Hypermobility and Your Tummy  Part 3

Admin Good Health Uncategorized

Diet, HSD, hEDS and Gut Problems

Through the past two blog posts we have considered the kind of tummy problems which often plague people with hypermobility spectrum disorder (HSD) and hypermobile Ehlers-Danlos syndrome hEDS). As we have discussed, there are medical treatments for many of these problems and sometimes treatments which physical therapists can provide, but diet is such an important topic that we will devote this third and final post to it.

As important as diet is, our discussion must be limited — for two reasons. First, any clinician who treats patients with HSD and hEDS will tell you that while there are many common patterns, every patient’s presentation and experience is different. This variability is true with diet too. While there are some good general rules for diet and even some specific dos and don’ts for certain illness patterns, there are no fixed rules for everyone. A short way of saying this is that just because a food may be considered healthy, doesn’t mean it will work for you.

Second, there is still so much that is not known. In reviewing the medical literature for this post, we looked for actual studies with subjects in which different dietary approaches were taken and evaluated with different subjects. These are very rare. There is a desperate need for real research in this area. Yet there are a few science-based healthcare providers trying to shine a light in this area. One of those is Heidi Collins, MD.

Dr. Collins is a physiatrist, a medical doctor specializing in physical medicine and rehabilitation, who has given a number of talks on this subject which are available on YouTube and through the Ehlers-Danlos website. Dr. Collins also has hEDS. We will rely on her lecture notes a good deal here.

The Overall Goal:

After so many words being devoted to how gut problems for most people with HSD and hEDS can be understood through the model of structure, nervous system, inflammation, and the functional overlap between these, it seems a good idea to  start with two goals for diet.

  1. Avoid or reduce negative food reactions.
  2. Maximize nutrition for optimal health.

General Dietary Guidelines {21, 22, 23, 27}

These general guidelines are focused on reducing gut inflammation and with this gut wall permeability (“leaky gut”) and maximizing nutrition.

  1. Eat small meals at frequent intervals. Smaller meals can help your system digest food and eating 4-6 meals, or 3 meals and 2-3 snacks, can help avoid cravings and keep blood sugar level.
  • Drink plenty of fluids, especially water minimizing or eliminating caffeine and alcohol. The US Academy of Sciences suggests 3-4 liters of water through the course of a day depending on activity level. Adding electrolytes to this is quite common especially for people with signs and symptoms of dysautonomia. Often, sodium is tracked to attain the right level of electrolyte replacement with a target of 3-20,000 mg per day. (Note 1,000 mg is 1 gram. Only the MOST SEVERE cases of POTS would supplement at the 20-gram level). Both POTS and MCAS do not tolerate alcohol well. Depending on the level of dysautonomia, some to no caffeine may be tolerated.
  • Eat real food. Popular nutrition author Michael Polan coined the phrase, “Eat food, mostly plants, not too much.” And overall, this is a good summary of a healthy diet.
    • Never eat long shelf-life processed or preserved foods. In other words, avoid additives and preservatives as well as artificial flavors and colors. For sensitive individuals, avoiding preservatives can include the additives in the packaging materials.
    • Eliminate rapidly absorbed carbohydrates. Nutritionists have developed the glycemic index. This is a scale from 0-100 comparing how rapidly a carbohydrate is absorbed into the bloodstream compared to pure glucose (100). Only carbohydrates have a glycemic index rating, oils, fats, proteins do not. The lower the rating of the carbohydrate the better, and as a rule staying at 50 or below is helpful. There are books available which give the glycemic index of specific foods. With this important guideline there are some other important recommendations:
      • No artificial sweeteners or “natural” non-sugar sweeteners such as aspartame (NutraSweet) , neotame, advantame, sucralose and saccharin, stevia, agave, monk fruit extract, sorbitol, lactilol, xylitol.
      • No high fructose corn syrup.
      • Consume natural sugars such as honey, molasses, brown sugar, coconut sugar, cane, or beet sugar conservatively – in other words in moderation.
      • Eat organic fruit in moderation.
    • Consume non-GMO vegetables, seeds, and nuts. GMO means “genetically modified organism.” Telling which foods are GMO can be challenging. Do your best. In the meantime, remember, feeling afraid of your food can be as harmful as eating a few things that are not perfect for you.
    • Limit red meat.
    • Eat salt liberally (especially if you have signs of dysautonomia or POTS).
  • Avoid your triggers. After reading the blog posts about MCAS, we hope you are on the lookout for foods, environmental factors, and emotional states that trigger feeling ill.
  • Generally, eating foods high in dietary fiber such as whole grains, raw or lightly cooked non-starchy vegetables and most fruits, is helpful in moving waste through the digestive system.
  • Eat probiotics and prebiotics daily. Probiotics are supplements of the bacteria that live in your gut. This is a rapidly evolving area of nutrition and food science. Prebiotics are foods which pass through the gut and into the colon. This normally means that they are high in various kinds of fiber which feed the gut bacteria. Examples of pre-biotics can include: potatoes, bananas, barley, oats, asparagus, burdock root, garlic, leeks, onions, soybeans, yams, apples, apricots, carrots, green beans, peaches, raspberries, tomatoes. Those of our readers who have irritable bowel syndrome may note that some of the items on this list are irritants for your condition, so avoid them. Also, some patients, especially those of northern European heritage, may find that members of the nightshade family (tomatoes, potatoes, bell peppers and eggplant) cause increased inflammation.

Common Dietary Exclusions {13, 21, 22, 23, 27}

Some foods may increase the body’s load of histamine, one of the main inflammatory chemicals involved in MCAS. Some foods that are considered to be high in histamine include: alcoholic beverages; fermented foods and those with vinegar in them; foods with gluten (bread, beer, and others); chocolate (sigh!); aged cheeses; leftovers (the longer a food is left over the more histamine builds up); preserved meats; soy milk and soy products; some fruits including strawberries, citrus and bananas; some vegetables including spinach, eggplant, tomato and avocado. The low FODMAP diet discussed below may suppress the release of histamine.

Milk and gluten sensitivities are more common among patients who are on the hypermobility spectrum. And even more than sensitivity, full celiac disease is more common among hypermobile patients. As a rule, and especially when testing foods to see if they are triggers, eliminating casein, gluten and zein can be a good place to start; this means eliminating dairy, wheat, and corn. If corn is found to be a trigger or poorly tolerated, then caution may be needed regarding the food source of meat consumed. Many commercially farmed animals are fed a diet high in corn and so their tissues may be full of corn protein whereas grass-fed meat or free-range poultry will not be.

Finally, alcohol consumption should be limited as both dysautonomia/ POTS and MCAS usually respond poorly to alcohol consumption.

There is no fixed rule about what foods need to be eliminated from the diet. This is very individual. We recommend collaborating with a practitioner who takes an individual approach.

FODMAP Diet {24, 25, 26, 27}

A common diet for irritable bowel syndrome (IBS) and at times for small intestine bacterial overgrowth is the FODMAP diet. FODMAP is an abbreviation and refers to a diet low in “Fermentable Oligo-, Di-, Monosaccharides, And Polyols.” These substances are found in many common foods.

FODMAPS are a large class of small nondigestible carbohydrates, containing 1-10 sugars which are poorly absorbed in the small bowel. FODMAPs can be found in a range of very common and different foods such as fruits, vegetables, legumes, and cereals, honey, milk and dairy products, and sweeteners … All FODMAPs are potential triggers, but fortunately, not all FODMAPs exacerbate abdominal symptoms in the same IBS patient… The low-FODMAP approach is not simply an “avoidance diet”. It is a diagnostic tool to test the patients’ tolerance to some foods, enabling them to eliminate them from their diet and to make significant changes to lifestyle. (24, pg. 1-2)

Since there are many foods that are considered high in FODMAPs, we do not feel it would be useful to go into a list of them here. This may simply serve to frighten some readers who would benefit from the diet. Instead, we recommend working with a practitioner who can give support and advice, or at least obtaining one of a number of good books available on how to implement the diet preferably one with specific recipes.

We will note though that one of the problems with a low FODMAP diet is that the foods consumed may result in a low intake of dietary fiber leading to or worsening constipation. It is recommended that patients on the low FODMAP diet supplement fiber.

Supplements {21}

 As mentioned earlier in this post, Heidi Collins, MD, is a medical doctor who has specialized in working with patients with hypermobility and hypermobile Ehlers-Danlos syndrome. She has found in her practice that many hypermobile patients are significantly deficient in numerous nutrients. Most notably she has found the need for supplementing Vitamin B6, vitamin D3, vitamin C, vitamin B12, zinc and often iron. In certain situations, she recommends taking quercetin, a supplement which can support mast cell stabilization, curcumin as an anti-inflammatory. We recommend her lecture on this subject for more specific dosage recommendations. {21}

In 2024, we hope to look at some of the following topics and how they relate to hypermobility: sleep apnea, fibromyalgia, and dystonia. Until then, Cheers!

Zebbie & Mark

Zeborah Dazzle, PT, WWF and Mark Melecki, PT, DPT, OCS

References:

  1. Wong, S., et. al, The Gastrointestinal Effects Amongst Ehlers-Danlos Syndrome, Mast Cell Activation Syndrome and Postural Orthostatic Tachycardia Syndrome. AIMS Allergy and Immunology, 6(2): 19-24, DOI: 10.3934/Allergy.2022004
  2. Beckers, A.B., et. al., Gastrointestinal Disorders in Joint Hypermobility Syndrome/ Ehlers-Danlos Syndrome Hypermobility Type: A Review for the Gastroenterologist. Neurogastroenterology & Motility 2017; 29:e13013: 1-10; doi.org/10.1111/nmo.13013
  3. Castori, M., et. al., Gastrointestinal and Nutritional Issues in Joint Hypermobility Syndrome/ Ehlers-Danlos Syndrome, Hypermobility Type. American Journal of Medical Genetics Part C (Seminars in Medical Genetics) 169C: 54-75 (2015); doi 10.1002/ajmg.c.31431.
  4. Thwaites, P, et. al., Hypermobile Ehlers-Danlos Syndrome and Disorders of the Gastrointestinal Tract: What the Gastroenterologist Needs to Know. Journal of Gastroenterology and Hepatology 37 (2022) 1693-1709; doi:10.1111/jgh.15927
  5. Farmer, A.D. & Aziz, Q., Visceral Pain Hypersensitivity in Functional Gastrointestinal Disorders. British Medical bulletin 2009; 91: 123-136; doi:10.1093/bmb/ldp026.
  6. Camilleri, M., The Leaky Gut: Mechanisms, Measurement and Clinical Implications in Humans. Gut 2019 August; 68(8): 1516-1526. Doi:10.1136/gutjnl-2019-318427
  7. Freiling, T., et. al., Evidence for Mast Cell Activation in Patients with Therapy Resistant Irritable Bowel Disease. Z. Gastroenterol 2011; 49:191-194. http://dx.doi.org/10.1055/s-0029-1245707.
  8. Gottfried-Blackmore, A., et. al., Open Label Pilot Study: Non-Invasive Vagal Nerve Stimulation Improves Symptoms and Gastric Emptying in Patients with Idiopathic Gastroparesis. Neurogastroenterol Motil. 2020 April; 32(4): e13769.doi:10.1111/nmo.13769
  9. Frokjaer, J.B., et. al., Modulation of Vagal Tone enhances Gastroduodenal Motility and Reduces Somatic Pain Sensitivity. Neurogastroenterol Motil (2016) 28, 592-598; doi:10.1111/nmo.12760
  10. Cirillo, G., et. al., Vagus Nerve Stimulation: A Personalized Therapeutic Approach for Crohn’s and Other Inflammatory Bowel Disease. Cells 2022, 11, 4103; https://doi.org/10.3390/cells11244103
  11. Kohn, a., Chang, C., The Relationship Between Hypermobile Ehlers-Danlos Syndrome (hEDS), Postural Orthostatic Tachycardia Syndrome (POTS), and Mast Cell Activation Syndrome (MCAS). Clinical Reviews in Allergy & Immunology (2020) 58: 273-297; https://doi.org/10.1007/s12016-019-08755-8.
  12. Uy, P., et. al, SIBO and SIFO Prevalence in Patients with Ehlers-Danlos Syndrome Based on duodenal Aspirates/ Culture. The American Journal of Gastroenterology 116, PS218-S219, October 2021; doi:10.14309/01.ajg.0000774444.60980.27
  13. Danese, C., et. al., Screening for Celiac Disease in Joint Hypermobility Syndrome/ Ehlers-Danlos Syndrome Hypermobility Type. American Journal of Medical Genetics Part A 9999:1-3.
  14. Torres, J., et. al., Crohn’s Disease. Lancet 2017; 389: 1741-1755; http://dx.doi.org/10.1016/S0140-6736(16)31711-1.
  15. Alomari, M., et. al., Prevalence and Predictors of Gastrointestinal Dysmotility in Patients with Hypermobile Ehlers-Danlos Syndrome: A Tertiary Care Center Experience. Cureus, 2020, 12(4): e7881; doi.10.7794/cureus.7881
  16. Asamoah, V., https://www.ifm.org/news-insights/identifying-ibs-root-causes/?utm_campaign=gi&utm_content=263702330&utm_medium=social&utm_source=linkedin&hss_channel=lcp-3054131
  17. Rao,SSC, et. al., Small Intestinal Bacterial Overgrowth: Clinical Features and Therapeutic Management. Clinical and Translational Gastroenterology 2019; 10:e00078. https://doi.org/10.14309/ctg.0000000000000078
  18. Porter, R., et. al., Ulcerative colitis: Recent Advances in the Understanding of Disease Pathogenesis. F1000Research 2020, 9(f1000 Faculty Rev): 294: 27 April 2020.
  19. Kucharzik, T., et. al., Ulcerative Colitis – Diagnostic and Therapeutic Algortihms, Deutches Aertzeblatt International 2020; 117: 564-574
  20. Farzaei, M, et. al., The Role of Visceral Hypersensitivity in Irritable Bowel Syndrome: Pharmacological Targets and Novel Treatments. J Gastroenterol Motil, 22(4), October 2016, 558-574; http://dx.doi.org/10.5026/jnm16001.
  21. Collins, H., Diet and supplement Guidelines for Persons with Ehlers-Danlos Syndrome. You Tube: https://www.youtube.com/watch?v=pEfuB-UWRZM. 2020.
  22. Collins, H., Nutritional Approaches to Treating GI Concerns in Persons with Ehlers-Danlos Syndrome. You Tube: https://www.youtube.com/watch?v=VxChn-pFS-s . 2020.
  23. Brown, A., et. al, Existing Dietary Guidelines for Crohn’s disease and Ulcerative Colitis. Expert Reviews Gastroenterology and Hepatology 5(3), 411-424 (2011)
  24. Bellini, M., et. al., Low FODMAP Diet: Evidence, Doubts, Hopes. Nutrients 2020, 12 (148); doi:10.3390/nu12010148, 1-21
  25. Hill, P., et. al., Controversies and Recent Developments of the Low-FODMAP Diet. Gastroenterology and Hepatology, 13(1), January 2017, 36-45.
  26. Barrett, J., How to Institute the Low-FODMAP Diet. Journal of Gastroenterology and Hepatology 2017; 32(Suppl. 1), 8-10.
  27. Stott, P. J and Purdin, H. Taming the Zebra, It’s Much More than Hypermobility. Portland, OR: Tamed Zebra Publishing. C. 2023. ISBN 979-8-9892794-0-1. Chapter 6, pages 95-115.