Holidays are a little different on an alpha-gal and EDS diet
Avoiding getting sick is better than fretting about food restrictions
As someone with significant gastrointestinal problems due to having both Ehlers-Danlos syndrome (EDS) and alpha-gal syndrome, I find that Thanksgiving isn’t as straightforward for me as it is for most people. I can’t simply show up at someone’s house for a meal and dive right in.
At this point in my life, I think it bothers me less than it does other people. I’m often asked if I miss the food I can no longer eat. That may sound like an easy question, but the answer is actually pretty nuanced. Do I miss being able to eat without worrying? Yes. Do I miss certain delicious foods I can no longer have? Yes. Do I crave them? No.
That last answer seems to surprise people. When I think about eating something I used to love but no longer can, I waffle between two different feelings: “mmm, that tastes good,” and “ugh, that makes me feel sick.”
A matter of adjusting
Because it took so long to figure out why my stomach was upset all the time, I felt like everything I ate made me sick. I was miserable. After I learned what was happening and removed triggers from my diet, I began to feel much better.
I don’t ever want to feel like that again, so the appeal of any food I know will make me feel sick evaporated. I’ve also learned that I can adjust nearly any recipe to fit my dietary restrictions. When I cook at home, I can make just about anything I want, and I genuinely enjoy cooking.
When I go out to eat with others, however, they always feel bad for me because I can’t just order anything. I explain that I’m so happy to feel better that it doesn’t bother me, but I suspect most people think I’m lying. I wish more people would understand that I really am OK with modifying my diet, and it doesn’t bother me that others can order what they want. When I’m out with friends, I’m just glad to spend time with them. As long as there’s something I can eat, I’m good. If not, I’ll plan ahead so that I don’t arrive hungry.
My dietary restrictions are only as big of a deal as I make them out to be. As we approach the holidays, when so much revolves around food, I hope that others will understand this and just learn to roll with me!
Note: Ehlers-Danlos News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Ehlers-Danlos News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Ehlers-Danlos.
About the Author
Mary Horn
Oh my! I have hEDS and was just diagnosed with Alpha-Gal allergy too. I had an anaphylactic reaction to a taco. I haven't eaten red meat in years but one evening, a barbacoa taco sounded good. I remember thinking that one beef taco wouldn't kill me. LOL! Two hours later I was in the emergency room. When I was first diagnosed, I was focused on everything I couldn't eat, but I decided it would be better to focus on what I could eat. I completely agree with you that feeling good replaces any desire to eat forbidden food.
Karen Del Vecchio
Oh no! I'm so sorry that happened to you, but glad you're okay! I agree, focusing on what I can still eat helps me realize that it's actually quite a lot - and that if I cook, I can make almost anything I like with just a few substitutions!
Lisa Hammond
I also feel like everything I eat is irritating; I'm developing new food sensitive issues and learning to pay more attention to them. Taking care of myself can be a challenge, but we all have to deal with changes our body develops over time. My advice is to learn as much about what's going on w/ you as possible and find ways to heal yourself.
Ella Coppard
Thank you so much for sharing your experience. I get violently sick, like food poisoning from meat and dairy and doctors have told me it's not possible. I have recently been diagnosed with EDS and it's all becoming clear!