Your happily living life and BAM, you are hit with these odd skin disorders out of nowhere. What is happening? Perhaps you have tried topical ointments or creams, antibiotics, or a plethora of other products in an attempt to clear up some skin disorder, they may have worked or not but the temporary solution is just that. Did it start due to your sudden change in diet or increase in exercise? This skin disorder came without warning; you maybe now feel that there must be something else as you have tried everything! It is possible that Gluten Intolerance or Celiac Disease may be at the root of your skin problems.
Dermatitis Herpetiformis (DH) is one such skin ailment that occurs as a result of gluten. It is one of the “itches” that won’t go away without proper treatment. With a proper, simple and pain-free skin test (biopsy) your practitioner or nutritionist can determine if you have the auto-immune disease commonly termed Celiac Disease.
As a Paleo recipe developer, researcher, writer, health advocate and author, I have a strong interest in issues relating to people of all ages and I like to see people properly informed and properly diagnosed. Anyone can get this skin disorder. Although dermatitis herpetiformis usually occurs for life once it appears, permanent remission is reported to occur in 10-20 percent of patients, usually after long-term adherence to a gluten-free diet. I am celiac, I have three kids, two with CD and the one has Dermatitis Herpetiformis (DH).
Why all of a sudden may an adult get a gluten intolerance or celiac disease? Why are you just now experiencing a gluten intolerance skin rash? There are various reasons it can “turn on” in adulthood or the baby-boomer. One very common reason may be a stressful situation in one’s life. There is also the possibility that it had been there yet it surfaced with symptoms crying out louder now. Being properly diagnosed is the first and proper door to a correct handling, and once any ailment is correctly diagnosed life become much simpler. I was 7 years misdiagnosed and my life, my health and my well-being has been incredible ever since, upwards and thriving!
DH was first described as a distinct clinical entity in 1884 by an American dermatologist, Louis Duhring. But it wasn’t until 1967 that is was actually linked to gluten sensitivity/intolerance. Instead of digesting gluten, the body fights it with an antibody (called IgA) that is produced in the lining of the intestines. When IgA combines with ingested gluten, the combine antibody/gluten substance circulates in the bloodstream and eventually clogs up the small blood vessels in the skin. The clog attracts white blood cells brought in by the body to fight the invasion. The white blood cells, in turn, release powerful chemicals that create the rash. Typically, DH is characterized by small groups of itchy blisters, often on red plaques, located on the back of the elbows and forearms, on the buttocks and in the front of the knees. But, the rash can occur in other places on the body, including the face, scalp, back and trunk.
With a gluten intolerance or celiac disease the body has a greater inability to properly absorb and distribute nutrients and deficiencies in vitamins and minerals develop. You can do all the diets and exercises in the world and think you are doing the best for your body, but if you have this underlying gluten issue and are eating any gluten you will remain with this internal flare in your body – inflammation. The result will be a remaining rash.
Vitamins A and D contribute to healthy skin. Vitamin A is consumed in controlling inflammations, so Celiacs need more Vitamin A to begin with. A case of dry or flaky skin, or chronic split heels could suggest either mal-absorption from undiagnosed gluten intolerance or malnutrition.
A solution to these ailments may be a gluten free diet and even better, the Paleo diet! There are also creams and treatments that will aid in the healing and itching but the real culprit may be the gluten and the ailment will not truly go away until the culprit is determined.
I highly suggests if any skin ailment is non-responsive to all you have tried, talk to your practitioner or nutritionist about testing for gluten sensitivities or celiac disease. Your world can change with the proper diagnosis and treatment. For more information email me. I welcome your feedback and questions always.
I have worked in this field and with many groups, professionals, research scientists, universities, authors and organizations for many years. I am a celiac, one who has worked as an advocate to increase awareness of gluten intolerance skin rash issues and one who made the change from the standard “gluten-free” diet to Paleo. I have quite a bit of experience in these areas and I walk the talk and love to see others do very well, and be happy with their bodies.
- Dermatitis herpetiformis
- Treating dermatitis herpetiformis (DH)
- Complications of dermatitis herpetiformis (DH)
- More about dermatitis herpetiformis (DH)
- Managing Skin Conditions Associated with Celiac Disease
- Celiac-Associated Skin Conditions
- Wheat Allergy
- Perhaps you’ve been diagnosed with eczema, infected mosquito bites, contact dermatitis, psoriasis or hives.
Diet before and during diagnosis
To ensure an accurate skin test is taken first time, it’s important to keep eating gluten-containing foods before and during diagnosis.
If you’ve already removed gluten from your diet, you must reintroduce it in more than one meal every day for at least 6 weeks before having the tests.
Treating dermatitis herpetiformis (DH)
The treatment for DH is a lifelong gluten-free diet.
A gluten-free diet is when all gluten-containing foods are removed from your diet
Gluten is found in wheat, barley and rye and sometimes people are sensitive to oats too.
A gluten-free diet should only start once a confirmed diagnosis of DH is given.
Find out how to live with a gluten-free diet
How long does treatment take to work?
The length of time it takes for the skin to heal varies from person to person but it can take up to 2 years or more.
Medication during treatment
Some patients will be given medication to help them over this period of recovery.
Medication will only be given to control the skin itching and blisters and doesn’t treat any other symptoms.
The drug most likely to be used is called Dapsone.
Dapsone is taken in tablet form and must be swallowed.
It helps ease the itching and controls the development of blisters. It should work within a few days.
If you stop taking Dapsone before the gluten-free diet has taken effect, the rash will return.
Side effects of Dapsone
The most common side effect of Dapsone is anaemia.
Less common side effects are headaches and depression, while nerve damage is rare.
Because of these side effects, you’ll always be prescribed the lowest effective dose. DH should be monitored once the drug dose has been reduced.
More information about this medicine is available in the Dapsone patient information leaflet.
Alternatives to Dapsone
Some people can’t tolerate Dapsone. If you’re one of these people, the following drugs can also be taken to clear the rash:
Complications of dermatitis herpetiformis (DH)
The same associated conditions and complications can occur in people with DH as in people with coeliac disease.
Some potential complications of DH include:
- certain kinds of gut cancer
- an increased risk of other autoimmune diseases, such as type 1 diabetes and thyroid disease
As with coeliac disease, the risk of developing these is reduced by following a gluten-free diet.
More about dermatitis herpetiformis (DH)
The British Association of Dermatologists (BAD) have produced a patient leaflet – Dermatitis Herpetiformis (gluten sensitivity) – which gives more information about this condition.
Managing Skin Conditions Associated with Celiac Disease
Celiac disease is an autoimmune disease wherein gluten — a protein found in wheat, rye, triticale, and barley — triggers an immune system response in the small intestine. Over time, this leads to damage of the intestine and many associated health complications. Symptoms can include abdominal pain, bloating, gas, diarrhea, constipation, vomiting, and other gastrointestinal issues, as well as fatigue.
There are also certain skin conditions that often occur in conjunction with celiac. While all but one of these conditions can be present in people without celiac, gluten may play a role in them when they accompany the disease. In fact, the connection to gluten can be so strong for some that simply removing the problematic protein from their diet can sometimes clear up the skin issue as well.
Below, we’ll look at some of these conditions, their symptoms, and ways they can be treated and managed.
Celiac-Associated Skin Conditions
Dermatitis herpetiformis (DH)
Also called Duhring disease, this chronic skin condition is the most common dermatological concern for those with celiac disease, affecting 10-15% of celiac patients. Dermatitis herpetiformis is more than just an associated skin condition; it’s technically the dermatological expression of celiac. Patients who have dermatitis herpetiformis but no gastrointestinal symptoms are still considered to have celiac disease.
Dermatitis herpetiformis is characterized by very itchy bumps or blisters that appear on both sides of the body. It’s most often found on the forearms, near the elbows, on or near the knees and buttocks, as well as along the hairline.
The first step in managing this ailment is ensuring it’s accurately diagnosed. Because it can look like other skin conditions (herpes, for instance), it’s often misdiagnosed. Confirming dermatitis herpetiformis requires a biopsy by a skilled, knowledgeable professional who is familiar with the illness, and knows how to correctly perform the biopsy.
Dermatitis Herpetiformis Management
A strict gluten free diet is the baseline for managing dermatitis herpetiformis, just as it is for all celiac patients. Cutting out gluten keeps the condition under control for many, but isn’t always enough, and flare-ups may require more acute treatment. Sometimes prescription medications may be the best treatment. Talk to your doctor to learn what the best medical course of treatment could possibly be.
Eczema (aka Atopic Dermatitis)
This common skin condition is denoted by a rash with itchy, scaly patches that sometimes “sweat” clear liquid. It’s more often seen in children than adults, and affects tens of millions of Americans each year. Some doctors consider eczema to be an autoimmune disease, as well.
While eczema is fairly common among the general population, controlled studies have found it to be present 3 times more often in people with celiac, and twice as frequently in relatives of those with celiac. Researchers think this might indicate a genetic link between the two conditions.
Aside from maintaining a gluten free diet (already a must for celiac sufferers), there are a number of ways to manage and treat eczema when it flares up, and help prevent future flare-ups. One of the main lifestyle changes you can make is avoiding contact with irritants that trigger it. Start by removing every suspected irritant and then slowly reintroducing each one at time to see which sets off the eczema. If you’re currently battling an eczema outbreak, you could start removing suspected triggers one-by-one until the rash gets under control.
A skincare regimen that includes warm baths and routine moisturizing can also be helpful. Over-the-counter cortisone creams or ointments can help with itching and, if needed, a prescription-strength topical corticosteroid can also be used.
Another fairly common skin condition, psoriasis is also an example of the immune system not behaving as expected in a person’s body. It’s been found to co-occur with over a dozen other autoimmune diseases, including celiac and rheumatoid arthritis. In one recent study one-third of psoriasis sufferers had higher levels of antibodies (proteins formed when the body tries to fight off a foreign substance) against gliadin — the component of gluten that people with celiac can’t digest.
In psoriasis patients, the skin cell life cycle speeds up and causes those cells to build up quickly on the surface of the skin. The extra skin clusters form thick, scaly, red, sometimes painful, patches. Some people with the disease also experience dry, cracked skin that may bleed, itching, burning, soreness, thickened or ridged nails, along with swollen and stiff joints.
Psoriasis is a chronic condition that can flare for weeks or months at a time, with periods of dormancy in between. There are treatment options, but no cure. Avoiding stress, not smoking, and moisturizing can help. Hydrocortisone creams and lotions, as well as prescription topical steroids can treat symptoms.
Chronic Urticaria (aka Hives)
Urticaria are sudden swollen, pale red bumps or “plaques” on the skin that can itch, burn or sting. Many people experience hives at one time or another, usually as a result of an insect sting, skin contact with an allergen, or ingestion of an allergen, though sometimes a direct cause is hard to pinpoint.
Individual hives do not usually last more than a full day, but the reaction that produces them could go on for weeks or months, with new patches popping up. Urticaria are considered chronic if they last more than 6 weeks.
Chronic Urticaria Management
If a gluten free diet is not enough to get rid of your chronic hives, there may be another trigger that needs to be removed. To figure out what it might be, pay attention to what you were doing, eating, drinking, or touching shortly before the hives appeared. If you’re already fighting a bout of hives that isn’t going away, try removing suspected culprits one-by-one every few days.
Cool compresses, loose fitting clothes, and sleeping in a cool environment can provide relief from hives. Calamine lotion can also help calm the skin, and relieve mild itching. Antihistamines such as Benadryl can tamp down the chemicals in the body that are associated with allergic reactions. Topical or oral corticosteroids can also be prescribed if the situation doesn’t respond to over-the-counter or home remedies.
In this autoimmune disease, the immune system attacks the hair follicles. This results in hair loss, usually starting in small patches. Hair may grow back on its own, then fall out again in the same spots or different spots. In severe cases, the disease can progress and lead to total body hair loss. A medical diagnosis is necessary to confirm the hair loss is not caused by another disease.
There are many potential components and causes of alopecia areata, but it seems to be more prevalent in people with family histories of other autoimmune diseases. Several studies have found links between it and celiac.
Alopecia Areata Management
In some who are diagnosed with both celiac and alopecia areata, cutting out gluten has resulted in hair regrowth. However, often treatment of this disorder is focused on hindering further loss by blocking the immune system from attacking the follicles. A dermatologist may recommend light therapy, as well as topical and oral medications, or prescribe steroids in injectable, oral, or topical form depending on the severity and spread of the urticaria.
While most people occasionally experience dry skin due environmental reasons like cold or dry air, it can be a chronic and severe problem for many. Extreme dry skin is rough to the touch, sometimes itchy and flaky, and may crack. Although there haven’t been many studies exploring the connection between celiac and dry skin, anecdotal evidence suggests that a high number of celiac patients struggle with chronic or recurring dry skin.
Dry Skin Management
Moisturizers can help mitigate the external aspects of dry skin, but heading off the underlying causes is the best way to affect systemic and lasting change. Treating and managing dry skin can best be accomplished via lifestyle changes such as staying hydrated and including more omega-3 rich foods — oily fish, walnuts, flax, chia seeds — in a balanced diet. Not smoking and avoiding other behaviors or environments that dry out skin can also help.
One quarter of people with an autoimmune disease are eventually diagnosed with a second and sometimes third such illness, so it’s not surprising that many autoimmune skin conditions coincide with celiac disease. Research on the negative reactions gluten can trigger in the body is always evolving and expanding, so it’s important to talk to your doctor if you have (or suspect you have) celiac and are experiencing any of the skin problems mentioned above. While most of these conditions can’t be cured, lifestyle changes and medications may go a long way in mitigating them and improving quality of life.
Disclaimer: No information on this site should be relied upon to determine diet, make a medical diagnosis, or determine treatment for a medical condition. The information on this website is not intended to replace your relationship with a qualified healthcare professional and is not intended as medical advice.
Managing a wheat allergy — your own or someone else’s — includes strict avoidance of wheat ingredients in both food and nonfood products.
Wheat is one of eight allergens with specific labeling requirements under the Food Allergen Labeling and Consumer Protection Act (FALCPA) of 2004. Under that law, manufacturers of packaged food products sold in the U.S. and containing wheat as an ingredient must include the presence of wheat, in clear language, on the ingredient label.
The grain is found in a myriad of foods — cereals, pastas, crackers and even some hot dogs, sauces and ice cream. It is also found in nonfood items such as Play-Doh, as well as in cosmetic and bath products. Note that the FALCPA labeling rules do not apply to nonfood items; if you have questions about ingredients in those products, check the manufacturer’s website or contact the company.
Foods that don’t contain wheat as an ingredient can be contaminated by wheat in the manufacturing process or during food preparation. As a result, people with a wheat allergy should also avoid products that bear precautionary statements on the label, such as “made on shared equipment with wheat,” “packaged in a plant that also processes wheat” or similar language. The use of those advisory labels is voluntary, and not all manufacturers do so.
A challenging aspect of managing a wheat allergy is baking. While there’s no simple substitution for wheat as an ingredient, baked goods such as breads, muffins and cakes may be made using a combination of non-wheat flours, such as those made from rice, corn, sorghum, soy, tapioca or potato starch. Your allergist can provide you with guidance on which grains are safe for you.
Options for wheat-free grocery shopping include foods made from other grains such as corn, rice, quinoa, oats, rye and barley.
The recent growth in gluten-free products is making it easier to manage a wheat allergy. Gluten is a protein found in wheat, barley and rye.
A gluten-free product may be safe for those who are allergic to wheat because the product should not contain wheat ingredients. However, because a product marketed as “gluten-free” must also be free of rye and barley in addition to wheat, those who must avoid only wheat may be limiting themselves. Anyone managing a food allergy shouldn’t rely on a “free from” label as a substitute for thoroughly reading the complete ingredient label.
People with any kind of food allergy must make some changes in the foods they eat. Allergists are specially trained to direct you to helpful resources, such as special cookbooks, patient support groups and registered dietitians, who can help you plan your meals.
Managing a severe food reaction with epinephrine
A wheat allergy reaction can cause symptoms that range from mild to life-threatening; the severity of each reaction is unpredictable. People who have previously experienced only mild symptoms may suddenly experience a life-threatening reaction known as anaphylaxis. In the U.S., food allergy is the leading cause of anaphylaxis outside the hospital setting.
Epinephrine (adrenaline) is the first-line treatment for anaphylaxis, which can occur within seconds or minutes, can worsen quickly and can be deadly. In this type of allergic reaction, exposure to the allergen causes the whole-body release of a flood of chemicals that can lead to lowered blood pressure and narrowed airways, among other serious symptoms.
Once you’re diagnosed with a food allergy, your allergist will likely prescribe an epinephrine auto-injector and teach you how to use it. Check the expiration date of your auto-injector, note the expiration date on your calendar and ask your pharmacy about reminder services for prescription renewals.
Be sure to have two doses available, as the severe reaction may recur. If you have had a history of severe reactions, take epinephrine as soon as you suspect you have eaten an allergy-causing food or if you feel a reaction starting. Epinephrine should be used immediately if you experience severe symptoms such as shortness of breath, repetitive coughing, weak pulse, generalized hives, tightness in the throat, trouble breathing or swallowing, or a combination of symptoms from different body areas such as hives, rashes or swelling coupled with vomiting, diarrhea or abdominal pain. Repeated doses of epinephrine may be necessary.
If you are uncertain whether a reaction warrants epinephrine, use it right away, because the benefits of epinephrine far outweigh the risk that a dose may not have been necessary.
Common side effects of epinephrine may include anxiety, restlessness, dizziness and shakiness. Rarely, the medication can lead to abnormal heart rate or rhythm, heart attack, a sharp increase in blood pressure, and fluid buildup in the lungs. Patients with certain pre-existing conditions, such as diabetes or heart disease, may be at higher risk for adverse effects and should speak to their allergist about using epinephrine.
Your allergist will provide you with a written emergency treatment plan that outlines which medications should be administered and when (note that between 10 and 20 percent of life-threatening severe allergic reactions have no skin symptoms). Be sure that you understand how to properly and promptly use an epinephrine auto-injector.
Once epinephrine has been administered, immediately call 911 and inform the dispatcher that epinephrine was given and that more may be needed from the emergency responders.
Other medications, such as antihistamine and corticosteroids, may be prescribed to treat symptoms of a food allergy, but it is important to note that there is no substitute for epinephrine — this is the only medication that can reverse the life-threatening symptoms of anaphylaxis.
Managing food allergies in children
Because fatal and near-fatal wheat allergy reactions, like other food allergy symptoms, can develop when a child is not with his or her family, parents need to make sure that their child’s school, day care or other program has a written emergency action plan with instructions on preventing, recognizing and managing these episodes in class and during activities such as sporting events and field trips. A nonprofit group, Food Allergy Research & Education, has a list of resources for schools, parents and students in managing food allergies.
If your child has been prescribed an auto-injector, be sure that you and those responsible for supervising your child understand how to use it.
Can dermatitis herpetiformis be cured?
No. The skin changes and associated symptoms of dermatitis herpetiformis usually go away with diet changes and medications. Medication can often be gradually withdrawn once a gluten free diet is adopted; however, if gluten is reintroduced to the diet then the rash and symptoms will recur.
How can dermatitis herpetiformis be treated?
Diet. Most doctors recommend that everyone with dermatitis herpetiformis should be on a gluten-free diet. Your dermatologist may arrange for you to see a dietician and may refer you to a gastroenterologist. The diet is slow to work, but usually gives relief from both skin and bowel symptoms.
A gluten-free diet is not the burden that it used to be; most supermarkets stock a range of gluten-free bread, biscuits, cakes, etc. The diet may:
- decrease and eventually remove the need for medical treatments
- reduce bowel symptoms.
Topical Medication. Strong steroid creams can be helpful in alleviating the symptoms of itch, and are usually prescribed as an initial treatment whilst awaiting test results, or to control mild symptoms where oral medications are not necessary.
Oral Medication. A drug called dapsone is the treatment of choice and usually reduces itch within a few days. Dapsone is an antibacterial medicine belonging to the sulphonamide class of antibiotics. As this may have side effects, treatment does not usually start until laboratory tests have confirmed the diagnosis. Dapsone usually causes a decrease in the red blood cell count and haemoglobin (the oxygen-carrying part of the red cell). This is usually dose-related, asymptomatic, and is monitored with blood tests. Rarely dapsone can cause a rapid fall in red blood count; for this reason blood tests are performed weekly to begin with. Any unusual symptoms, such as fever, sore throat, bruising, bluish lips or breathlessness, should be immediately reported to your doctor. If you are intolerant or allergic to dapsone, oral steroids may be given as an alternative treatment.
What can I do?
Once diagnosed with dermatitis herpetiformis, a gluten-free diet for life is strongly recommended. This increases the likelihood of staying symptom free and also optimises the general health of those with gluten intolerance.
Where can I get more information?
Web links to detailed leaflets:
Links to patient support groups:
For details of source materials used please contact the Clinical Standards Unit ([email protected]).
This leaflet aims to provide accurate information about the subject and is a consensus of the views held by representatives of the British Association of Dermatologists: individual patient circumstances may differ, which might alter both the advice and course of therapy given to you by your doctor.
This leaflet has been assessed for readability by the British Association of Dermatologists’ Patient Information Lay Review Panel
BRITISH ASSOCIATION OF DERMATOLOGISTS
PATIENT INFORMATION LEAFLET
PRODUCED AUGUST 2004
UPDATED OCTOBER 2009, JANUARY 2013, MARCH 2016, NOVEMBER 2019
REVIEW DATE NOVEMBER 2022
James Mcclymont recalls the pain and social stigma.
James Mcclymont was a 25-year-old truck driver when he mysteriously broke out in a blistery rash on his elbows, knees, crotch and the side of his face. He says the itching was so bad he can still remember how it felt decades later.
“It was intolerable. It’s like nothing you have ever experienced,” he recalls. “You can scratch until you bleed, and it’s still there.”
Mcclymont, 56, who lives in a rural community in Manitoba, Canada, was originally diagnosed with scabies, but a second doctor recognized what the rash really was. A skin biopsy taken from Mcclymont’s thigh confirmed that it was dermatitis herpetiformis, also known as DH.
DH is the form of celiac disease that erupts on the skin. This is a chronic autoimmune condition in which the gluten in wheat, barley and rye will trigger a rash that usually occurs on both sides of the body on the elbows, knees, and buttocks, although it can show up in other areas as well.
When Mcclymont, a native of Scotland who lived there when he developed DH, talks about the disease it’s hard not to hear the pain in his voice despite his melodic brogue. He describes a devastating time when he struggled to cope with everyday life.
Watery blisters developed everywhere his clothing rubbed and even on the bridge of his nose where his glasses sat. He was embarrassed by his appearance and struggled with new relationships. As a young man, he was self-conscious when he went out to nightclubs because he thought the rash was especially visible under the strobe lights.
“lt knocks your lifestyle back,” he explains. “People look at you scratching and think you have fleas. But you can’t stop yourself. How do you explain this to someone you just met?”
Though his story has a happy ending that includes marriage and control of the rash, it reflects the precise challenges of dermatitis herpetiformis within the larger context of celiac disease.
Testing, Treating and the Gluten-Free Diet
When someone who has dermatitis herpetiformis consumes gluten, his or her immune system launches an attack by producing antibodies. In celiac disease, the immune system attack damages the absorbing lining of the small intestine. In DH, the attack primarily takes place in the skin as antibodies stimulated in the intestine circulate through the bloodstream.
Immunoglobulin A (IgA) is deposited in the skin, triggering an immune reaction that results in the formation of the lesions.
Dr. Sylvia Hsu: gluten-free diet is essential for DH.
“The immune cells are soldiers, and when their see the enemy, they arm themselves and start to fight,” says Dr. Alessio Fasano, director of the Center for Celiac Research and Treatment at MassGeneral Hospital for Children in Boston. “What’s interesting in DH is that these immune cells, once armed, leave the battlefield and go to the skin.”
Although the effect is seen on the skin, touching gluten-containing foods or lotions, creams and other body products has not been shown to trigger a DH rash.
Those who have DH don’t always have classic intestinal damage, but the condition is still considered “full-blown celiac disease,” Fasano says, noting that in 25 percent of DH cases only the skin is affected. The remaining 75 percent have damage to the villi that line the intestine, but this is generally limited and patients may have no obvious gastrointestinal symptoms.
DH is diagnosed through the anti-tissue transglutaminase antibody blood test (tTG) and a skin biopsy. When the biopsy is done, a sample is taken from the area next to a skin lesion to determine if IgA occurs in deposits that appear in a granular pattern. When DH is diagnosed this way, the intestinal biopsy used to diagnose celiac disease is not needed.
Dr. Sylvia Hsu, a professor of dermatology at Baylor College of Medicine in Houston, says it’s critical for dermatologists, who treat skin conditions, to follow all the steps to confirm the diagnosed of DH. It’s important that the biopsy be taken from the correct spot. “If you don’t, you may miss the diagnosis,” says Hsu, who has the condition.
Once the diagnosis is made, patients go on the gluten-free diet and are prescribed dapsone, an oral medication that decreases inflammation and stops the growth of bacteria. Fasano says both treatments are typically needed to get DH under control.
“The gluten-free diet is not really efficient enough to turn off the inflammation of the skin,” he says. The patient is gradually weaned off dapsone, and the gluten-free diet can keep DH symptoms in remission, according to Fasano.
A review of the diagnosis and treatment of DH, published in the journal Clinical, Cosmetic and Investigational Dermatology in 2014, says dapsone is considered a valid option for patients with DH during the six-to-24-month period until the gluten-free diet is effective.
Although dapsone is generally well-tolerated and can quickly relieve the most severe itching, complications from the drug, including lowering of normal red and white blood cell counts, can occur, so close monitoring is advised. Several alternative sulfa drugs are recommended if dapsone causes side effects, according to the review.
Mcclymont is among those who react negatively to dapsone, which led to a week in the hospital soon after his diagnosis. Since then his DH has been treated with sulfasalazine and a strict gluten-free diet. He is occasionally exposed to gluten by accident and begins to feel an itch, but the virulent rash has not returned.
Still he has some reminders. DH left rough scars on his face and he has to be careful when shaving. “People with just celiac disease look normal,” he says. “With DH, the disease is on the inside, but it’s also showing on the outside.”
An Itch “Beyond Poison Ivy”
Although the diarrhea, bloating, pain and other stomach symptoms associated with celiac disease do affect some people with DH, including Mcclymont, many say the itching is the worst part, followed by the visibility of the rash and the scarring.
Suzanne Beach, 55, of Bellefontaine, Ohio, had stomach problems before she was diagnosed with celiac disease and DH. Sometimes these were so severe she would end up in pain on the bathroom floor. She lost 26 pounds and was hospitalized before doctors figured out what was wrong. But still, what really upset her was the bilateral rash typical of DH on her knees and elbows.
“Number one, it’s really itchy, way beyond having poison ivy,” Beach says. She’s grateful that she has only had two instances of the rash since being diagnosed. “Number two, I’m out in the community a lot and having the visible rash would drive me crazy,” she says.
Tania Fleming, 50, of Springfield, Pennsylvania, developed the rash nine years ago. Then, while taking a long road trip vacation, the itching became unbearable. “It was extremely uncomfortable.
Dr. Alessio Fasano, leading celiac disease expert.
“That’s what sent me over the edge,” she says. It also led to her celiac disease diagnosis, the gluten-free diet and the end of long-running intestinal symptoms. “The gluten-free diet changed my life,” says Fleming.
Cathy Stevenson, 60, of Saint Lawrence, Pennsylvania, sums up her symptoms prior to the gluten-free diet this way: “It itches insanely.” Her description is no exaggeration. In fact, originally the rash was thought to be a psychiatric condition because of an association with suicide.
“When we did not know what was going on, the majority of people with DH attempted suicide because nothing gave them relief,” Fasano explains.
Much more about the disease is understood today, but questions remain. Although the immunological connection has been established, experts still don’t know what causes it to be triggered. “Why do people go for so long eating gluten with no problems and then all of a sudden develop DH?” Fasano asks.
The same question is being asked about celiac disease overall, but Fasano says it applies even more to DH because the condition is rare in children and most often affects people in their 40s or older. Researchers are focusing on the composition of bacteria in the gut microbiome, which Fasano says can turn off or wake up the genes that put patients at risk for DH.
While research into celiac disease also benefits DH patients, they voice frustration that the skin form gets much less attention. They suspect it is under-diagnosed and not well understood even by the larger celiac disease community. “DH is the stepchild,” Mcclymont says. “Everywhere it’s ‘celiac, celiac, celiac.’ Then when you try to explain DH people think, ‘Oh yeah, you are just getting on the bandwagon.’”
Indeed, it’s hard to find continuing research specifically on DH. The U.S. National Institutes of Health database of clinical studies of human participants conducted around the world lists only three DH studies compared to 198 studies of celiac disease.
One reason is that DH is relatively rare, affecting only about one out of every 10 people who have celiac disease, Fasano says, One 1987 study done in Utah found the prevalence of DH to be about 11 cases per 100,000 people.
Hsu, who was diagnosed with DH in her 40s when she finally developed the classic itchy blisters after 10 years of occasionally getting a single non-itchy blister on her nose, says she diagnoses a new case of DH only about every three to five years in a busy practice. “A lot of people with celiac disease who get a skin eruption automatically think it’s DH, but that’s not often the case,” she says.
Some of Hsu’s DH patients would like to take dapsone as a long-term treatment because they don’t want to follow the gluten-free diet. The danger, aside from side effects, is that dapsone only helps with the skin condition, not damage to the intestine and the consequent risk of lymphoma, she says.
When DH symptoms persist, Hsu always looks at compliance with the diet. “Some patients say, ‘I still break out occasionally, so I just gave up,’” she notes. Others think they are following the diet, but are consuming gluten without realizing it. After diagnosis, it can take months of a gluten-free diet for the inflammatory response of the skin to clear, which can cause frustration.
Yet Fasano says compliance with the diet is much higher among DH patients compared to others who have celiac disease, particularly those who have less severe or no gastrointestinal symptoms.
The compliance rate can be traced back to the itch than can’t be adequately scratched. “People with DH have a great incentive to stick with the diet because the itchy rash is so difficult to cope with,” he says. “They know they will suffer dire consequences.”
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I love bread, pasta, and many other foods made with wheat. Luckily, I can eat them all without having to worry about gluten. But I have to admit that the growing public awareness of gluten and the problems it can cause has got me thinking.
Gluten is an umbrella term for the proteins gliadin (in wheat), secalin (in rye), and hordein (in barley). Bakers know it as the substance that makes dough resilient and stretchy. In some people, gluten triggers an immune reaction and causes inflammation of the lining of the small intestine, which can eventually interfere with the absorption of nutrients from food. This is called celiac disease. Some of the more common symptoms of celiac disease are:
- Abdominal cramps
- Foul-smelling stools
- Weight loss
- Skin rash
Some people have no apparent symptoms or their symptoms are so subtle that they never mention them to their doctor. As a result, celiac disease may be misdiagnosed or go undiagnosed for years.
A growing number of people who don’t have celiac disease suffer many of its symptoms. They are classified as “gluten sensitive” or “gluten intolerant.” You can read more about gluten sensitivity in the free online excerpt of “Food Allergy, Intolerance, and Sensitivity,” a new Special Health Report from Harvard Health Publishing.
My dad developed the tingling, painful condition known as peripheral neuropathy late in his life. The cause was never clearly identified. While researching the topic of gluten sensitivity for “Food Allergy, Intolerance, and Sensitivity,” I read a research paper in the journal Neurology that said peripheral neuropathy can be a symptom of gluten sensitivity. It made me wonder if my father’s condition was linked to an undiagnosed gluten sensitivity. Digging further into the medical literature, I saw that a wide range of seemingly unrelated symptoms can be triggered by exposure to gluten and that a gluten-free diet can sometimes be an effective remedy. In one study published in the Archives of Dermatology, dermatologists found that going gluten-free can help relieve the itchy, red skin blisters of dermatitis herpetiformis. Clearly, gluten-related symptoms this diverse are hard to pin down.
I will never know whether my Dad might have benefited from a gluten-free diet because he passed away a few years ago. But it’s good to know that at least some people are being helped by the growing awareness of the problems gluten can cause.
More complete information on food allergies and reactions, including information on diagnosing and treating gluten-related conditions, is available in the new Harvard Medical School report, “Food Allergy, Intolerance and Sensitivity.” You can read an excerpt or purchase the report at www.health.harvard.edu.
Perhaps you’ve been diagnosed with eczema, infected mosquito bites, contact dermatitis, psoriasis or hives.
Dermatitis herpetiformis, also known as DH and Duhring’s disease, is the skin version of Celiac disease and non-Celiac gluten sensitivity. Of the 300,000 Canadians diagnosed with Celiac disease, more than 10% are thought to have DH. This skin condition rarely affects children and is almost twice as likely to occur in men than in women. (1)
To further complicate the diagnostic picture, those with DH often do not have any gut issues. One study showed that 20% of those with DH had completely normal digestive tracts! (2)
What is DH?
DH is a chronic recurrent disease that occurs because of a gluten allergy or sensitivity. The main symptom is a very itchy rash. In medical lingo, the rash is called a papulovesicular pruriginous rash, however you may describe it as hives, a rash, or simply itchy skin. This particular skin condition does not go away. Steroid creams may help the itchiness but they do not solve the problem.
DH is Celiac disease in disguise.
The cure? Strict adherence to a gluten-free diet.
Celiac disease is the gut version of DH. As you know, Celiac disease is usually characterized by gastrointestinal discomfort like bloating and stomach pain caused by ingesting the gluten protein found in wheat products. DH is also caused by ingesting the gluten protein, but patients rarely have gastrointestinal symptoms. (3)
This means you could have Celiac disease with zero of the commonly exhibited symptoms of Celiac disease. That means no diarrhea, no abdominal pain, no bloating. Your only symptom would be an itchy skin rash that doesn’t go away.
The skin rash is thought to occur more prominently on the elbows and knees, however it can occur anywhere on the body. If you’ve ever had DH before, you know just how itchy can be. Often, it is scratched at until it bleeds or even scars. The intense itchiness can even contribute to a lack of sleep and a decreased ability to focus. In the 19th century, before itch-alleviating medications were developed, DH was reported as a cause of suicide.
What causes DH?
The exact cause of DH has yet to be discovered. What we do know about DH is:
- You need to be genetically susceptible;
- You need to have ingested gluten for a long period of time.
Outside of these two facts, we have much to learn about DH. Recent research suggests that tissue transglutaminase (tTG) may play a role. TTG is an enzyme that is found in every tissue of our body and helps to bind proteins together. This makes it essential in wound healing and the repair of other damaged tissue.
In Celiac disease, tTG acts on the gliadin protein by altering its appearance which triggers the immune system to attack the intestinal villi.
In DH, tTG is also involved as is another enzyme called epidermal transglutaminase (ETG). ETG helps to connect skin proteins to each other. In the development of DH, it is thought that ETG is released into the bloodstream and then deposited into the skin. (4) The immune system then mistakes the ETG enzyme in the skin for a foreign invader. An immune response occurs and DH is the result.
How is DH diagnosed?
Proper diagnosis of DH is tricky. The gold standard for diagnosis involves taking a skin biopsy millimeters away from a lesion. The biopsy must be done on skin that is not undergoing a reaction. If you sample skin where there is an eruption, a misdiagnosis for other skin conditions are common.
After a skin biopsy is taken, the sample then needs to be tested for immunoglobulin deposits (IgA) under the top layer of the skin. If the deposits exist, and they are granular in nature, DH is diagnosed. A biopsy of the small intestine (like what is commonly done in Celiac disease) does not need to be performed unless there are gastrointestinal symptoms.
If you have a positive diagnosis of DH, you have Celiac disease.
I can’t stress this point enough. Even though you may not have any other symptoms commonly associated with Celiac disease, a diagnosis of DH means your body cannot ingest gluten.
Can you eat a little gluten if you have DH?
Absolutely not. Remember, DH is another form of Celiac disease and the only way to effectively treat Celiac disease is strict adherence to a gluten-free diet. Unfortunately, exposure to gluten is likely to happen at some point. For a detailed look at all the foods gluten hides in, please see this post.
You can take a crash course in going gluten free in this post.
In Celiac disease, a gluten exposure is likely to cause symptoms for 1-2 days. In DH, a single gluten exposure can cause symptoms for weeks. If you’re just starting a gluten-free diet, be patient. You may not notice any change in symptoms for months. To further complicate the issue, our skin may store these immunoglobulin deposits (IgA) for more than two years after starting a gluten-free diet. (5) This makes it possible to get flare-ups or outbreaks even without a recent exposure to gluten.
Most individuals get diagnosed with DH in their thirties or forties. That means the average person has likely consumed wheat products for more than three decades. Be patient – it can take upwards of a year for symptoms to improve. And stick to a gluten-free diet for the long term. Eating gluten free is the only cure for DH.
To further complicate treatment of DH, gluten is not the only possible trigger. The following substances have been shown to exacerbate or cause flare-ups of DH:
- Those who have DH can be triggered by exposure to iodine. (6) The exact reason why this occurs is still not understood.
- If your skin is not improving after adhering to a strict gluten-free diet, look at possible iodine sources in your diet. This includes:
- Iodized salt
- Iodine supplements
- Non-steroidal anti-inflammatory drugs have been shown to aggravate skin lesions. (7)
- Those with DH are recommended to take acetaminophen (Tylenol) for aches and pains.
- Skin creams and hair products
- Gluten can’t be absorbed through the skin, however many self-care products that are accidentally consumed (like lip balms, lipsticks, and other cosmetics) may contain gluten.
- Rashes occurring after the use of skin creams are thought to be because skin with DH is already irritated.
- There is no study citing a clear link between stress and DH. However, many patients with DH have linked increases in stress levels with outbreaks in their skin.
How do you treat DH?
To make symptoms more manageable, the following medications can also be prescribed by your family doctor or dermatologist:
- Dapsone (sulfapyridine)
- Dapsone blocks the inflammatory process from happening in your skin.
- Please note that the decrease in itching provided by dapsone does not mean the disease is cured. Dapsone should not be used in place of a gluten-free diet.
- Dapsone also has unwanted side effects. To ensure these are kept at bay, keep your dapsone dose as low as possible and for as short a period of time as possible. Some of the common side effects of dapsone include: (8)
- Kidney damage
- Peripheral neuropathy
- Leukopenia (decreased number of white blood cells)
- Topical creams
- Topical creams often contain the steroid cortisone. Cortisone helps to suppress your immune system’s reaction which decreases symptoms. Unfortunately, cortisone creams also have unwanted side effects including:
- Thinning of the skin
- Topical creams often contain the steroid cortisone. Cortisone helps to suppress your immune system’s reaction which decreases symptoms. Unfortunately, cortisone creams also have unwanted side effects including:
These medications only help alleviate the symptoms. They are not a cure for DH.
Looking for more information? Check out our other blog posts about gluten.
Now, I want to hear from you!
Has a gluten-free diet improved your skin?
Also published on Medium.
What you need to know about dermatitis herpetiformis
Dermatitis Herpetiformis (DH) is a form of celiac disease. It is a skin condition characterized by groups of itchy blisters. The ingestion of gluten (a protein contained in wheat, rye and barley) triggers an immune system response that deposits lgA antibodies under the top layer of skin. IgA antibodies are present in affected as well as unaffected skin. If you have DH and do not follow a gluten-free diet, you may develop the intestinal damage which is characteristic of celiac disease. In DH, the primary lesion is on the skin rather than the small intestine. The degree of damage to the small intestine is often less severe or more patchy than in those with celiac disease who do not have DH. DH is more common in men than in women, affects approximately 10-15% of people with celiac disease, and is typically diagnosed in adulthood. DH is permanent and symptoms/damage will occur if gluten is consumed.
The lgA deposits result in eruptions of a painfully itchy rash and may progress to red, raised patches of skin that develop into small, watery blisters. The itching and burning of the eruptions are severe and the urge to scratch them is intense. Scratching will further irritate the eruptions. Eruptions commonly occur on pressure points – around the elbows, the front of the knees, the buttocks, back, shoulders, face, and scalp, but can occur anywhere. Eruptions are usually bilateral, occurring on both sides of the body. Obvious gastrointestinal symptoms in DH are uncommon.
If the eruptions appear to be DH, your dermatologist will take a small biopsy of unaffected skin, next to an eruption. The presence of IgA deposits confirms a diagnosis of DH. An endoscopy is not necessary for diagnosing DH. Only about half of individuals with DH test positive for celiac disease using standard CD blood screening tests. Dermatitis herpetiformis is an inherited autoimmune digestive disease and confirmation of DH will help future generations be aware of the risk within the family.
Strictly following a gluten-free diet for life is the only complete treatment. This involves the elimination of wheat, rye, barley, and foods made from these grains (or their derivatives) from the diet. It may take two or more years for the lgA deposits under the skin to completely clear. A medication called Dapsone may also be prescribed. You will need to follow up with your doctor on a regular basis if you use this drug. Dapsone allows the eruptions to heal, but does not cure DH. Discuss the potential side effects of this drug with your doctor before starting it. Your goal should be to take as little as possible for as short a time as required to allow the diet to control the DH.
The gluten-free (GF) diet is a lifelong commitment and should not be started before being properly diagnosed with DH. Starting the diet without complete testing is not recommended and makes later diagnosis difficult. Tests to confirm DH could be negative if a person were on a GF diet for a period of time. For a valid diagnosis, gluten would need to be reintroduced for at least several weeks before testing.
Excellent, if you stay on the gluten-free diet. The severity and frequency of eruptions will decrease as you continue with the diet. Iodine and sun may trigger eruptions in some people. However, iodine is an essential nutrient and should not be removed from the diet without a physician’s supervision.