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Celiac's Diagnosis Saved My Life!

Purpletie3

By Purpletie3
in Coping with Celiac Disease

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Purpletie3 Newbie
Purpletie3
Posted

Hello all~

   I am brand new to this forum...so happy to have found you. I have felt a little like a Celiac Pioneer for the last seven months since diagnosis. My Celiac diagnosis followed a biopsy and blunted villi...I have tested negative for the last 15 years on the blood test...glad the Doc finally noticed!

   I truly believed my diagnosis saved my life. I have been so sick for so long. I worked 12 hour shifts and was up 4 hours before my shift to "settle my stomach" just to heal on my off days enough to return. Sleeping waking 20 times a night...I thought I seriously had Chrohn's or MS or cancer. There was not much of me left and I highly doubt I would have made it through the next 5 years. (Not to mention 60 pound weight gain)

   My diagnosis came at a time with some other health issues; ICS bladder disease too. So, I retired from my stressful career and decided to dedicate my time to my health.(This coming from a fast food junkie, non cooking, stress eating addict)   I bought a small farm and grew a ton of food...felt amazing this summer...A zucchini a day...If you have not tried the Veggetti (Spiralizer) I highly recommend it for subbing out the nasty rice pasta. No one misses the pasta in my home with the zucchini made into pasta~quick too!

   As much of a change as I have made I would still like to be able to enjoy a meal out. I seem to talk to the waitress' about the gluten free requirement but they just don't seem to get it. I seem to get contaminated... I have gotten to the point where I return the salad if they put croutons on it when being told to leave them off that I am allergic to it. I think that by saying "allergic" people seem to be a little more cautious. By saying you are going to spur an Auto Immune response in me in which I will heat up quicker than a hot flash...fall asleep into my entree...and spend the rest of the night in your ladies room...People just don't get that.  How do you handle dinners out?

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SMRI Collaborator
SMRI
Posted

I don't eat out much any longer but when I do I first check the "Find Me Gluten Free" app on my phone.  It's an ok tool but you have to read reviews and make sure they are Celiacs rating the place and not a fad dieter.  I'll usually tell the waitperson that I can't have gluten vs I am gluten free.  If they don't get that, I'll say I'm allergic to gluten and that usually perks them up.  Generally if I find a place highly rated enough in that app they have had enough training to know what is up if you say you have Celiac.

ravenwoodglass Mentor
ravenwoodglass
Posted

Sorry it took you so long to get a diagnosis. False negatives on testing cost me a lot of years of pain also. 

I only eat at places that have a gluten free menu. I have had good luck with PF Changs and also Wendy's. 

I go into a web search and put in my zip code and the words 'gluten free restaurants' and quite a bit come up.  I still make sure I tell them that I am gluten free when going as some places will have a seperate gluten free menu. 

1desperateladysaved Proficient
1desperateladysaved
Posted

Coming from the view of one allergic to wheat:

 

Welcome!  I am glad your life was saved!  It turned out I have allergies to wheat, so  I have to be extremely careful (more so than many people that have celiac)..  I react for almost no reason.  To me, eating out means throwing out a blanket on the ground in the park and pulling out the meal I've made!  I use thermos jugs, a hot stone, and insulated bag to keep things hot.  I keep a bin of plates, forks, cups, and napkins always in the car.  For fun, I also keep straws for my shakes.  I wrap bananas in bubble wrap, so they won't get bruised.  I carry hard boiled eggs in an egg carton.  One can have almost anything for a quick lunch while on the go.  It is much better than getting sick! 

 

Dee

Purpletie3 Newbie
Purpletie3
Posted
  • Author

Thanks for the replies...It's so hard to change behavior. I was eating out exclusively because of my 60 hour work weeks and hatred for cooking. Now, i am about 2-3 meals out a week....if even. I find that eat time I try and give a new restruant a chance it's more like playing Russian Roulette.

 

@ Dee...I think that is where I am headed. I feel like a new mom...Big purse full of Kind bars, tea bags, drinks. The biggest change has been in my cooking. I cook ALL the time. I am in Upstate NY where it snows from October to May. I just pulled out the crock pot and am making something delicious in there every third day. It's enough for my Boyfriend to take to work and my daughter to snack on...and easy.  I am finding that the risk is just not worth the dinner out.

 

I just feel so blessed at this point to not be sick all day long...I had such an elaborate routine set up just to function. Not to mention the 20 lb weight loss from eating better.

 

Thanks~

Christina

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