Feeling Hurt And Depressed

[mweinand]

I was told right before Thanksgiving that I have Celiac Disease. My husband and I went to talk to the dietitian and then decided that we were not going to go to our families for the holidays this year because - 1. I was really sick and feeling really fatigued and 2. I still wasn't comfortable with what do eat and not eat, cross-contamination, etc.

It was frustrating in the least the reaction we received from family members. From...."Come on you came pack a lunch and bring it along" to "just come and have a little".

I feel like a pain in the butt to give people the "What is in this" everytime they want me to try something, etc. They don't understand the depth of this situation nor the effects of my choices.

Can you share ideas of how you handle situations with others?

I feel alone and like no one understands.

[mushroom]

First off, try not to feel too bad and alone, because we ALL go through this phase. I did the same thing my first year because it was hard enough figuring it out for myself, let alone trying to explain to anyone else. It is initially very daunting and isolating until you develop the knowledge and wherewithall to handle it with grace and aplomb.

But they are right in one respect, you *can* come and pack a lunch. In many situations that is often the best way to handle gluten free eating, especially when you know you will be with people who you don't stand a prayer of educating and wouldn't trust preparing your food in any case. Social occasions are about getting together, not about the food as many of us have come to believe, and the getting together is much more important than the eating. The advice often given here is to eat before you go, then once you have learned how to make them, take a delicious gluten free goody to share and something for yourself alone.

As for the explaining bit, you can handle it any way you want depending on the sophistication of your audience. If it helps them to understand the seriousness of it, call it an allergy, or just say "I will be very sick if I eat that". For people who understand celiac disease, that one phrase should be enough. For those who don't, often a half-hour monologue would not be enough so why bother. That's where "I will be very sick" comes in." Or just a simple, "No thank you." the second time around. As for the "just a little" folks, you can say "not even a crumb" or "If I ate just a little I might as well eat the whole dish, I would be just as sick."

So the good news is that it gets much easier as time goes on; the bad news is that you will have to get used to people not understanding and develop a thick hide about it.

{{{{{Hugs}}}}} to you and at least we here understand.

[WW340]

You are correct, they really don't understand, but it is not because they want to be cruel (in most cases).

If you were them, you really wouldn't understand right off the bat either. So don't let your feelings get hurt. You are just learning about it yourself.

I do just take my own food and go to what ever function people are having. I don't want people to try to cook for me, because it took me months to learn how to avoid cross contamination, I don't expect a non-celiac to figure it out for one meal, or a weekend. That is really expecting way too much of anyone.

You might as well realize now, that it is your disease and you must take care of yourself. You will eventually get comfortable with asking what is in everything. You will learn how to manage it all, and it will soon become second nature.

It is not unusual to feel isolated and alone with this initially. It can be very depressing in the beginning. It all seems so hard, but it will get better. And you will find what works for you.

[ciavyn]

You came to the right place. I'm new to this world, too.

Two thoughts: 1. have a sense of humor about the whole thing. I tease everyone and say, "Actually, I'm a cooking snob and no one can live up to my standards." I always say it as a joke, and laugh if they say I'm being overly picky. Of course, I'm outspoken, so people disagreeing with me is not uncommon. I just avoid the topic, switch it onto their issues, and open my own packed dinner. But seriously - don't be too serious about it. Make people laugh, pack your own food, and don't worry about offending people. If you do, then they weren't much of a friend in the first place.

2. Don't assume that no one wants to travel this road with you. My MIL has asked me how to prepare dishes that can be made for me - she usually makes the meats for our family events. She's willing to put some effort in to make sure I can still take part. Who eats every dish anyway? I bring something else I will enjoy - usually a side and a dessert, and she makes sure the meat is okay for me. I had dinner at a friend's parents last night, and her mother is a home-ec teacher. I tried very hard to convince them before I got there not to worry about me. She wasn't having it. Instead, She went out of her way to make a lovely gluten-free meal, asking me each step of the way what I could and couldn't have, what might risk cc, etc. The entire family ate that way, and it was very, very good. Topped off with my gluten free brownies (which are amazing, thank you, Purple) and five layer dip, it was great.

Not everyone will go that extent, but a few might, simply because they love you. So don't lose hope. And enjoy cooking real food, and getting rid of all that nasty prepackaged food. Haven't you always wondered what was in all those chemicals anyway - wondered if it might be hurting your body? Now you can toss them without guilt, and make your own yummy dishes. Hang in there. It does get easier, and you are part of a community of people just like you.

[jststric]

I've only been at this for about 3 yrs and not a diagnosed Celiac. I recall just a few years prior my next door neighbor was a diagnosed Celiac and 2 of her sons. I didn't understand and when she would come over to a ladies Bible study she wouldn't eat things except fruit, etc and I thought she was just being picky.....but I DID have enough smarts to know I didn't really understand either. Now, that it's affecting ME, I look back and am thankful she didn't try what I tried to fix for her, as cross-contamination was not even on my radar at that time. This is one of those things that is just coming to light and older generations did not know about it, so it seems like a "new thing....a fad", putting a name and diagnosis on something small and they will never understand. I'm 51 and my elderly mother thinks I'm being "high-maintenance". But explaining things as an allergy usually works better than other things when trying to explain it to folks. Like I said, I've been at this 3-ish years and just feeling like I'm getting a handle on it. I used to LOVE to cook (and eat!) and went thru a phase of not cooking much of anything or even wanting to try to adjust my old recipes in a way I can eat. You will go thru phases and days and moods of feeling sorry for yourself and tired of having to always think about it. But it DOES get better!

[OptimisticMom42]

Gluten withdrawals can make you cry! Think PMS

Give yourself time. As you heal, and start absorbing nutrients your spirits will lift. I promise, RA

[koolkat222]

My husband and kids get it, and finally after a few years, my parents are starting to get it. My mom was always saying to try just a little. On several occasions, she just went ahead and cooked her way and didn't tell me!

Finally, I said, "Mom, why don't you put JUST A LITTLE rat poison in your food or eat A FEW pieces of jagged glass? That's what gluten is to my body!" It was kind of harsh, but she finally got it.

Hopefully, you won't have to resort to this, but at least you have a way of explaining to those who just don't/won't understand.

[jackay]

It isn't the taste of foods that gets to me but the smell. Guess I just have to imagine it all tasting awful so I can get by. I'm still new at this and it hasn't been easy.

For Thanksgiving, I ate turkey and fruit salad. I thought both were O.K. but I got to feeling pretty bad that night. At Christmas, I ate before I went. It was very hard watching others eat.

This past Sunday I was invited to my brother's for a meal. The doctored up Stove Top Stuffing smelled heavenly. At that time I so wanted to give in and eat it. Now that I think about it, I never did like Stove Top Stuffing. Never did taste as good as it smelled.

I attend a lot of local high school sport events. When someone walks into the gymnasium with a piece of pizza, I am about ready to grab it out of their hands. Again, I'm sure it smells a lot better than it tastes.

If only I couldn't smell food...........

[Lanie940]

It isn't the taste of foods that gets to me but the smell. Guess I just have to imagine it all tasting awful so I can get by. I'm still new at this and it hasn't been easy.

For Thanksgiving, I ate turkey and fruit salad. I thought both were O.K. but I got to feeling pretty bad that night. At Christmas, I ate before I went. It was very hard watching others eat.

This past Sunday I was invited to my brother's for a meal. The doctored up Stove Top Stuffing smelled heavenly. At that time I so wanted to give in and eat it. Now that I think about it, I never did like Stove Top Stuffing. Never did taste as good as it smelled.

I attend a lot of local high school sport events. When someone walks into the gymnasium with a piece of pizza, I am about ready to grab it out of their hands. Again, I'm sure it smells a lot better than it tastes.

If only I couldn't smell food...........

Try this for your stuffing. Bake some extra baked potatoes, if you have found a gluten free bread you like, you can make cruotons out of it, cut up celery and onion. put some butter in your electric fry-pan and sautee them all together, you can use a little milk for moisture of I understand

swanson's broth is ok to use from my gluten-free cookbook. then just bake it in the oven for a bit. We can eat poatoes! The firehouse Aux i belonged to many years ago, the cook ALWAYS mad potato stuffing, it was so good!

[mysecretcurse]

I think it's your duty to go, if anything, so you can help educate them. It's hard and frustrating as hell and they don't "get it", but if they are any sort of decent people, they will, with a bit of help. I had family functions where I walked in and had someone say to me with a smile "I made special food for you!" only to have me look at the ingrediants they used and have to say "No... I really appreciate the effort.. but I'm sorry you used cream of mushroom soup in this and it contains wheat as a thickener" and have this lead to hurt feelings, anger, and me being accused of being "picky". It wasn't because they are jerk offs tho, its because they are frustrated too. Its frustrating for all of us, celiacs and our families. But thats how we learn! And I spent a great deal of time educating my family and they "get it" now. The "just a little bit" of rat poison or glass is a GREAT analogy. They need to understand this isn't just a "not healthy food" for us.. it's POISON for us. And education works. You don't know how many times one of my friends has come to me and said "someone was talking about celiac the other day and I was able to correct them on some things because of what I know from you!"

it's a good feeling, hang in there, you'll get through this hard phase!