Having spent much of my life with food sensitivities, I have had to adapt my life accordingly, as food is so often central to so many social interactions. I have had to learn how to visit friends, restaurants, hospitalizations, and travel with these complications. It has been one heck of a challenge to find foods I can eat along with not feeling like I am making a scene trying to be careful. At times, my frustration and yes, embarrassment in having to deal with difficult eating needs, have caused me to have episodes of “cheating.” However, it results in reactions causing only more discomfort and pain. And, that has never been worth it.
Living with Ehlers-Danlos Syndrome, one finds out quickly in life that many EDS patients are often unable to metabolize normally. Years ago, prior to my diagnosis, I traveled to GA to visit my parents. My parents encouraged me to see a doctor at a place called Progressive Medical. The doctors suggested that I undergo a food sensitivity blood test. When they called with the results, they asked me to sit down to hear them. I could not believe what they were telling me. The test demonstrated that I was reacting to almost everything I was eating. For months, my treatment was to follow a very limited diet that had to be rotated to in an effort to attempt to heal my gut. Despite many months of avoiding certain foods and then slowly reintroducing them, I still found that there were food issues I had to keep addressing. One is not always fortunate enough to be able to return to all foods, even after eliminating these foods for 3-9 months, depending on the level of severity of the reaction.
Like many symptoms associated with EDS, certain foods may never be regained even with one’s best efforts over time. I have found using self-discipline to moderate food reactions has been the only way to cope with my condition. One learns to accept those food sensitivities which will continue to occur and change, sometimes for life. I need to undergo new blood tests when food reactive symptoms return. I am now better equipped to recognize the need for testing as I am much more aware of the symptoms adding to the discomfort I already experience on a daily basis. The bottom line is, reacting to foods not being metabolized adequately will cause inflammation for one with EDS and also other medical issues. Failure to address food allergies for those with EDS will most likely lead to excessive subluxations and dislocations, due to the inflamation. I work hard to address this constantly. I will always have to live with avoiding the following as for me, these foods always cause inflammation in my system: dairy, soy, gluten, tomatoes, white potatoes, eggplant, peppers, and corn. It is hard to not desire these foods and give in to one’s natural affinity for good food but for me, the reactions are not worth it.
This is what I have learned to cope with these issues:
For a Restaurant:
- I always carry a list of what I can’t eat to hand to a waiter. In fact, the MRT food sensitivity blood test will give you a card to carry with you on the reactive list.
- When sharing and discussing the list, I make a point of making sure that for instance, that they don’t use a vegetable oil which many times have soy in it and ask them to use olive oil instead.
- If some of the food in the dish I want to order is safe, I ask that the reactive food not be on the plate or offer it to who might be eating with me or ask for a safe substitute.
- Sometimes the chef is able to eliminate the item in the dish I am not able to metabolize so it is worth the ask.
Going to a Family/Friend for a meal:
- I always start the conversation sharing my diet is restrictive and make sure they really want to take this on.
- I always offer, when visiting, to bring my own safe food
- I also offer to make a dish so there will be something safe to eat
- I share the list of reactive foods if they insist on cooking for me despite the complications I present.
- I rarely chose to cheat even though the food on the table I can’t eat is driving me nuts to look at – the reaction for me is just not worth it for it goes on for days
- I never know when I travel, if I will be able to find food I can eat and this does cause some stress, so I bring an extra suitcase to carry food I can bring with me in case I am stuck.
- I give it a try at the event buffet and if no luck with the description of the food, ask whoever is in charge to help guide me. They tend to want to help you but you are always left hoping they really know what they are sharing with you if they didn’t create the food.
- When staying in a motel/hotel, I always request a refrigerator and microwave in the room for the food I bring. I am then able to prepare the food I brought if needed.
- I pack a spoon, fork, bowl etc that may not be in the room in case I have to resort to the food I packed.
- Sometimes, when desperate to find food I can safely eat and feel limited in choices, we take a cab or hotel free ride to a local grocery store and get items I need that I could not travel with.
- Some hospitals are so accommodating while others have been close to starving me due to their unwillingness to address my food issues. So, be sure to try to be prepared!
- Pack lists of your food sensitivities to hand to the staff – consider hanging a copy of the list on the door into your room and ask that they hand one to the dietician and one to remain in your chart.
- Ask to speak to a patient representative even before the date to arrive, to speak as to how they can assist you with getting food to your room that you can eat
- If you do not connect before the date to be there, then be sure to start asking the staff right away to meet with the dietician.
- If you are coping with illness or surgery recuperation, you do not want to add intentionally reacting to foods for this will work against your healing process.
- Remember to also pack some food you can eat just in case too much time goes by before they bring you compatible food to eat.
- Consider, if someone is helping you with the stay, to ask them to bring you food you can eat.
It is so much easier to be home to create safe, nutritious food to eat. It is important not to allow a food issue to contribute to a sense of isolation and social discomfort. But we hate to have to be isolated due to this issue so it is best to be prepared in case you run into a situation of few or no safe choices. I know how hard it is to stay away from so many wonderful foods, but if you are like me, staying away from the culprits can prove invaluable in supporting the effective treatment of your condition. My Dad also had issues with food and we use to joke before he passed, that we would meet at the smorgasbord and eat our hearts out when we pass!
May life be kind to you,
Ellen Lenox Smith
Author of: It Hurts Like Hell!: I Live With Pain– And Have a Good Life, Anyway, and My Life as a Service Dog!
The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of National Pain Report.