Coeliac disease: living with gluten intolerance

Coeliac disease: what is it?

Wheat rolls, light-coloured slices of toast or a croissant - not everyone can enjoy these foods. People who suffer from the autoimmune disease coeliac disease (also known medically as gluten-sensitive enteropathy or sprue) cannot tolerate them at all. The reason for this is the gluten it contains. Gluten is a natural protein (also known as gluten protein) that is mainly found in wheat, rye, spelt and barley, but is also found in many other foods. 

In people with coeliac disease, gluten causes inflammation and damage to the lining of the small intestine. There is also a deficiency of certain nutrients, vitamins and minerals.  

But it is not only the digestive tract that suffers when people with coeliac disease consume gluten. The disease can also cause symptoms in other areas of the body - for example in the teeth. This is why coeliac disease is also referred to as a systemic disease. However, it is important to know that coeliac disease can also occur without symptoms - especially in children. This often makes diagnosis more difficult or delays it for years.

The good news is that if affected people follow a strictly gluten-free diet, the damage to the small intestine will regress and they can lead a symptom-free life. 

Frequency: How many people are affected by coeliac disease?

Around one in 200 to 300 people in Germany is affected by coeliac disease. However, it can be assumed that the number of unreported cases is probably quite high. This is due to the fact that only 10 to 20 per cent of sufferers show the classic full-blown symptoms of coeliac disease. Between 80 and 90 per cent have few, no or atypical symptoms and are therefore unaware of their illness. 

Is coeliac disease a disability?

People who are diagnosed with coeliac disease can apply for a severe disability. The responsible pension office will then determine the degree of disability. This requires medical documentation, which is forwarded to the so-called medical service. The medical service then decides whether a categorisation can be made or whether further medical examinations are necessary first. 

If everything goes according to plan and coeliac disease is recognised as a disability, patients receive a notification with the degree of their disability.A degree of disability of
20is recognised for coeliac disease. From a degree of 50, a disability is recognised as a severe disability. 

Are you wondering what a degree of disability for coeliac disease could bring you? For example, a "subsidy" from the state; a tax disadvantage compensation, also known as a disability allowance. 

Causes: Why does gluten intolerance occur?

Heredity plays a major role in coeliac disease. If first-degree relatives suffer from the disease, there is a tenfold increased risk of developing it themselves. Why a person develops coeliac disease, however, has not been clearly researched. It is assumed that the exact triggers will also differ from patient to patient. Research assumes that other factors are involved in addition to genetic predisposition. It has not yet been fully clarified, for example, whether nutrition in infancy plays a role in the development of the disease. However, there are indications that babies who are breastfed up to six months have a lower risk of developing coeliac disease.

People with other autoimmune diseases also have a tendency to develop coeliac disease more frequently - this applies in particular to type 1 diabetes mellitus and autoimmune thyroid diseases (Hashimoto's thyroiditis and Graves' disease). The same applies to people with certain chromosomal abnormalities such as Down syndrome (trisomy 21), Turner syndrome and Williams-Beuren syndrome. 

Coeliac disease and gluten: Understanding the connections

In order to understand coeliac disease properly, we would now like to explain what gluten actually is and why some people are so sensitive to it that they develop severe symptoms.

It is important to know that gluten is actually just a generic term for a protein complex. It describes a mixture of two groups of plant proteins that are found in practically all types of grain. One group consists of so-called prolamins, the other of glutelins. The glutelins are harmless - the prolamins cause problems. People with coeliac disease cannot tolerate this group of proteins. 

Gluten has quite a few practical properties, which is why it can be found in many foods. One of these properties is revealed by the term "gluten". In combination with liquid, the gluten present in flour ensures that a dough does not crumble after baking - it becomes the "glue". It also gives baked goods a nice fluffy consistency and a great crust. Thanks to these properties, gluten is traditionally found in bread and baked goods. However, it is also "hidden" in many processed foods such as spice mixes, ready-made sauces and beer. This is because gluten is also a good emulsifier and carrier for flavourings. It is therefore a great additive for many of the products just mentioned. 

As beneficial as these properties are: People with coeliac disease have none of them. Their body considers gluten to be a hostile substance that it has to fight. It therefore produces antibodies. These antibodies then attack the small intestine and destroy the small intestinal mucosa. To be more precise, the villi of the small intestine die off over time if those affected consume products containing gluten. Villi are protrusions of the intestinal mucosa. They look like wart-like protrusions. They absorb nutrients into our blood and lymph. The death of the villi leads to an undersupply of vital vitamins to the body, as these can only be absorbed to an insufficient extent. 

Possible symptoms of coeliac disease

As you have already experienced, coeliac disease can remain hidden for a very long time because classic symptoms do not always occur. In addition, a misdiagnosis can occur because doctors do not immediately conclude that you have coeliac disease from the often diffuse symptoms. 

In the following, we will try to describe the clinical picture of gluten intolerance as best we can. Its symptoms also depend on the age at which coeliac disease develops. Basically, it can break out at any time. However, children between the ages of one and eight and adults between the ages of 20 and 50 are most commonly affected. Coeliac disease is less common in adolescence. 

Coeliac disease in children: The most common complaints

If coeliac disease breaks out in childhood, the first consequences usually become noticeable three to six months after the first wholemeal porridge or the first nibble on a loaf of bread, roll or rusk - in other words, when the child first consumes gluten. This is usually the case around the middle to end of the first year of life or at the beginning of the second year. 

Parents then notice the following symptoms, for example: 

• Diarrhoea
• Abdominal pain/stomach ache
• Foul-smelling bowel movements
• Fatty stool
• Vomiting
• Pale skin
• Shortness of breath
• Fatigue
• Loss of appetite / weight loss
• Tiredness
• Muscle weakness
• Distended abdomen / bloated belly
• Thin limbs
• Bad mood / weepy mood
• Irritability
• Poor sleep
• Developmental delays
• Delayed growth
• Inflamed, swollen tongue

In addition to these more typical symptoms of coeliac disease, there are other possible symptoms that are often not immediately associated with the disease. They can affect both children and adults. These include, for example:

• Chronic abdominal pain
• Constipation
• Unclear iron deficiency / vitamin deficiency
• Elevated liver values
• Enamel defects
• Unclear skin symptoms
• Joint pain
• Back pain / muscle pain
• Drop in performance
• Headache
• Depression
• Dizziness
• Movement disorders 
• Behavioural abnormalities
• Palpitations
• Development of lymphomas (enlargement of one or more lymph nodes)

According to the guideline, coeliac disease is often diagnosed late or not at all due to the completely different symptoms. Therefore, untreated coeliac disease patients must also expect long-term consequences if their disease is not recognised. These can be very dangerous. For example, bone density may be reduced and osteoporosis may develop. This also increases the risk of bone fractures.

Coeliac disease in adults: Possible symptoms

If coeliac disease first breaks out in adulthood, symptoms can be similar to those in children. However, there can also be a number of other symptoms, some of which are not directly associated with coeliac disease: 

• Changing consistency of the stool with a tendency to diarrhoea
• Constipation (hard stools can strain the anal canal and cause blood in the stool)
• Feeling of fullness
• Flatulence
• Headache
• Heartburn
• Weight loss
• Hair loss
• Bone pain
• Osteoporosis
• Muscle weakness
• Tiredness
• Decreased sexual function
• Loss of appetite or constant hunger
• Protein deficiency
• Oedema
• Vitamin deficiency
• Iron deficiency
• Anaemia
• Kidney diseases
• Failure to conceive / unfulfilled desire to have children
• Menstrual disorders
• Problems with the psyche (e.g. depression, anxiety)
• Neurological symptoms 

As you can see, coeliac disease can have 1000 faces and is therefore often referred to as a clinical chameleon. You can find out which methods can be used to diagnose the disease in the next section. 

Focus on coeliac disease and teeth

As you have already experienced, celiac disease can be associated with tooth enamel defects. It is typical for these enamel changes to occur in both the upper and lower jaw. This mainly refers to the following defects:

Enamel hypoplasia

Enamel hypoplasia or enamel hypoplasia is the underdevelopment of tooth enamel. This defect occurs during tooth development in childhood. It is characterised by the fact that the milk teeth of affected children appear very small. This gives the impression that they are very far apart. In addition, the teeth are often an unusual white or brown colour. The danger of enamel hypoplasia is that it significantly increases the risk of tooth decay. 

Hypomineralisation of the enamel or "chalk teeth"

This is a mineralisation disorder in the area of the natural tooth crown - the part of the tooth that protrudes from the gum and is covered with enamel. In this disease, too little calcium and phosphate are formed in the tooth enamel. This can affect both the milk teeth and the permanent teeth. The enamel formation disorder causes the teeth to become very sensitive to pain and crumbly. As a result, the teeth are more susceptible to decay. The first signs are often discoloured molars or incisors. 

Why do dental problems occur with coeliac disease?

There are several possible reasons why people with coeliac disease struggle with dental problems. One possible cause could be that the body cannot absorb enough nutrients due to coeliac disease. As a result, it may not be supplied with enough calcium and phosphate - which can lead to a mineralisation disorder. However, studies also suggest that the enamel defects could also be caused by the antibodies that the body produces to "defend" itself against gluten. These antibodies impair the development of tooth enamel. 

Hypomineralisation of the enamel or "chalk teeth"

This is a mineralisation disorder in the area of the natural tooth crown - the part of the tooth that protrudes from the gum and is covered with enamel. In this disease, too little calcium and phosphate are formed in the tooth enamel. This can affect both the milk teeth and the permanent teeth. The enamel formation disorder causes the teeth to become very sensitive to pain and crumbly. As a result, the teeth are more susceptible to decay. The first signs are often discoloured molars or incisors. 

When do symptoms appear on the teeth?

The enamel of milk teeth is formed by the 11th month of life. The enamel of permanent teeth develops until around the age of seven. It is therefore most likely that tooth enamel defects due to coeliac disease will develop before the age of eight. You already know that coeliac disease can also be asymptomatic. In addition, children in particular often have no clear gastrointestinal symptoms. It is therefore quite possible that dentists do not associate dental problems with gluten intolerance. For this reason, the German Coeliac Society recommends that dentists should always refer children to an internist or gastroenterologist in the event of changes in tooth enamel. 

Diagnose coeliac disease: With these tests

In order to diagnose coeliac disease with certainty, two examination procedures are used in both children and adults: 

• Antibody determination
• Tissue examination

It is important for both tests that patients do not abstain from eating gluten beforehand, as otherwise the results may be falsified. 

Here we present the investigations in more detail. 

Antibody determination

As you have already learnt, the body of a coeliac patient sees gluten as an "enemy". In order to fight it, it produces antibodies. These antibodies can be detected by means of a blood test. Healthy patients are almost always free of corresponding antibodies. However, the determination of antibodies is not sufficient for a reliable diagnosis. The test merely suggests a suspicion. And this is where the next examination comes into play - a tissue examination of the small intestine. 

Tissue examination

When examining the tissue of the small intestine during a gastrointestinal endoscopy, a camera probe on a thin tube is inserted into the small intestine via the mouth, oesophagus and stomach. In medical terms, this is called an endoscopic biopsy of the small intestine. Several tissue samples are taken and then analysed under a microscope. So many samples are necessary because the changes in the intestine caused by coeliac disease do not always occur evenly. If samples are taken from several places, the risk of overlooking something is reduced. 

The examination usually takes place under sedation. This means that the patient is given a drug to calm the central nervous system - it is not a real anaesthetic. The patient simply sleeps for a short time and wakes up immediately after the examination. Theoretically, the examination can also be performed without sedation. However, this can be unpleasant or even painful, and the gag reflex is triggered by the tube in the mouth, which can be very inconvenient. The examination is low-risk and takes between 10 and 15 minutes. 

Diagnosing coeliac disease in children: The most important information 

You have already learnt that children affected by coeliac disease do not always show symptoms. It is therefore important that children are compulsorily tested for the corresponding antibodies if first-degree relatives suffer from the disease. The first test should be carried out within the second year of life and by the second birthday at the latest. The child should then be tested every year until the age of six. After that, testing should ideally take place every two to three years until the age of 18. 

Coeliac disease self-test: Is it useful?

As with many other intolerances and allergies, you can also find many self-tests for coeliac disease - for example in pharmacies or online. These are usually tests that can detect antibodies, more precisely: the so-called tissue transglutaminase antibodies or endomysium antibodies of the IgA subgroup. To do this, you need to take a drop of blood from your finger using the enclosed lancet and place it in a container filled with a liquid. You then place a drop of this mixture on the field of a test cassette - just like a corona test. If antibodies are detectable, there will be a corresponding colour reaction. Stool tests are also available. For this, you have to send a stool sample to a laboratory, which then detects antibodies - or not. However, this method is considered inadequate. 

In general, you should know: The informative value of such self-tests is quite low. For example, five to ten out of 100 coeliac disease patients do not produce any antibodies at all - they have what is known as IgA antibody deficiency syndrome. The self-test would then remain negative for them. Another problem: if the person is already on a gluten-free diet at the time of testing, the result may also be negative because the number of antibodies is then too low for detection. 

All of this shows that a self-test from the pharmacy or the internet is no substitute for a visit to the doctor. It makes more sense to go to a doctor's surgery with your suspicions and have a thorough examination and consultation beforehand. If the doctor shares your suspicions, he or she will schedule an antibody test anyway. Another advantage of this is that it is covered by health insurance. So you also save yourself the expensive self-tests that you have to pay for yourself. 

In addition, as you have already read, an antibody test is not sufficient for a reliable diagnosis anyway. A tissue sample must always be taken from the intestine. As you can see, you won't be spared a trip to the doctor. 

Genetic test not a useful diagnostic tool

In order for coeliac disease to develop at all, certain genetically inherited characteristics must be present - these are the so-called HLA markers (human leukocyte antigens). Around 90 per cent of people with coeliac disease have the HLA-DQ2 trait, all others have the HLA-DQ8 gene. If these characteristics cannot be detected by a blood test, it is unlikely that the person has coeliac disease. 

Sounds like a good way to detect coeliac disease at first. However, around 30 to 35 per cent of all (even healthy) people in the general population carry the HLA-DQ2 and HLA-DQ8 traits. However, only around two per cent of these people actually develop coeliac disease. This means that a genetic test can rule out coeliac disease with a high degree of probability, but cannot prove it. 

The examination usually takes place under sedation. This means that the patient is given a drug to calm the central nervous system - it is not a real anaesthetic. The patient simply sleeps for a short time and wakes up immediately after the examination. Theoretically, the examination can also be performed without sedation. However, this can be unpleasant or even painful, and the gag reflex is triggered by the tube in the mouth, which can be very inconvenient. The examination is low-risk and takes between 10 and 15 minutes. 

Diagnosing coeliac disease in children: The most important information 

You have already learnt that children affected by coeliac disease do not always show symptoms. It is therefore important that children are compulsorily tested for the corresponding antibodies if first-degree relatives suffer from the disease. The first test should be carried out within the second year of life and by the second birthday at the latest. The child should then be tested every year until the age of six. After that, testing should ideally take place every two to three years until the age of 18. 

Treating coeliac disease: With a strict diet

Coeliac disease is a chronic illness and unfortunately cannot be cured with a tablet or other medication. The only, but very effective treatment is to strictly eliminate gluten from the diet. If patients stick to this, they usually live completely symptom-free. Gastrointestinal symptoms often improve after just a few weeks. Around two thirds of sufferers are symptom-free after six months. 

Important to know: The strict diet really does not allow any exceptions; you should never ignore the dietary recommendations. Even the smallest traces of gluten can fuel the disease process. 

Cure as a recovery from the complaints

One way to promote recovery after a recent coeliac disease diagnosis is a cure. Many sufferers have been on a medical odyssey in search of a reason for their symptoms. They are exhausted and drained. There are rehab clinics for them that specialise in coeliac disease. If you are considering such a stay, you can apply for this type of treatment - talk to your GP about it. As a rule, if the doctor's practice recognises the need for such a cure, it will be covered by your health insurance. However, to be on the safe side, ask your health insurance provider. 

Treat coeliac disease with homeopathy? Rather not

As with any other illness, there are all kinds of globules and other homeopathic remedies for coeliac disease. However, you should not expect anything from this if you want to treat your gluten intolerance using naturopathy. There is no scientific evidence that homeopathy has any effect. Only the strict avoidance of gluten can demonstrably help you. 

What to eat with coeliac disease?

Living gluten-free? That sounds simple at first. But it's not quite like that - because it's not enough to simply give up bread and bread rolls. As you have already learnt, the protein is also hidden in many other foods. It is helpful for those affected to take advantage of qualified nutritional therapy or counselling so that they can adapt well to the new situation and avoid falling into any gluten traps. 

Here we give you an initial overview of which foods you can avoid and which you can eat with confidence. 

Examples of foods containing gluten

• Wheat
• Rye
• Barley
• Green spelt
• Spelt
• pearl barley
• Breaded vegetables
• Vegetables wrapped in pastry
• Breaded or floured pieces of meat
• Meatballs
• Meatloaf
• Roast herring 
• Rolling pancakes
• Seitan
• Waffles
• Biscuits
• Malt beer / Beer
• Fresh or dry yeast

Examples of gluten-free foods 

• Maize
• Rice
• Millet
• Buckwheat
• Quinoa,
• Canihua
• Amaranth
• Oats
• Edible hemp
• Potatoes
• Vegetables
• Pulses (for example peas, beans, lentils, soya, chickpeas)
• Fruit
• Nuts and seeds
• Eggs
• Meat
• Fish
• Seafood
• Milk
• Fats, oils
• Sugar
• Honey
• Fruit juice
• Tea
• Coffee
• Wine
• Purely distilled alcohol (such as schnapps, vodka, whisky) 
• Vinegar
• Herbs

The gluten-free symbol

Of course, it is not realistic for coeliac patients to only eat the foods just mentioned. Every now and then, we all have to reach for a ready-made product. To be on the safe side, people with coeliac disease should look out for the gluten-free symbol (Crossed Grain Trademark / CGT). This symbol consists of a crossed-out ear of corn and signals to us consumers that there is no gluten in the labelled food product. 

In order to obtain this certification, manufacturers must prove through tests and inspections that their products comply with the so-called AOECS standard. This standard is a private set of rules issued by the non-profit organisation "Association of European Coeliac Societies". If manufacturers can prove that they fulfil the requirements for the seal, they may use the mark on their packaging, advertising materials, websites or as labelling for company literature. However, the CGT may not be used for unprocessed products - for example, milk, eggs, fruit, vegetables, raw meat and fish. 

Do people with coeliac disease have to avoid going to restaurants?

Yes and no. In large cities, there are more and more restaurants that offer gluten-free food. Simply search for such restaurants on the internet in advance - then you can have a nice evening in company with coeliac disease and don't have to watch your friends eat. Alternatively, you can of course also go out to eat in "normal" restaurants. However, choose your dish carefully and, to be on the safe side, tell the staff about your coeliac condition so that they can keep a close eye on your menu to make sure no gluten gets into it. 

Exchange of experiences with other affected persons

Part of your own therapy can be to share experiences with other patients, give each other nutritional tips and share recipes. This can help you not to feel alone with coeliac disease. You can easily find contacts to relevant internet forums and self-help groups via a quick internet search. 

Weight gain from cutting out gluten?

It can actually happen that people gain weight when they give up gluten-containing foods. It is thought that this could be due to the recovery of the intestines. With a healthy small intestinal mucosa, the body can now absorb the nutrients from food better again, whereas the metabolism was previously in economy mode. Another (nice) reason for more weight on the scales: sufferers rediscover their pleasure in eating because they no longer suffer from their symptoms - and simply have more appetite. 

In order to obtain this certification, manufacturers must prove through tests and inspections that their products comply with the so-called AOECS standard. This standard is a private set of rules issued by the non-profit organisation "Association of European Coeliac Societies". If manufacturers can prove that they fulfil the requirements for the seal, they may use the mark on their packaging, advertising materials, websites or as labelling for company literature. However, the CGT may not be used for unprocessed products - for example, milk, eggs, fruit, vegetables, raw meat and fish. 

Coeliac disease in combination with other diseases: a quick check

Many people wonder how their coeliac disease affects their health, what interactions there are with other diseases and whether they have a higher risk of developing other diseases. Here we provide the most important answers:

Do people with coeliac disease have a higher risk of cancer? 

It is true that people with coeliac disease have a slightly increased risk of developing cancer - but only if they do not stick to their gluten-free diet. On the other hand, there are also studies that show that coeliac patients are less likely to develop breast cancer than women who tolerate gluten well. 

Do people with coeliac disease often also have type 1 diabetes?

Yes, type 1 diabetes is an autoimmune disease that often occurs in combination with coeliac disease (this does not apply to type 2 diabetes). People who have type 1 diabetes are therefore also tested for coeliac disease as standard. 

Is there a connection between coeliac disease and Hashimoto's?

Yes, the gut and thyroid function are linked. People suffering from Hashimoto's thyroid disease should therefore always be tested for gluten intolerance. If the suspicion is confirmed, they must avoid gluten. 

Do coeliac patients always also have lactose intolerance?

No, not every person affected has lactose intolerance - i.e. an intolerance to milk sugar. However, there is a risk of developing a secondary form. This secondary form is acquired. This can happen to people with coeliac disease because their damaged small intestinal mucosa can cause a lactase deficiency. For this reason, patients diagnosed with coeliac disease should not only follow a gluten-free diet, but also a lactose-free diet. As a rule, this secondary form of lactose intolerance then disappears completely. 

Do coeliac disease patients have a higher risk of developing a bowel disease?

Unfortunately, yes. Those affected have an almost tenfold higher risk of developing a chronic inflammatory bowel disease (e.g. ulcerative colitis or Crohn's disease). The reverse is also true. 

Does coeliac disease increase the risk of rheumatism?

Yes, children with coeliac disease are almost three times more likely to develop rheumatism (juvenile idiopathic arthritis) than healthy children. It is therefore important that both parents and paediatricians look out for joint problems in children and then also test for coeliac disease. 

Do people with coeliac disease often have skin problems? 

There is a rare skin disease, dermatitis herpetiformis Duhring (DHD), which is directly linked to coeliac disease. More precisely: all patients with DHD also have coeliac disease. In both diseases, increased antibody titres against tissue transglutaminase (tTG-IgA = tissue transglutaminase IgA) are found in the blood. Why this is the case has not yet been fully understood scientifically. 

DHD causes symptoms such as itchy skin and associated severe itching. Small red spots, papules and blisters can also appear on the skin. Due to the itching, patients often scratch these open, causing crusty sores to form. A special feature of this skin disease is that the rash is symmetrically distributed on the body. It is mainly located on the extensor sides of the legs and arms and particularly over the knees and elbows. The scalp and buttocks can also be affected. Fortunately, DHD can be treated very well with medication - but this has no effect on coeliac disease. A gluten-free diet therefore remains unavoidable. 

Do coeliac disease patients have a higher risk of developing a bowel disease?

Unfortunately, yes. Those affected have an almost tenfold higher risk of developing a chronic inflammatory bowel disease (e.g. ulcerative colitis or Crohn's disease). The reverse is also true. 

Does coeliac disease increase the risk of rheumatism?

Yes, children with coeliac disease are almost three times more likely to develop rheumatism (juvenile idiopathic arthritis) than healthy children. It is therefore important that both parents and paediatricians look out for joint problems in children and then also test for coeliac disease. 

Do people with coeliac disease often have skin problems? 

There is a rare skin disease, dermatitis herpetiformis Duhring (DHD), which is directly linked to coeliac disease. More precisely: all patients with DHD also have coeliac disease. In both diseases, increased antibody titres against tissue transglutaminase (tTG-IgA = tissue transglutaminase IgA) are found in the blood. Why this is the case has not yet been fully understood scientifically. 

DHD causes symptoms such as itchy skin and associated severe itching. Small red spots, papules and blisters can also appear on the skin. Due to the itching, patients often scratch these open, causing crusty sores to form. A special feature of this skin disease is that the rash is symmetrically distributed on the body. It is mainly located on the extensor sides of the legs and arms and particularly over the knees and elbows. The scalp and buttocks can also be affected. Fortunately, DHD can be treated very well with medication - but this has no effect on coeliac disease. A gluten-free diet therefore remains unavoidable. 

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All websites last accessed on: 26.03.2024