Well Meaning Stores, Restaurants And Friends - What Do You Do?

[Klauren]

This past Friday a friend took me to an earth center store/restaurant that was supposed to be "great" and caters to vegans and those on special diets. I was very careful with my selections and was ASSURED what I ate was gluten-free - well I was sick all weekend. Obviously it wasn't. Now that I am feeling better, I had a friend over for lunch (I now have everyone over instead of going out to avoid being glutened) and she brought me a tiny cake from a bakery in New York City that they told her was gluten free - I even called them myself to confirm it was gluten free. I still was reluctant to eat it, but the friend pressured me telling me she bought it especially for me and checked it out and it was made with amond flour... now I sick AGAIN, and literally crying, WHY did I take the chance? I was finally starting to feel better. I am just a month into this and beginning to put some weight back on and starting to sleep at night and having fewer anxiety attacks/panic and each of these episodes sets me back so much. Does this happen to others - it's so frustrating!

Who do you trust, how do you know if your safe when told something is gluten-free. How do you deal with friends who want to "help" you? I feel bad for other people who mean well and urge me on, saying "here, you need to add things to my diet." Why would I take a chance to appease them? When I say no, even with an explanation, they look dejected because they were working hard to help me and find things that are safe for me. I thought my friend was going to cry when I wouldn't eat the cake so I just had a small slice and it has cost me dearly - how stupid!

[Jestgar]

I know, it sucks. I'm so sorry.

I don't eat anything new, or from a new place, unless I'm prepared to get sick.

You could try telling your friends that you "read on a Celiac site that your intestines heal more quickly if you avoid..." then put in whatever you think will keep them from giving you "treats".

Could be grain, dairy, soy, processed food, broccoli... whatever serves your needs. This might give you some time to scout out places on your own, so you can have a better idea of what, and where, is safe for you.

[Mother of Jibril]

When I first started the gluten-free diet, I thought I was safe if I bought products that didn't have any gluten ingredients. Boy was I wrong! Some people are fine with them, but if you're really sensitive (like I am), then cross-contamination is a BIG problem. Was the whole bakery a gluten-free bakery? If not, then unfortunately it's soooo easy for gluten to get into the air and settle on the "gluten-free" goodies. Or let's say you go to a place that has gluten-free pizza. Do they mix the crust in separate bowls? Do they cook it in a separate oven? If not, and you're sensitive... then you're going to get sick

I know it really sucks. You might have an easier time once your intestines have healed.

[MaryJones2]

Well, the only advice I have for you is to just say no! Trust no one and make no apologies for not eating their food or bringing your own food. It's less stressful for everyone. People try so hard to accomodate us but they really can't unless they live our life and truly understand our needs. So the best way to deal with it is to bring your own food.

Hopefully this will make you feel better:

The worst glutening was from a restaurant with a celiac manager who assured me I would have a gluten-free meal but didn't think it was a big deal that the gluten-free pancakes she made for me were cooked on the same grill (until the next day)...

The hardest conversation was with my mother who tried so hard but I got sick every single time so I had to stop eating her food.

The most pressure I've received was from my celiac hairdresser who just thought I was being rude because I wouldn't try her Pamela's cookies (with dairy).

The most socially embarrassing situation I've encountered was at a friends wedding when I said no thank you the special wedding cake that was specially ordered for me and made by a reputable baker who said "gluten-free - uh, I think can do that!" and couldn't tell me that it was dairy free or made with the same pans, etc.

The most unconfortable professional situation I've been in was a party hosted by one of my husband's colleagues. The hosts spent the afternoon at the grocery store reading ingredients. They cooked everything and did a pretty good job but put the crusty bread right by the gluten free food and by the time I got through the line the gluten-free food was covered with bread crumbs.

[Crystal Brown]

This past Friday a friend took me to an earth center store/restaurant that was supposed to be "great" and caters to vegans and those on special diets. I was very careful with my selections and was ASSURED what I ate was gluten-free - well I was sick all weekend. Obviously it wasn't. Now that I am feeling better, I had a friend over for lunch (I now have everyone over instead of going out to avoid being glutened) and she brought me a tiny cake from a bakery in New York City that they told her was gluten free - I even called them myself to confirm it was gluten free. I still was reluctant to eat it, but the friend pressured me telling me she bought it especially for me and checked it out and it was made with amond flour... now I sick AGAIN, and literally crying, WHY did I take the chance? I was finally starting to feel better. I am just a month into this and beginning to put some weight back on and starting to sleep at night and having fewer anxiety attacks/panic and each of these episodes sets me back so much. Does this happen to others - it's so frustrating!

Who do you trust, how do you know if your safe when told something is gluten-free. How do you deal with friends who want to "help" you? I feel bad for other people who mean well and urge me on, saying "here, you need to add things to my diet." Why would I take a chance to appease them? When I say no, even with an explanation, they look dejected because they were working hard to help me and find things that are safe for me. I thought my friend was going to cry when I wouldn't eat the cake so I just had a small slice and it has cost me dearly - how stupid!

Woo, the beginning is HARD.

Just remember this - the people who offer you the food, don't have to pay the price because of it not being what it is "supposed" to be.

If they get offended, so what! They will cry for 10 minutes, hold a grudge for a little while, but if you eat that thing that is contaminated - you will pay the price much longer than they will be offended. And you know what, if they are going to hold a grudge because you didn't appease them, then maybe they don't need to be in your life. Your health is more important than making them happy!

I actually had a stand-off with my Celiac aunt. She bought me some gluten-free items and when I declined to eat one of the items, she about had a tizzy fit! The thing is, she plopped it in a shared pan and I knew the spices on that item would effect me. (She isn't a hardcore Celiac, being that she hasn't had a positive blood test.. so she lives more by the gluten-intolerant standards than the hardcore sensitive Celiac standards).

I said "Thank you so much for the offer, however I think I'll pass."

Her, "I bought this for you though."

Me, "I know and I greatly appreciate that, but it's not worth the risk."

Her, "What risk, it's gluten-free?? Why are you being difficult?"

Me, "Look, again, I appreciate what you did, but I cannot eat this - I know what makes me sick and what doesn't."

Her, "Fine then. Do what you want!"

Then she stormed off and said she had a headache the rest of the night... she actually ate what she offered me and another gluten-free item she brought.. I have to wonder if she reacted from her own food.

The thing is, everyone that doesn't have the disease and the ignorant ones with the disease, will think they know what is best for you. They don't. You know your body, you know what will happen if you get CC'd and since you said you just started gaining weight.. it is a big deal to make sure your friends, family, colleagues, whomever don't influence you to eat contaminated food.

Oh and with the weight gain - make sure to eat protein! Don't forget the protein.. I'm also a weight loss Celiac and it is has been quite a challenge to put the weight back on.

I hope this helps

Best of luck!

[NorthernElf]

Where I work food abounds ! Everything - from brownies to cakes to cookies and sometimes they bring in pizza. I just make sure I have a stock of my own food (we have a fridge) so I can eat my stuff at the same time. One day someone brought in a container of gluten free cupcakes - they were in the fridge and everyone was telling me to try them. I refused - said it was too risky. I told them that at home I have my own set of bakeware, my own countertops, etc. I still don't know who brought them in...but I'm willing to bet they won't again because I explained my reasons as to why I wouldn't eat them. I think it was nice someone tried, but it really isn't worth the risk. Everyone else ate them anyway.

[ang1e0251]

You are just going to have to let every one know that you will not eat anything anyone else cooks, whether cooked by a friend, a family member or a bakery. Tell them if they want you to expand your diet they can give you packaged mixes that you can bake yourself. But even then these items may have ingredients that you are sensitive to and you will not be able to eat. A better idea would be a gift card for a gluten-free market.

The flu has been going around my area and I've been telling those who have it, now you know how I feel. Your family and friends cannot really want you to feel like that. They just have no concept of how it feels or how little can set it off. You'll have to take their hurt feelings till they back off.

I guess if someone causes a scene you can just say , "Why are you being so mean? You want me doubled over in pain, in the bathroom all day?" That would surprise them. They don't really have that picture in their mind when they are pushing their food choices on you. Gluten isn't the only thing that makes you sick, there's cc and maybe even ingredients you react to you haven't identified yet.

Sorry it's so hard for you but you are the one in charge of your health and no one else.

[Welda Johnson]

Hi,

I'm feeling for you and what you're going through. I'm 64 and have had Celiac symptoms since age 8, long before anyone ever thought of Celiac as a reason for my illnesses. Since I was getting help from no one else, I started elimination diets during my thirties, and continued throughout my forties and fifties. Now I know that all grains, all milk & dairy, egg whites, yeast, maltodextrin, modified food starch, casein, whey, and msg are foods to which I am intolerant. With you being newly-diagnosed, I would suspect that time will tell which other ingredients you might be intolerant of, since our systems seem to get more sensitive as we take good care of them.

Is there any way you can graciously accept what someone has brought you, somehow making an excuse to not eat it at that moment? My 82 year old neighbor gave me a box of chocolates for Valentine's Day, and I never mentioned that to eat them would be the death of me. I simply made him a thank you card and wrapped up some of the candy for him to enjoy, thanking him over and over again for his thoughtfulness.

There's one thing I've learned throughout these many years of dealing with Celiac--when I began taking great care of myself, making sure I always had what I needed for my diet, and always taking my own food along, no matter where I was going, everyone else just seemed to relax and take deep breaths, assured that I could figure out for myself what to eat and when. That's the same point at which my anger, rage, disappointment, anxiety and depression over being "different" started to dissipate. Even now I don't really like eating out, because I have an eating schedule at home that allows me to eat just exactly what I need and want at that particular time, and we all know that we can't say that about eating out at restaurants.

I hope that as you traverse this path to recovery, you find it easier and easier to deal with these issues. Welda

[mbrookes]

[Welda, I like what you said about others relaxing. I know just what you mean. And I'm almost over the "poor me" except for occasional bouts. It has been 14 months since I wsa diagnosed.

I know I am fortunate because I don't have a lot of sensitivities other than gluten. Dairy, eggs and most other stuff is OK for me. I've read that distilled alcohol is safe, but it is not for me. I do love a martini, but now it is a potato vodka martini.

Thank goodness for wine, tequila and rum. I sound like a big old drunk, but I just have a very active social life.

I am sorry that so many of us seem to have trouble with depression. I guess I felt so bad (in fact, I was in the hospital near death) that I can put up with anythinmg that makes me feel so good. I am 64 years old and have more energy than I have had for years.

I guess my message is "hang in there" Gluten free, although difficult, is totally worth it!

[Klauren]

THANKS EVERYONE! I still have pain today, but I am hoping it will improve tomorrow, last week it took 2-3 days to get better> I will have to get comfortable with a firm NO.

How do you all deal with vacations? I am so lucky to be able to go on one! My husband has a business trip to Puerto Rico and I get to go - BUT HOW ON EARTH AM I GOING TO EAT?

[MaryJones2]

When we travel we like to stay at apartment style hotels with kitchens. I can at least eat breakfast and dinner there (even if it's early or late) and pack a lunch. I've been in a few professional situations where we've had to say well it would be great to stay at this hotel with everyone but we really need to stay down the street so we'll meet you for breakfast (even though I don't partake), after dinner drinks, etc. If it's a weekend trip I bring staples and an electric wok so I can make food in the hotel in case the hotel kitchen can't accommodate me. It's not optimal but I'll take that over getting sick on vacation any day!