The most serious reason to request "gluten-free" food.
By Jenny Ewen, BA, NREMT
There has been a trend towards gluten-free food options over the last decade, but while some people avoid gluten simply for a healthier diet or weight loss, others have to avoid it to the degree that even a crumb of regular bread from a toaster can lead to uncomfortable symptoms.
Celiac disease is an autoimmune disease that can occur at any age when someone is eating a diet that includes gluten. Gluten is a protein found in wheat, barley, and rye, and is used as an ingredient even in skincare items like lip balm and vitamins. Celiac disease has no cure except avoiding what triggers the symptoms: gluten.
Celiac disease is not the same as gluten sensitivity or gluten intolerance. The difference is that while gluten causes some symptoms like stomach pain or fatigue for those with gluten sensitivity, people with celiac disease actually get damage to their small intestine from consuming gluten. The body has an immune response to gluten and causes damage to the lining of the small intestine (specifically damage to the villi, small projections in the lining that absorb vitamins and nutrients from food), preventing it from working properly and absorbing certain nutrients.
This damage to the small intestine causes a variety of symptoms, and when left untreated (by continuing to eat gluten), the patient can end up with serious health issues. For children, if celiac disease is left untreated the malabsorption also affects growth and development.
Celiac disease is considered genetic, since having a first-degree relative, such as a parent, with the disease means a 1 in 10 chance of developing it. It’s estimated that two and a half million people in the USA have celiac disease, but are currently undiagnosed. It’s more common in Caucasians, and diagnosed most often in females.
Signs and Symptoms
The signs and symptoms of celiac disease are different with every patient - there are about 200 symptoms, and the presentation of the disease is not the same from patient to patient. Some patients may not have any symptoms at all, but still be diagnosed based on a blood test or intestinal biopsy.
Celiac disease can be triggered as an adult from certain health issues, like surgery, pregnancy and childbirth, a bacterial or viral infection, or a traumatic event that causes mental stress.
Generally, some physical signs and symptoms of celiac disease include:
- Weight loss
- Abdominal pain
- Bloating and gas
- Diarrhea or constipation
- Nausea and vomiting
Celiac disease that is undiagnosed can also result in mental health issues, even in children. Undiagnosed celiac disease can lead to irritability, depression, and anxiety. For children, the neurological issues can cause ADHD, headaches, learning disabilities, and problems with muscle coordination.
Since the immune reaction from celiac disease can cause the body to attack the healthy cells, the reaction can cause symptoms outside of digestive issues including problems with bones (weak or brittle bones), joints (pain), nervous system (numbness and tingling in the extremities), skin (canker sores or dry mouth or dermatitis herpetiformis, which is areas of small blisters that cause intense itching), and spleen (reduced function).
The symptoms vary so much depending on a lot of factors - children have more of the digestive symptoms, while adults have more of the complications from the immune system attacking the rest of the body. It can also vary based on how much gluten is in the person’s diet, how old they were when they started eating gluten, and the amount of damage that’s already occurred in the small intestine.
Not maintaining a gluten free diet after being diagnosed with celiac disease leads to complications such as cancer, nervous system problems, lactose intolerance, infertility, weakening of the bones, and malnutrition. This includes even people who think they are eating gluten free, but their sources of food have been contaminated with gluten (such as in a restaurant kitchen).
Refractory celiac disease is a rare occurrence when the damaged intestinal lining doesn’t improve from a strict gluten free diet. This requires further testing to figure out what’s happening in the body.
A visit to the doctor is important for digestive symptoms that persist, and the doctor will have to rule out other digestive diseases such as irritable bowel syndrome or lactose intolerance. There are specific tests that can identify celiac disease: blood tests, genetic tests, intestinal biopsy from a upper GI endoscopy, or a skin biopsy if the patient has dermatitis herpetiformis.
Blood tests will show antibodies that are common in celiac disease; however, if the patient has already stopped eating gluten before the test, it may be negative. Genetic tests will show certain gene changes or variants; however, this alone will not diagnose celiac disease.
If a blood test shows the possibility of celiac disease, or if it doesn’t but the doctor wants to perform another test, an upper GI endoscopy will be performed, and a small piece of tissue will be taken out to be examined. A long tube with a camera is inserted down the throat and allows the doctor to view the small intestine, and the biopsy will check for damage to the villi. A capsule endoscopy uses a tiny wireless camera inside a capsule, which the patient swallows and the camera takes pictures all the way down that can be viewed by the doctor.
The only treatment for celiac disease is strict adherence to a lifelong gluten-free diet. Symptoms improve for those who follow a gluten-free diet, so a doctor may recommend a visit with a dietician to help plan out the diet.
The gluten-free diet helps heal the damage in the small intestine, so symptoms can start improving within days of starting the gluten-free diet. Complete healing of the intestine may take years for adults, but as little as a few months for children. The damaged villi will regrow and absorb nutrients normally again as long as no gluten is introduced.
Gluten is found in many products, including toothpaste, skin/hair products, and vitamins, beyond all the foods that include gluten. It is also present in food additives, which won’t be labeled as gluten so it’s easy to miss them. Foods labeled as “gluten-free” must contain low enough levels of gluten to not cause problems for those with celiac disease, per FDA laws.
People with celiac disease are able to successfully ease their symptoms and intestinal damage by keeping to a completely gluten-free diet.
Sources and More Information
Celiac Disease Foundation, “About Celiac Disease - What is Celiac Disease?” https://celiac.org/about-celiac-disease/what-is-celiac-disease/
- “Symptoms of Celiac Disease” https://celiac.org/about-celiac-disease/symptoms-of-celiac-disease/
Mayo Clinic, “Celiac disease” https://www.mayoclinic.org/diseases-conditions/celiac-disease/symptoms-causes/syc-20352220
National Institute of Diabetes and Digestive and Kidney Diseases, “Celiac Disease” https://www.niddk.nih.gov/health-information/digestive-diseases/celiac-disease/definition-facts
- “Dermatitis Herpetiformis” https://www.niddk.nih.gov/health-information/digestive-diseases/dermatitis-herpetiformis