Brief overview
- Symptoms: varied; gluten ingestion can cause diarrhea, constipation, bloating, fatigue, muscle and joint pain, and/or skin changes, among other symptoms
- Forms: Classic celiac disease, Symptomatic celiac disease, Subclinical celiac disease, Potential celiac disease, Refractory celiac disease
- Treatment: Lifelong strict gluten-free diet, compensation of deficiencies, rarely with medication
- Cause and risk factors: Hereditary and external factors, triggers: Ingestion of gluten and misdirected immune response, various diseases such as Down syndrome, type 1 diabetes.
- Course and prognosis: Not curable, but no or hardly any symptoms if gluten is avoided. If left untreated, complications such as anemia, lactose intolerance or cancer of the gastrointestinal tract may occur.
What is celiac disease / gluten intolerance?
Celiac disease is a multi-organ disease that is immunologically caused – i.e. affects the immune system. In this case, the immune system reacts hypersensitively to gluten – a component of grain. This is why celiac disease is often colloquially called gluten intolerance. Medical names are “gluten-sensitive enteropathy” and “indigenous sprue” (old name for celiac disease in adults).
The destruction of the intestinal villi in celiac disease thus causes severe deficiency symptoms because less surface area is available for nutrient absorption. In addition, the disease can also cause symptoms in other organs.
Not an allergy, but an autoimmune disease
In the case of gluten intolerance, the immune system – triggered by gluten – forms antibodies against an enzyme of the small intestinal mucosa (tissue transglutaminase, which processes gluten) as well as against the endomysium (connective tissue layer of the intestinal wall).
How common is celiac disease?
Celiac disease is a relatively common condition. In general, experts assume that about one percent of the world’s population suffers from gluten intolerance. However, a high number of unreported cases is suspected, because the disease often causes no or only minor symptoms and therefore often goes unnoticed.
What are the symptoms?
People with celiac disease (gluten intolerance) can develop symptoms of various kinds as a result of eating gluten. This is why the disease is considered the “chameleon of gastroenterology.”
Celiac disease symptoms in the digestive tract
Symptoms in the digestive tract that may be due to celiac disease (gluten intolerance) include:
- chronic diarrhea
- chronic constipation
- vomiting with or without nausea
- feeling of fullness after eating
- flatulence
- chronic abdominal discomfort / pain
- chronically recurring aphthae in the mouth
Other celiac disease symptoms
Possible gluten intolerance symptoms outside the gut include:
- chronic fatigue / tiredness
- Failure to thrive
- short stature or reduced growth rate
- delayed puberty (pubertas tarda)
- muscle weakness
- muscle and/or joint pain
- disturbance of movement coordination (ataxia)
- performance kink
- Night blindness
- Headaches
Nutrient deficiency with far-reaching consequences
Celiac disease symptoms such as failure to thrive and growth disorders are due to the fact that the damaged mucous membrane of the small intestine makes it more difficult for nutrients to be absorbed. This often results in deficiencies such as protein and iron deficiency. Thus, celiac disease can lead to failure to thrive and growth disorders, especially in children.
Weight gain can often be observed in patients with celiac disease when the mucous membrane recovers as a result of strict abstinence from gluten – in other words, bowel movements normalize and nutrient absorption improves.
Forms of celiac disease
Depending on the exact symptoms of celiac disease, five forms of the disease can be distinguished:
- chronic diarrhea
- voluminous, sometimes greasy and foul-smelling stools
- water retention (edema) in the tissues due to protein deficiency
- failure to thrive
Symptoms such as distended abdomen, delayed growth, muscle atrophy (muscle hypotrophy) and anemia due to iron deficiency may also occur. Behavioral changes are also possible. Children with classic celiac disease sometimes become remarkably whiny, sullen or apathetic.
Symptomatic celiac disease: This form of the disease is characterized by non-specific gastrointestinal symptoms of varying severity, for example chronic constipation or changing bowel habits, flatulence, abdominal pain and/or chronic upper abdominal discomfort (dyspepsia). Some sufferers also experience symptoms such as sleep problems, fatigue, reduced performance or depression. A nutrient deficiency (such as iron or vitamin deficiency) may be added.
When people with subclinical celiac disease eliminate gluten-containing foods from their diet, this often has no positive effects. However, it may also be the case that, for example, the ability to perform or concentrate improves.
Some people only temporarily show celiac antibodies in their blood – after months or years, the test can be negative.
Refractory celiac disease: In this form of the disease, signs of impaired nutrient absorption continue to appear – despite a strict gluten-free diet for 12 months – usually with severe intestinal symptoms and persistent destruction of the intestinal villi. This form of celiac disease practically does not occur at all in children, but only in older age groups.
Many affected people wonder whether celiac disease can be cured. If a person suffers from celiac disease, the illness accompanies him or her throughout his or her life. So far, there is no curative therapy. If a person affected wants to alleviate his or her symptoms and reduce the risk of secondary diseases, then it is necessary for him or her to eat a gluten-free diet on a permanent basis. For this reason, lifelong gluten-free nutritional therapy is the top priority in celiac disease.
As part of celiac disease treatment, doctors also compensate for any deficiencies that may exist until the affected intestine has normalized.
In most cases, the doctor refers those affected to counseling centers that provide support in nutrition therapy. It is also important that partners or people living in the same household who eat a gluten-containing diet are educated about celiac disease.
What to look for in the diet?
The following tips offer guidance on which grains and foods are best to avoid if you are gluten intolerant and which are safe for you:
Strictly avoid: Grains containing gluten
Many sufferers want to know what not to eat if they are gluten intolerant. It is strongly recommended to completely and permanently avoid the following gluten-containing cereals as well as products in case of gluten intolerance:
- Wheat
- Rye
- Barley
- Spelt
- Triticale
- Tritordeum
- Urkorn
- Einkorn
- Emmer Kamut
- Oats (does not cause complaints in all affected persons)
Foods containing gluten
For people with celiac disease, it is therefore necessary to know which ingredients contain gluten. A food is considered gluten-free if it contains no more than 20 ppm (20 milligrams per kilogram of product) of gluten. There is a special symbol used to identify gluten-free foods: a crossed-out ear of grain.
Gluten is almost always present in the following foods. It is advisable to avoid these as a celiac patient as well.
- Bread and other baked goods
- pasta
- Pizza
- Cookies
- Breaded meat
- Malt coffee
- Soy sauce (but: there is gluten-free soy sauce)
One drink that doesn’t immediately bring gluten to mind is beer. But beer is also not suitable in case of gluten intolerance.
Gluten-free cereals
Fortunately, there are some grains that do not contain gluten and are therefore safe for people with gluten intolerance. Gluten-free cereals include:
- Rice
- Corn
- Millet
- Buckwheat
- Amaranth
- Quinoa
- Wild rice
- Teff (Dwarf Millet)
Gluten-free foods
The following foods do not naturally contain gluten. Their intake is therefore safe (provided they do not contain gluten-containing additives):
- All fruits and vegetables
- Potatoes
- Meat, poultry, fish, seafood
- Legumes such as soy
- Eggs, milk, dairy products, butter, margarine
- Jams, honey
- Sugar, salt, herbs
- Nuts and oils
- Water and juices
- Wine and sparkling wine
- Coffee and tea
How to treat deficiency symptoms?
In terms of vitamins, there is often a lack of vitamin A, vitamin B6 and B12, folic acid and vitamin K. In addition, the body often absorbs the trace elements iron, magnesium and calcium insufficiently in celiac disease.
If deficiency symptoms occur, an artificial supply of the missing vitamins and trace elements is necessary. In milder cases, this is possible in the form of tablets or capsules. Sometimes, however, an infusion via the vein or at least an injection into the muscle is necessary, since the inflamed intestine probably absorbs the missing substances only insufficiently.
What does celiac disease treatment in babies look like?
In their recommendations (guidelines) for the treatment of celiac disease, experts advocate feeding gluten-containing complementary foods to infants from the age of five months. Children of celiac disease sufferers have a higher risk of also developing the disease. However, feeding gluten from the fifth month of life onwards appears to reduce the risk of disease and have a preventive effect.
The non-treatable celiac disease
The so-called refractory celiac disease, i.e. an untreatable form of celiac disease, is a very rare form of progression. It occurs in up to 1.5 percent of celiac disease sufferers. In refractory celiac disease, the typical signs of gluten intolerance are detectable in the blood and in a small intestine sample.
How does celiac disease develop?
The mechanisms that take place in the body during celiac disease have already been relatively well researched. Nevertheless, the cause of the development of celiac disease or gluten intolerance has not yet been clarified.
Hereditary factors
Hereditary factors play a significant role in celiac disease. The majority of people with celiac disease have a specific surface protein on their immune cells. This protein binds fragments of gluten and is involved in the inflammatory immune response. Celiac disease is sometimes relevant in inheritance to offspring. Since it is hereditary, children of affected individuals have a higher risk of developing celiac disease.
Doctors suspect that other autoimmune diseases such as a form of diabetes mellitus type 1 or autoimmune thyroiditis are also linked to this surface protein. However, many healthy people also possess this surface protein. Therefore, it appears that environmental factors also have an influence on the development of the disease.
Diet and environment
From the fifth month of life, however, small amounts of gluten even have a preventive effect. Infections with intestinal viruses or a change in the bacterial intestinal flora may also be risk factors. In addition, it is assumed that psychosocial factors such as stress contribute to the development of celiac disease.
Connection with other diseases
Celiac disease occurs clustered together with other diseases, these are:
- Turner syndrome
- Down syndrome
- IgA deficiency
- type 1 diabetes
It is still unclear why celiac disease occurs more frequently in these diseases.
How is celiac disease diagnosed?
The right contact person for suspected gluten intolerance is a specialist in internal medicine who specializes in diseases of the digestive tract (gastroenterologist). Your family doctor will usually refer you to this specialist if you suspect celiac disease. The gastroenterologist will then determine whether gluten intolerance is present.
Celiac disease: medical history and physical examination
First, the doctor will ask about your current symptoms and any previous illnesses (medical history). For this purpose, he will ask you the following questions, for example, if he suspects celiac disease or after a positive celiac disease self-test:
- Do you often suffer from diarrhea or abdominal pain lately?
- Have you lost weight unintentionally in recent weeks and months?
- Have you noticed any abnormalities in the skin?
- Does a family member have a gluten intolerance?
- Have you ever been to the doctor for a celiac disease test or have you performed a self-test?
Since the intestine can only be assessed from the outside to a limited extent, further examinations are usually necessary for a diagnosis of celiac disease. Ultrasound examination reveals only a few typical signs of gluten intolerance.
Laboratory tests
In the further course of the examinations, the physician draws blood. A celiac disease test determines various antibodies in the blood serum that are typical for gluten intolerance.
When to perform the celiac disease test and how it works exactly, you can read in the article Celiac Disease Test. There is also a self-test to detect gluten intolerance. However, this is not particularly reliable. Therefore, it is strongly advisable that you do not only rely on the result of the self-test, but always consult a doctor.
Tissue sample
An exception to confirming the diagnosis by a tissue sample is children or persons under 18 years of age. In these cases, doctors do not perform a tissue sample if this is not desired after a consultation. Instead, a second blood sample with correspondingly very high antibody values and certain genetic laboratory values is then usually necessary.
Symptom improvement under a gluten-free diet
Genetic test
In principle, genetic testing for certain risk genes is not necessary to make the diagnosis. Exceptions are certain groups of people with an increased risk:
- Children or siblings of celiac disease sufferers
- Children with certain diseases (Down syndrome, Ulrich-Turner syndrome, Williams-Beuren syndrome)
- People with unclear tissue samples and laboratory tests
- People who have been on a gluten-free diet for months due to medical conditions
Many doctors issue a celiac disease passport to those affected once the diagnosis has been established. The advantage of such a document is that all medical findings are listed here. The results of the control examinations and information on the course of the disease can also be found here. This is useful, for example, if you change doctors.
Is celiac disease curable?
If, however, the person affected thoroughly explores the possibilities of a gluten-free diet, a varied diet is possible.
In principle, appropriately treated celiac disease does not affect life expectancy. It is possible that complications may occur.
Possible complications
In addition, serious deficiencies of vitamins, trace elements and other nutrients sometimes result from the inflammation in the intestine. Other digestive disorders, such as lactose intolerance, also sometimes occur.
All these consequences of the disease usually do not occur in people who know about their celiac disease and protect themselves with a gluten-free diet.
Celiac crisis
In very rare cases, a so-called celiac crisis occurs, which is potentially life-threatening. It is characterized by:
- Very severe diarrhea
- Pronounced deficiencies of important nutrients
- Disturbances of the water balance
- Dehydration
By immediately stopping the intake of gluten, balancing the deficiencies and the body’s water balance, doctors are able to stabilize the condition of those affected.
In some cases, it is possible to receive a degree of disability (GdB) for the disease celiac disease. If necessary, talk to your doctor about this. As a rule, this requires an application to the responsible office, where the GdB is determined according to the available findings and the legal requirements.
Can celiac disease be prevented?
When feeding infants, care should be taken not to give them food containing gluten too early (before the age of five months) and to breastfeed them if possible. In studies, this led to a significantly lower risk of developing celiac disease.
