When I was finally diagnosed with Ehlers-Danlos Syndrome in 2014 after 6 years of investigation, it also brought several other diagnosis that are known to go “hand-in-hand” with this connective tissue disease. EDS is a congenital disease (genetic) and is multi-systemic due to it affecting the strength of collagen (structural protein) throughout the body (collagen makes up all of your skin, organs, tendons, ligaments, bones, blood vessels etc.) [source: http://ehlers-danlos.com/eds-types/]. In simple terms, EDS causes all the strong collagen in your body to be instead, extremely weak, stretchy and easily breakable. Therefore, many patients who have EDS have problems with their digestive systems.
Prior to my diagnoses, throughout my time at the University of Leeds studying for my undergraduate degree my health began to spiral into decline. Over the three years (2011-2014), I was suffering from a variety of symptoms: extreme fatigue, trouble sleeping, bloating, abdominal pains and cramping, nausea, vomiting, muscle fatigue, muscle and joint pain, hair falling out, bleeding gums, brittle flaky nails, grey complexion, constipation, diarrhoea, excessive sweating, heat intolerance, anxiety, depression, concentration difficulties, brain fog, headaches, migraines, palpitations, dizziness, fainting and syncope episodes, hypoglycemic attacks, chest pain, flushing, unexplained full body or partial body rashes, hives, itching tongue and mouth etc. I thought it was completely ‘normal’ to feel this way after I ate and continually throughout the day as I didn’t know anything different – I know, crazy – but how is a person supposed to know that it isn’t ‘normal’ if you’ve just been in one body your whole life feeling a certain way? What is considered ‘normal’ to one person could be completely ‘abnormal’ to another.
Blood tests showed that I was extremely anaemic with a large variety of vitamin and mineral deficiencies. This didn’t make sense to me at the time because I was always conscious of living a healthy lifestyle, eating a balanced diet and exercising lots by playing netball for the university. So, I was prescribed high doses of a huge range of supplement pills as well as adapting my diet to more iron rich foods to try and bring my levels back to normal. But, this didn’t work. My results kept coming back dangerously low.
After consulting and having many tests with EDS specialists in GI, Autonomic, Cardio and Nutrition, I finally was given the true answer as to why I was suffering from these huge range of symptoms and deficiencies, as well as being also diagnosed with the following that tremendously affect my gut and diet: Mast Cell Activation Syndrome (MCAS), Dermotographism, and Dysautonomia [including Autonomic Dysfunction/Postural Orthostatic Tachycardia Syndrome (PoTS), Autonomic Mediated Syncope (AMS) and Orthostatic Hypotension (OH)].
This combination of my overactive white blood cells (MCAS) and disease of my Autonomic Nervous System (ANS) creates a huge problem with specific types of food as my blood pressure, heart rate and digestive system react abnormally and produces an autoimmune response. I don’t have a restricted diet purely out of choice. Instead, it is a necessity that I must strictly follow in order to prevent any allergic reactions, absorption issues, flare ups and autoimmune responses that my body and autonomic system might create.
An EDS specialist Nutritionist had me go through a variety of tests which included blood and stool tests, hydrogen breath tests, other allergy tests. The results showed that I had severe mal-absorption issues, imbalance of bacteria in my gut, and severe intolerance to lactose, fructose, gluten, wheat, yeast and histamines. These all caused my MCAS to spiral out of control due to the unknown amounts of histamine foods I was consuming. It also caused my PoTS to escalate and experience Post-Pranial Hypotension (PPH). PPH is when blood pools in the stomach (due to abnormally increased dialation of blood vessels from EDS) and is unable to pump the blood quick enough back to the heart and brain causing blood pressure to fall as a consequence of eating food.
In combination with avoiding all foods that I tested severely intolerant to, I was also put on probiotics, low FODMAP and low histamine diet for 8 weeks to help my gut symptoms, mal-absorption issues and MCAS reactions. And yes, I know what you’re thinking – what on earth was there left for me to eat with all of these food restrictions? Did I mention that during this time I was beginning my MSc at Imperial College? As if I was stressed enough with the beginnings of my dream new course, I also had to juggle this whole new nutrition lifestyle too!
I admit that it was quite a shock eliminating a large amount of fruits and vegetables from my diet that I was used to eating, and I couldn’t just pick up my lunch from the canteen or supermarket – so I had to get creative with my food. Luckily, I got myself into the habit and routine of prepping all of my meals so I was able to manage the constrained diet. In the end, it was completely worth it because finally my body was able to absorb the majority of nutrients, vitamins and minerals from the food I was eating. For years, my MCAS and consuming of intolerant foods prevented any absorption to occur from my gut into my blood stream causing a vast amount of health problems and unexplained deficiencies.
After strictly following 8 weeks of a low FODMAP, low histamine, elimination of eating food I was intolerant to, pill supplements and taking anti-histamine medication, I began feeling such an array positive benefits: my abdominal cramps began to diminish, vomiting and nausea stopped, bloating dramatically reduced, I had no constipation or diarrhoea anymore, and I only had minor MCAS flareups – I finally knew what it ‘felt’ like to be ‘normal’.
After this initial restriction period, I was carefully advised to begin reintroducing foods containing FODMAPs to identify which I could and couldn’t tolerate. Overall, I strongly reacted with Mannitol (e.g. sweet potato, celery, mushrooms etc.), Sorbitol (e.g. apple, apricot, broccoli), GOS (e.g. butternut squash, beans, lentils) and some Fructans (e.g. onion, peach, plum).
It has taken me almost 3 years to find a good balance of foods and recipes that I can eat and not negatively react to as well as physically see improvements and manage my symptoms. I predominantley follow a low FODMAP and histamine diet (with some exceptions) that is majority plant-based with fish and eggs. I have stayed away from any food intolerance/allergies and meats as this creates tremendous difficulty for digestion and absorption, as well as experiencing IBS-like symptoms. I have good and bad days, sometimes due to eating out at a restaurant with contaminated food that I’m intolerant to, or just because my MCAS is just deciding to over-react. I am fortunate as currently I do not need any feeding tubes to give me the nutrition I need, whereas many other fellow EDS and MCAS sufferers do.
However, since all of the body trauma I have gone through this past year from all of my neurosurgeries, my body is still in the process of healing and I am still unfortunately battling Macrocytic Anaemia, B12 deficiency, Folic Acid deficiency, Ferratin deficiency, and Vitamin D deficiency. Currently, I am managing these conditions with a mix of treatments including diet, injections, pill supplements and IVs.
Having Ehlers-Danlos Syndrome means living with a multi-systemic condition that has no cure, which can be viewed as curse…in my EDS medical journey I have found food either can be the greatest form of medicine or the slowest form of poison. However, I am so grateful to the specialists who have helped me manage the multiple conditions that I have been diagnosed with as it has helped control the progression of my disease and severity of my symptoms enabling me to lead a better quality of life.
You’ll be happy to hear that you will be able to have a glimpse into ‘Laura Lee’s Kitchen’ of many diverse and creative recipes that I have compiled over the last few years to adapt to my restricted diet. I will be posting a recipe every week on my blog, so keep an eye out, give them a try and let me know how they turn out!
Have you any food allergies, intolerance or other conditions which cause you to have a restricted diet not out of choice? Please feel free to share your story commenting below as I’d love to hear how you cope with your diagnosis, cooking, everyday life and eating out.
*Please Note: remember that every patient is different with varying severities and should be consulted by the correct specialists in GI, Autonomic, Cardio and Nutrition. Even though someone may have similar diagnoses, this does not mean that my food restrictions directly apply to them. But all of my recipes that I post are friendly to all and can be substituted with other ingredients that you wish*