# Diets and nutrition in epidermolysis bullosa
Nutrition plays an important role in epidermolysis bullosa (EB), especially because the condition can cause skin damage in the mouth and oesophagus, which makes eating and drinking difficult. Malnutrition and certain vitamin deficiencies are also common. The overview below describes which nutritional approaches are being investigated or recommended for EB.
Soft, easy-to-consume food
ProveniIncluded in official guidelines, or approved by EMA or FDA
This nutritional pattern consists of food that requires little chewing and does not further irritate the damaged skin in the mouth and oesophagus. Examples are purees, yoghurt, soft vegetables, soups and liquid food. The aim is to reduce pain when eating while still getting enough nutrients.
This is a standard approach in EB, because many patients with especially the dystrophic forms of EB have blistering in the mouth and oesophagus. Avoiding hard, sharp or very hot food is routinely recommended to prevent further damage. This is in line with multidisciplinary care guidelines (2025, 2026) in which nutrition and oesophageal care are central to the daily management of EB.
Risks include that very soft food is sometimes less varied and that nutritional density can be lower. It may also be necessary to add salt, spices or flavour enhancers to keep food appealing without causing additional irritation.
Protein-rich nutrition
ResearchediPositive results in clinical studies, not yet standard treatment
A protein-rich diet contains relatively much animal and/or plant proteins: meat, fish, eggs, dairy products, legumes, nuts. Proteins are needed for skin repair and muscle building.
In EB, protein-rich food is mentioned as important to counteract malnutrition and muscle loss. Studies suggest that children with EB more often have low weight and that this is associated with growth retardation and weaker bone support (2024, 2025). Since proteins play a role in skin repair and immune function, adequate protein is considered part of a supportive nutritional strategy.
Practical benefits are that soft protein sources (such as yoghurt, meat porridge, egg dishes, bean sprouts) can fit well into the pattern of easy-to-consume food. A risk is that certain protein sources (such as nuts, hard cheese) are difficult to eat for patients with severe oral damage.
Food rich in zinc and vitamins
ResearchediPositive results in clinical studies, not yet standard treatment
This pattern focuses on food with plenty of zinc and vitamins (especially A, C, D and various B vitamins), because these substances are important for skin function, immunity and bone strength.
Research from 2026 shows that zinc deficiency in recessive dystrophic EB (rDEB) occurs regularly and is associated with more severe nutritional problems and infections. Vitamin deficiencies (especially vitamin D) are widely described in the same period, especially with long-term treatment and severe skin damage. Food with plenty of zinc (such as fish species, shellfish and molluscs, meat, sprouts) and vitamin sources is therefore being investigated as support.
Risks: zinc and vitamins may be less well absorbed when the intestinal lining is damaged (which sometimes also occurs in EB), so nutritional intake alone may not be sufficient. Additional monitoring via blood tests and sometimes also supplementation is recommended in many guidelines.
Periodic fasting or intermittent fasting
UnproveniNo scientific evidence that it works
This pattern assumes that periods without food intake give the body the opportunity to recover and detoxify. Examples are intervals of 14–18 hours without food.
No studies are known that support or refute periodic fasting in EB. The logic of it (body gets rest) may seem attractive in theory, but in EB where malnutrition is already a common problem, voluntary food avoidance can be risky. Fasting could lead to further weight loss and deficiencies.
Risks are clear: fasting can actually worsen malnutrition, especially for children and young adults with EB who already struggle to take in enough due to oral involvement.
Ketogenic diet
Advised againstiProven ineffective or harmful, or dangerous in combination with your treatment
A ketogenic diet severely restricts carbohydrates and focuses on fats and proteins, with the aim of bringing the body's metabolism into ketosis.
There are no studies that justify ketogenic nutrition in EB, and there are good reasons to recommend caution. The ketogenic diet is often strict in food choices, contains many saturated fats, and can be particularly difficult for patients with oral involvement because many ketogenic foods (nuts, cheese, meat) are hard to eat. Additionally, the diet can initially cause weight loss, which is precisely negative for people with EB who already run the risk of being underweight and malnourished.
Advised against because the strict setup, the risk of further dietary simplification, and the weight loss do not fit with the management of EB.
Nutrition aimed at inflammation reduction.
ResearchediPositive results in clinical studies, not yet standard treatment
This pattern focuses on nutrition that could dampen chronic inflammatory reactions: nutrition rich in omega-3 fatty acids (fish), flavonoids (berries, green tea), and nutrition with plenty of vegetables and fruits.
Recent research (2026) documents that systemic inflammation (body-wide inflammatory reactions) is a characteristic of recessive dystrophic EB and is associated with more severe symptoms. Anti-inflammatory nutrition is therefore theoretically interesting. Some studies suggest that certain dietary patterns (such as Mediterranean diet, as described in some EB cohorts) may help reduce inflammatory markers.
However: direct research into anti-inflammatory nutrition specifically designed for EB is limited. Nutrition alone will not stop inflammatory reactions. Practical application in people with severe oral involvement (many raw vegetables and nuts are difficult to eat) requires adjustments.
Nutrition and risk of esophageal stricture.
ResearchediPositive results in clinical studies, not yet standard treatment
Because epidermolysis bullosa often leads to scars and strictures in the esophagus (particularly in dystrophic forms), nutrition that does not worsen this stricture receives special attention. This means very soft, liquid-capable nutrition and nutrition without sharp edges.
Research from 2025 shows that esophageal stricture occurs mainly in severe forms of EB and that food intake therefore becomes increasingly difficult. Nutrition must then become ever softer. The question also regularly arises whether certain nutrients (much raw dietary fibre, for example) can cause or worsen strictures.
The risks are obvious: very soft nutrition can have less nutritional value per amount and offer less variety. There is also a risk of constipation if fibre intake becomes too low.
---
**Food choices in epidermolysis bullosa are always individual.** What works well for one person can be impossible for another, depending on the EB subtype, the location and severity of skin damage, existing complications (such as esophageal stricture), and personal tolerance. Food choices should take place in close collaboration with your healthcare provider or a specialized dietitian familiar with EB. Regular monitoring of nutritional status (weight, blood values, symptoms) is also part of good nutrition management.
_This information never replaces a doctor's judgment. Always discuss your situation with your own healthcare provider._