideration for why one might see the onset or worsening of vitiligo in an individual experiencing a flare-up of CD is the role stress can play on the immune system. There are well-established studies showing that individuals who are under chronic stress (emotional and/or physical) experience more severe and more frequent viral infections (common cold, flu); have a lower take-rate of vaccine (flu & hepatitis); and show prolonged wound healing. Can this type of stress, which is known to weaken the immune system, also leave it more susceptible to the negative effects of other underlying conditions?

Over the years, many individuals with autoimmune disease have reported a significant stress factor such as a death in the family, a bout with an unrelated illness, or other trauma, such as an automobile accident, preceding the onset, or worsening of their autoimmune diseases.

New studies suggest a few mechanisms by which this might occur.  Dr. Esther Sternberg of the National Institute of Mental Health shared her insights on this with VSI, saying, “…that in chronic stress, physiological burn-out can occur, in which after a prolonged period of running at peak, the hormonal stress response fails, and too little anti-inflammatory glucocorticoids are released to shut off inflammation.” (Inflammation is a mechanism by which we fight foreign invaders and repair damaged tissue. Glucocorticoids are various steroid hormones produced by the body’s adrenal glands that inhibit the inflammatory process. If not controlled, chronic inflammation will damage the body’s healthy tissue.)

She went on to say, “Another intriguing and quite new hypothesis for which biological evidence is beginning to be gathered is that the problem may be at the level of the glucocorticoid receptor, the communication link between the hormones and the immune cells. In this scenario, even if the individual is making enough cortisol, an important glucocorticoid hormone also popularly known as the “stress hormone," immune cells are unable to respond to the anti-inflammatory effects of this glucocorticoid, leading to exacerbation of underlying autoimmune disease.” 

What to keep in mind?

This does not mean that stress alone causes these autoimmune/inflammatory diseases. The person in question would first have to carry the genes for the specific autoimmune diseases. At least 20 gene regions on 15 different chromosomes are associated with predisposition to autoimmune disease in rodents and humans. Whether stress will precipitate or worsen such conditions is only one of many potential factors to consider.

We are often asked by parents if CD-like symptoms their children are experiencing could be related to vitiligo. While we must learn more to confirm a direct link between the two diseases, those affected by vitiligo should be aware of the possibilities.

Research has shown that a significant percentage of children and adults who tested positive for celiac disease had minimal or no symptoms prior to being tested. However, familiarizing yourself with the symptoms is very important as you may otherwise miss important clues that could lead to early diagnosis.

If you feel you or your child have experienced even mild symptoms of CD or gluten intolerance, you might discuss the advisability of being tested for CD with your physician.

There is a vast array of information available about CD and gluten intolerance. A good place to start to learn more about CD, its symptoms and its treatments is the National Institute of Health’s National Digestive Diseases Information Clearinghouse (NDDIC) at www.digestive.niddk.nih.gov. We have provided a general description of CD symptoms for adults below. 

VSI was the inspiration of vitiligo patients who believed in the power of collective action. They believed the “patient voice” could bring about change.  They knew access to the collective perspective and experience of the vitiligo patient community is what would enable the researcher to understand, the insurer to expand coverage, and the policy maker to support better care. 

What's On Your Mind?

Q. I started NB-UVB light treatments and was so encouraged when my depigmented  area turned pink, but by the next day it had gone back to white. Does this mean the treatment isn't working?

A. No, not at all. When exposing depigmented skin to UV radiation, whether it be sunlight or NB-UVB, the expected response from a therapeutic dose is for the depigmented area to turn pink (not red) within a few hours, and then within 24 -36 hours return to the depigmented color. No vitiligo treatments are instantaneous.  They all take time and persistence. The UV radiation will stimulate the melanocytes (pigment-making cells), and with consistent treatment, you should begin to see new pigment after a period of several months.

Q. What does new pigment look like?

A. The melanocytes reside at the base of the hair follicle. So new pigment generally becomes evident in one of two ways:

1. You might first see a tiny freckle appearing near a hair follicle somewhere inside of the depigmented area. Over time this freckle will continue to grow bigger and hopefully other freckles will also appear nearby. In time, these freckles will grow together, eventually filling the depigmented area.

2. The other way new pigment can begin is when melanocytes from the outer edges of the depigmented area migrate inward, slowly closing the depigmented area from the outside.

Before	After

Freckling, or repigmenting with freckles, is generally a faster process, but new pigment is new pigment!

It's a great idea to take pictures of the depigmented areas when you begin treating.  If you ever become discouraged with your progress, once you go back and see where you began, you will most likely be quite surprised and encouraged!

Many VSI members have posted pictures of their treatment progress in the member photo galleries. If you ever question how well treatments work, you should visit the galleries.

"Before" and "After" photos above used with permission from Dr. Anantha Prasad Holla
Director: MelanoSite - Center of Advanced Vitiligo Treatment and Collaborative
Pigment Cell Research based in Delhi and Mangalore.

Medical News Updates

Highlights of recently-published medical
articles on vitiligo and its treatments

Long-term Narrowband UVB (NB-UVB)
Use Believed Safe in Treating Vitiligo

NB-UVB is an established, effective treatment for vitiligo. Its safety as a long-term treatment, however, has not been studied. For that reason, in the absence of established treatment caps for NB-UVB, the suggested limit for skin types I-III has arbitrarily been set at 200 treatments to minimize the risk of nonmelanoma skin cancer (NMSC).

This limit poses problems for many vitiligo patients, as more than 12-24 months of treatment, or more than 200 treatments, are often required for repigmentation. A recent review of patient experience by doctors at University of California, San Francisco (UCSF), now suggests that this limit may be unnecessarily low.

The doctors in this review have been treating vitiligo patients with NB-UVB for nearly a decade and conducted a retrospective review of 10 of their current NB-UVB vitiligo patients.  Despite having received from 201 to 774 NB-UVB treatments over a period of 33 to 93 months, none of these patients have developed NMSC.

They pointed out that, after years of experience reviewing the available follow-up data drawn from all dermatology patients treated with NB-UVB, the general consensus is that NB-UVB does not significantly increase the risk of NMSC compared with the general population. 

The UCSF physicians further commented that recent evidence suggests that topical pimecrolimus (Elidel) and/or tacrolimus (Protopic), which are commonly prescribed as adjuncts to NB-UVB, also have not shown an increased risk of NMSC. Therefore, the combination of NB-UVB with these topical agents should not have a cumulative carcinogenic effect.

The researchers concluded that NB-UVB is likely to be a safe long-term option, and because vitiligo patients will likely require more visits over a longer period of time, it is recommended that the NB-UVB guidelines be re-evaluated and that more long-term follow up data be gathered.

Family History of Both Vitiligo and Psoriasis Appears to Increase
Risk of Autoimmune Disease, Heart Disease and Hypertension.

A study of 154 Italian vitiligo patients showed that those patients who also had psoriasis faced a greater chance of also having family history of cardiovascular disease and hypertension. They also found that vitiligo patients with a family history of both vitiligo and psoriasis had nearly a 50% chance of having celiac disease, lupus, megaloblastic anemia, and allergic rhinitis, all autoimmune disorders suspected to be linked to vitiligo. For those with both vitiligo and psoriasis, but no family history for either skin disease, the risk of these disorders went down to 21%.

For those with a family history of vitiligo or psoriasis or both, the chance of having a family history of cardiovascular disease and hypertension increased.  Though the trend did not reach statistical significance in this study, they did report that:

 A family history of cardiovascular disease was present in:

• 10% of 52 patients with vitiligo and a family history of vitiligo;
• 13% of 15 patients with vitiligo as well as a family history of both vitiligo and psoriasis;
• 18% of the 16 patients with vitiligo and a family history of psoriasis.

Similarly, a strong family history of hypertension was present in:

• 4% of vitiligo patients,
• 8% of those with both vitiligo and a family history of vitiligo,
• 13% with vitiligo and a family history of both psoriasis and vitiligo,
• 25% of vitiligo patients with a family history of psoriasis, and
• 26% of patients carrying diagnoses of both vitiligo and psoriasis but no family history of either skin disease.

The researchers also looked at diagnosed psychiatric disorders. They found:

• zero prevalence of diagnosed psychiatric disorders in patients with vitiligo with or without a family history of vitiligo,
• 7% prevalence in those with vitiligo and a family history of both vitiligo and psoriasis,
• 6% in those with vitiligo and a family history of psoriasis, and
• 5% in patients with both vitiligo and psoriasis.

Editor’s Note:  Recent research has reported that vitiligo and psoriasis share a gene on chromosome 1.  Another group of researchers in China and Canada recently reported that both vitiligo and psoriasis share a second common genetic locus linked to the major histocompatibility complex (MHC) on chromosome 6. The MHC locus is one of the extensively studied regions in the human genome. Large-scale studies have identified a number of genetic variants that increase the risk of a variety of autoimmune disorders, including multiple sclerosis, Type 1 diabetes, systemic lupus erythematosus, ulcerative colitis, Crohn’s disease, and rheumatoid arthritis. Earlier studies had also reported that MHC loci are likely to play some important roles in psoriasis and vitiligo.  

Research & Clinical Trials

New Clinical Trial in Massachusetts!

Major Expansion of Vitiligo Genetics Project

Patients and Controls Invited to
Participate in Online Vitiligo Survey

Volunteers Needed for NB-UVB
and Epidermal Grafting Trial

Camp Discovery

In 1993, the American Academy of Dermatology (Academy) started Camp Discovery with a single camp location serving about 50 kids at Camp Knutson in Crosslake, Minnesota. Little did they know how much Camp would grow over the next 19 years.  Camp Horizon began in 1995; Teen Camp followed in 1998 and last year we introduced Camp Reflection in Washington State.

This year the Academy is proud to offer six camping sessions for young people with chronic skin conditions who are between the ages of 8 and 16.  Under the expert care of dermatologists and nurses, Camp Discovery gives campers the opportunity to spend a week with other young people with skin conditions, while participating in everything from swimming and fishing to horseback riding to lots of camp games and just plain fun!

There is no fee to attend this very special camp. Full scholarships, including transportation, are provided by the Academy through generous donations from its members, outside organizations and individuals.  All campers must be referred by their dermatologists.

2012 Dates:

• June 24 – 29, Camp Little Pine in Crosslake, Minnesota (ages 10 – 14)
• June 25 – 29, Camp Reflection in Carnation, Washington (ages 8 – 16)
• July 8 – 13, Camp Big Trout in Crosslake, Minnesota (ages 14 – 16)
• August 12 – 17, Camp Liberty in Hebron, Connecticut (ages 8 - 16)
• August 5 – 10, Camp Dermadillo, Burton, Texas (ages 9 – 15)
• August 11 – 18, Camp Horizon, Millville, Pennsylvania (ages 8 – 13)

Referral forms will be available in January and the **application deadline is April 15, 2012. For more information about attending or volunteering, please visit the Camp website at www.campdiscovery.org, or contact Janine Mueller at 847-240-1737 or by email: [email protected].

NOTE** This article first ran in the VSI Winter 2011 Newsletter. We are running it again even though the deadline will be very close or past by this time. We are told they will continue accepting applications as long as space is available.

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