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
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 cause 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?
Barley, Farro, Semolina, Wheat, Rye, Couscous.
Soft cheese, Cottage cheese, Custard, Ice cream, Yoghurt, Buttermilk, Cream, Margarine, Milk (cow, goat, sheep).
Artichokes, Brussels sprouts, Shallots, Snow peas, Cauliflower, Mushrooms, Okra, Sugar snap peas, Onions, Celery, Asparagus, Beets, Garlic, Leeks, Peas, Scallions (white parts).
Mango, Cherries, Grapefruit, Nectarines, Plums and Prunes, Apples, Apricots, Blackberries, Pomegranates, Peaches, Pears, Watermelon, Fruit juice.
Baked beans, Chickpeas, Lentils, Kidney beans, Soybeans, Split peas, Black-eyed peas, Butter beans, Lima beans.
Isomalt, Maltitol, Honey, Sorbitol, Xylitol, Mannitol, Molasses, Agave, Fructose, High fructose corn syrup.
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?
Avocado, Banana, Blueberry, Cantaloupe, Grapes, Honeydew melon, Kiwi, Lemon, Lime, Mandarin oranges, Olives, Orange, Papaya, Plantain, Pineapple, Raspberry, Rhubarb, Strawberry, Tangelo.
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.
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.
Amaranth, Brown rice, Bulgur wheat, Oats, Gluten-free products, Quinoa, Spelt products.
Almonds, Brazil nuts, Hazelnuts (limit 10), Macadamia nuts, Peanuts, Pecan, Pine nuts, Walnuts.
Caraway, Chia, Pumpkin, Sesame, Sunflower.
Beef, Chicken, Eggs, Fish, Lamb, Pork, Shellfish, Tofu and 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–
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