Wow the time flew this year! We all got used to a new way of life, and for those with chronic pain issues, hunkering down in your house wasn’t too different from before quarantine.
Ehlers Danlos syndrome is a complex constellation of symptoms; every day is different, and surprising, in that we never know what we are going to get. Sometimes you can have an unbelievably productive day filled with energy, and the next day can be soul-sucking, where we don’t even have the energy to get up off the sofa to make a sandwich.
So what can we do about this? Well, doctors have a few tricks up their sleeves, and physical therapy is a great way to improve body strength which can help to support us. What is left, which no one really talks about, is nutrition.
I want to support the warriors of our community, and I would love your help! If you have 10 minutes to answer some questions for me, I would be ever so grateful. Your entry will entitle you to enter a lottery to win a $20 Amazon gift card as a thank you for your time. You can fill out the form HERE.
I have committed to helping EDS warriors feel better with nutrition, and with your help this survey will help me better serve you. I want to focus on your needs and your goals, so that we can achieve success together.
Sending all my zebra warriors gentle hugs and prayers for safety in these uncertain times 💚. If you would like to start eating to reduce your symptoms, click HERE for some healthy breakfast ideas.
Click HERE to watch me talk more about Ehlers Danlos Syndrome and Nutrition with Jeannie di Bon.
I try not to get too excited about research, but I can hardly contain my excitement! There is so much misrepresentation with regards to the use of a ketogenic diet as medical nutrition therapy. Today, a study was published, which you can read HERE.
Dr. Yadav looked at the gut microbiome of patients who had mild cognitive decline. He found a positive correlation with decreased markers of Alzheimer’s disease when patients consumed a Mediterranean Modified Ketogenic Diet (MMKD). This may just be the first human study on brain health and the MMKD protocol.
Additionally, this study is important because it shows that the bacteria in the gut can affect a person’s brain health. This is huge!
The study was well-designed, and I can only hope it is the first of many to come. Practicing nutrition is truly my life’s calling. Waiting for the science to catch up takes a lot of patience. As always, I continue to be on the lookout for the latest information to help those with neuro-inflammatory conditions. This Registered Dietitian will never stop fighting for you guys!
Coffee is one of those foods that the media seems to flip flop on – can you boost your health with coffee? Is coffee a natural superfood? It is hard to know what is true and what isn’t when it comes to social media, so let’s clear up some confusion and shed light on the science-based benefits of quality coffee.Â
Can I just say that I love coffee? I actually have learned to drink it black! Following the MMKD protocol has helped me to develop a taste for pure foods. A single cup in the morning is all I need- it isn’t about the caffeine, but the slow sipping that offers up a calmness with which to start my day and set my intentions. It is like a cup of meditation.
Many of you will be glad to hear that there is science to support the benefits of drinking coffee. However, when it comes down to it, quality really does matter.Â
Choose a clean & healthy coffee
A heaping spoonful of low quality instant coffee, or the coffee you might buy at most gas stations, will likely use the cheapest, lowest quality coffee beans (usually selected based on price alone). These beans may contain a higher ratio of bean defects (such as insect damage, over-fermentation, and oxidization) and higher levels of mold. Plus, the coffee might be stale. Many of the benefits of the coffee compounds will still be present, contaminants that can cause adverse health effects may also be hiding in there too.
It is best to find a coffee that’s tested to be free of contaminants, like Purity Coffee.
Purity Coffee is the only coffee that is produced with health benefits in mind. Every step of the way, from organically grown plants to fresh, nitrogen-flushed bags, they make sure the coffee is pure and clean. Not only is Purity Coffee free of contaminants, but it is roasted to have the highest concentration of antioxidants and the lowest risk of carcinogenic compounds. You can be confident that your health is in good hands when you brew Purity Coffee at any temperature.
Here are five ways coffee can boost your health:
It contains antioxidants
The key ingredient is a group of antioxidants known as chlorogenic acids, or CGAs. These components protect you from damaging free radicals. Free radicals are unstable atoms which can damage cells, contribute to diseases and cause aging. CGAs (antioxidants) eliminate these oxidizing molecules in the body. That’s why they’re called “antioxidants.â€Â
Athletes who took in caffeine pre-exercise burned 15% more calories for three hours post-exercise than those who didn’t.
A little caffeine post-workout may have benefits too. Compared to consuming carbohydrates alone, a caffeine/carb combo was shown to increase muscle glycogen by 66% after intense exercise, allowing athletes to exercise harder and longer next time.
3. It can help lower risk of Type 2 Diabetes
This 2014 study showed that participants who increased their coffee consumption by more than 1 cup per day over a 4 year period had an 11% lower risk of type 2 diabetes in the subsequent 4 years compared with those who made no changes in their coffee consumption. Participants who decreased their coffee intake by more than 1 cup per day had a 17% higher risk for type 2 diabetes.
4. It can reduce the risk of liver disease
This meta-analysis suggests a 40% reduced risk of liver cancer in coffee drinkers. Research also suggests that coffee consumption is associated with a lower risk of other liver conditions as well.
5. It can keep your heart healthy
This recent study suggests a lower risk of atrial fibrillation among men who consume 1-3 cups of coffee per day. Atrial fibrillation is when the heart beats irregularly. Symptoms typically include heart palpitations, light-headedness, and chest pain.
6. It can decrease risk of developing Cancer
Coffee is valued for its high antioxidant value and phytochemicals, so it is no surprise that coffee has been linked to lower risk for certain types of cancers. It may also promote longevity. According to the American Institute for Cancer Research, “coffee drinkers may live longer than non-coffee drinkers, having lower risk of dying from many cancers – as well as other chronic diseases.” You can read more about the research on the AICR website here.
Drink it hot or pour yourself a nice glass of cold brew…
Because coffee acids are better extracted at high temperatures, cold brew can be up to 60% less acidic than hot brewed coffee. Many people love the smoother, sweeter flavor of cold brew. Since fewer acids are extracted than from a typical heated brewing process, it doesn’t have the same bitter bite to it that can be off-putting for some.
Did you know- you can even cook with coffee!
Coffee isn’t just for drinking! Use the grounds in anything from baked goods, smoothies, energy bites, or mixed into marinades for steak or fish.
Enjoy the recipe below for a yummy coffee flavored nut butter.
Vegan Coffee Bean Cashew Butter
2 cup cashews, raw, soaked
1 Tbsp Purity coffee beans, ground
1 tsp vanilla extract
salt, to taste
1 Tbsp Lakanto Monkfruit Syrup
Prep
Place cashews in bowl and cover with hot water. Let stand for at least 1 hour or overnight.
Add all ingredients in food processor and process until smooth and creamy.
Enjoy with sliced apple or on spread on almond crackers!
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A low histamine diet consists of eliminating foods that are either high in histamines or provoke a histamine response the body. Histamine is, in medical terminology, a biogenic amine. This means it can cause mast cells to release chemicals that will result in the following symptoms:
Hives
Itchiness
Swelling
Flushing
Congestion
Gastrointestinal issues
Headaches
Irregular heartbeat
Low blood pressure
Trouble breathing
Anaphylaxis
DAO (diamine oxidase) is the main enzyme for metabolizing histamine. Some foods can also inhibit this enzyme, which can lead to more circulating histamine in the body. Higher blood histamine levels will elicit the symptoms mentioned above.
So who needs a low histamine diet? Those who are diagnosed with Mast Cell Activation Syndrome (MCAS), Mastocytosis, and those who suspect they might be suffering from histamine intolerance. It is important to note that unlike an IgE-mediated allergy, where even a small amount ingested can cause a reaction, with mast cell disease and histamine intolerance, the amount of histamine ingested and/or generated is important in determining if a reaction will occur and how severe it will be.
And, guys, this is where implementing the diet can get tricky; not every person will react to the same foods! The Swiss Interest Group Histamine Intolerance (SIGHI) has put together a comprehensive list of foods to avoid which are high in histamine and foods that are histamine liberators, meaning they provoke the body to release histamine. The list can be found HERE and it is considered a good place to start. However, a skilled registered dietitian is necessary to help you eliminate foods and then reintroduce them, looking for patterns to identify your individualized triggers.
Why the need to be monitored by a health professional? Because it is important not to limit yourself to only a few safe foods. A registered dietitian specializing in a low-histamine diet can make sure you are not compromising your nutrient intake. If you have a mast cell disease and want to trial a low histamine diet, click HERE to grab your complimentary meal plan.
Click HERE to watch me speak more about nutrition and how to eat to reduce symptoms of mast cell disease and mastocytosis.
What a whirlwind of a week! The polar vortex swept in just about the time I boarded a plane to (supposedly) sunny California to present my case study on Ehlers Danlos Syndrome and the Ketogenic Diet at the 2019 Metabolic Health Summit.
California was MUCH warmer than New Jersey, but unfortunately rainy. Wet weather didn’t bother me a bit, though, because I stayed inside savoring every word I heard from some truly amazing physicians and researchers presenting their incredible research on the new horizon of ketogenic nutrition and metabolic diseases.
Perhaps the most astounding fact I learned was presented by the esteemed Dr. Sarah Hallberg: only 12.2% of people in the United States are considered metabolically healthy. The implications of this are far-reaching. Our country is sick, and we need to change dietary habits to remedy it. Lectures on brain health, heart health, and metabolic health were discussed at length. Breakout sessions were peppered with inspiring stories of personal change and motivation to education the public.
One more fun fact I learned: Babies are born into ketosis and mother’s milk contains medium-chain triglycerides to keep babies in a state of ketosis so the brain can access fat! Fat is an essential part of brain development, so this is likely nature’s way of optimizing it. Very fascinating!
I learned so much regarding the science behind this 100-year old medical grade diet, which is slowly being adopted as a better way to eat, when done under proper medical and/or dietetic supervision. We have lived for decades in fear of dietary fat, when all along it has actually been the simple carbohydrates like sugar causing us to fall ill. Think back to the 1980s when we swapped fat for carbs in products such as Entenmanns and Snackwells- the rate of obesity and diabetes have skyrocketed since.
Most interesting to me was the science behind “insulin resistance” in the brain, which does not utilize glucose as it should. Some neuro-inflammatory brain diseases have shown reversal with a proper ketogenic diet.
I would like to thank my fellow dietitian colleagues, Beth Zupec-Kania and Laura Shammah for guiding me and being my support system through my professional journey. I would also like to give a shout out to the inspiring dietitians I met at the Metabolic Health Summit, Heather Ayala, Catriona Kiernan, L.J. Amaral, and Tara Finnerty.
Bonnie Nasar RDN, Healther Ayala MS RD, and Caitriona Kiernan RD at the Metabolic Health Summit
And let’s not forget the speakers! Here is a partial list of the phenomenal speakers from which I had the privilege of learning. Click on each name to watch the docs in action via YouTube :
I also had the pleasure of meeting Audra Wilford co-founder of the MaxLove Project , an organization that gives support to families with children diagnosed with brain tumors, and James Abrams, co-founder of The Charlie Foundation, an organization that supports epileptic patients and their families with the ketogenic diet. I was interviewed by a wonderful Functional Medicine physician, Dr. Paulina Vega, from Chile, which was such a treat!
A very sincere thank you to the powerhouse trio that put on such an amazing Metabolic Health Summit- Angela Poff, Victoria Field, and Dominic D’Agostino. I am so grateful I had this opportunity to further my knowledge of metabolic disease as it relates to nutrition, and I look forward to integrating this cutting edge information into my private practice.
There is always going to be a study supporting one diet or product over another. So how are we to decide what is sound medical/nutrition advice? Let’s break it down into the right questions to ask:
1.Can you find the source of the study? You will find many Instagram posts, diet guru articles, and news outlets stating “Studies show….”. If a specific study is cited, find it and read it. Find out who sponsored the study, how large the study was, etc. For example, if a study is done on the positive effects of soy on health, but was sponsored by the American Soybean Association and had only 10 patients in it, we don’t put much stock in that. However, if the study was out of an unaffiliated center, and had hundreds of participants, we can consider it more valid. (There are still many other factors involved, but this info will quickly tell you if you should close your browser window on an article or keep reading).
2. Who is giving you the information? There are many influencers on social media today who are paid to give their two cents. Are they experts? No! They are the modern day equivalent of a paid T.V. commercial ad. Ask yourself, is this a medical professional? What is their degree? Is it accredited and nationally recognized?
3. Are they trying to sell you something? Many times you will find what is called “click-bait” online. Pseudo-practitioners will cite studies showing that they have a miracle product. If something seems too good to be true, it is. Real medical practitioners know that science is an ever-changing field of study, and will not promote miracle cures. Any product or supplement that claims to “cure everything” will at best swindle you out of your money, or at worst, harm you with unsafe ingredients.
Those with chronic illnesses such as Ehlers Danlos Syndrome, Postural Orthostatic Tachycardia Syndrome, and Mast Cell Disease are at particular risk of being taken advantage of since there aren’t many treatments available. Be careful what you read out there- ask questions! Knowledge is power, but only if the knowledge comes from reputable sources.
Many people like to start off the new year with a resolution or two. I prefer to start it off with a blessing for all of my followers. When we put things out into the universe, the universe hears us!
So for all of you reading, may you be blessed with the ability to try new remedies and to figure out your triggers (and avoid them). May your troubles improve, and your happiness & health leap to new bounds.
I wish for you a year filled with better things! You don’t know how strong and capable you are until you try!
Dysautonomia can affect many Ehlers Danlos Syndrome patients. It is the dysfunction of the autonomic nervous system (ANS) and the symptoms can be quite debilitating. Most commonly, patients complain of resting tachycardia (elevated resting heart rate), orthostatic hypotension (blood pressure is too low when standing up), breathing issues, gastrointestinal and genito-urinary issues, and excessive sweating.
POTS, or Postural Orthostatic Tachycardia Syndrome falls under the dysautonoia umbrella. It is a condition where your heart rate is increased by 30 beats per minute (BPM) upon going from a lying down to a standing position.Â
I had a recent bout myself of a flare, and it was not fun! There are a few things we can do to help alleviate dysautonomia and POTS symptoms that don’t require the use of medications. However, sometimes medicine is necessary. If you find yourself feeling any symptoms, call your physician.
From a nutrition perspective, it is very important to have the right ratio of fluid and electrolytes in the body. It is advisable to consume two liters of water per day. While most people are told by their doctors to limit salt intake, POTSies need their salt. The general recommendation is to consume 3-5 grams of salt per day. Diet can also play an important role. Limiting carbs and eating lean proteins can improve symptoms. Caffeine and alcohol can also contribute to worsening of symptoms. It is also important to address any nutrient deficiencies, as some of them can contribute to symptoms as well.
Dysautonomia and POTS are complicated syndromes and require a skilled practitioner to help navigate. Nutrition is known to play a large role in the exacerbation of symptoms. Sometimes it is hard to tell which symptoms are from Ehlers Danlos Syndrome and which are from dysautonomia. Seek the help of a registered dietitian or physician (who specializes in this condition) if you experience a flare. Sometimes careful analysis of diet, supplementation, hydration, and activity with a skilled practitioner can find the trigger and help you to feel better.
New York Institute of Technology Ehlers-Danlos Syndrome/Joint Hypermobility Center hosted a patient and practitioner EDS symposium yesterday. It was a jam-packed day of learning and networking! This wonderful day was hosted by Dr. Bernadette Riley, Director of the NYIT EDS Center. I was super-psyched to learn from all these great physicians. Unfortunately, nutrition was not one of the topics of discussion, but if you would like to know more, read my blog about my favorite EDS supplements HERE.
First to speak was the truly amazing Dr. Anne Maitland, who reminded us that EDS is not just a musculoskeletal condition; mast cells are influenced by connective tissue, and vice versa! Mast Cell Activation Disorder (MCAD) is often co-morbid with EDS. Mast cells act as the body’s border patrol just under the skin. They approach any invaders shooting mediators like histamine, prostoglandins, cytokines, etc at them. They are our first line of defense. Dr. Maitland cautioned practitioners not to dismiss smaller symptoms when evaluating for MCAD. If two organs are involved symptom-wise, MCAD should be worked up. Once you diagnose MCAD, it is important to figure out what exactly is causing the mast cells to fire off their mediators and eliminate the triggers, which can be food, environment, stress, or illness. The most exciting part of her talk, was the announcement of the release of her book, “In Sickness & In Health” being released next week!
Next up was Dr. Guy Mintz, Cardiologist. He enlightened us about the importance of EDS patients getting cardiac workups to look for heart abnormalities. Chest pain can occur due to mitral valve prolapse (MVP), costochondritis, sternum subluxations, and aortic abnormalities. Palpitations can occur from MVP, orthostasis, and volume depletion. Orthostatic intolerance results from autonomic dysfunction and postural orthostatic tachycardia syndrome (POTS). Dyspnea can occur from valve disease and spontaneous pneumothorax. The recommendation is for a baseline echocardiogram. If baseline is normal, follow-up should be every 2-5 years. If baseline has findings, follow-ups should be closer together.
We then heard from Dr. Derek Brinster, Cardiothoracic Surgeon. He showed us a video of a valve repair on a patient with a connective tissue disease. Not for the squeamish, but fascinating. He discussed the complications of aortic issues, specifically aneurisms and dissections. His hospital has a truly amazing setup with regards to dealing with emergency aneurisms.
Dr. George Cheriyan was up next, discussing Osteopathic Manipulation and skeletal issues with EDS. Often times headaches and other pains can be the cause of somatic dysfunction. He stressed the importance of looking at the body as a whole, not individual parts. Osteopathic manipulation can help with back pain, migraines, and even lessen hospital stays for pneumonia. Finding a practitioner skilled in neuromuscular manipulation is key.
Dr. Adam Bitterman, Orthopedic Surgeon, enlightened us on a different connective tissue disorder, Marfans. He discussed various orthopedic considerations for connective tissue diseases, such as dural ectasia, which is when the sac surrounding the spinal chord widens, and scoliosis. Interestingly, Dr. Bitterman noted that scoliosis from a connective tissue disorder does not respond well to bracing. Surgeries requiring soft tissue repair have better outcomes when using cadaver tendons rather than trying to repair tendons with the patient’s own tissue. He also stressed the importance of not doing any “grunt” work, meaning, lifting heavy objects that cause you to grunt as you lift.
Back in the days of seafaring exploration, sailors got the nickname “limeys†because sailors who ate limes did not get sick. Anyone going on a boat across the ocean was at risk of a mysterious illness which included the following symptoms:
Bleeding gums & weakened teeth
Dry, damaged skin
Easy bruising
Slow wound healing
Joint pain & inflammation
Decreased immunity
Anemia
Fatigue
Headaches
If these symptoms sound familiar, it is because they are also symptoms of Ehlers Danlos Syndrome. The sailors were experiencing scurvy, a vitamin C deficiency, and they cured it by eating citrus fruit (limes) which contain vitamin C. Vitamin C, also known as ascorbic acid, is necessary for collagen synthesis. Humans cannot make vitamin C; we must eat it or take a supplement to get it.
Vitamin deficiencies seem to be prevalent in the EDS patient population. Most experts agree that supplementation of many vitamins and minerals, including vitamin C, are an important part of EDS treatment protocols. While research can’t yet enlighten us as to why we seem to need more of it, we have found that there are genetic mutations which seem to account for reduced serum vitamin C level. Stress can also lower levels. It is certainly interesting that the EDS symptom list is quite similar to the scurvy symptom list.
Until more nutrition and Ehlers Danlos Syndrome research is done, professionals must utilize blood testing, food diaries, and symptom checklists to help patients optimize their health. If you have symptoms of easy bruising, bleeding, and gum issues, talk to your dietitian or physician about vitamin C supplementation*. While one vitamin is not a “cure-allâ€, the more treatment modalities we implement, the higher our chances are of feeling better overall. Â
