May is celiac awareness month, so I was delighted to answer questions about celiac disease and non-celiac gluten intolerance as a member of Orgain’s nutrition advisory board.
Can you explain the difference between gluten intolerance or sensitivity and celiac disease? Is there an easy way to identify if you have one or the other?
Celiac disease is a lifelong, hereditary autoimmune disease triggered by gluten, a dietary protein found in wheat, rye and barley. When someone with celiac eats gluten-containing foods, their body mistakenly attacks the small intestinal villi, the fingerlike projections responsible for nutrient absorption.
Diagnosing celiac disease begins with blood testing. If positive, people will undergo an upper endoscopy to confirm diagnosis via an intestinal biopsy. For these tests to be accurate, peoples’ diets must contain gluten-containing foods. That’s why it’s so important that no one self diagnoses or puts themselves on strict gluten-free diets before testing.
Genetic testing is also available to rule out celiac, but it is not a diagnostic test.
Not everyone who feels sick after eating gluten has celiac disease or a wheat allergy. Some folks suffer from non-celiac gluten sensitivity (NCGS). When they eat gluten, they feel sick, when they avoid it, they feel better. People with NCGS report GI symptoms, such as abdominal pain and diarrhea, and/or non-GI symptoms, including fatigue, joint pains, headaches and brain fog. In NCGS, there is no visible damage to the small intestinal villi, but research has shown abnormal inflammatory markers and damage to the intestinal epithelial barrier.
Unlike celiac disease, there aren’t specific diagnostic tests for NCGS. I expect this will change soon, but for now, diagnosis is a process of exclusion. Rule out celiac disease and wheat allergy and then follow a gluten-free diet to see if symptoms improve.
In NCGS, there are a range of potential triggers — not just gluten. Wheat, for example, contains other proteins and carbohydrates that might activate the immune system and/or lead to symptoms. A GI registered dietitian can help someone figure out what their triggers are so that they are on the least restrictive diet.
NCGS might not be a lifelong disease, and strict adherence to a gluten-free diet is not always necessary. Most people avoid foods as needed to manage symptoms.
What are the signs and symptoms of celiac disease and how do you know when to get tested?
Signs and symptoms vary from person to person. Some people with untreated celiac disease report gastrointestinal (GI) symptoms, others present with non-GI manifestations, and others deny any noticeable symptoms. No wonder this disease can take up to 11 years to diagnose!
GI symptoms might include abdominal pain, vomiting, chronic diarrhea or constipation, bloating and gas, and/or heartburn and indigestion. There’s this common misconception that everyone with untreated celiac suffers from diarrhea, but that’s not true. Once, I worked with a gentleman whose only symptom was a cough.
Non-GI manifestations can include chronic fatigue, unintentional weight loss, headaches, joint pains, fractures, irregular menstrual cycles, irritability, infertility and itchy skin rashes. These signs and symptoms are often a result of nutrient malabsorption because of damages to the small intestinal villi.
Some people with celiac disease don’t feel any obvious symptoms after ingesting gluten. These people will still have damage to their small intestine, so it’s just as important for them to follow a strict gluten-free diet.
Are symptoms of celiac disease different in children and adults?
Signs and symptoms differ among individuals. Both kids and adults can experience digestive and non-digestive symptoms.
- Digestive symptoms (abbreviated list): Constipation, diarrhea, nausea, vomiting, bloating (swollen belly in children), gas
- Non-digestive manifestations (abbreviated list): Anemia, itchy skin rash, headaches, fatigue, weight loss
Irritability is particularly common in children. Complications unique to children with celiac-induced malabsorption include failure to thrive, weight loss, delayed growth and delayed puberty.
Is a gluten-free diet the only way to manage celiac disease?
Yes, the only proven treatment for celiac disease is to adhere to a lifelong gluten-free diet, even when someone might feel OK after eating gluten. Eliminating gluten allows the intestine to heal and prevent complications that may result from untreated celiac disease.
Are wheat-free products also gluten-free? Does gluten-free mean that a product is definitely wheat-free?
Not all “wheat-free” products are “gluten-free.” Besides wheat, gluten is in rye, barley and sometimes oats.
Wheat contains many proteins and carbohydrates. Gluten is just one of the proteins. So, “gluten-free” doesn’t automatically mean that a product is “wheat-free”. For example, some “gluten-free” products contain wheat starch, an ingredient that has been processed to remove gluten. (Caveat: Many celiac experts advise patients with celiac to avoid wheat starch).
What are some tips for dining out while following a gluten-free diet? Is cross-contamination a concern for gluten-free menu items?
Dining out with celiac disease will be different than it was pre-celiac diagnosis, but it can still be a positive, enjoyable experience.
Here are five of my favorite tips to help people with celiac enjoy a meal out:
- Before you go, scout the menu online and/or call the restaurant during non-busy times to speak with the chef or manager about gluten-free options. Ask how they prepare gluten-free dishes, and if they have a protocol in place to prevent cross-contamination.
- Be the last at the table to order. Not only will the server be more likely to remember your order, but you won’t feel you’re holding everyone else up.
- Tell your server that you have celiac disease or gluten sensitivity and must avoid gluten for medical purposes. I recommend my patients add that they’re allergic to wheat. Although a wheat allergy is not the same thing as celiac or NCGS, restaurants take allergies seriously — sometimes more so than a “sensitivity”. If your server seems unfamiliar with celiac, ask to speak with the restaurant manager or chef.
- Instead of relying on the menu, ask the server, manager, or chef to tell you what gluten-free options are available. It’s impossible for a menu to include every sauce, broth, marinade, spice blend, thickener, and garnish in a single meal. These are all potential sources of gluten. Some people prefer to order food “naked” to keep things simple.
- Find a few restaurants you really enjoy and become a regular. If you’re bringing in a lot of business, management will go the extra mile to ensure they meet your needs.
Ask as many questions as necessary and be specific. Some of my patients are reluctant to be that person, but your health is at stake.
Yes, there is a concern for cross-contamination, especially from fried foods. Research shows that gluten-free foods (e.g. French fries, corn ships) cooked in shared fryers with wheat may contain more than a safe level of gluten.
If following a gluten-free diet, what should individuals look for on the nutrition label?
A product doesn’t have to carry a gluten-free label to be gluten-free. Plenty of gluten-free products don’t. If a packaged food is not labeled “gluten-free”, scan the ingredient list for wheat, barley, rye, oats (unless labeled “gluten-free”), brewer’s yeast and malt. These ingredients contain gluten. For egg, meat and poultry products, also check for modified food starch, starch and dextrin.
As for grains and flours, I recommend sticking to ones labeled gluten-free since they’re at higher risk for cross contamination.
I encourage my patients (those with and without celiac disease!) to choose more whole foods, such as fruits, vegetables, legumes, beans, nuts and seeds, lean meats and dairy. These are good for us and naturally gluten-free.
By the way, people with celiac can ignore the statement “Manufactured in a plant that contains wheat.” This is to help people with wheat allergies, not those with celiac.
How long after begin on a gluten-free diet will symptoms of celiac disease begin to subside?
Response time varies, but most people report noticeable symptomatic improvement within a few days of a gluten-free diet. Intestinal healing takes much longer, ranging from months to years.
If someone continues to experience gastrointestinal (GI) symptoms despite following a strict gluten-free diet, they should talk to their gastroenterologist and GI dietitian. It’s possible they have an overlapping condition, such as irritable bowel syndrome (IBS), small intestinal bacterial overgrowth (SIBO) or lactose intolerance.