Food Sensitivities? Tips Eating Away from Home

Food Sensitivities? Tips Eating Away from Home

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.

Ellen Lenox Smith

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

Traveling:

  • 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.

Hospitalization

  • 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.

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Authored by: Ellen Lenox Smith

Ellen Lenox Smith and her husband Stuart live in Rhode Island. They are co-directors for medical cannabis advocacy for the U.S. Pain Foundation, along with Ellen on the board and they both also serve as board members for the Rhode Island Patient Advocacy Coalition. For more information about medical cannabis visit their website. https://ellenandstuartsmith.squarespace.com/

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Cindy

I know someone w/ Celiac Disease who brings her own food everywhere. I know someone else w/ a deadly peanut allergy who simply will not step into any Asian restaurant to be on the safe side. Unfortunately, lots of people have to be very careful.

I’m astonished that a hospital would not be accommodating. Of any place in the universe that should be. That is truly disgusting.

If that happens again, I would suggest mentioning the word “malpractice”. If they impede your recovery and complicate your situation, a case might be made —- if not for malpractice then for some other form of negligence or infliction of pain and suffering. Just mentioning a lawsuit might help.

Lots of good suggestions. Most I would think of myself, but not about calling the hospital ahead of time. That’s very smart. Thank you.

While I’ve not experienced deliberate obnoxiousness at hospitals, I’ve seen left hand/right hand at a hospitals. While they go on about how we should avoid trans fats, I’ve been offered crackers for snacks at 2 hospitals, where the crackers had transfats. I called one hospital about it, and the woman was surprised and said she’d look into it. I don’t know if that changed. But snacks to outpatients are not as critical as meals to inpatients, esp as so many inpatients don’t have the luxury of friends/family to bring them compliant meals.

I’ve had IGG food sensitvitiy tests but never heard of MRT. I plan to google a comparison.

I’m sensitive to yeast. So many things to watch out for.

Finally – a bad reaction to a food does make it a lot easier not to want that food any more. When I look at the super yummy food that suddenly out of nowhere caused me horrific pain and time on the toilet, my desire for that food disappears in a split second when I think back to that pain. If the reaction had not been so severe, I doubt my desire for ice cream would have been so quenched, but it was that severe, and I no longer wanted it and made do with sorbet.

Hi Ellen, your sensitivities are much like, if not exactly like, those of us who avoid inflammatory foods for many medical reasons. I do not have EDS but do have chronic spine related pain, Systemic Lupus and FM and have learned over the years to avoid anything inflammatory.
I avoid all foods on your list plus much more. In the past (unable to anymore) when I would go visit family or friends out of town, I would always bring my own food, including lactose free milk and gluten free snacks. When I eat in a restaurant I tend to only get fruit and salads. I can’t imagine asking a busy chef to go out of his way to make something special for me. Therefore I give you credit for going to so many lengths to accommodate yourself.
At home I am mostly on a grain free, lactose free dairy, gluten free, fruits, veges and chicken diet. It gets boring but it helps.

Gail Honadle

I have Gastropresis which is slow digestion, it takes 4 hrs to digest 2 slices of toast and 2 eggs laced with a tracer, as that is the food they feed you for the 4 hr test. Reglan is the drug Gastro’s use for it, it’s Black Boxed for high Neurological side effects, thankfully 1 pill broke me out in Hives. Colon has nearly stopped working even with Linzess. Why? It requires Bulk fiber foods for your GI system to work. GP as it’s known for short is a basically NO Fiber diet. You will be challenged not to over eat Carbs in the form of bread and pasta, especially if you have Diverticulosis on top of it. Fruits produce to much sugar on top of the carbs. It means PAIN, Vomiting, and Diarrhea, and occasionally BP shooting up from the pain enough to send you to the ER. Add in Meniere’s and a Enlarged Heart, eating out is a challenge. Restaurant Food has way to much Salt in it. Especially when you are limited to 1 teaspoon per day. 1 meal out may have a Tablespoon of Salt in it. Same goes for boxed or frozen meals. Salt makes food taste good. Getting use to lower Salt is not easy. Sure beats the heart and Meniere’s issues to high a amount of Salt causes. Then you have to worry about becoming a Type 2 Diabetic from to many carbs. And the 2 diets are polar opposites.

You have few choices on any restaurant menu. You can ask for no salt but that is not always an option as many things are marinated.

If you think that a hospital dietitian who runs their kitchen reads your health list you are fooling yourself. You can call, write notes, complain to the nurse. Nothing will get your weird diet needs changed. Add in actual food allergies and Dye sensitivities and you are in Trouble. 3 days nothing but bad tasting melted ice and a IV is not pleasant. Do yourself a favor, pack your own bottled water with the lids already opened in a cooler. Food you are out of luck. When a 20 year career Navy Seaman turns his nose up at hospital food you know it sucks.