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For years, patients with celiac disease or gluten sensitivity have had to limit their diets to eliminate gluten, a protein found in wheat, barley and rye. If they didn’t, they’d run the risk of suffering chronic diarrhea, bloating and other unpleasant symptoms. This limited diet drove people to have to purchase expensive, specialized foods that often are highly processed. To make matters worse, no medications for celiac disease are approved by the Food and Drug Administration as of spring 2018.
However, a promising new drug, Nexvax2TM, is headed into phase two clinical trial that targets the HLA-DQ2.5 immune recognition gene, which approximately 9 out of 10 celiac patients carry. Not everyone with the gene will develop celiac disease—it’s a complex condition with many unknown factors. And, frankly, it’s a little too early to celebrate the new drug. While it’s exciting progress for the celiac community, many drugs that enter phase two clinical trials don’t make it to market.
As researchers work toward an effective treatment and hopefully a cure, it’s vital for patients with celiac disease to understand that gluten avoidance should still be at the forefront of their minds. This includes eating at home, eating at restaurants and avoiding cross-contamination to prevent symptoms and long-term damage from celiac disease.
LISTEN: Dr. Lee discusses celiac disease in the Medical Intel podcast.
Symptoms of celiac disease
The symptoms of celiac disease easily can be mistaken for symptoms of other conditions. This can be frustrating for patients and doctors alike. Common symptoms include:
- Brain fog or confusion
- Chronic diarrhea
- Iron-deficiency anemia
- Joint pain
- Unintended weight loss
- Vitamin deficiency
Further, people with wheat allergies or gluten sensitivity not related to celiac disease also might experience these symptoms. It’s important to see a gastroenterologist to pin down the correct diagnosis and prevent worsening of symptoms or long-term damage. Unfortunately, the best way to determine whether you have celiac disease or another condition is to gauge your body’s reaction to gluten.
Preparing for celiac disease testing
Even if you’ve been avoiding gluten, a gastroenterologist might recommend daily gluten intake for a period of time leading up to your appointment to ensure we make the right diagnosis. Testing for celiac disease might include some of the following techniques, based on your symptoms and health history:
- Blood test
- Genetic test
- Intestinal biopsy
- Skin biopsy
- Physical exam
If you’re diagnosed with celiac disease or another gluten-related disorder, consider working with a dietitian to discuss how to balance a gluten-free diet. Some patients have dealt with vitamin and iron deficiency for so long that they might need special care to heal and prevent future concerns.
Our gastroenterology team has seen many celiac success stories over the years. I vividly remember treating a man who was emaciated—he’d lost substantial weight because, after years of suffering with abdominal distress, he could hardly eat anything without getting sick. When he was referred to our gastroenterology care team, we diagnosed him with celiac disease, and he was relieved to finally have an answer. His doctor and dietitian helped him learn what he could eat, how to check his vitamin levels and how to get appropriate follow-up care. Over time, he returned to a healthy weight and is doing much better today. It was amazing to see him return to his normal life. I only wish he’d come to us sooner!
Hope for people with celiac disease
Though we need more research into celiac disease treatment, there is a light at the end of the tunnel. Today’s consumers can enjoy a wide variety of gluten-free foods and drinks that weren’t available just 10 years ago. Even many restaurants are able to safely offer gluten-free options. While this progress is wonderful for patients and impressive to me as a doctor, we have to remember to always be mindful of gluten exposure.
Healthcare providers know that gluten-related conditions are real and that going gluten-free is not a passing trend or a fad diet. Unfortunately, some people treat it as such, and others don’t take people seriously when they truly have a gluten-related condition. The danger is that patients with an actual condition might be thoughtlessly or accidentally exposed to gluten, which can cause severe, long-lasting symptoms.
If you’ve experienced digestive symptoms and suspect you may have celiac disease or a gluten-related condition, talk to your doctor. We want to help you reduce your symptoms, prevent long-term damage and lead a higher-quality life.