Celiac disease (gluten intolerance): symptoms, diagnosis and a gluten-free diet

At a glance

Frequency
according to estimates affects around one in a hundred people in Europe - many do not know about their disease
Cause
an autoimmune reaction against gluten (the gluten protein in wheat, rye, barley, spelt)
Curable
not curable according to current knowledge - but generally fully controllable with a strictly gluten-free diet
Key values
transglutaminase IgA antibodies (tTG-IgA) + total IgA - with a positive finding, generally a biopsy for confirmation
ICD-10
K90.0

1. What is celiac disease?

Celiac disease is a chronic autoimmune disease in which the immune system reacts to gluten - a protein in wheat, rye, barley and spelt - with an inflammation of the small-intestinal mucosa. The result: the intestinal villi, which are responsible for nutrient absorption, are damaged (villous atrophy). As a result, nutrients can no longer be absorbed sufficiently (malabsorption).1

Celiac disease is not an allergy and not an intolerance in the classic sense - it is an autoimmune disease with a genetic predisposition. According to estimates, about one in a hundred people in Europe is affected, but in a large proportion the diagnosis is never made - which is why celiac disease is also referred to as the chameleon of gastroenterology.1

The only proven therapy is a lifelong, strictly gluten-free diet. With consistent gluten avoidance, the small-intestinal mucosa generally recovers completely, and the symptoms mostly disappear.

2. Symptoms - including atypical ones

The symptoms of celiac disease are extremely variable. The complaints described as classic often occur only in children. In adults, atypical symptoms often predominate, which makes the diagnosis more difficult:1

Classic symptoms (more common in children)

  • chronic diarrhea, voluminous, foul-smelling stools
  • Abdominal pain, bloating, a distended abdomen
  • failure to thrive in children (insufficient weight gain, growth delay)
  • weight loss

Atypical symptoms (more common in adults)

  • Iron deficiency - often the only abnormality; does not respond to oral iron preparations
  • Fatigue and exhaustion
  • Osteoporosis - due to reduced calcium and vitamin D absorption
  • elevated liver values - without an explainable cause
  • changes of the oral mucosa (aphthous ulcers), tooth-enamel defects
  • skin changes: dermatitis herpetiformis (Duhring's disease) - a strongly itching, blister-like skin rash, considered the skin form of celiac disease
  • neurological symptoms: headache, peripheral neuropathy, ataxia
  • cycle disturbances, infertility
  • depressed mood

Tricky: celiac disease can also occur entirely without symptoms (so-called silent celiac disease). It is then often only discovered by chance - e.g. during the work-up of an unexpectedly low ferritin value or an osteoporosis.

3. Associated diseases

Celiac disease occurs with an above-average frequency together with certain other diseases. With these diseases, celiac disease should generally be actively considered and specifically tested for:1

  • autoimmune diseases of the thyroid - in particular Hashimoto's thyroiditis (common)
  • Diabetes type 1
  • dermatitis herpetiformis (Duhring's disease — the skin form of celiac disease)
  • IgA deficiency - can make celiac antibodies falsely negative (which is why total IgA should always be determined as well)
  • Down syndrome, Turner syndrome, Williams syndrome
  • Irritable bowel syndrome - celiac disease should be ruled out before the diagnosis of an IBS

4. Diagnosis

The diagnosis of celiac disease is generally made in two steps: serology (a blood test) and a biopsy (a tissue sample from the small intestine). Important: at the time of the diagnostics, gluten-containing food must be eaten - a premature gluten-free diet can falsify the results.1

Step 1: Serology

tTG-IgA (transglutaminase IgA antibodies): The most important screening value. High sensitivity and specificity. With a positive result, generally a biopsy follows for confirmation.

Total IgA: Must always be determined as well, because an IgA deficiency can make the celiac antibodies falsely negative. With an IgA deficiency, IgG-based tests are used instead.

Endomysial antibodies (EMA-IgA): Can be used as a confirmatory test. Very high specificity.

Step 2: Biopsy

With a positive antibody finding, an esophago-gastro-duodenoscopy (a gastroscopy) is generally performed with the removal of several biopsies from the small intestine (duodenum). Typical finding: villous atrophy, crypt hyperplasia, increased intraepithelial lymphocytes (Marsh classification).1

In children: Under certain conditions, the diagnosis can, according to current guidelines, also be made without a biopsy - when the antibody values are strongly elevated and are confirmed by a pediatric gastroenterologist.

HLA typing: The genotypes HLA-DQ2 and HLA-DQ8 are a prerequisite for celiac disease. Their absence practically rules out celiac disease. Their detection alone, however, does not prove celiac disease, since these genotypes also occur frequently in the general population.

More: Preparing for a doctor's appointment.

5. A gluten-free diet

The lifelong, strict gluten-free diet is the only proven therapy of celiac disease. With consistent gluten avoidance, the small-intestinal mucosa generally recovers completely within months to a few years:1

What has to be avoided?

  • wheat, rye, barley, spelt, green spelt, emmer, einkorn, kamut - as well as all products that contain these grains
  • watch out for hidden gluten: sauces, soups, sausage products, ready meals, beer, some medications and dietary supplements

What is allowed?

  • rice, corn, millet, buckwheat, quinoa, amaranth, potatoes, legumes
  • all fresh meat, fish, egg and dairy products (unprocessed)
  • fruit and vegetables
  • oats: pure and uncontaminated (gluten-free oats) are tolerated by most people with celiac disease - but should generally be introduced under medical supervision
  • products with the crossed-grain symbol (the official celiac symbol) or the labelling "gluten-free" (< 20 ppm gluten according to EU regulation)

Nutritional counseling by a specialized professional is generally very advisable at the time of diagnosis. The German Coeliac Society (DZG e. V.) offers advice, product lists and support.

6. Monitoring and course

Antibody monitoring: The tTG-IgA values should fall under a gluten-free diet and generally normalize. A rise can point to gluten exposure.

Follow-up biopsy: Can be sensible in certain cases in order to confirm the recovery of the mucosa - especially when the antibodies do not fall or symptoms persist.

Monitoring deficiencies: Iron, ferritin, vitamin B12, folic acid, vitamin D, calcium, zinc should be checked regularly and supplemented if needed - especially in the first year after diagnosis.

Bone density: At diagnosis, a bone-density measurement (DXA) should generally be considered, since osteoporosis is a common complication.

Long-term: With a consistent gluten-free diet, life expectancy is generally normal. Untreated celiac disease increases, in the long term, the risk of certain complications (among others osteoporosis, lymphomas, infertility).

7. Living with celiac disease

A gluten-free diet: Requires planning, especially when eating out, when travelling and at invitations. Avoid contamination (e.g. your own toaster, separate cutting boards).

Medications: Some medications contain gluten as an excipient - when in doubt ask the pharmacy or the manufacturer. More: Taking medications correctly.

Children: School, kindergarten, birthday parties - require informing the caregivers. The DZG offers information material.

Psychological burden: The lifelong diet can be burdensome - self-help groups and the DZG can offer support.

8. How brite helps you with celiac disease

With celiac disease it is not about a single medication, but about consistent gluten avoidance and balancing out deficiencies. brite helps you take supplements reliably and keep an eye on your values.

Intake reminder

Iron, vitamin D, calcium, vitamin B12 - take dietary supplements on time.

Interaction check

Iron preparations + calcium? + L-thyroxine? Check the timing gap for free.

Health history

Document antibody values, ferritin, vitamin D and symptoms over time.

Digital medication plan

All medications and supplements clearly organized for gastroenterology and GP.

9. FAQ

Celiac disease is an autoimmune disease with detectable antibodies and damage to the small intestine. A wheat allergy is an IgE-mediated allergy (an immediate reaction). Non-celiac gluten sensitivity (NCGS) shows symptoms after gluten consumption, but without antibodies and without villous atrophy - the diagnosis is made by exclusion.

Yes - with a confirmed celiac disease, the lifelong gluten-free diet is, according to current knowledge, the only effective therapy. Even small amounts of gluten can damage the small-intestinal mucosa - even when no symptoms are noticeable.

Generally through a blood test (tTG-IgA antibodies + total IgA) and a small-bowel biopsy. Important: at the time of the diagnostics, gluten-containing food must be eaten - a premature gluten-free diet falsifies the results.

Generally yes - most of those affected tolerate pure, uncontaminated (gluten-free) oats. The introduction should, however, take place under medical supervision, since a small minority also react to oats.

Possible. An iron deficiency that does not respond to oral iron preparations is one of the most common atypical symptoms of celiac disease. A celiac screening (tTG-IgA + total IgA) is generally sensible in this situation.

According to the current state, there is no approved medication that can replace the gluten-free diet. Several active ingredients (among others enzyme supplements, immunomodulators) are in clinical studies, but are not yet available.

Yes - celiac disease can be diagnosed for the first time at any age. In adults, atypical symptoms (iron deficiency, osteoporosis, fatigue) often predominate, which is why the diagnosis is often made with a delay.

The German Coeliac Society (DZG e. V.) offers advice, product lists, recipes and self-help groups. Nutritional counseling by a specialized professional is very advisable at the time of diagnosis.

This article is for general information and does not replace medical advice, diagnosis or therapy. Celiac diagnostics should generally be carried out BEFORE the start of a gluten-free diet. Deficiencies should be checked regularly and supplemented if needed. Medications can contain gluten as an excipient - when in doubt ask the pharmacy or the manufacturer.