Celiac FAQs

What is gluten?

Gluten is a protein found in certain grains, particularly wheat, barley, and rye. It gives elasticity to dough, helping it to rise and keep its shape. While foods that contain gluten are often delicious, they can cause problems for some people. The 3 big categories of problems caused by wheat include wheat allergy, celiac disease and non-celiac gluten sensitivity.

What is wheat allergy?

Wheat allergy occurs when a person’s immune system recognizes proteins in wheat as foreign and mounts an allergic response. This usually leads to mild problems such as watery eyes, a stuffy or runny nose, and mouth/throat itching. Less often people can develop more serious reactions such as tongue or throat swelling, hives, a racing heart, or wheezing/shortness of breath. This is called “anaphylaxis” and it can be very dangerous. Though wheat allergy is one of the most common food allergies, particularly in children, it is still considered rare.

What is celiac disease?

Celiac disease is an inherited disease in which eating foods containing gluten leads to inflammation and damage of the lining of the small intestine. This damage impairs the function of the intestines, leading to problems such as belly pain/cramping, bloating, gas, diarrhea, and weight loss. In celiac disease you can also have symptoms outside of the GI tract as well, such as bone problems like osteoporosis, iron deficiency, infertility, chronic fatigue, and depression.

What is gluten sensitivity?

Gluten sensitivity is a disorder in which gluten causes symptoms in certain people who have tested negative for wheat allergy and celiac disease. Persons with gluten sensitivity can experience gut symptoms such as belly pain/discomfort, bloating, gas, diarrhea, or even constipation. They can also suffer from problems unrelated to the gut such as fatigue, “brain fog,” joint pain or skin rash. These symptoms typically improve when a person goes on a gluten free diet. It is unclear how often gluten sensitivity occurs in the general population, but it is likely much more common than wheat allergy or celiac disease. The cause of gluten sensitivity is currently unknown. Diagnosing gluten sensitivity is based upon the identification of symptoms which occur after eating foods with gluten and getting better on a gluten free diet – there is no reliable blood or tissue test to make this diagnosis. Gluten sensitivity does NOT cause damage to the intestine the way that celiac disease does.

How common is celiac disease?

Celiac disease affects around 1% of the population, but unfortunately the majority of these people are not diagnosed. People who have family members with celiac disease and people who have other autoimmune diseases (such as type 1 diabetes, rheumatoid arthritis, autoimmune thyroid disease, etc.) are at higher risk for developing celiac disease.

Is celiac disease inherited?  

You need to have certain genes to develop celiac disease. However, those genes are common (they are found in about 30% of the population), so not everyone who has these genes goes on to develop celiac disease. This means that there are likely other factors contributing to the development of celiac disease (possibly environmental). If you have a first degree relative (parent, child, or sibling) with celiac disease your risk of developing it is around 10%. If you have an identical twin with celiac disease your risk of developing it is around 75%.

Can celiac disease happen at any age?

Yes, but we don’t understand why some people develop celiac disease as children while others develop it much later in life.

What are the symptoms/signs of celiac disease?

There is a wide range of symptoms and signs that patients with celiac disease experience. Some of the more common ones include diarrhea, bloating, abdominal pain, weight loss, growth issues in children, and anemia. Others include constipation, early onset bone disease, infertility, amenorrhea, fatigue, vitamin deficiencies, neuropathy, dermatitis herpetiformis (a type of rash associated with celiac disease), and many others.

How is celiac disease diagnosed?

Blood tests are usually sent to check for specific celiac disease antibodies (antibodies to tissue transglutaminase and deamidated gliadin peptide). This is followed by an upper endoscopy with biopsy of the small intestine to confirm the diagnosis. Sometimes even if your blood test is negative, upper endoscopy is recommended since a small percentage of people can have negative blood testing even though they actually have celiac disease. It is important that you continue to ingest gluten while you are being tested for celiac disease so that the results are as accurate as possible.

What is the treatment for celiac disease?

A strict and life-long gluten free diet. Ingesting even a small amount of gluten can lead to intestinal damage.

How do I know what is safe for me to eat?

A consultation with an experienced dietitian specialized in gastrointestinal disorders is recommended to go over the gluten free diet in detail. Gluten can hide in many things and an expert dietitian can help you identify potential culprits.

How does this diagnosis affect my family members?

In addition to providing support for you while you change your approach to eating, we recommend that all first degree relatives (parents, siblings, children) of patients with celiac disease be tested for celiac disease, even if they have no symptoms. Additionally, second degree relatives with symptoms (diarrhea, abdominal pain, etc.) should also be tested.

How long will it take until I start to feel better once I am on the gluten free diet?

Usually symptoms will start to improve in a few weeks on a gluten free diet, although it can take upwards of a year for intestinal damage and blood tests to improve. Depending on your age, certain issues such as growth problems may not improve.