How Do You Do It?

[Diosa]

This is a serious question to all the long-time pros of handling this disease... How do you go so long without getting glutened?? How do you still go out to eat, go to friends' houses for meals, and such? In other words how can you have this disease and still have a life?

I'm not asking in a sarcastic way, believe me. It's just that whatever I'm doing right now isn't working as I can't seem to go a month without getting glutened accidentally. I try to not go out except on rare occasions, but that cut out a huge chunk of my social life (our group of friends and we are all foodies and love to go out to eat and socialise). I can't go over to friends as the usually cook with a lot of gluten (not just flour but soy as well), and having them over here has led to glutening problems. I really want to have my social life back. Can anyone offer tips, advice, or just stories of what they do? Thank you so much.

[KaitiUSA]

You find out who your real friends are when it gets tough. You see you can still do everything you once did...when you cook why not cook gluten free treats instead? There is alot you can make that is really good that they would not even know the difference and you still spend time together.

You can go out to eat with them and if it's at a place that you can't really eat then you could just go to socialize or bring something to snack on in your purse or just order a drink. Or you can make sure you call the place you go ahead of time to see if they can accomodate you and if not maybe you can just do one of the suggestions above. If you can get something just be extra careful.

If you find it hard with getting glutened when you eat out at places then you should bring your own food....maybe you can also suggest they come to your house to eat instead?

When I go to friends to eat I will usually bring my own food...most of the time it's not a formal sitdown either and it's just like get what you want when you want it so it makes it easier when it's not so formal(for me at least)

Hope this helps you a bit...no need for celiac to interfere with your social life.

[Guest Viola]

It's a long on going process really. When I was first diagnosed almost 17 years ago, there was virtually nothing for Celiacs and it was considered extremely rare .. 1 out of every 10,000. Now of course we know it's about 1 out of every 133 or something close to that. So I was pretty much isolated.

But as the disease is getting more common we are very lucky to have loads of stuff that we can actually go and buy in the store. That for me is just wonderful .. although I realize it is still tough on the newbies who have just recently been diagnosed.

Summers were much easier, and still are as we live in the country and have loads of veggies in the gardens and fruit in the orchard. Meat is also close at hand when the neighbours are butchering. We don't raise it anymore

A few years ago I decided a was tired of missing out on all the doggy functions and the quilters functions and my husband and I started spending time educating some of the local restaurants. We took in my card and went over everything with the managers. And my groups and friends have started letting me pick the restaurants for all functions. Although if they have a favourite I'll go and see if my diet can be safely accomodated in any way. If it can't be, the group goes somewhere safe. If it can be, then we go to the one they like. They are all very understanding, as I'm sure your friends will be when they learn that this is really important to your health. If they aren't then you might want to reconsider that friendship.

The important thing is, you have to be willing to spend the time going places and educating. I got a real pleasant surprise at one place when I went to see if it was possible to eat there, it turned out the head cook was Celiac Another two places in one of our travels had Celiac waitresses and one place the waitress had a Celiac hubby. So if you make the effort, you will be surprised at what you find. It isn't easy, especially to start, because you have to build up a trust in what happens in the kitchen. But for the most part, they really are very good and careful.

All of us still do have 'accidents' now and then. It's important that you check the coffee cups before they fill them, as sometimes dishwashers leave crumb residue ... that even happens right here at home. So keeping Imodium handy helps. Keep your expectations realistic. It's a gluten world still, and we can't hope to go through life without getting contaminated. But we can't go through life isolated either. That's no more healthy than being contaminated. I can honestly say that it is rare when I get it at a restaurant, it happens more here at home, or at a relatives by having crumbs touch a coffee filter when they are rinsing the filter holder, then set it on a counter while the pot is rinsed, or something so routine that most people don't think about it.

When we travel, we travel with our dog, and so we picnic along the way. We stop at a place where hubby can get a sub sandwich and a goodie, and I carry fruit, cheese, gluten-free breadsticks etc. along, then we stop at the first pretty place with a picnic table, and of course Sheba gets her stuff and gets some play time too. Works great.

Hope this helps a bit.

[luvs2eat]

I'm only 3 years gluten-free, but my middle daughter's just been diagnosed and I realize that it's become a pretty easy part of my life. She's thrilled that she doesn't have to find out all I've found out on her own, but she's still in the shock of it and wondering, too, what's left for her to eat.

For example... she's a vegetarian and loved veggie burgers. I just found a good recipe for black bean burgers and emailed her the recipe. She loves to cook, which also helps a lot.

When we go out I find waiters and waitresses are as friendly and accommodating as you are friendly to them. I've also found more and more celiacs as I talk about it to waitstaff. I know I can always order some plain fish or meat or a salad... I am not so sensitive that I can't just pick off the croutons and blow any crumbs away. (I don't pull stuff off of bread/rolls anymore tho)

Finding Manna from Anna bread really helped me. Being able to make a sandwich is really satisfying.

Good luck! And don't give up!! It DOES get easier.

[Merika]

I am not so sensitive that I can't just pick off the croutons and blow any crumbs away.

<{POST_SNAPBACK}>

Luvs2eat, uh, I hope that was a typo up there

If you are celiac, you are absolutely 100% doing damage to yourself, even if in the short-term you are not running to a bathroom. You are not eating gluten-free if you are eating that way. Neither is your daughter.

Merika

oh, and I'll try to respond to the post, but my answer flew right out of my head when I read the above, lol

[fisharefriendsnotfood]

I was diagnosed with Celiac more than 12 years ago, when I was almost two years old. I don't remember the change in my diet, and don't remember what gluten food tastes like, so that's probably why I don't really have much trouble with my diet. The last gluten food I have eaten was 12 years ago; my second birthday cake. When I go over to family friends' houses, most of the time they will cook me something like plain chicken or fish and they'll usually have salad, and ahead of time I'll ask them to put the croutons and dressing on the side. And then I take my food first, so if the other gluten things up, I've already taken. Then, my neighbours, who are very nice people but are "Well, you can still have a little bit, right?" people. So when I go to their house, I just bring my own food. I explain it and they're not offended.

Last year and the year before, when I was in grades 7 and 8, I went to no less than at least 40 bar/bat mitzvah parties. Of my close friends, I asked them to ask the caterers to prepare something I could have and explained it, etc. Of the parties of kids I didn't know as well, I ate dinner beforehand and brought along one of those breakfast bars if I got hungry, and I admit, it did take willpower to ignore all those hours d'odorves (sp?) and desserts, but never once did I give in. Glad I didn't! All my friends would be eating greasy chicken fingers and fries and ice cream and fancy little cakes but I would sit there will a sprite. Sometimes people would ask me why I wasn't eating. If I didn't know them at all, I would say I wasn't hungry. If I did, I would tell them I had a wheat allergy. Hey, they're probably going to go dance or talk or whatever 10 seconds later.

I have never once EVER cheated on my diet. To me, It's unthinkable. Why I would want to do that damage to my body, I don't know. All I know is that those pounds my friends gained from party food, I sure didn't. Maybe I even lost some.

The point is, I went out for dinner and parties, and I still do, and my diet never restricts me. I go on camping trips will my Girl Guide unit and bring my own food. It's hard, but I do it because it's worth it and I love camping.

WHEN IN DOUBT, GO WITHOUT!

-Jackie

[Carriefaith]

It is hard sometimes to not get glutened, especially when your family members have gluten everywhere and if you eat out a lot. I still get glutened from time to time and I also wonder how some people can go for long times periods without getting glutened. I guess it makes sense if they live in a gluten free kitchen. Not all of us have that luxury though

I personally have not let celiac disease interfere with my social life. At people's houses, I usually bring something to eat and eat my food with them. At restaurants, I will either eat before or eat after and I will order a drink. If I know that it is a safe place to eat, then I will eat at the restaurant.

[Guest Viola]

Love your Avatar Jackie

And you are right, I would not, at any time, recommend anyone pick off croutons or any other similiar stunt!

Everyone with Celiac Disease must be as careful as realistically possible.

If you just pick off the croutons you are not taking the diet seriously and neither will anyone watching you. So it would be hard in the future to convince your friend, relative or cafe server that gluten is very dangerous to us.

[frenchiemama]

I felt the exact same way Diosa. I've only been gluten-free for just over 5 months now, but I swear the first 3 months I was getting glutened constantly. I'm on a pretty good streak right now (knock on wood!), although I did get glutened once about a month ago.

What I do is

a) I bring my own food whenever I realistically can. It's a pain sometimes, but I just feel so much more comfortable with my own stuff.

When I find a restaurant that I can eat at, I stick with it. There is a place that we frequent where the waitress (it's family owned, so she is almost always there) knows exactly what I want and how it needs to be prepared. It's so nice to know that I can eat there safely, and that they really care about my needs.

c) If I'm not comfortable eating something, I just don't. I would much rather offend someone (not that I want to, but if they don't understand I can't help that) than be sick.

Edit: How weird! I put a 'b' and a ')' and it made a smiley. Oh well. Now I just look like a dork.

[KaitiUSA]

Luvs2eat, uh, I hope that was a typo up there 

If you are celiac, you are absolutely 100% doing damage to yourself, even if in the short-term you are not running to a bathroom. You are not eating gluten-free if you are eating that way. Neither is your daughter.

Luvs2eat

Merika is right.....you are not gluten free if you are eating that way with picking croutons off your salad. Even if you do not feel it that does damage more than you may think.

[WyoShiela]

Shirley,

Does Immodium help with accidental contamination? I've never heard of that before!

[Janelson]

My problem is that I get glutend by things with hidden ingredients...I am not even sure if it is gluten! I have not gone more than a week of feeling perfectly fine in about 6 months now and I dont know what I am doing wrong!

[Guest Viola]

Immodium Advanced helps with the big D, stomach cramps and some of the bloating. Unfortunately it doesn't do anything for the dry mouth, and DH blisters.

Also, over the years I have learned that not everything is caused by 'gluten'contamination. Although that's the first thing we all tend to blame. Other things that cause similiar symptoms are ... untreated water .. tainted food, and of course good old fashion flu. And yes ... Immodium helps all those as well, but try to let some go through your body before you take it, as the sooner your body clears the better. I use Immodium if I have an appt. in town, or have a function I really want to attend.

[KaitiUSA]

My problem is that I get glutend by things with hidden ingredients...I am not even sure if it is gluten! I have not gone more than a week of feeling perfectly fine in about 6 months now and I dont know what I am doing wrong!

<{POST_SNAPBACK}>

Do you have the safe and forbidden lists so you know what to look for on labels?

Do you have the 79 page Delphi List with the gluten free status of tons of products and foods?

Do you have the list of the mainstream brands that will not hide anything even under otherwise questionable ingredients and clearly put wheat, rye,barley,oats on the label if they contain any or they will be safe?

These will help you if you have that problem ...also have you changed products that you use around your face and on your hands yet?

Feel free to email me if you need any lists or help.

[Jnkmnky]

My son was dx at three and is 6 now. He's been glutened twice that I'm sure of. I think it's easy enough and have tried very hard to make sure he feels like it's not a big deal or holding him back in any social situations. When there will be food at a social event, he brings his own. He goes to every kid party he's invited to and No... I do not attend every one of them with him. I drop him off at recreation classes, summer camp, friends houses for playdates.. He's out and doing things everyone else is doing. He just totes his gluten-free foods along with him. Also, you don't always have to eat when you go out. Sometimes I'll feed him at home and then we'll go out. A person can survive for several hours without eating! Especially if they've just loaded up on healthy, filling food. Sometimes he'll bring a snickers bar to dinner with us and eat his dessert while we eat dinner. Or just have a drink. The going out isn't really about the food unless you're dining at a fabulous, gourmet restaurant, it's more about the hanging out together. Outback Steakhouse has a great gluten-free menu. Americans have really lowered the standards for dining out anyway. Eating first at home is a great option and having an iced tea with your friends, making them comfortable with your issue, and enjoying your time out is really the best thing to do.

[Claire]

Luvs2eat, uh, I hope that was a typo up there 

If you are celiac, you are absolutely 100% doing damage to yourself, even if in the short-term you are not running to a bathroom. You are not eating gluten-free if you are eating that way. Neither is your daughter.

Merika

oh, and I'll try to respond to the post, but my answer flew right out of my head when I read the above, lol

<{POST_SNAPBACK}>

I want to second your statement here to the post above yours. This is a casual approach to gluten that anyone with celiac cannot afford to have. Even if you feel not a twinge of discomfort, gluten in your body is doing damage. I am here to tell you - from personal experience - that the cell damage occurs over time and one day you find yourself with a gluten induced problem that will never go away. Don't take changes. You may well regret it. Claire

[tarnalberry]

This is a serious question to all the long-time pros of handling this disease...  How do you go so long without getting glutened??  How do you still go out to eat, go to friends' houses for meals, and such?  In other words how can you have this disease and still have a life? 

I'm not asking in a sarcastic way, believe me.  It's just that whatever I'm doing right now isn't working as I can't seem to go a month without getting glutened accidentally.  I try to not go out except on rare occasions, but that cut out a huge chunk of my social life (our group of friends and we are all foodies and love to go out to eat and socialise).  I can't go over to friends as the usually cook with a lot of gluten (not just flour but soy as well), and having them over here has led to glutening problems.  I really want to have my social life back.   Can anyone offer tips, advice, or just stories of what they do?  Thank you so much.

<{POST_SNAPBACK}>

You adapt around these problems. Eating out may be a boring meal of a plain baked potato, but you enjoy the company. Dining at a friend's place may be bringing your own stuff, but you enjoy the experience. Hosting at your own place needn't present any concern at all, so I'm curious where those glutening problems has come from. The way in which you enjoy the food in your social life may change, but it can change so that you can keep your social life. (Moving a social life a little bit away from food can help too. ;-) )

[Guest Viola]

We always have pizza delivered for all of our club members that help set up the dog show every Aug. So what I did this year was make myself a small pizza the day before and took it down with me, then when pizza time came around I popped it into the microwave in Olga's motor home with paper towels so I didn't need to worry about the micro and walla ... I joined everyone for pizza ... had a glass of wine instead of the usual beer, but it made it fun

[Lisa]

Immodium Advanced helps with the big D, stomach cramps and some of the bloating. Unfortunately it doesn't do anything for the dry mouth, and DH blisters.

Also, over the years I have learned that not everything is caused by 'gluten'contamination. Although that's the first thing we all tend to blame. Other things that cause similiar symptoms are ... untreated water .. tainted food, and of course good old fashion flu.  And yes ... Immodium helps all those as well, but try to let some go through your body before you take it, as the sooner your body clears the better. I use Immodium if I have an appt. in town, or have a function I really want to attend.

<{POST_SNAPBACK}>

Shirley:

I just noticed that you mentioned "dry mouth". That is a big issue for me. I assumed that it is because of the "big D" issue and it most likely is. I was glad that you mentioned that. It is not a diabetes issue with me. Some days are dry, others are not. I have not found any consistancy with it.

I, sometime have to conduct public meetings, and dry mouth is always an issue. Dry mouth and brain fog, really make me feel like I am not doing my job and am not on top of things during my meetings. .. Public Meetings ...ugh..

Is this a celiac disease factor or a dehydration issue?

Thanks for bringing this up for me. (as well as others)

[mark t]

This thread brings up several questions but the main one to the long timers is if one flake can trigger a symptom you guys know it right away? Certainly my being a newbie would mean mistakes are much more likely until I get more time with it and yet I think I have been feeling better and while my intake has gone down to small, certainly I have messed up. Besides it's almost like I am more scared not to be diagnosed. I am so banking on this fixing the problem.

Mark

[Guest Viola]

That's an interesting question about dry mouth. I think it is a symptom as sometimes it shows up either before or at the same time as the 'D'. But it does get worse as the contamination runs its course, so likely dehydration is in there as well.

Mark it does depend on how big the contamination is to how quickly the symptoms pop up. I will sometimes just get blisters quite quickly after a small amount of contamination, where as a large one will send me to the bathroom within 20 minutes or so. And by large, I mean a few bread crumbs. I consider small as a contaminated spice. But here again, there is a difference with how sensitive each person is.

[Lisa]

This thread brings up several questions but the main one to the long timers is if one flake can trigger a symptom you guys know it right away?  Certainly my being a newbie would mean mistakes are much more likely until I get more time with it and yet I think I have been feeling better and while my intake has gone down to small, certainly I have messed up.  Besides it's almost like I am more scared not to be diagnosed.  I am so banking on this fixing the problem.

Mark

<{POST_SNAPBACK}>

Mark:

I have tried to be gluten-free for TWO months since diog. with possitive biopsy. My system has not healed enough to know when I have been glutened or not. I am trying to go 100% as best that I am able. Slowly but surely, I have good days, about every other day. I take b-12 shots once a week and it really gives me big boost in energy.

If you want to go totally Gluten Free, (the site) can set you up on a a two week program. ( can't rembember the thread, but it was wonderful and a life saver for newbies). If you have any questions, all you have to do is ask.....

Lisa B.

To answer your question...

[mark t]

Lisa that makes so much sense, so if I got it, my system can't tell yet that I am gluten free. Thanks. I need to keep this as simple as possible, here is my approach, see what you think. I can use any advice. Here is what I am doing now. Breakfast is the hard one, it is diffacult for me to cook at home so I eat while I am working, mostly it's eggs and brown rice. But after reading this thread, I realize even that can be dangerous not knowing what is going on behind the kitchen door. Lunch, I eat out as well, fish and brown rice, I just realized same problem. Dinner is only meal I usually eat at home. I eat potatoe, tuna, or peanut butter on gluten free bread and fruit. Writing this made me realize where I am in danger, Being accidently glutened(I like that word) is going to happen, I thought I had this thing wired. Ouch, that one hurt.

Mark

[tiredofdoctors]

I got this advice from Claire on another thread: get the book The Gluten-Free Bibleby Jax Peters Lowell. I'm not a celiac -- but I have gluten ataxia. I don't have a "fast" way of knowing I've been glutened the way that celiacs do, so I'm trying to be unbelievably rigid with regard to my new gluten-free lifestyle -- and to my resolve to live this way for the rest of my life. My entire network of family & friends knows how committed to it I am, so I'm hoping that I don't have a lot of the stumbling blocks that can come with this lifestyle.

To get back on my original suggestion Claire was absolutely right about this book. It has a variety of topics with regard to living gluten-free, even suggestions for fast food, restaurants, lists gluten-free friendly restaurants and their websites. It even has gluten-free friendly resorts!

I had told my husband about this book after reading a reply -- he found it tonight at the bookstore -- we were really glad, because we went to McDonalds right afterward to take home (you can even have McD's fries!) At any rate, it was a great suggestion and I'm happy to forward good advice.

[Merika]

Breakfast is the hard one, it is diffacult for me to cook at home so I eat while I am working, mostly it's eggs and brown rice.  But after reading this thread, I realize even that can be dangerous not knowing what is going on behind the kitchen door.  Lunch, I eat out as well, fish and brown rice, I just realized same problem. Mark

<{POST_SNAPBACK}>

Eggs is a pretty safe bet, especially if you order an omelette or ask them to make the egg in a separate skillet (not on the big shared griddle). And make sure they're using *real* eggs. make sure also the rice is *plain* as some places will season it, and then you either avoid it or find out what's in the seasoning.

Lunch, well, fish is pretty safe (not fried) because it's typically fresh and not injected with anything. I'm assuming you're not in the midwest, lol. Just make sure you know *everything* it's cooked with.

Merika