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What To Know About Gluten Ataxia

Gluten ataxia (GA) is an autoimmune disorder that causes neurological (nervous system) effects when you eat gluten. It's typically a progressive disease that worsens with time.

Ataxia is poor muscle control and coordination. You may experience changes to the way you walk, speak, and your ability to see. Most people with gluten ataxia don't have gastrointestinal (GI) symptoms.

Up to 6% of the general population may have gluten ataxia. Your healthcare provider may recommend diagnostic testing if you experience issues with coordination or slurred speech after eating gluten.

If your symptoms improve after removing gluten from your diet, they could be attributed to gluten. The best way to manage GA is with a strict gluten-free diet. Seek out gluten-free alternatives and read all food labels closely to ensure the product is appropriate. GA may cause irreversible brain changes, movement disorders, and muscle conditions.

Gluten ataxia symptoms usually start slowly and progressively get worse with time. One study found that the average age of symptom onset was 53 years old. Neurological Symptoms Gluten ataxia may be a symptom of celiac disease, another chronic (long-term) autoimmune disorder caused by an immune reaction to eating gluten. However, celiac disease primarily causes digestive symptoms. Gluten ataxia primarily causes neurological symptoms that can dramatically affect your quality of life. Ataxia usually involves the part of your brain that controls movement. This could make it harder to control your movement and cause balance issues. Possible neurological symptoms include: Slurred speech  Hoarse voice Rapid back-and-forth eye movement Muscle weakness Overactive reflexes Muscle tightness Difficulty with fine motor movements (e.G., writing) You could have quick, sudden muscle twitches. It's not uncommon to feel these rhythmic twitches on the roof of your mouth. Some people also notice chaotic, involuntary eye movements. Gastrointestinal Symptoms Some people may experience gastrointestinal (GI) symptoms, but it's less common. If you do experience GI symptoms, they may include: Gluten ataxia is an autoimmune condition triggered when you eat gluten. Your overactive immune system becomes sensitive to gluten, and your body produces antibodies that mistakenly attack your health cells instead of foreign pathogens. This leads to brain damage and neurological symptoms. Multiple factors may cause gluten ataxia. A deficiency in vitamin E or B1 can trigger it, as can a small intestine that has difficulty digesting nutrients. More research is needed to determine the underlying causes of gluten ataxia. Risk Factors Several risk factors are associated with gluten ataxia. You're more likely to have gluten ataxia if you have celiac disease. The risk of ataxia is highest the first year after you've been diagnosed with celiac disease.There may also be a genetic link. If someone in your family has gluten ataxia, you may have a higher risk of developing it. Researchers believe there may be some link between gluten-related disease and the HLA DQ2 gene, one of the two main celiac disease genes. After taking your medical history, your healthcare provider may recommend additional diagnostic testing. Gluten ataxia tests include: Your healthcare provider may recommend a gluten-free diet to determine if diet triggers your symptoms. If your symptoms improve or stabilize when you avoid gluten, this may indicate a gluten intolerance. You may be asked to self-monitor your symptoms using a standardized scale. This will help your healthcare provider understand the severity of your symptoms. It will also help you track your symptoms over time. Gluten ataxia symptoms typically worsen with time, so it's important to monitor them. Gluten is the main trigger for the symptoms associated with gluten ataxia, so, like celiac disease, the primary treatment for gluten ataxia is a gluten-free diet. Try to remain gluten-free for an entire year to see results. Your symptoms may persist with a gluten-free diet, but you might see significant improvement. No medications or other therapies have been approved to treat gluten ataxia. Adhering to a strict gluten-free diet may reduce the severity of your gluten ataxia symptoms. Gluten is a protein that naturally occurs in wheat, barley, and rye. It may also be found in oats and other grains that come in contact with or are made from wheat, barley, or rye. This includes bread, pasta, and dough. Focus on whole foods like: Fruits and vegetables Rice and potatoes Nuts Beans Dairy products Fish and meats There are also many gluten-free options, including breads, flours, and snacks. Read all your food labels to make sure they are labeled "gluten-free. Gluten can hide in products like seasonings, beer, soups, and processed meat. It might also be in products like lip balm, supplements, dental products, and medications. Here are some more tips: Read food labels carefully Check restaurants for gluten-free menus and let the server know you have gluten ataxia Store and prepare foods with gluten in different areas than gluten-free foods Avoid buying in bulk due to possible cross-contamination Completely avoiding gluten might be impossible, as trace amounts are in many foods. However, try to avoid it as much as possible. You may find that you can tolerate a low amount. Always follow the guidance of a healthcare provider when trying diet shifts. Gluten ataxia is a progressive condition, so it may cause certain neurological complications. It can cause irreversible brain changes that can be difficult to treat. Other complications of gluten ataxia include: Encephalopathy: Conditions that cause a change in brain function (e.G., confusion, memory loss) Myopathy: Conditions that attack and weaken muscles Myelopathy: A spinal cord injury caused by compression Chorea: A movement condition that leads to involuntary movements Gluten ataxia is a chronic, progressive condition. You may reduce your symptoms by carefully avoiding all gluten products. Focus on naturally gluten-free products like legumes, nuts, and dairy products. Seek out gluten-free alternatives to baking products that use ingredients like rice, corn, cassava, tapioca, or millet. Make sure all restaurants and servers—as well as family, friends, and coworkers—are aware of your intolerance. This will help reduce the risk of cross-contamination. Any utensil or surface that comes into contact with gluten should be sanitized afterward.

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Zeke Hernandez was worried. His 12-year-old son, Lucas, had not grown for two years. The family paediatrician told him to eat more, but it didn't work. Eventually, after a battery of tests, another doctor diagnosed Lucas with celiac disease, which was damaging his small intestine. The solution was to stop eating wheat.

Upgraded Travel Services Are Helping To Ease Food Allergy Fears

By Lisa McCarty

For The New York Times

For the 33 million Americans managing any of the nine most common food allergies — including milk, eggs, nuts, wheat, soy, sesame and different types of fish — traveling safely can be challenging, but it's becoming easier.

In the air, where carriers say they can't guarantee fully nut-free flights, the recently enacted Federal Aviation Administration Reauthorization Act will, over the next two years, add epinephrine injectors on planes and provide additional medical training for crew members.

On the ground, hotels and restaurants are also customizing meals, providing menus with allergen symbols, enhancing staff education and instituting better processes for food handling.

But still, it's critical to speak up for yourself. As a person who is gluten-intolerant and a parent of a child with a serious peanut allergy, I've learned simple and effective ways to eat safely and reduce the risk of a reaction while away from home.

Pack to protect yourself

Consider packing allergy-friendly snacks for your trips. Some of the reliable brands without peanuts, tree nuts, gluten and dairy are MadeGood and Enjoy Life. (Make sure to double-check all ingredient labels anyway to be safe.) These portable products include snack chips and granola bars. For travel within the United States you can also store fresh fruit in resealable bags with reusable mini-ice packs, which are permitted in carry-on luggage, but the ice packs must be placed with other liquids when you're passing through security.

If you travel with an epinephrine injector, insert a tracker such as an Apple AirTag or Tile in its case and place it in your carry-on. Then, set an alert to notify you if you forget it at home or misplace it during your travels, so you will never be without it. The Transportation Security Administration limits passengers to two injectors, which should be kept in the original box with a visible prescription label.

The Food and Drug Administration also suggests packing cleansing wipes. Unlike hand sanitizer, disinfectant wipes can remove up to 99 percent of allergens, including peanut residue, from surfaces. This can help protect you from cross-contamination. Be sure to wash your hands afterward to avoid direct contact.

Tell your hotel what you need

The Americans With Disabilities Act helps to protect those with food allergies by giving them the right to ask for necessary changes in hotel policies or conditions that place them at a disadvantage. However, hotels and rental properties can't always guarantee allergy-conscious accommodations. When booking, prioritize establishments rated highly by other travelers with dietary sensitivities in online tools like the Spokin app and blog. The service allows you to search allergy-specific reviews of hotels and restaurants. Walt Disney Resorts, Hilton, Marriott, Fairmont, Kimpton and the Four Seasons are a few highly rated global hotel chains. Additionally, all Kimpton Hotels around the world offer a Forgot It? We've Got It program, in which they stock nonallergenic toiletries and snacks.

Most hotel booking apps allow you to limit your search to rooms with a kitchen, should you prefer to have the control that comes with preparing your own meals. If you can't book a room with a kitchen, you may be able to ask the front desk for a microwave and a minifridge to store and reheat your own meals. When you book, personalize your profile with details of your dietary sensitivity and confirm with managers upon arrival. Be sure to ask them to also make their staff aware.

Airbnb and Vrbo properties typically come with a full kitchen, but remember to wash cookware and service items with hot soapy water before use to reduce the risk of contamination.

Fly allergy-friendly skies

The Air Carrier Access Act, like the ADA, protects airline passengers with dietary sensitivities by permitting early boarding for travelers to clean the seats and other surfaces. Although many airlines do not currently serve peanuts, a common allergen, there is no guarantee that onboard snacks do not contain traces of peanuts, which could set off a reaction. Some flights have designated areas called buffer zones, where peanut products are not served or eaten by passengers. Contact the airline before booking to learn about the specifics of your flight.

At the airport, Spokin can help locate nearby suitable meal options in 80 countries. You can filter by your specific dietary restriction and view thousands of user reviews for each establishment. The FindMeGlutenFree app searches worldwide airports for celiac-friendly options.

Talk to the chef

It seems simple, but filtering a Google Maps search with the keywords "specialty markets" can reveal a world of allergy-friendly options as well as helpful reviews. Organic markets or health stores are often good alternatives for people with food intolerances.

If you're planning to eat out, platforms such as OpenTable allow you to make direct requests for accommodations in 80 countries. The AllergyEats app lets you search for restaurants with dietary restrictions by state, but it is available only in the United States.

For international destinations, consider carrying a downloadable chef card from the nonprofit group Food Allergy Research & Education to convey, in any of the 10 languages besides English offered on its website, what foods a restaurant must avoid serving you. The iTranslate app can translate from a photograph of a menu or a sign to help you convey your needs to the restaurant staff.

For U.S. Getaways, when possible, choose off-peak hours to dine — typically between 2 and 4 p.M., versus during the lunch or dinner rush. At those times, the chef is more likely to be able to speak with you about special meal requests. Also, without orders piling up, the kitchen staff can lower the risk of cross-contamination by taking more time to prepare your meal carefully.

Originally Published: August 6, 2024 at 5:30 a.M.

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