This is my place to collect favorite links and research studies that I think might have practical applications for POTS, dysautonomia, MCAS, Gastroparesis, Ehlers-Danlos Syndrome, autoimmune neuropathy, gut health or just feeling better. I also collect findings about willpower, because that is often the limiting factor for making changes.
POTS, Diet and Digestive Issues
- SIBO may be common among POTS patients and low-dose naltrexone may help.
- 2015 Expert Consensus: POTS patients may consider consuming up to 10-12g salt per day and 2-3L water.
- POTS Hydration and Nutrition Issues
- Cleveland Clinic’s nutrition advice for POTS
- POTS UK’s nutrition advice
- Mechanisms and management of GI symptoms in POTS
- Nutrition deficiencies in POTS by Dr. Svetlana Blitshteyn
- Wondering how different drinks compare for hydration? See Figure 3
- Metformin blocks B12 absorption which may drive autonomic neuropathy
- Carbs found to worsen POTS
Autoimmunity, Gut Health and Diet
- Study: POTS gut microbial profiles had some differences from healthy controls, but not major dysbiosis
- The seminal Fasano paper: How leaky gut contributes to autoimmunity
- Study: Salt may drive autoimmunity via effect on gut microbes.
- Study: The fast-mimicking diet may reverse autoimmunity, at least in rats with MS
- Great book explaining the theory of how leaky gut leads to molecular mimicry and autoimmunity: The Autoimmune Fix by Dr. Tom O’Bryan
- Summary: How artificial sweeteners disturb the gut microbiome
- Summary: Mushrooms may boost immunity while lowering inflammation
- Video: How common chemicals/pollutants may trigger autoimmunity and how you can reduce exposure
- Study: How immune reactions to several common foods can cause autoimmune damage to human tissues in susceptible people
- Video: Dr. Ilene Ruhoy, MD, PhD shares nutrition strategies, supplements and other practical ways to reduce inflammation in autoimmunity, for Dysautonomia International
Healing and Sealing the Gut Lining
- A Review: Glutamine for gut health
- A Review: Zinc for intestinal barrier integrity
- A Review: Omega-3 fatty acids and gut health
- Study: A protein in wheat increased intestinal permeability in ALL subjects
Histamine, Oxalate and Salicylate Food Lists:
- The SIGHI list (Swiss Interest Group for Histamine Intolerance)
- Histamine Food List by Dr. Janice Joneja
- Oxalate food list from U. Chicago
- Salicylate food lists
- WhatTheBleepCanIEat.com, a tool I made with my husband to sort through multiple food restrictions
Foods and nutrients shown to help reduce mast cell activation (usually in animal models or a Petri dish):
- Great review article of mast cell stabilizers
- Prickly pear cactus fruit juice
- 2020 list of 10 foods that are mast cell stabilizers
- Chondroitin Sulphate stabilizes mast cells in rats’ connective tissue
- Curcumin in turmeric
- Vitamins C and E
- Vitamin D, especially for allergies, asthma, EoE
- Mangosteen again
- DAO supplement (in humans, but not placebo-controlled)
- A trio of Chinese herbs
- A low-fermentation diet helped reduce histamine production by certain gut microbes associated with IBS and chronic pain (microbes were transplanted into mice from IBS patients)
- Thiamin (deficiency increases neuronal histamine in rats). A 2nd study showing same in rat thalamus.
More useful info about mast cells
- Thorough list of MCAS treatments by Dr. Afrin, Moulderings et al. (Includes list of drugs NOT to use in MCAS patients) see Tables 5-12
- How psychological stress affects mast cells
- How time of day (circadian clock) affects mast cells
- Estrogen increases mast cell activation and decreases activity of DAO (at least in guinea pigs)
- Heavy metal exposure triggers mast cells
- Fat cells release hormones/peptides that increase mast cell activation
- Mast cells are involved in metabolic syndrome, insulin resistance, type 2 diabetes, diet-associated obesity, so controlling mast cell activation may help these things
- Common food additive sodium sulphite triggers mast cells
- Excellent general article on histamines and low-histamine diet
- Dr. Larry Afrin’s amazing book
- Emergency information related to MCAS and anaphylaxis
- Dr. Gaudiani’s blog on how MCAS may contribute to eating disorders
- DailyMed database of drug excipients (and other drug info)
- Pfizer product allergy/ingredient checker
- AAAAI Anaphalaxis Emergency Action Plan Form
- Primer by top experts that includes a section on dietary management and potential supplements
- A systematic review of research that did not find sufficient evidence for efficacy of supplements or special diets in helping symptoms of ME/CFS
Ehlers-Danlos Syndrome and Joint Hypermobility
Probiotics that could help?
- A Review: A Gastroenterologist’s Guide to Probiotics. Reviews which strains of probiotics are most effective for IBS, inflammatory bowel diseases and others. Table 2 summarizes the findings.
- Study: Bifidobacterium infantis 35624 reduced markers of inflammation in people with three different inflammatory disorders, plus healthy volunteers.
- Study: Lactobacillus Rhamnosus may help prevent mast cell degranulation.
Good websites for nutrition info:
- NutritionFacts.org, where Dr. Michael Gregor shares short, riveting videos about the latest findings.
- Nutrients in Foods Tool, from Nutritionfacts.org, where you can input nutrients that you want to either maximize or avoid, and the tool provides a handy food list. Here’s another good one,.
- Dr. Gabe Mirkin’s blog, full of fascinating explanations on a variety of topics in fitness, sports nutrition, and famous medical mysteries from history.
- Selfhacked.com is the blog and collected scientific studies of a patient experimenting with the latest findings in health, healing and performance. It includes wonderful compilations of journal articles on various topics.
- The Paleo Mom website contains loads of great info about the Paleo diet and Paleo Autoimmune protocol.
- If eating for longevity is your priority, Dr. Rhonda Patrick is a rockstar. Her podcast and videos explain the latest practical findings from the world of biochemistry and translate them into practical tips we can use to stay youthful. She will have you running for the sauna with your broccoli sprouts.
- PubMed, the search engine for peer-reviewed scientific journal articles.
- ConsumerLabs.com does 3rd party testing and reviews of supplements.
- USDA Food Recalls are listed here, and you can sign up to be notified of new recalls.
- Seafood Watch has the latest info on seafood safety.
- Food ingredients allowed in the US but banned in Europe
- The Environmental Working Group has great info on toxins and pesticide safety, and produces the yearly “Dirty Dozen” and “Clean Fifteen” lists, helping consumers know which produce is of highest or lowest priority to buy organic.
- The EWG’s tap water database allows you to input your zip code and learn if there are toxic chemicals in your local water. If there are, they can direct you to the best water filter for your particular concerns.
- This podcast discusses gadgets and strategies for cooking/food prep if you have challenges from POTS, EDS or JHS.
- A kale zipper, makes kale much more convenient to cook. Now you can make kale chips in minutes.
- A vegetable spiralizer turns zucchini and other veggies into noodles.
- The best garlic twister for boosting anti-cancer properties of garlic.
- This sprouting kit has everything you need to grow your own organic broccoli sprouts, which is super easy and fun.
- The Kitchen Safe lets you lock away temptations for any length of time.
- The Detoxinista, for people who love to bake with the cleanest possible ingredients. There are also good soups and more.
- Free low-histamine recipes from Naughty Little Mast Cells.
- Healing Histamine has a variety of low-histamine cookbooks for sale.
- Allergy-friendly recipes for traditional holiday meals
- Substitute ingredients for common allergens
Researchers to Follow:
- Dr. Laura Pace specializes in the intersection of immunology, neurology and gastroenterology, which is important for those with GI issues due to neuropathy, MCAS, autoimmunity, or post-infection. She’s also a leader in technology for testing GI motility, non-IGE allergic reactions, etc. Great presentation here on post-viral GI problems.
- Dr. Datis Kharrazian has done great research on autoimmunity and how diet and lifestyle can help. He also has wonderful research showing how common environmental pollutants may be to blame (E.g., this article and many others). His weekly live Q&A sessions on FaceBook are a great opportunity for patients to ask questions and his online courses about gut health and autoimmunity are full of evidence-based practical suggestions for those of us with complex digestive or autoimmune problems.
- Dr. Mark Pimentel and his lab at Cedars Sinai Hospital in LA are the leaders in SIBO research.
- Dr. Svetlana Blitshteyn is a neurologist and researcher specializing in dysautonomia/POTS. Her publications, online presentations, blog and Twitter feed are full of incredibly helpful info for patients, such as this presentation about nutrition deficiencies in POTS.
- Dr. Leonard Weinstock is doing great research on GI issues in MCAS patients, and has given many online interviews and has created great handouts for patients, such as this one for MCAS.
- Dr. Larry Afrin is a top mast cell specialist and researcher and wrote the MCAS bible Never Bet Against Occam.
- Dr. Theo Theoharides is a top mast cell researcher, and created the line of Algonot supplements.
- Dr. Anne Maitland is a top mast cell researcher and physician and gives amazing presentations on MCAS, like this one.
- Dr. Janice Joneja has loads of great articles, books and interviews about histamine intolerance and related topics.
- Dr. Pradeep Chopra specializes in pain management for EDS, CRPS, POTS, MCAS and has wonderfully thorough presentations full of practical solutions for managing pain, such as this excellent presentation about managing EDS pain, with part 2 here.
- Dr. Neil Nathan is a leader in treating mold toxicity and other very complex diseases.
- Dr. Eduardo Beltran is putting together the puzzle pieces on vitamin D, autoimmunity, MCAS, leaky gut, and genetic variants that can alter how the body uses vitamin D.
- Dr. Valter Longo from the USC Longevity Institute has some pretty exciting findings about the benefits of fasting, but the best part is that he has figured out how we can get the benefits of fasting while still getting to eat quite a bit. His book, The Longevity Diet, summarizes his research on the Fast-Mimicking Diet (FMD).
- Dr. Terry Wahls is a leader in research about using diet and lifestyle to control autoimmune disease.
- Dr. Kelly McGonigal, a Stanford Health Psychologist, has lots of helpful findings about willpower in her book, The Willpower Instinct.
- Dr. Traci Mann runs the Eating Lab at Minnesota State U and has lots of interesting findings to report (e.g., comfort food doesn’t actually provide comfort!) in her book, Secrets From the Eating Lab.
- Dr. Roy Baumeister is the original willpower researcher and has lots to teach us in his book summarizing decades of research (including why willpower is particularly weak in the face of dieting.)
- Dr. Angela Duckworth is a psychology professor at UPenn best known for her work on grit. She also examines self-control, willpower, achievement, and how we can better stick to the healthy habits we know we should.
- Dr. Brian Wansink runs the Cornell Food and Brand Lab, which shares loads of practical research findings. You will never leave cereal sitting out on your countertop again.
- The Autoimmune Fix, by Dr. Tom O’Bryan contains the best easy-to-grasp explanation of gut health, and why everyone should prioritize optimizing it.
Food for Special Dietary Needs: (Jill is not affiliated or receiving benefits from any)
- Low-lectin chicken (Chicken is pasture-raised on low-lectin feed instead of corn or soy)
- The Honest Bison (Variety of wild/pasture-raised/grass-fed meat)
- Vital Choice Seafood (wild salmon thought to be lower histamine because it’s flash frozen on the boat)
- Burroughs Family Farms (California organic extra virgin olive oil, available in bulk)
- Local Harvest, a website to find a CSA (Community Supported Agriculture) program near you
- Imperfect Foods delivers groceries (including fresh produce) at a discount because some items have cosmetic issues
- Misfits Market is similar and mostly organic
- Integrated Therapeutics Physicians Elemental Diet
- Vivonex Plus elemental powder
- Essential Care Jr. Unflavored hypoallergenic amino acid nutrition powder
- Kate Farms plant-based shakes and tube feeding formulas (includes many “super-foods” but also has large ingredient list)
- Liquid Hope organic whole-food feeding tube formula
- Nourish organic whole-food feeding tube formula
- Neocate hypoallergenic shakes and powders
- Elecare amino acid-based nutrition powder
- DoodleThru: Comics about the challenges and absurdities of living with dysautonomia, POTS, gastroparesis, EDS, autoimmunity, SIBO and the likes.