A skin rash that affects 15 to 25 percent of people with celiac disease, dermatitis herpetiformis (DH) is characterized by an intensely itchy, blistering rash that may occur anywhere on the body

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You’re worried. You’ve got a blistering skin rash, and you suddenly have difficulty walking. It’s hard to get and stay asleep and you’re psychologically depressed. You wonder, “Are these celiac symptoms? How can a little thing like gluten be causing so much havoc?”

If so, remember that help is on the way. Specialists in gut disturbances are acutely aware of these symptoms and are working to lead you to a promised land free of pain and anxiety.

First step: Get a handle on the potential spectrum of celiac symptoms or gluten-influenced disorders you may be dealing with.

Studies and Research on Celiac Symptoms

At a recent Consensus Conference on Gluten Sensitivity in Oslo, a panel of 15 experts referred to these conditions as “gluten-related disorders” and proposed classifying them based on the type of immune reaction triggered by gluten: allergic, autoimmune, or immune-mediated.

The immune system responds to gluten in different ways, depending on who you are and your genetic disposition. Different organs can be affected by different types of gluten sensitivity symptoms or gluten intolerance.

In celiac disease, the small bowel is affected. In dermatitis herpetiformis, the skin is targeted, resulting in an itchy rash. Gluten ataxia impacts the brain; it’s a neurologic condition characterized by the loss of balance and coordination.

The Oslo researchers divided the gluten-related spectrum into three main categories:

• Allergic. A wheat allergy occurs when the body produces antibodies (usually IgE) in response to wheat (including gluten, the protein found in wheat). These antibodies circulate throughout the bloodstream, triggering an immune response (an allergic reaction), which occurs within minutes or up to a few hours after gluten exposure.
• Autoimmune. This includes celiac disease, dermatitis herpetiformis and gluten ataxia. In celiac disease, gluten sets off an autoimmune reaction that causes the destruction of the villi in the small intestine, interfering with the absorption of nutrients from food. Dermatitis herpetiformis is known as the skin form of celiac disease, characterized by a blistering, itchy rash. Gluten ataxia is characterized by damage to the cerebellum, resulting in difficulty with balance and coordination.
• Immune-mediated. This includes non-celiac gluten sensitivity. Non-celiac gluten sensitivity is a poorly understood entity thought to possibly have its own immune mechanisms affecting different parts of the body. Many people with non-celiac gluten sensitivity have celiac-like symptoms but have no corresponding damage to the gut. It is possible, but as yet unproven, that their immune reactions are related to involvement of the innate immune system, a primitive system that sets up barriers to repel invaders, rather than the adaptive immune system. The onset of symptoms is hours to days after gluten exposure. It must be stressed again that research is ongoing about non-celiac gluten sensitivity and that the condition remains ill defined at present.

Celiac Symptoms: More to the Story

Here are additional details on celiac symptoms and celiac disease:

• Dermatitis herpetiformis: A skin rash that affects 15 to 25 percent of people with celiac disease, dermatitis herpetiformis (DH) is characterized by an intensely itchy, blistering rash that may occur anywhere on the body, including limbs, trunk, groin, hands, fingers, face, scalp, and along the hairline. The rash is bilateral in nature; both knees or both arms, not just one, are usually affected. Many people with DH have none of the outward digestive symptoms of celiac disease, and only about 40 percent of them have the positive blood tests for celiac disease. But they often have the same intestinal damage as those with celiac disease.
• Gluten ataxia: Gluten ataxia is a neurologic condition characterized by the loss of balance and coordination. It can also affect fingers, hands, arms, legs, speech, and even eye movements. Typical symptoms include difficulty walking or walking with a wide gait, frequent falls, difficulty judging distances or position, visual disturbances and tremor. With gluten ataxia, damage takes place in the cerebellum, the balance center of the brain that controls coordination and complex movements like walking, speaking, and swallowing. Purkinje cells in the cerebellum, key in maintaining balance, are thought to be lost in gluten ataxia.
• Neurological disorders: Certain neurological disorders—idiopathic epilepsy (epilepsy without a known cause), ataxia (unstable gait, clumsiness), peripheral neuropathy (tingling or numbness in the hands or feet), schizophrenia, and even recurrent headaches—can be associated with celiac disease. Some syndromes, like epilepsy with calcification in the brain, are definitely linked to celiac disease.

In addition, certain psychiatric disturbances—hallucinations, depression, anxiety, suicide ideation—occur more frequently in patients with celiac disease.

Celiac disease can also present as autistic-like behaviors.

Although autism and celiac disease are distinct and unrelated entities, some autistic-like behaviors are common in celiac disease, especially in young children. A child with undiagnosed celiac disease may, in fact, appear sad, introverted, unwilling to socialize or communicate even with his or her parents, or the child may be cranky and excessively irritable.

Neurologic, psychiatric, emotional, and autistic-like manifestations have been described in celiac patients who show minimal or no GI symptoms and no damage in the small intestine.

Fortunately, all these symptoms, including depression, anxiety, and hallucinations, are likely to regress on a gluten-free diet.

Sources & Resources

For further reading, see these University Health News posts:

• “What Does ‘Gluten-Free’ Mean?“
• “Gluten Intolerance Symptoms: Is It Celiac Disease That’s Making You Ill?“
• “Celiac Disease Diet: Your Gluten-Free Planning Guide“

Originally published in 2016 and regularly updated.