Gluten allergies — Tell me more about them?

Dear Sis living without wheat,

First off, it's so kind of you to be seeking out more information on your sister’s behalf. She’s lucky to have someone like you looking out for her! To shed some light on your inquiry, the term “gluten allergy” is often used as an umbrella for five different gluten-related conditions: celiac disease, non-celiac gluten sensitivity, wheat allergy, dermatitis herpetiformis, and gluten ataxia. Each involves some level of intolerance to gluten, which is a glue-like protein found in cereal grains, including barley, wheat, and rye. While the treatment for all five conditions is generally the same — avoiding gluten — each has slightly different symptomatology, cause, and level of severity. While avoiding gluten is a great start for your sister, she will likely benefit from a specific diagnosis from a health care provider to add specificity to her treatment plan. In the meantime, here's some information on each gluten-related condition to help broaden your understanding of gluten allergies. 

Celiac disease is an autoimmune disorder, where the presence of gluten in the body prompts an immune response that attacks the small intestine. This leads to inflammation and damage of the villi (small hair-like projections in the small intestine that aid in nutrient absorption). This damage may cause gastrointestinal symptoms, such as bloating and diarrhea, as well as malabsorption, nutrient deficiencies or malnutrition, and weight loss. Celiac disease has also been linked to higher rates of some types of cancer and commonly co-occurs with other autoimmune conditions. Diagnosis of celiac disease requires several medical tests, including a blood test, and because the disease does have a genetic component, testing is also strongly recommended for first-degree relatives of celiac patients. There is no cure for celiac disease, only prevention of further intestinal damage, so early diagnosis is key!

Wheat allergies are allergic reactions to gluten and other proteins found in wheat. Symptoms typically appear within a few minutes or hours of consuming wheat products and may include abdominal pain or nausea, similar to other types of gluten intolerance. However, wheat allergies may also cause rashes, coughing, or difficulty breathing, and in extreme cases, they may even cause anaphylaxis (a life-threatening allergic reaction characterized by swelling in the throat and difficulty breathing). Wheat allergies typically prompt a quicker symptom onset and different set of symptoms than other types of gluten intolerance. Like many other food allergies, wheat allergies are typically diagnosed via skin prick tests or oral food challenges conducted by allergy specialists or other health care providers. Treatment includes avoiding wheat and other foods that trigger the allergic reaction, as well as prescription for an epinephrine pen for emergency use if a severe allergic response occurs.

Non-celiac gluten intolerance is a catch-all term used when gluten-related symptoms are present but tests return negative for other alternative diagnoses (such as celiac disease and wheat allergies). Non-celiac sensitivities are usually associated with symptoms similar to celiac, including stomach pain, bloating, or bowel movement changes, as well as non-celiac symptoms such as brain fog, headaches, or difficulty concentrating. Sometimes, non-celiac gluten intolerance can result in symptoms very similar to those of irritable bowel syndrome (IBS) or wheat allergies. Despite the potential similarity in symptoms, those with non-celiac gluten intolerance won't have abnormal blood tests like people with celiac disease, nor will they have responses to skin prick test or oral food challenges consistent with wheat allergies.

Dermatitis herpetiformis is a rash affecting the skin, which usually includes small, itchy bumps that resolve on their own without scarring. Like celiac disease, dermatitis herpetiformis is an autoimmune reaction with a genetic component, and it may co-occur with celiac. A health care provider uses a variety of tests to diagnose the rash, and it's typically treated using a combination of short-term medications to immediately improve skin lesions and long-term dietary changes to remove gluten from the diet and prevent the rash from reoccurring in the future.

Gluten ataxia refers to sporadic ataxia — loss of full control of bodily movements resulting in impaired balance and coordination — that is accompanied by other markers of gluten sensitivity and can't be attributed to other diagnoses. It’s still unclear what causes gluten ataxia, but there is some evidence to suggest that it involves an autoimmune response triggered by gluten that causes damage to parts of the brain. It usually has a slow onset in late middle-age. Because general ataxia can be caused by many diseases, gluten ataxia is difficult to diagnose because it requires ruling out other potential diagnoses. Currently, the only available treatment is to remove gluten from the diet, but the prior damage to the brain is sometimes irreversible and may, in some cases, lead to further atrophy and degeneration even once a gluten-free diet has been adopted.

Despite their differences in causes and symptoms, all five of these conditions are treated by removing gluten from the diet. While this may seem like a daunting transition for many people, there are an abundance of gluten free options to try, ranging from naturally gluten-free foods to specialty options, including:

• Potato, corn, rice, or soybean-based carbohydrates
• Most dairy products, including milk, yogurt, and cheese
• Fruits and vegetables
• Meat, poultry, and seafood
• Legumes, beans, and nuts
• Gluten-free substitutes for breads, cakes, and other wheat-based products

Many gluten-sensitive shoppers quickly become experts in checking and reading food labels. Unfortunately, some wheat-free products are prepared using equipment that is cross-contaminated with gluten, and other seemingly safe products such as sauces or condiments may include sneaky sources of gluten. Reading food labels, rather than relying on the main packaging, may be helpful in identifying which food items are and are not safe for your sister to consume. Additionally, in the United States, gluten-free foods must be labeled as such, so anything missing that label is likely best avoided. If your sister finds herself missing products such as breads or pastries, there are now many specialty gluten-free substitutes. Your sister may also wish to speak with a registered dietitian to discuss her new dietary restrictions and how to find and incorporate gluten-free foods into a tasty and satisfying diet. Many food establishments, such as restaurants and bakeries, have gluten-free options and there are some places that are entirely gluten-free, which helps reduce the risk of cross-contamination.

Your sister may have a lot on her plate right now, so to speak, as she adjusts to her new food reality. To support her through this process, you might consider learning about gluten-free eating and cooking, encouraging her to discuss questions with a health care provider or dietitian, and helping family and friends understand her new dietary needs. Some people who have gone gluten-free find that they enjoy cooking and eating more since it gives them greater control and autonomy about what is going into their bodies. With a bit of time and experimentation, your sister might even find that cutting out gluten actually expands her cooking and eating repertoire!

Wishing you and your sister many enjoyable meals in the future!