Patricia Downie from Glen Burnie, Md shares her experience with celiac disease and offers insight on how to make dining out a little more pleasant.
How long have you been diagnosed with Celiac Disease(CD) or a gluten sensitivity(GS)?
How has having CD or a GS affected your life?
Patricia: I am a different person now. I was sick all the time. Sinus infections, headaches/migraines, arthritis, rashes, DEPRESSION, extreme fatique/exhaustion, IBS, – I lived on allergy meds (alkaseltzer, & antibiotics) I am amazed that I do not have liver or kidney problems.
When was the last time you were “glutened” and how did that make you feel?
Patricia: 8 weeks ago – I had a severe reaction that kept things uncomfortable and unpredictable with crampsing, diarrhea, constipation, inflammation, horrible gas, pain and GI noises for several weeks before the inflammation died down and things returned to normal.
How often do you dine out versus eat at home?
Patricia: For example, how many meals per week/month do you eat out? I am a full time student with the Univ of MD and I eat on campus about 4 to 6 times a week.
Do you feel nervous when you do eat out? What are your ‘go to’ dishes when you do dine out?
Patricia: Yes I feel nervous and especially if it is someplace I have never eaten before. I can tell within minutes of talking to the server whether or not I will be safe or if it is a suicide mission.
What is something that would make living with CD easier that does not currently exist? More GF products? Better Labeling Laws?
Patricia: Labeling and education about food allergies/sensitivities by the food servers & chiefs. Less processed foods – more in store made – when oil and vinegar dressings have 10 – 12 ingredients – I leave the restaurant and go find a grocery store. Too many chemical additives cause inflammation even if it is G/F
Do you have any advice for family members of those newly diagnosed with CD?
Patricia: Carry a dressing with you – this is where I usually find problems – I can get a plain, clean salad but dressings and sauces are a nightmare.
Anything else you’d like to share about living with celiac?
Patricia: I travel all over the world and do not let my eating needs curtail my activities anymore but I have adopted a much simpler eating life style. I have to carry emergency snacks because I cannot eat fast food and it does take longer to make the necessary inquiries and sometime speak to the chief. The up side is that most of my dishes are prepared fresh & a lot of times I get better food & service than others I am eating with. Of course, I tip better too so when I return the server is not hesitant to assist me. The more you repeat business the better food you get. You can tell a good restaurant when the simple foods taste good you know they shop regularly and keep natural ingredients in house! It is different but many times a better experience when you have to take the time to develop a relationship with the people that are preparing your food.
One last piece of advise – do not eat the french fries. I had a rash for 8 months before I figured out that the fries are cooked in the same oil as the chicken nuggets. When I want good fries, I go to 5 guys burgers or someplace that does not cook fried foods in with the french fries!