What is Celiac Disease?

Medically reviewed by Mary Ahern MS, RDN, RYT June 13, 2024| Written by Zenda Nel

What is Celiac Disease?

Celiac disease is an autoimmune disease. It affects people genetically predisposed to an inability to handle undigested gluten. The enzymes that break down proteins, called proteases, are responsible for digesting gluten. However, these proteases can't digest gluten completely, so some undigested gluten lands in the small intestine. 

While most people don't have a problem with undigested gluten; it triggers a severe autoimmune response in people with celiac disease.

According to the Celiac Disease Foundation,one in a hundred people worldwide has celiac disease but only about 30% are diagnosed.

Celiac Disease is a hereditary condition that runs in families. So, if you have a close relative (parent or sibling) with the disease, you have a ten percent risk of developing the disease too.

Celiac disease is also called coeliac disease, celiac sprue, non-tropical sprue, and gluten-sensitive enteropathy.

Since gluten is at the center of celiac disease, let's find out a bit more about this much-maligned nutrient:

More About Gluten

Gluten is a protein found in wheat and some other grains including barley and rye. If you have ever made bread dough, you must have seen gluten in action – it is the stuff that makes the dough elastic so you can stretch it. 

Wheat also has other proteins besides gluten, such as albumin, gliadin, and globulin.

In large-scale production of processed foods, gluten is added to increase the protein content and improve the texture and flavor of food. Being stretchy and gluey, it binds the ingredients in processed foods, giving them a uniform shape. 

Much of the processed foods we buy, including breads and other baked goods, have high concentrations of gluten. 

Should We All Avoid Gluten?

There is an enormous push to follow a gluten-free diet even if you don't have celiac disease. Media headlines tell us that gluten causes brain fog, inflammation,bloating, weight gain, and heart disease, creating the impression that we should all avoid gluten at all costs. 

However, it's important to remember that gluten causes a problem for only a few people. For the rest of us, it is a protein source that has many health benefits, including improved metabolism. 

In addition, gluten lowers therisk of 2 diabetes,heart disease, and colon cancer

As part of a diet that includes whole grains, gluten also contributes to digestive health by acting as a prebiotic, feeding the healthy bacteria in the gut. Research has shown that a gluten-free diet can lead to serious nutrient deficiencies. 

Bottom line: if you don't have celiac disease, it may be best not to follow a gluten-free diet. 

What are the Warning Signs of Celiac Disease?

Here is what you should know about celiac disease signs and symptoms:

  • Symptoms vary widely among people
  • Some people have only vague symptoms
  • Some people are asymptomatic and have no symptoms at all
  • Scientists link more than200 symptoms to celiac disease

In people who don't experience any external signs of the disease, nutritional deficiencies may be the first sign of the disease. 

Celiac disease can appear at any age after you start eating gluten. An allergy to gluten usually appears in children between the ages of 8 and 12 months - as soon as they start eating solid food. In adults, the disease typically appears between the ages of 40 and 60. 

Celiac disease symptoms have been divided into two groups: digestive symptoms and other symptoms.

1. Digestive Symptoms 

a) Digestive Symptoms in Adults

  • Bloating
  • Gas
  • Stomach pain
  • Chronic diarrhea
  • Constipation
  • Lactose intolerance 
  • Loose, greasy, bulky, and bad-smelling stools
  • Nausea or vomiting

b) Digestive Symptoms in Children

  • Bloated stomach
  • Gas
  • Nausea and vomiting
  • Chronic diarrhea
  • Constipation
  • Pale, foul-smelling stool.

2. Other Symptoms

  • Dermatitis herpetiformis - an extremely itchy rash that results from the autoimmune reaction to gluten. The bumps and blisters usually appear on the elbows, knees, torso, scalp, or buttocks. In some cases, a gluten-free diet is enough to resolve this condition. But most cases need medicine.
  • Feeling tired
  • Joint or bone pains
  • Mental health problems like depression or anxiety 
  • Headaches
  • Nerve problems
  • Reproductive problems especially in women may include menstrual irregularities and infertility. 
  • Mouth symptoms, including canker sores, a dry mouth, a red, smooth, and shiny tongue

Celiac disease causes damage to the small intestine, which is responsible for absorbing nutrients from food. This is why people can be diagnosed with Celiac and their only symptom is a nutrient deficiency.  Children with celiac disease show symptoms related tostunted development, such as:

  • Failure to thrive, meaning an infant or a child doesn't reach expected weight milestones
  • Damage to tooth enamel
  • Delayed puberty 
  • Slowed growth and short height
  • Weight loss

Such children may also display mood changes, such as irritability or being annoyed.

How Does a Person Get Celiac Disease? 

The exact cause of celiac disease is not known. But there seems to be a strong genetic factor. After all, researchers have noticed that only people with certain genes develop celiac disease when they ingest gluten.

1. Genes

Celiac disease may involve certain variants of Human Leukocyte Antigen (HLA) genes. Almost all people with celiac disease have specific variants of the HLA-DQA1 and HLA-DQB1 genes. These genes provide instructions for making proteins and helping the immune system recognize proteins from different sources. 

In celiac disease, the immune system perceives certain proteins as foreign invaders and attacks them - even though they are harmless.  Specifically, celiac disease is an inappropriate immune response to a segment of thegluten protein called gliadin

It is this inappropriate immune response that's responsible for the signs and symptoms of celiac disease including inflammation of the small intestine.

However, the story doesn't end there. About 30% of people have these genetic mutations and yet, only 3% of us develop celiac disease. This fact has caused researchers to conclude that other factors must also be at play.

2. Gluten

Consuming a lot of gluten early in life may trigger an abnormal immune system response that leads to celiac disease. 

Research shows that not all people with genetic variants of DQ2 or DQ8 develop celiac disease. However, researchers have found that children who have a genetic predisposition for celiac disease are at greater risk of developing celiac disease if they eat a lot of gluten as young children. 

So, experts concluded that eating gluten-containing foodduring the first five years of life significantly increased the risk of celiac disease among genetically predisposed children.

So, if you, or someone in your family, has celiac disease, try to avoid giving young children in the family food that contains excessive gluten before they turn five.

3. Other factors

Research has shown that infants who have frequentInfections in the first 6 months of life have an increased risk of developing celiac disease.

Scientists are also investigating the role of the gut microbiota (microbes living in the digestive tract) in the development of celiac disease. Emerging research suggests that changes in the composition and function ofthe gut microbiota may contribute to the development of celiac disease.

Doctors have observed that celiac disease can be triggered bystressful events like viral infections, surgery, pregnancy, or emotional trauma.

All these factors are currently under investigation. 

Diagnosis

The Marsh score system serves to classify celiac disease stages. Dr. Michael Marsh developed the system in 1992, with each stage denoting the level of damage to the small intestine as seen under a microscope. Originally the Marsh Types ranged from 0 to 4, but the system has been simplified to only three stages.

Gastroenterologists useMarsh scores to determine the damage to the small intestinal lining caused by the disease to diagnose celiac disease. An individual's Marsh score is established by pathologists after an intestinal biopsy. 

According to the Celiac Association, a biopsy is the only way to confirm a celiac disease diagnosis.

The Stages of the Marsh Classification system

Stage 0 – a Healthy Small Intestine

The mucous membrane lines the small intestine called mucosa. This membrane is scrunched up in innumerable folds with projections called villi. Unfolded, the mucosa is the size of a tennis court. 

In a healthy person, the villi stand out, creating a vast area for the absorption of nutrients. In a person with celiac disease, the villi become shorter and later flatten, decreasing the area for the absorption of nutrients.

Stage 1

In stage 1 of the Marsh score, the surface cells of the intestine contain too many immune cells called lymphocytes. This is an indication of inflammation and possible damage to the intestinal lining.

A healthy intestine usually has fewer than 30 lymphocytes for every 100 surface cells, but in stage 1, there are more than 30. If you have stage 1, your medical report would read something like "increased intraepithelial lymphocytes."

Stage 2

In stage 2, there are increased numbers of lymphocytes, and the spaces (depressions) between the villi, are larger than they should be. These spaces are called "crypts."

When the crypts are bigger than usual, they're called "hyperplastic." If your biopsy report mentions "hyperplastic crypts" or "crypt hyperplasia," it means the spaces in your intestine are larger than they should be.

Stage 2 is rare and is mostly seen in people who have a skin condition called dermatitis herpetiformis. 

Stage 3

In stage 3, the changes of stage 2 are present but more pronounced. There are more lymphocytes than normal and abnormally large depressions. In addition, the intestinal villi are shrinking and flattening - a condition known as villous atrophy.

The doctor will diagnose celiac disease only when the intestinal lining Marsh Score reaches stage 3. 

Can celiac disease be cured?

No, you can't cure celiac disease. It is a chronic autoimmune disease which means that a person has it for life.

But it is eating gluten that damages the small intestine. So if you stop eating gluten, your body gets a chance to recover. While you stay on a gluten-free diet, your symptoms should improve in a few days or weeks, and yoursmall intestine should heal completely in 3 to 6 months.

However, this is easier said than done because so much of our food today contains gluten. It’s also in the food that one wouldn't expect to contain gluten, like condiments, candy, chips, and deli meats.

Is Celiac Disease Life-Threatening? 

Celiac disease is not life-threatening but it can cause severe health issues if left untreated.

The damage caused to the villi as a result of the autoimmune reaction to gluten inevitably leads to malnutrition if the condition remains undiagnosed and the person continues to eat gluten. When nutrients are not absorbed from food, the body cannot function properly and cannot be healthy.

Without a timely diagnosis and proper treatment, celiac disease can lead to the development of other autoimmune disorders, such as type 1 diabetes and multiple sclerosis (MS). Untreated, the disease could also lead to osteoporosis, thyroid disease, anemia, infertility and miscarriage, epilepsy, heart disease, and intestinal cancers.

Treatments

The only treatment for celiac disease is a lifelong gluten-free diet. This means avoiding all food and drinks containing wheat, rye, and barley. Even ingesting tiny amounts of gluten, like crumbs left on a plate, is enough to cause damage to the small intestine.

Regular check-ups

Regular follow-up check-ups are crucial to prevent deficiencies or complications and assess adherence to a gluten-free diet. Immediately after diagnosis, a check-up every 3-4 months and 1 year after the diagnosis is recommended. After that, a celiac patient should go for a check-up at least once a year.

In addition to a clinical examination, laboratory tests to assess nutrient absorption are necessary. Biopsy check-ups may also be necessary for patients with persistent symptoms despite following the correct diet. The biopsy will reveal the mucosal condition. At this time, the doctor will also review the patient's diet.

Can lifestyle changes prevent celiac disease?

Nothing can prevent celiac disease. It is a hereditary autoimmune condition that a person is born with. All you can do is ease any symptoms and avoid damage to the small intestine by avoiding gluten at all costs.

What to Eat for Celiac Disease?

1. Fiber

Whole grains like wheat, barley, rye, and many products that contain gluten are high in fiber. On the other hand, gluten-free foods tend to have less fiber. 

Fiber plays an integral role in general health. It supports the immune system, helps with weight control, boosts bowel health, controls blood sugar levels, lowers cholesterol levels, and protects against heart disease. 

So, it’s essential to get enough dietary fiber from food such as beans, lentils, nuts, seeds, and gluten-free whole grains. Another good idea is to use fiber powders to meet daily fiber needs. 

2. Gluten-free grains that are high in fiber

Fortunately, people with celiac disease are not at the mercy of three or four grains that contain gluten. Many more grains are gluten-free and high in fiber. Here is a list.

  • Sorghum
  • Buckwheat
  • Amaranth
  • Arrowroot
  • Corn 
  • Millet
  • Quinoa
  • Unpolished rice
  • Gluten-free flours — rice, soy, corn, potato and bean flours
  • Hominy (corn)
  • Rice, including wild rice
  • Teff

In addition, flour can be made from coconut, almonds, flaxseed, chickpeas, brown rice, sunflower seeds, and chickpeas (chana flour).

3. Legumes, Nuts, and Seeds

Legumes, nuts, and seeds are fiber-rich, gluten-free sources of protein. 

Legumes include butter beans, black beans, lentils, chickpeas, navy beans, and black-eye beans. 

Seeds include flax seeds, chia seeds, sunflower seeds, pumpkin seeds, and sesame seeds.

Nuts include almonds, Brazil nuts, cashew, pecan, pistachio, walnuts, hazelnuts, and pine nuts. 

4. Fruit and Berries

Fruit and berries are all fiber-rich and gluten-free sources of vitamins and minerals.  Pears, strawberries, raspberries, apples, bananas, oranges, avocados, and pineapples are particularly high in fiber. That said, all fruits are allowed on a gluten-free diet.

5. Vegetables

All vegetables are gluten-free, most are high in fiber, and all provide minerals and vitamins necessary for general health. 

6. Protein

Eggs, lean and non-processed meats, fish, poultry, and low-fat dairy products, including cheese and yogurt are naturally gluten-free and a welcome addition to a gluten-free diet. 

What Foods to Avoid for Celiac Disease?

If you think about it, a gluten-free diet should be easy to follow as you only have to avoid three grains i.e. wheat, rye, barley, and their products. Not so fast! 

First, wheat is sold under various names, and ancient grains reintroduced into the modern diet create the impression that there is a whole new range of grains for celiac sufferers to choose from.

Let's scratch a bit deeper and separate the chaff from the wheat. 

1. Wheat

a. Ancient grains

Ancient grains, such as Emmer, Farro, Spelt, Khorasan wheat (KAMUT®), and Einkorn are all forms of wheat or closely related to wheat. They all contain gluten and should be avoided by people with celiac disease.

b. Wheat under different names

When you read food labels to avoid wheat, it's not enough to avoid the term 'wheat'. You also have to look out for the following terms that denote different forms of wheat that contain gluten:

Semolina – a coarse flour made from durum wheat used to make pasta, couscous, some breads, and desserts like puddings and cakes.

Farina – finely ground flour made from wheat, used to thicken soups and sauces.

Graham – a type of whole wheat flour used for making graham crackers and certain types of bread.

Wheatberries – whole wheat kernels used as a whole grain in salads, soups, pilafs, and baked goods.

Durum – a wheat variety high in protein and with a hard texture, used to make semolina flour for use in pasta, couscous, and certain breads. 

Products that may contain wheat include::

  • Breads 
  • Baked goods
  • Soups 
  • Pasta 
  • Cereals 
  • Sauces 
  • Salad dressings
  • Cookies and crackers
  • Croutons

2. Rye

Research shows that rye is much lower in gluten than wheat. Specifically, rye contains a gluten protein called Secalin and should be avoided by people with celiac disease.

Rye is typically used in rye bread, bread rolls, pretzels, pumpernickel, rye beer, and rye cereals.

3. Barley

Barley and products made with barley or an ingredient derived from barley are not gluten-free. For instance, barley malt and barley malt extract are not gluten-free.

Malted barley is a common ingredient in brewing beer, malt vinegar, malted milkshakes, and certain baked goods. It is used in various food and beverage products to add flavor, color, and texture. 

Barley can be found in food coloring, soups, and Brewer’s Yeast.

4. Oats

The grain has been a bit of a conundrum for those with celiac disease. While oats containno gluten, the grain could get contaminated with gluten-containing grains on large-scale commercial farms where more than one grain is produced.

So, ensure that the oats you eat are pure and uncontaminated if you have celiac disease.

Gluten-free, oats are in many gluten-free products, including granola bars, granola, cookies, and other baked goods, veggie burgers, and cereals. 

Researchers concluded from several study results that most individuals with celiac disease cantolerate moderate amounts of pure oats - (20–25 g/day dry rolled oats for children and 50–70 g/day for adults. 

5. Triticale

Triticale is a hybrid of wheat and rye. It was first bred in the late19th century in Scotland and Germany. It contains gluten and should be avoided by people with celiac disease. 

Triticale is used to make biscuits, rye-type crispbreads, cakes, and muffins. 

Read food labels carefully – you may see triticale as part of a list of whole grain ingredients used in a product and be tempted to buy it because it appears healthy. However, celiac sufferers should avoid it.

FAQs

Is Celiac Disease Serious?

If not treated, Celiac disease can seriously damage the small intestine. This may cause several health concerns like other autoimmune diseases, such as type 1 diabetes and multiple sclerosis.

Can people with celiac live long?

Yes, they can, provided they take care of their health by following a gluten-free diet.

Can people with celiac disease eat rice?

Yes, rice is a gluten-free grain.

Conclusion

Celiac disease is a hereditary autoimmune condition. People with celiac disease can't handle undigested gluten, which is a type of protein. The body's autoimmune response causes many unpleasant symptoms, but the real issue is the damage done to the small intestine, which is responsible for absorbing nutrients from food. 

Long-term celiac disease that goes undiagnosed can lead to malnutrition. That's why it is so important to have children tested when they show any signs of not being able to handle gluten.

The only treatment for celiac disease is a lifelong avoidance of all food that contains gluten.