General Nutrition Advice and Dietary Interventions for Managing GI Symptoms in hEDS


In this article we will discuss nutrition in general and outline dietary interventions that focus on managing gastrointestinal (GI) symptoms in patients with Hypermobile Ehlers-Danlos syndromes (hEDS).

Importance of nutrition for health in general

Regardless of any individuals’ specific dietary restrictions or choices the diet should have a balance of macro and micro nutrients to provide nutritional balance. Certain dietary patterns limiting adequate amounts of certain foods may lead to nutrient shortfalls and over the course of a lifetime, deficiencies in one or more nutrients may contribute to serious health issues. In the UK the concept of a healthy balanced diet is depicted in the Eat Well Guide1 produced by Public Health England. The Eat Well Guide aims to provide the general public with a practical guide to achieving a healthy balanced diet by utilising the 5 main food groups. Similar education formats are used around the world and also for specific dietary regimens. For example the Vegan Society has produced a Vegan Eat Well Guide2. Further government public health messages to help the general public achieve a healthy balanced diet include the 5-A-Day campaign3 aimed to improve intake of fruits and vegetables and the Change for Life campaign4 aimed at providing families and in particular children with practical support to achieve a healthy balanced diet. 

Why nutrition could be impaired in hEDS patients and what consequences might there be?

At the present time there is no robust evidence to suggest that an individual with hEDS should adopt any specific dietary regimen and therefore a healthy balanced diet, considering ethical and cultural decisions, is the aim. Similarly, there is currently no strong evidence to suggest people with hEDS experience any specific nutritional deficiencies as a consequence of their connective tissue disorder more than the general population. hEDS has not been demonstrated to cause any particular form of  maldigestion or malabsorption. Therefore, if you eat a variety of food from the 5 food groups you will obtain the vitamins and minerals required to prevent deficiency. 

The key difficulties experienced by patients with hEDS in regards to dietary intake are mainly related to the increased prevalence of disorders of gut brain interaction observed in hEDS compared to the general population. People with hEDS have a higher chance of experiencing a range of symptoms due to altered sensorimotor function of the gastrointestinal tract, like irritable bowel syndrome and functional dyspepsia, a condition characterised by discomfort in the upper part of the abdomen. Symptoms experienced in patients with functional dyspepsia and irritable bowel syndrome are frequently associated and triggered with food consumption which in turn may lead to unhelpful dietary changes in an attempt to reduce symptoms. Patients with hEDS are also more likely to meet the diagnostic criteria for more than one functional gastrointestinal (GI) disorder in addition to experiencing a range of other non-intestinal or unexplained body symptoms5. The combination of GI disorders, somatic symptoms and psychological co-morbidities contribute to the severity of symptoms experienced.

Is there a role for specific diets in hEDS patients?

Dietary management can form part of the treatment of functional GI disorders and symptoms. The cornerstone of any dietary treatment is based on two main important factors. Firstly a regular meal pattern should always be adopted the vast majority of the time. This means avoiding hazardous eating patterns, leaving long gaps between meals or only consuming one meal per day. Furthermore, eliminating a large number of food groups in an attempt to control symptoms can lead to micro and macro nutrient deficits. A sensitive digestive system will fluctuate in severity less frequently if food is provided in a regular and controlled manner. Secondly good eating behaviours should always be followed. Practically this means sitting in a correct upright eating position, chew your food properly, do not eat too fast, do not drink large volumes (>200mls) of fluid with your meals, minimise consumption of highly processed food and ready to eat meals and do not slouch / lay down after eating. Often if you do not get these basics right then further dietary interventions can fail or have less impact than expected. 

If you experience lower GI symptoms such as those with IBS i.e. discomfort, bloating, constipation or diarrhoea, then in addition to the basic advice above there are first line dietary adaptations to be made. The very useful British Dietetic Association IBS Food Fact Sheet provides a practical overview of first line dietary advice6

Following this, if you still experience symptoms then the low FODMAP diet has the best evidence for reducing symptoms associated with IBS. The low FODMAP diet is a complex 3 phase dietary treatment that involves a 4 week food restriction followed by a 10 week food reintroduction process to help personalise your diet to reduce GI symptoms. The diet is best managed under the supervision of a registered dietitian and this service is available via the NHS or privately. Unfortunately not everyone will have access to a FODMAP dietitian and if this is the case we recommend you try the diet yourself using the Monash University Low FODMAP App7 or the Foodmaestro Low FODMAP Diet App8 as your guide. These apps will take you through all 3 phases of the low FODMAP diet. 

People with hEDS can often experience upper GI symptoms such as nausea, feeling full quickly and not being able to finish a normal sized meal. These dyspeptic symptoms can be diagnosed as Functional Dyspepsia or may form part of Gastroparesis symptoms, that is symptoms caused by slow digestion and emptying of the stomach or other gastroduodenal disorders. Although there is a lack of dietary research for these upper GI conditions and symptoms; in practice we find dietary modification can reduce the severity of symptoms. To improve upper GI symptoms it is even more important that a regular meal pattern and good eating behaviours are adhered to. You may need to adopt a little and often approach to eating by having small but regular meals or your usual 3 main meals at smaller portion sizes with snacks included in between. Foods which contain a high amount of fat can spend a longer time in your stomach and can trigger upper GI symptoms. Therefore avoid very high fat foods such as deep fried foods, fatty meats or high fat products. Everyone will have their own tolerance to fat within foods so it is important to test your tolerance with small portions of fat containing foods and increase a little at a time. 

Additionally many people with upper GI symptoms find a texture modified diet helps relieve the severity of symptoms. Essentially this means consuming, on a regular basis, more foods that are fork mashable or have a liquid consistency e.g. smoothies, soups, stews and casseroles. The smaller particle size of the food in these consistencies will travel through the gut quicker and place less effort on the digestive system. Avoiding the consumption of too many raw vegetables, including salad, and reducing intake of raw fruit forms part of texture modification advice.   

If you are experiencing severe GI symptoms most of the time and/or you are chronically constipated then you may also find modifying the texture of foods also helps reduce the severity of your symptoms. 

Are there any tests available to diagnose food intolerances?

Food intolerances are common in those who experience gastrointestinal symptoms. One has to remember that the causes of food intolerance are multifactorial and any intolerance to a food will have a wide variation and will be different for every person. Unfortunately there are no accurate tests to identify any food intolerances, although hydrogen breath test can help determine lactose and fructose malabsorption. Although there are several tests available for diagnosing other food intolerances they lack scientific rigor and for all intents and purposes should be viewed as completely unreliable. The fact sheet on food allergy and food intolerance testing by the British Dietetic Association summarises all available food intolerance tests nicely9. Additionally it is worth noting that malabsorption/maldigestion and intolerance are two different things and one can perceive intolerance to a food type without evidence of maldigestion or malabsorption of nutrients contained within that food type, and vice versa. 

Can mast cell activation disorder lead to food intolerances? 

Mast cell activation disorder (MCAS) is a rare disorder characterised by a typical constellation of signs and symptoms of mast cell activation involving the skin (flushing, pruritus, urticaria), the air passageway and lungs (rhinitis, wheezing, dyspnea) the GI tract (abdominal pain, loose stools and diarrhoea), the neurological system (headaches) and the cardiovascular system (palpitations, hypotension) diagnosed on the basis of strict biochemical and clinical evidence, including a major clinical response in symptoms with medications that block the production of mast cell mediators. Although clinical experience suggest a relation between hEDS and MCAS, epidemiological and mechanistic evidence is currently lacking.

Specific dietary interventions for the treatment of symptoms have not been studied in patients with mast cell disorders. In practice, the single most important dietary recommendation is to avoid known triggers. Indeed before any dietary research trials on a low histamine diet can even take place there first needs to be an accurate database of foods that have been tested for their histamine content. 

How can food intolerance be treated?

If you suspect a food is triggering symptoms and you have some level of intolerance then this will need to be evaluated using an exclusion and reintroduction method. Briefly this means excluding the suspected food from the diet for a limited period of time e.g. 1-4 weeks and assessing if your symptoms have improved. If they have you can assume the food you avoided was the thing triggering your symptoms. However you must test this assumption via a food challenge. A food challenge is the only way to test tolerance levels to food. There are many ways to challenge a food but to help with accuracy it is best to complete a food challenge over a few days by gradually increasing the portion size of the food from a small to a normal portion size. This way you can identify if you can tolerate a small amount of the food and have it infrequently rather than continuing to avoid it all together which may be unnecessary. There are many other factors to consider when attempting exclusion and reintroduction food challenges and the results are not always black and white. It can be hard to interpret the results sometimes as many factors contribute to food intolerances including the thought of eating the food rather than the food itself triggering symptoms; the so called nocebo effect. It is not surprising that people become confused and continue with several food restrictions without really knowing if the foods they are avoiding are triggering symptoms or not. A medical team with a dietitian can support but can also be very hard to access. The most important thing is if you find your diet is becoming restricted and/or you are restricting foods and continue to experience severe symptoms then clearly it is not just the food that is triggering your symptoms and you should seek professional support. 

What are the risks of restrictive eating patterns? 

The majority of people with GI symptoms will inevitably restrict some foods to manage their symptoms and this is common sense and certainly does help to manage symptoms. If however the diet becomes over restricted in the variety of foods consumed and/or you engage in disordered eating behaviours (e.g. only eating one meal per day due to symptoms, eat haphazardly, avoid whole food groups, follow several diets or dietary restrictions) then you place yourself at increased risk of: specific nutrient deficiency, malnutrition, poor food related quality of life, increased gastrointestinal symptoms whenever you try to expand your diet, increased risk of further disordered eating or developing an eating disorder. Furthermore, skipping meals and weight loss can worsen gastrointestinal motility, in particular gastric rate of emptying and colonic motility worsening both dyspepsia and constipation and in turns exacerbating symptoms further. This can lead to a vicious cycle compromising nutritional balance and increasing the risk of micro and macro nutrient deficits. Then, anticipatory symptoms and hypervigilance can further enhance the severity of symptoms. Restrictive eating is therefore a complex problem and perhaps people with hEDS are at an increased risk due to the increased prevalence of functional gastrointestinal disorder and psychological comorbidities, in particular anxiety, in patients with hEDS compared to the general population. It is therefore important people with hEDS in this situation seek professional support.         

Overall conclusion about the role of diet in hEDS. 

The nutritional aim for anyone is to achieve a healthy balanced diet and ideally via this dietary approach a healthy body weight defined as a Body Mass Index (BMI) of 18.5-25kg/m2. People with hEDS are not exempt from these general guidelines and therefore this should be their overall aim. Additionally and similarly to everyone else if someone with hEDS has another medical condition that requires dietary manipulation e.g. gastrointestinal disorders or diabetes, then the general advice provided for these conditions should be adopted by those with hEDS. It is important to be aware of the scientific evidence behind food intolerance testing and evolving dietary treatments that are still in the research phase. To prevent over restricting the diet a formal exclusion and reintroduction method of suspected food intolerances should always be followed, if possible with healthcare professional support. 



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