Food For Thought: Celiac Disease Explained
Medically reviewed by Carmen Fookes, BPharm. Last updated on March 15, 2022.
When Being Gluten-Free Is A Necessity, Not Just A Trend
Celiac disease is an inherited autoimmune disorder where the small intestine is hypersensitive to gluten, which leads to problems digesting food. Inherited means that it tends to run in families and autoimmune means that for some unknown reason gluten stimulates your own immune system to attack healthy intestinal cells.
If people with celiac disease eat any food containing gluten (found in wheat, barley or rye), their body mounts an immune response that attacks the small intestine. These attacks cause damage to the villi - these are small finger-like projections that line the small intestine that help with nutrient absorption.
Celiac disease is surprisingly common. One out of every 100 people worldwide have the disease.
Fighting Off Gluten Takes Its Toll On The Whole Body
When the immune system is activated in the presence of gluten, inflammation (redness and swelling) results. Inflammation that occurs continuously or for days on end seriously damages the lining of the small intestine, preventing the absorption of vital nutrients.
This can cause symptoms such as bloating and diarrhea. If the inflammation carries on for long periods of time, weight loss, vitamin and mineral depletion, nerve problems, and brittle bones may occur. In some people with celiac disease, weight loss may be the only initial symptom.
Risk Of Developing Other Diseases Increases With Celiac Disease
Scientists have also established that there is a definite link between untreated celiac disease and other conditions, particularly other autoimmune disorders such as type 1 diabetes, multiple sclerosis, Crohn's disease, and Sjogren's syndrome.
The longer celiac disease is left undiagnosed, the higher the risk. Children between the ages of 2 to 4 have a 10.5% risk of developing another autoimmune condition. This rises to 16.7% in those aged 4 to 12; 27% for those aged 12 to 20; and 34% in those not diagnosed till after the age of 20.
More than two and a half million Americans are thought to have undiagnosed Celiac disease and be at risk for complications such as osteoporosis, migraines, infertility, and an increased risk of miscarriage.
What's The Difference? Celiac Disease, Gluten-Sensitivity, Wheat Allergy and Gluten Intolerance
Celiac disease is an inherited autoimmune disorder that damages the small intestine.
Non-celiac gluten sensitivity occurs when the body mounts a stress response (different to an immune response) to gluten. Intestinal damage does not occur.
Wheat allergy occurs when the immune system responds to ingestion of wheat. Lasting harm is usually not seen.
Gluten intolerance is an umbrella term that describes everybody who has a sensitivity to gluten. It includes the three different groups listed above.
What Exactly Is Gluten?
Gluten is a composite name representing different proteins, namely gliadin in wheat, hordein in barley, secalin in rye. In some countries, avenin in oats is also considered a gluten protein.
Gluten acts like a glue to help food maintain its shape. It also affects the elasticity of dough, determining the chewiness of baked bread.
Anything that contains wheat, barley, rye, or triticale contains gluten. Foods usually made with gluten-containing flours include breads, cakes, cookies, gravy, pasta, sauces, pastries, and tortillas. Gluten may even be found in supplements, vitamins, and lip balms.
What About Oats: Gluten-Free or Not?
For years people have been debating about whether oats can be included in the diet of people with celiac disease.
Food standards in the U.S. and Europe consider oats to be gluten-free and safe for people with celiac disease to consume. This is in contrast to food standards in Australia and New Zealand which state that anything containing oats cannot be labeled as gluten-free.
So whose standards are right? Technically, everyones! Most people with celiac disease tolerate oats; however, 8-20% develop inflammation and small bowel damage to avenin contained in oats. In the U.S., the FDA has adopted the less than 20ppm as one criteria for allowing foods to be labelled gluten-free. However, if you want to eat a true gluten-free diet, then oats should not be part of it.
In addition, most commercially grown oats become contaminated with tiny amounts of gluten during the growing, harvesting, or processing stage.
Still Confused Over Oats?
If you are still confused about whether or not to eat oats, consider this:
- Oats are a good source of soluble fiber and can add variety to a gluten-free diet
- Studies show gluten-free oats are tolerated by most people with celiac disease
- If you are intolerant, be aware you may not have any symptoms
- The only sure way to determine if you react to oats is by having a biopsy before eating oats, and repeating it some time later.
Talk with your doctor before you include oats in your diet. If you want to eat a totally gluten-free diet, then do not eat oats at all.
How Do I Know If I Have Celiac Disease?
Common symptoms of celiac disease include:
- Digestive problems (stomach pain, bloating, gas, diarrhea, pale stools)
- Growth problems or failure to thrive in children
- Mouth ulcers
- Skin rash
- Vitamin and mineral deficiencies (including iron)
- Weight loss.
The only way to definitely know if you have celiac disease is by a blood test and follow-up biopsy.
Diagnosing Celiac Disease
If you have symptoms of celiac disease, or are the parent, child, or sibling of a person with celiac disease, you should get a screening test.
Several tests are available that look for antibodies in your blood against a specific protein. If your screening test suggests celiac disease, your physician will recommend a biopsy of your small intestine to confirm the diagnosis.
But be aware, the screening test will not work properly if you are already on a gluten-free diet. Consider undergoing a “Gluten Challenge” before testing day for best results, which could consist of 4 slices of bread daily for 1 to 3 months before the test, but talk to your doctor before doing so.
My test Came Back Negative....But I Swear I Can't Tolerate Gluten!
So you thought you may have had celiac disease and went for a test, but the results came back as negative? Your body is telling you one thing but the laboratory is saying another...how can that be possible?
You can still be intolerant to gluten but not have celiac disease. Doctors call this condition non-celiac gluten sensitivity (NCGS).
Or it could be that your diet was already mostly gluten-free before you went for the test, which can affect test results.
Gene tests are also available if the diagnosis is uncertain that test for genetic markers known as HLA DQ2 and HLA DQ8. 95% to 99% of people with celiac disease will have one or other of these markers. However, this test by itself is not enough to confirm that a person has celiac disease because 30% to 50% of the population has these markers but will never develop celiac disease.
More About Non-Celiac Gluten Sensitivity (NCGS)
NCGS is a form of gluten intolerance that causes symptoms similar to those of celiac disease but with several key differences:
- NCGS does not involve the immune system so there are no markers for it, and this is why tests for celiac disease come back negative
- NCGS is not inherited, and shows no genetic component
- NCGS does not have any connection with malabsorption, other autoimmune disorders, or cancer.
A diagnosis of NCGS can only be made after excluding celiac disease or wheat allergy. In some people this may take years.
What Is The Treatment For Celiac Disease
Currently, the only treatment for someone with celiac disease is no gluten for the rest of their life. In other words, a gluten-free diet.
This means giving up traditional breads, cereals, pasta, pizza, and beer. Good detective skills are often needed to identify hidden gluten in foods like sauces including soy sauce, some foods made with “natural flavorings,” dietary supplements, medicines and even toothpaste.
Care must be taken to avoid cross-contamination during food preparation (such as crumbs of wheat-bread from a toaster falling on gluten-free bread) since the tiniest amount can cause intestinal damage.
Gluten-Free: Get To Know Your Labels
If you need to follow a gluten-free diet it helps to become an expert in food labels.
Foods labeled as gluten-free must contain less than 20 parts per million (ppm) gluten. This level is the lowest that can be reliably detected in foods and is the criteria used by most countries.
But labeling of products as gluten-free is voluntary, so not all products which are naturally gluten-free (such as water, fruits, vegetables, and eggs) will be labeled as being gluten-free.
Where To From Here?
Help is only a click away. There are several celiac disease support organizations in the U.S. Some of these are listed below and all contain excellent in-depth information about the disease and food choices.
Celiac.com is also a good resource for research articles about celiac disease and gluten intolerance.
Following The Gluten-Free Trend... Just Because
If you don't have celiac disease but are thinking about going gluten-free, consider this:
- Most people can tolerate gluten
- Gluten-free diets are severely restrictive, and gluten-free food is expensive
- Poor-quality gluten-free products are high in sugars and fats
- Gluten-free products that contain rice flour may contain higher levels of toxic metals such as arsenic and mercury; these metals have a tendancy to accumulate in rice from fertilizers, soil and water
- Nutritional deficiencies in people avoiding gluten are common.
Perhaps the best answer is to just limit the amount of gluten you eat per day. However, if you are diagnosed with celiac disease and need a gluten-free diet, seek the advice of a dietician.
Finished: Food For Thought: Celiac Disease Explained
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- Celiac Disease: Fast Facts. 2022. BeyondCeliac.org. https://www.beyondceliac.org/celiac-disease/facts-and-figures/#:~:text=An estimated 1 in 133,of all ages and races.
- What is Celiac disease. 2022. Celiac.org. https://celiac.org/about-celiac-disease/what-is-celiac-disease/
- Coeliac New Zealand. 2022. https://coeliac.org.nz/get-diagnosed/
- No, oats are not gluten-free - here's why. Ceres organics. https://ceres.co.nz/blog/no-oats-are-not-gluten-free-heres-why/
- Celiac disease. Cleveland Clinic 2022. https://my.clevelandclinic.org/health/diseases/14240-celiac-disease
Always consult your healthcare provider to ensure the information displayed on this page applies to your personal circumstances.