A well-balanced diet is essential to our health, but with conditions such as Ehlers-Danlos Syndrome (EDS) and Hypermobility Spectrum Disorder, the topic of diet can be fraught with pitfalls and disappointment. What works for one may not necessarily work for others, and with co-morbidities such as Mast Cell Activation Disorder, slow gut mobility, and a whole host of other issues, finding a hypermobility diet that agrees with you as an individual can be somewhat daunting. As you with find there doesn’t seem to be a one size fits all diet with hypermobility, as systemic issues caused by EDS and hypermobility, can make the whole topic of food fairly frustrating and complicated.
So, in the following paragraphs, let’s take an unbiased view of this topic and have a look at what the evidence says for the moment.
Roadblocks to the Hypermobile diet
We often find that with hypermobility, there comes a whole host of issues that can present themselves and affect individuals from being able to maintain a healthy diet. In fact, issues can arise with EDS that can affect an individual’s ability to even eat at all. Whilst there are many factors that can indeed cause issues when it comes to eating a healthy diet, there are a few factors that seem to be very prevalent for those with hypermobility.
These issues include:
- IBS: Current evidence would suggest that up to 62% of patients with Hypermbobile EDS (HEDS) suffer from irritable bowel syndrome (IBS). However, despite the recognition of the presence of IBS in those with hypermobility, this overlapping group has not been especially characterized, meaning patients with Hypermobility and Ehlers-Danlos Syndrome have been managed in a similar way to those with IBS alone. One study found that nearly all subjects (98%) with hypermobility spectrum disorder met the criteria for Adult Functional Gastrointestinal Disorders, and when we take this into account, the idea of finding the best diet for hypermobility starts to look a lot more complicated.
- GI symptoms: Multiple studies show that GI symptoms are relatively common among patients with Hypermobility, with one study finding that 76.2% of the study group had some form of dysmotility, 42.8% had gastroparesis, 11.9%bhad small bowel/colon altered transit time, and 9.5% had global dysmotility. Likewise, in a surprising finding from his study, it was also found Postural Orthostatic Tachycardia (POTS) to be an independent predictive factor for GI dysmotility.
- Dyspepsia: Also known as indigestion, refers to discomfort or pain that occurs in the upper abdomen, often after eating or drinking. In one study of 62 functional dyspepsia patients, it was found that hypermobility was diagnosed in 55% of them. Dyspepsia, as a whole, is very unpleasant, which can often contribute to certain negative behavioural changes around food, with many beginning to eat less and less to avoid symptoms.
- Postural Orthostatic Tachycardia (POTS): With POTS comes lightheadedness, palpitations, tremulousness during standing, and dizziness, which all lead to a huge drop in appetite (understandably). However, this can cause more issues for those with hypermobility as their diet becomes affected. Water and salt both help to increase blood volume, which in turn helps lessen POTS symptoms. However, with the symptoms already discussed, finding the appetite to actually sit down and eat, can be become a fairly arduous task.
- Mast Cell Activation Disorder (MCAS): Mast cells have an important role in the body, including hosting defence to parasitic infection and in allergic reactions. As mast cells are key players in the inflammatory response, they can be activated to release a wide variety of inflammatory mediators, by many different antigens including allergens, pathogens and physiological mediators. If you have MCAS, your mast cells release mediators too frequently and too often, meaning that when it comes to the hypermobile diet, foods high in histamine may negatively affect you.
Things to consider as part of your hypermobility diet
As you can see from the paragraphs above, when we take into account other comorbidities, we are left with a big hole in our dietary plan. Given the issues, we have covered, and depending on you as an individual and your individual symptoms, what can we consider to help with our hypermobility diet?
- Water: As mentioned earlier, increasing your intake of water can help with conditions associated with Hypermobility and Ehler-Danlos such as POTS. When water loss exceeds intake, blood volume decreases and plasma osmolality increases causing problems for those with hypermobility. By increasing your water intake you can dramatically increase your standing blood volume. It’s also pertinent to remember that every chemical reaction within the body requires water to happen, and only a slight drop in water can dehydrate our GI tract resulting in the large intestine (colon) soaking up whatever water it can from the food you consumed, making it too hard to pass, causing pain and constipation. Foods such as soups have also been proven to help with POTs, which can make the hypermobile diet a little easier by allowing us to eat something that can be digested easier.
- Salt: Simply put, the more sodium in your body, the means more circulating volume you have, which means a better tolerance level for being upright when we take into account issues such as POTS. An increase of salt will also cause vasoconstriction, helping to reduce the amount of venous pooling (extra blood that collects in the veins) in the legs, whilst also increasing your blood volume and preventing a drop in your blood pressure. The recommended salt intake for the non-hypermobile population is 6 grams, however, for those with hypermobility and EDS, 6-8 seems to be recommended, even pushing up to 5-10g/day for very symptomatic patients.
- Avoid alcohol: Alcohol frees histamine from its mast cells stores and depresses histamine elimination by inhibiting diamine oxidase, resulting in elevated histamine levels in tissues. When we combined this with issues such as Mast cell activation disorder, it is truly a recipe for disaster. Alcohol can also prevent blood vessels from vasoconstriction as normal, diminishing the return of the blood to the heart and brain which may lead to worsening of POTS symptoms. Likewise, alcohol is a diuretic, which can lead to dehydration, worsening some of the issues mentioned above.
Nutritional Deficiencies in EDS
Nutritional deficiencies can cause a range of symptoms, but the most common one is fatigue. This is especially true for people with Ehlers-Danlos Syndrome (EDS) and Joint Hypermobility Syndrome, who often experience fatigue and may have difficulty absorbing essential vitamins and minerals. Three of the most important nutrients that people with EDS and hypermobility need to be aware of are vitamin D, vitamin B12, and iron. Vitamin D is essential for bone health and a strong immune system, while vitamin B12 is necessary for cognitive function and for reducing symptoms of fatigue and depression. Iron is vital for carrying oxygen in the blood and maintaining immune function. If you have EDS or hypermobility and experience fatigue, it’s worth checking for potential deficiencies and working with healthcare professionals to ensure you are getting the nutrients your body needs to function optimally.
Vitamin D
Vitamin D, sometimes referred to as the “sunshine vitamin,” is a fat-soluble vitamin that our bodies primarily produce when exposed to sunlight. It’s also found in a limited number of foods, such as fatty fish, egg yolks, and fortified dairy products.
There are two main forms of vitamin D:
D2 (ergocalciferol) and D3 (cholecalciferol).
Vitamin D3 is the form our skin synthesizes when exposed to sunlight, while D2 is primarily found in plant-based sources.
It plays a vital role in calcium absorption and bone mineralization, helping to keep our bones and teeth strong, as well as helping to support healthy muscle function and a robust immune system, which is particularly important for individuals with EDS/hypermobility.
For those EDS/hypermobility and indeed chronic pain, they may be more susceptible to vitamin D deficiency for a number of reasons. Firstly, their bodies may struggle to absorb Vitamin D from the gastrointestinal tract, leading to inadequate levels in the bloodstream. Additionally, due to chronic pain and dislocation, they spend less time outdoors, limiting their sun exposure and, consequently, their natural vitamin D production.
Likewise, as I have said before, research is very lacking in EDS nutrition, however, there is some in regard to Fibromyalgia, which many of those with EDS go on to get diagnosed with, or are diagnosed before receiving their EDS diagnosis. Research has looked into the link between vitamin D deficiency and fibromyalgia, as well as the potential benefits of vitamin D supplements for pain management.
A recent study reviewed various research projects to see if vitamin D deficiency is more common in patients with chronic widespread pain and to evaluate the effects of vitamin D supplements on pain relief. The researchers analysed studies published between 1990 and 2022 from different databases.
Out of 434 studies, 14 met the requirements. The results showed:
- A connection between widespread muscle pain and vitamin D deficiency.
- Vitamin D supplements might help patients with low vitamin D levels.
- Vitamin D supplements led to pain reduction in some studies.
These findings suggest that vitamin D supplements may help reduce pain related to fibromyalgia and chronic widespread pain, especially for those with vitamin D deficiency.
People with EDS/hypermobility and fibromyalgia should be mindful of maintaining healthy vitamin D levels. discomfort.
Another study into Vitamin D, this time focused on those with EDS, is also very interesting. It also hits close to home for me, as my wife is both a social worker and hypermobile herself. With her own knowledge of EDS, she has managed to help support families during incredibly stressful times such as the ones mentioned below, and educated people on some of the issues such as bruising that comes with EDS,
This study found that babies with Ehlers-Danlos and vitamin D deficiency are at risk of suffering from infantile fragility fractures. These fractures can be mistaken for child abuse, which can be devastating for both the baby and the family. The researchers looked at 72 cases of babies with multiple fractures who were initially diagnosed with non-accidental trauma caused by child abuse. However, it was found that 93% of these babies had EDS, while the remaining 7% had vitamin D deficiency. The most common fractures noted at diagnosis were ribs and extremity fractures. The study highlights the importance of considering EDS and vitamin D deficiency in the diagnosis of infantile fragility fractures to avoid falsely accusing parents of child abuse.
Vitamin B12
Vitamin B12 is an essential nutrient that plays a crucial role in many bodily processes. It is necessary for the production of red blood cells, DNA, and the proper functioning of the nervous system. However, many with hypermobility/EDS report deficiency in vitamin B12. Of note, a deficiency here can lead to a condition called megaloblastic anaemia, which is characterised by fatigue, weakness, and shortness of breath.
It may be important to note here, that many of those with EDS are also diagnosed with Fibromyalgia, and a very recent study aimed to investigate the correlation between vitamin B12 deficiency and fatigue, as well as other neurologic symptoms in patients with fibromyalgia. The study included a retrospective analysis of the medical records of 2142 fibromyalgia patients who were diagnosed between 2015 and 2020. The results of the analysis showed that 42.4% of the patients had a B12 deficiency, and that fatigue and memory loss were more common in the B12 deficiency group. After adjusting for vitamin D levels, B12 deficiency remained significantly associated with the presence of fatigue. This study provides the first evidence for an association between B12 deficiency and fatigue in fibromyalgia patients.
B12 is a vital nutrient for maintaining good cognitive function, reducing depressive symptoms, and preventing fatigue. However, for those with hypermobility, these symptoms are often experienced even in the absence of vitamin B12 deficiency or neurological disorders. The effectiveness of vitamin B12 supplementation in such cases has been a subject of debate.
A recent study aimed to assess the effects of vitamin B12 alone or in combination with folic acid and vitamin B6 on cognitive function, depressive symptoms, and idiopathic fatigue in patients without advanced neurological disorders or overt vitamin B12 deficiency.
The study was a systematic review and meta-analysis of randomized controlled trials (RCTs) that were searched through various databases, including Medline, Embase, PsycInfo, Cochrane Library, and Scopus. The researchers included 16 RCTs with 6276 participants in their analysis. They found no evidence to support the effectiveness of vitamin B12 alone or in combination with folic acid and vitamin B6 on any subdomain of cognitive function outcomes.
Additionally, there was no significant association of treatment effects with any of the potential predictors and the study found no overall effect of vitamin supplementation on measures of depression. Unfortunately, only one study reported effects on idiopathic fatigue, so no analysis was possible.
Based on these findings, vitamin B12 supplementation alone is likely to be ineffective in improving cognitive function and depressive symptoms in patients without advanced neurological disorders. However, it’s important to note that vitamin B12 is still a necessary nutrient for overall health, and those with hypermobility should still aim to meet their daily recommended intake through their diet or supplements.
People with hypermobility may be at a higher risk of developing a vitamin B12 deficiency due to several factors such as gastrointestinal and medications used to manage hypermobility symptoms, such as proton pump inhibitors and metformin, may also interfere with the absorption of vitamin B12.
Thus, it is important for individuals with hypermobility who take these medications to consult with a healthcare provider to determine whether vitamin B12 supplementation is necessary.
Iron
Iron is an essential mineral that plays a vital role within our body, including carrying oxygen in the blood and helping to support immune function. However, iron deficiency is a common health problem world-wide, especially among women and children, and increasingly, those with hypermobility and Ehlers-Danlos syndrome.
Likewise, an Iron deficiency is a common cause of anaemia, a condition in which the body doesn’t have enough red blood cells to carry oxygen to the body’s tissues. When the body lacks iron, it is unable to produce enough haemoglobin, a protein in red blood cells that carries oxygen to the body’s organs and tissues. As a result, the body’s organs and tissues don’t get the oxygen they need, leading to fatigue, weakness, and other symptoms such as shortness of breath, dizziness, headache, pale skin, and rapid heartbeat. If left untreated, iron-deficiency anaemia can become severe and lead to complications such as heart problems, developmental delays in children, and even increased risk of infections.
This means that it is essential to ensure that we are consuming enough iron in our diets to prevent any iron deficiency.
By far the best sources of Iron can be found in both animal and plant-based foods:
Animal-based foods: such as red meat, poultry, and fish, contain a type of iron called heme iron, which is easier for the body to absorb.
Plant-based foods: such as beans, lentils, tofu, spinach, and fortified cereals, contain non-heme iron, which is less readily absorbed by the body. However, you can increase the absorption of non-heme iron by consuming it with vitamin C-rich foods such as citrus fruits, tomatoes, and peppers.
For those with joint hypermobility syndromes, you may have a higher risk of developing an iron deficiency due to increased inflammation, joint pain, and muscle fatigue, which can lead to a loss of blood and a decrease in iron levels. When the body experiences inflammation, it can result in the breakdown of red blood cells, which causes a loss of blood and subsequently decrease iron levels.
Likewise, it is not uncommon for those with hypermobility to have a decrease in physical activity levels to avoid subluxation/dislocation and pain. However, reduced physical activity can lead to a decrease in appetite, which can make it difficult for people to consume adequate amounts of iron-rich foods.
So, it’s important for those with hypermobility to be aware of these risks and to take steps to ensure that they do consume sufficient iron through their diet or supplements.
Additionally, for those who are vegetarian or vegan, It’s important to be mindful of your iron intake, as plant-based sources of iron are not as easily absorbed by the body. You may need to consume more iron-rich foods or consider taking an iron supplement. Again, too much iron can also be harmful, so it is important not to exceed the recommended daily intake of iron.
As I mentioned before, there is a huge lack of good research looking into EDS and diet, however, one study found that a protein (dZIP13) is mainly responsible for transporting the iron out of cells and into the secretory pathway, which is essentially a way that cells move proteins around the body. This is important for people with joint hypermobility and EDS. because iron deficiency can cause a lot of fatigue and other symptoms. The study, focusing on the Spondylodysplastic form of EDS also found that while dZIP13 can transport zinc, it primarily affects iron levels in the body. This is important because some people with EDS have mutations in the ZIP13 gene that affect how it functions, which can lead to problems with collagen synthesis and other issues. So, understanding how dZIP13 works and how it affects iron levels can help researchers develop better treatments for people with EDS and other conditions.
Overall, identifying and addressing nutrient deficiencies can significantly improve symptoms of fatigue for those with EDS and Joint hypermobility Syndromes, and it is really important to prioritize a nutrient-rich diet and work with healthcare professionals to ensure you are getting the nutrients your body needs to function optimally.
Is there such a thing as the best diet for hypermobility and EDS?
Given what we have discussed above, because of the many systemic issues that come with hypermobility and EDS, there doesn’t seem to be a “best diet for hypermobility”, as each case is going to be unique. So, whilst there doesn’t seem to be a one size fits all approach, is there a diet that seems to be well received by those with hypermobility?
Out of a myriad of diets available to choose from, one diet, in particular, seems to be well received by those with hypermobility, and that is the low fermentable oligosaccharides, disaccharides, monosaccharides and polyols diet, often referred to as the FODMAP Diet. However, it’s always important to note, that working with a professional when it comes to your diet is going to be far more efficient and safer than going it alone.
So what is the FODMAP diet?
FODMAP is not a single entity, but a group of compounds, including oligosaccharides (fructans, fructo-oligosaccharides = FOS and galacto-oligosaccharides = GOS), disaccharides (lactose), monosaccharides (fructose), and polyols (sorbitol, mannitol, maltitol, xylitol, polydextrose, and isomalt).
This rather long-winded acronym refers to foods classed as short-chain carbohydrates, or in other words, sugars that aren’t very well absorbed in the small intestine, meaning they force water into your digestive tract, and your gut bacteria ferments them, increasing gas and short-chain fatty acid production. People are generally assigned to a FODMAP diet to eliminate these foods as a means of reducing symptoms of irritable bowel syndrome (IBS) and small intestinal bacterial overgrowth (SIBO).
However, research suggests that a strict long-term, low-FODMAP diet may negatively impact the intestinal microbiome. After the initial strict period (which we will talk about in a moment) the FODMAP diet should be followed up by relaxed FODMAP restriction that enables the inclusion of prebiotic FODMAPs while still maintaining symptom relief.
With many anecdotal reports, and indeed some very interesting research, the FODMAP diet seems to be helping a lot of people with hypermobility and EDS. We could perhaps even say that it is quickly becoming considered a first-line dietetic intervention for conditions such as EDS.
Whilst not an amazing body of research exists for the FODMAP diet, many studies have demonstrated that the low FODMAP diet achieves a significant improvement in symptoms such as bloating, IBS, abdominal pain, and flatulence, in those with hypermobility compared to a standard diet.
Studies also suggest that a low FODMAP diet has greater improvement in hypermobility patients than non-hypermobile patients when it comes to issues such as IBS symptoms (pain, diarrhoea, bloating and constipation). This, of course, comes as no great surprise, considering how many of those with hypermobility have gastrointestinal symptoms, so anything focused on helping these areas is bound to be received well. What we here at The Fibro Guy like about the FODMAP diet, is that it is especially low in histamine, and has the potential to reduce debilitating symptoms of conditions like MCAS.
How do you do the low FODMAP diet?
As far as hypermobility diets go, the low FODMAP diet is pretty easy to follow. What people seem to struggle with is the sheer restrictions on this diet. However, if you can muster the willpower to get through this diet, the evidence shows that for most, it promises to be very effective at reducing symptoms.
The hypermobility diet has only 3 steps to it:
- Eliminate: Swap out high FODMAP foods for low FODMAP foods for 6 weeks.
- Test: Over a few weeks lowly reintroduce, one at a time, FODMAPS you had swapped out, testing which negatively impacts your health.
- Stick: Once you know what FODMAPS increase symptoms, either avoid or try to limit them from your diet. The aim of this last step is to adopt a relaxed, long-term, diverse FODMAP diet. You can even retest FODMAPS in the future as often they become tolerated.
What is classed as a high FODMAP food?
Grains
- Barley
- Farro
- Semolina
- Wheat
- Rye
- Couscous.
Lactose-Containing Foods
- Soft cheese
- Cottage cheese
- Custard
- Ice cream
- Yoghurt
- Buttermilk
- Cream
- Margarine
- Milk (cow, goat, sheep).
Vegetables
- Artichokes
- Brussels sprouts
- Shallots
- Snow peas
- Cauliflower
- Mushrooms
- Okra
- Sugar snap peas
- Onions
- Celery
- Asparagus
- Beets
- Garlic
- Leeks
- Peas
- Scallions (white parts).
Fruits
Mango, Cherries, Grapefruit, Nectarines, Plums and Prunes, Apples, Apricots, Blackberries, Pomegranates, Peaches, Pears, Watermelon, Fruit juice.
Legumes
Baked beans, Chickpeas, Lentils, Kidney beans, Soybeans, Split peas, Black-eyed peas, Butter beans, Lima beans.
Sweeteners
Isomalt, Maltitol, Honey, Sorbitol, Xylitol, Mannitol, Molasses, Agave, Fructose, High fructose corn syrup.
Protein Sources
Protein foods such as meats, poultry and fish are naturally free of FODMAPs. However, processed and marinated meats may contain FODMAPs due to the addition of high FODMAP ingredients such as garlic and onion.
What is classed as a low FODMAP food?
Fruits
- Avocado
- Banana,
- Blueberry
- Cantaloupe,
- Grapes
- Honeydew melon
- Kiwi
- Lemon
- Lime
- Mandarin oranges
- Olives
- Orange
- Papaya
- Plantain
- Pineapple
- Raspberry
- Rhubarb,
- Strawberry
- Tangelo.
Sweeteners
- Brown sugar
- Glucose
- Maple syrup
- Powdered sugar
- Sugar (sucrose).
Dairy and Alternatives
- Almond milk
- Coconut milk
- Hemp milk
- Rice milk
- Butter
- Certain cheeses such as Brie camembert, mozzarella, Parmesan,
- Lactose-free products such as lactose-free milk, ice cream, and yoghurt.
Vegetables
- Arugula (rocket lettuce)
- Bamboo shoots
- Bell peppers
- Broccoli
- Bok choy
- Carrots
- Celery root
- Collard greens
- Common cabbage
- Corn (half a cob)
- Eggplant
- Endive
- Fennel
- Green beans
- Kale
- Lettuce
- Parsley
- Parsnip
- Potato
- Radicchio
- Scallions (green parts only)
- Spinach
- Squash
- Sweet potato
- Swiss chard
- Tomato
- Turnip
- Water chestnut
- Zucchini.
Grains
Amaranth, Brown rice, Bulgur wheat, Oats, Gluten-free products, Quinoa, Spelt products.
Nuts
Almonds, Brazil nuts, Hazelnuts (limit 10), Macadamia nuts, Peanuts, Pecan, Pine nuts, Walnuts.
Seeds
Caraway, Chia, Pumpkin, Sesame, Sunflower.
Protein Sources
- Beef
- Chicken
- Eggs
- Fish
- Lamb
- Pork
- Shellfish
- Tofu
- Tempeh
- Turkey
Whilst there still needs to be research conducted into specific hypermobility diets, it does look like the low FODMAP diet has the potential, and a small but growing body of evidence, to help a lot of the hypermobile population. Likey not all, but a lot. We said at the beginning that when it comes to a hypermobility diet, nothing is ever simple, and I hope by reading the above, you understand what we first meant.
We hope you have found this article on diets for those with hypermobility helpful. It’s also a great option to reach out to a registered nutritionist for help regarding your own individual circumstances.
— The Fibro Guy Team–
