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!
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
Have you heard of the spoon theory? The story goes like this: one day, a young woman by the name of Christine Miserandino was having lunch with a friend at a diner. She was trying to explain what it feels like to be chronically ill. She looked around and saw spoons on the table. She quickly grabbed the spoons at her table and the surrounding tables, handing them to her friend.
She said, “Imagine these are all the spoons you have to ‘spend’. Now, tell what you do in a day.â€
🥄 wake up and exercise… one spoon
🥄 shower… one spoon
🥄 blow dry hair…. one spoon
🥄 walk the dog…. one spoon
🥄 tidy up the house… one spoon
These activities already cost 5 spoons and she didn’t even leave the house yet! The list continued, until her friend had one spoon left and had to choose between cleaning up after dinner and going out with friends.
Her friend finally understood, asking her, “How do you do this every day?†She answered, “I have learned to live life with an extra spoon in my pocket, in reserve. You need to always be prepared.
People with invisible illnesses that are chronic have to consider each activity and its net spoon cost. Some days there are more spoons to spend, some days there are hardly any. Life with chronic disease is a daily struggle. Utilizing good nutrition to procure extra spoons can make the world of a difference. Never underestimate the value of the food on your spoon!
Ehlers Danlos Syndrome (EDS) is an illness with many symptoms resulting from a defect in the way collagen is produced. While there is no cure at the moment, there are ways to support collagen production in the body to decrease symptoms and help patients regain quality of life.
Eating a healthy diet low in processed foods is recommended. Further tailoring of diet to optimize nutrition can be done with a registered dietitian. Specializes bloodwork can be utilized to determine vitamin and nutritient deficiencies. Supplementing with vitamins and minerals can help to prevent and/or ameliorate these deficiencies which can make symptoms worse. The following is a short list of supplements considered helpful to those with Ehlers Danlos Syndrome. As always, check with your physician and dietitian before taking anything new.
For excessive bruising, supplementing with Vitamin C can help. One study found that Vitamin C supplementation, even in those not clinically deficient, helped to reduce bleeding, wound healing time, and increased muscle strength.
L-Carnitine is an amino acid. It helps to transport fatty acids, and is involved in the production of energy for the body. Studies indicate that those with fatigue who supplement with L-Carnitine experienced a decrease in their excessive tiredness.
Magnesium is an important mineral. It helps with muscle soreness, sleep, inflammation, anxiety, and brain health. Magnesium also plays an important role in the synthesis of collagen. Unfortunately, oral magnesium supplements are not well absorbed. The best form of oral magnesium is in chelated form. Bathing in Epsom salt is also a good option, absorbing the magnesium transdermally. Please note that magnesium can be dangerous if taken with certain medications or with certain health conditions. Always ask your physician before taking magnesium.
Methyl Sulphonyl Methane (MSM) is a compound with antioxidant and anti-inflammatory properties. It has been shown to reduce cytokines production, which can decrease inflammatory markers in the blood.
The supplements mentioned above are a good place to start your research into figuring out what will work best for you. There are many ways to alleviate the symptoms of Ehlers Danlos Syndrome. It is important to make a plan for yourself together with your physician to get relief. If each modality gives you some benefit, collectively they can all add up to a significant quality of life improvement. For personalized supplement recommendations, make an appointment with Nasar Nutrition.
