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Only A Few Weeks In And Weary At Not Trusting What S gluten-free

Medz

By Medz
in Coping with Celiac Disease

Recommended Posts

Medz Newbie
Medz
Posted

I'm 6 weeks diagnosed by biopsy, and got glutened for the 2nd time this weekend. Out for lunch on Sunday I asked about every ingredient in the menu and was told what I could eat. I think the fries were probably cooked in oil that was contaminated. I spent Monday washed out with no energy and then on Tuesday morning had complete bowel emptying (sorry if TMI), which was the same as 1st time (which was due to my own carelessness) - almost exactly 48 hours later my guts reacted.

On the whole I'm not doing badly with coping, but when you're out it's a bit like roulette. Unless you go into the kitchen yourself how do you know they've got it right? I'm getting a little down at the prospect of never eating out safely again...

Plus a friend went out of her way to cook me gluten-free brownies but I think she put chocolate in that had gluten. She wouldn't have thought to check the choc when she'd sourced gluten-free flour etc. I haven't said anything as she was trying so hard.

Feeling like it's all a bit tough at the moment :(

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YoloGx Rookie
YoloGx
Posted

Its really tough especially at first. Its best to just make and bring your own. I take a little zippered bag with blue ice in it and some munchies as well as a thermos wherever I go. You can thank your friend for the brownies and then later give them to someone else. At some point you may want to explain to her what you have to go through, or not depending on how close a friend she is.

There are a few restaurants that are aware of this kind of problem but not many. Depends on how much trouble you want to go to and if the whole restaurant thing is important to you or not. I often just eat my own food. Its possible to work with a chef and his/her crew, but it does take work and should be done ahead of time if at all possible. There are a couple of chains that feature a gluten-free menu: PF Chang and Outback. Even there though its a good idea to remind the server and cook and tell him/her you have celiac and he/she must be careful and wash hands etc.

Maggie Mermaid Apprentice
Maggie Mermaid
Posted

Sauces and marinades can be made with soy sauce or worchestershire sauce both of which contain wheat. Some restaurants use wheat flour as a thickener too. We always order the sauce on the side. Also learned the hard way to inquire as to whether the meat/chicken is marinated.

It's tough in the beginning, lots to remember and ask about.

You have a really great friend to be trying so hard for you. We have friends who know our situation and still bring only desserts that have gluten, they don't even bring plain old cut up fruit (how easy is that?). You can give her some gentle hints about baking gluten-free or just share them with others that can tolerate gluten.

Ahorsesoul Enthusiast
Ahorsesoul
Posted

Be sure to tell the restaurant about your dinning experience with them. Either by email if they have it or by written letter. Not a point my finger letter but about how disappointed you were that some gluten was overlooked and made you sick.

Dada2hapas Rookie
Dada2hapas
Posted
I'm 6 weeks diagnosed by biopsy, and got glutened for the 2nd time this weekend. Out for lunch on Sunday I asked about every ingredient in the menu and was told what I could eat. I think the fries were probably cooked in oil that was contaminated. I spent Monday washed out with no energy and then on Tuesday morning had complete bowel emptying (sorry if TMI), which was the same as 1st time (which was due to my own carelessness) - almost exactly 48 hours later my guts reacted.

On the whole I'm not doing badly with coping, but when you're out it's a bit like roulette. Unless you go into the kitchen yourself how do you know they've got it right? I'm getting a little down at the prospect of never eating out safely again...

Plus a friend went out of her way to cook me gluten-free brownies but I think she put chocolate in that had gluten. She wouldn't have thought to check the choc when she'd sourced gluten-free flour etc. I haven't said anything as she was trying so hard.

Feeling like it's all a bit tough at the moment :(

Sorry you're experiencing this, but I've been there too. It is very frustrating to be sick, and it feels like playing russian roulette when you're just trying to eat! I'm relatively new to this and the gluten free diet, but it is wonderful to finally feel good!

Honestly, I'm one of those who used to be a bit unsympathetic towards folks with food intolerances, etc. With a background in science, I tend to discount personal accounts/observations as "anecdotal". (Ok, thanks for not calling me names!) :P This last year, I found myself with symptoms my physician couldn't seem to figure out. Having to share my own anecdotal accounts of my symptoms with him, and other specialists, I can finally relate. The conclusion is that I'm gonna have to be gluten free for life, but am still appalled at my pcp's and gastroenterologist's apparent lack of knowledge in diagnosing/treating celiac disease.

I finally got tired of getting sick 2 or more times a week trying to eat out at restaurants with gluten-free menus, so have stopped going out to eat for now. Stinks, as I'm bit of a foodie, and used to eat out (with my family) almost everyday. I also noticed that only when I am "paranoid" diligent in preventing CC at home, I don't get symptoms. Odd, isn't it? ;)

Tonight, I can say I've finally found a happy place, as I haven't been sick for a week now! Also found out (from a post on this forum yesterday) that I can have a snickers bar--my favorite candy I haven't had in months! Right now I feel great! I hate being sick, and everytime I get glutened life stinks, and then I wonder if I have a huge tumor inside.

I should mention that I'm the only one in my family of four that is gluten-free. Wife and kids are sympathetic, but I still don't trust them to fix food for me, due to cc. One day though...

Hope you feel better. Good luck! :D

tmbarke Apprentice
tmbarke
Posted

I know how difficult it is to have to struggle.........my coworker made a gluten free salad but didn't check the ham........I let him know and he appreciated the honesty (as he is learning and wants to include me in work parties)

I haven't dared to go to any restaurants...Maybe just for coffee talk, but even then will bring my own cup.

I thought about how I am going to miss the arby's french dip and the subway BMT or the burger king whopper jr!

But I also thought..........I can still duplicate.

I'm learning to get my hands into the baking of bread and rolls.........I can have that whole hamburger again.....and some french dip!

I live with a non gluten-free brother and so far, he doesn't mind my food - in fact, says it's easier to go to the bathroom.......(TMI....sorry)

I just found recipes to make my own noodles too........homemade chicken noodle soup with thick noodles! mmm

You can still use marinade for your own meats too - lime juice, gluten-free spices (I use italian blend) and a bit of oil with gluten-free lite soy sauce (optional).

I'm fortunate to find out that in Allendale Mich, a gluten-free restaurant will be opening up! From one gluten intolerant to another......I'm positive it will be safe......and I'll be able to eat out again!

Once you can duplicate your favorites, eating out will be just a budget buster!

Good Luck

Tena

homemaker Enthusiast
homemaker
Posted
Sauces and marinades can be made with soy sauce or worchestershire sauce both of which contain wheat. Some restaurants use wheat flour as a thickener too. We always order the sauce on the side. Also learned the hard way to inquire as to whether the meat/chicken is marinated.

It's tough in the beginning, lots to remember and ask about.

You have a really great friend to be trying so hard for you. We have friends who know our situation and still bring only desserts that have gluten, they don't even bring plain old cut up fruit (how easy is that?). You can give her some gentle hints about baking gluten-free or just share them with others that can tolerate gluten.

Just a note...if you cook yourself ....Lea & Perrins

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ang1e0251 Contributor
ang1e0251
Posted

I'm sorry you had to go through that. It is tough to eat out. I'm lucky to have found a couple of local places to eat a dish or two. I can't have anything too exciting but I'm looking forward to eating at a fancy Italian place in Ft. Wayne that has a gluten-free menu. It's pricey so I'm saving up but it will be great!

You know it just takes time to accept this new lifestyle. You are going to have a time going through all the feelings you get about the changes. We have so much emotion attached to our food. I remember watching a show about gastric bypass and the woman was crying because she could not partake of most of the Thanksgiving meal. I had never considered the emotional attatchment to food, family and traditions. Now I am living that same story. After two years, I have accepted it for the most part. I'm still a little miffed about family attitudes but I'm working on that. I don't like letting someone else be in charge of my happiness.

You'll be OK and I promise it will get easier. Treat yourself with safe food but also look for personal rewards that do not involve food; buy flowers,(my personal favorite, I'm a florist!), go for a hike, play with your pet, buy that expensive perfume you've been wanting, or how about a charm bracelet and every month you are gluten-free, you add a new charm! It's a great life and we have a condition that is manageable so fight on, girl!

tmbarke Apprentice
tmbarke
Posted
You'll be OK and I promise it will get easier. Treat yourself with safe food but also look for personal rewards that do not involve food; buy flowers,(my personal favorite, I'm a florist!), go for a hike, play with your pet, buy that expensive perfume you've been wanting, or how about a charm bracelet and every month you are gluten-free, you add a new charm! It's a great life and we have a condition that is manageable so fight on, girl!

I love your positive outlook! Simple rewards!

I'm going to start doing that one!

As depressing as it gets...........it would be a great coping mechanism.

Kinda like "SHOPPING THERAPY!"

Medz Newbie
Medz
Posted
  • Author

Thanks all for support and advice. Feeling a bit brighter about it today after I made some halfway decent gluten-free bread for lunch. I think I'm just coming down after the initial relief at being diagnosed and finally knowing what was wrong and what I could do about it, and now the reality of day-to-day living with it is sinking in a bit.

I like the bracelet idea. When I gave up smoking I rewarded myself for each successful month, so why not the same for going gluten free!

Diva1 Enthusiast
Diva1
Posted
I'm 6 weeks diagnosed by biopsy, and got glutened for the 2nd time this weekend. Out for lunch on Sunday I asked about every ingredient in the menu and was told what I could eat. I think the fries were probably cooked in oil that was contaminated. I spent Monday washed out with no energy and then on Tuesday morning had complete bowel emptying (sorry if TMI), which was the same as 1st time (which was due to my own carelessness) - almost exactly 48 hours later my guts reacted.

On the whole I'm not doing badly with coping, but when you're out it's a bit like roulette. Unless you go into the kitchen yourself how do you know they've got it right? I'm getting a little down at the prospect of never eating out safely again...

Plus a friend went out of her way to cook me gluten-free brownies but I think she put chocolate in that had gluten. She wouldn't have thought to check the choc when she'd sourced gluten-free flour etc. I haven't said anything as she was trying so hard.

Feeling like it's all a bit tough at the moment :(

I feel its a bit tough for me too a this moment...just gluten free for one month doing better but its hard to eat out .its like eating with anxiety hoping that you are not going to be glutened....i guess its live and learn, I'm glat to have read your post it makes me feel better to know that I'm not alone with this

Diva

mbrookes Community Regular
mbrookes
Posted
I feel its a bit tough for me too a this moment...just gluten free for one month doing better but its hard to eat out .its like eating with anxiety hoping that you are not going to be glutened....i guess its live and learn, I'm glat to have read your post it makes me feel better to know that I'm not alone with this

Diva

You are far from alone, my dear. Our name is legion.

One thing... because of the very nature of Celiac Disease it will have a great deal of control over you, but don't let it take over your whole life.

Part of eating out is the social side, which I contend is necessary for mental health. The simple fact is... be as careful as you possibly can and you will still get a dose of poison occasionally. Suffer through and start again. No guilt, anger or any other negative emotion will speed your recovery, so don't waste the energy.

(Feel free to roll your eyes and call me Pollyanna. I've always been like this and don't expect I'll change any time soon)

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