I Want To Complain!

[mytummyhurts]

I want to complain to people who understand about how much this disease sucks. Just when I think I'm getting used to all the ways my life is going to change I find out something else that I'm no longer going to be able to enjoy. We went to a music festival this weekend where they have a bunch of food booths and I had to pack a lame pb&j sandwich while my husband sat there and enjoyed all his yummy food. There's no way I could have found anything gluten-free because every place was so busy it would have been extremely difficult to ask any questions. I'm just depressed because now I'm thinking about all the fun places we used to go and just eat anything and now I won't be able to do that. For example, we have a large fair in my town every year and now that will be a pain. And depressing. It's hard to think that you are going to have to be this way for the rest of your life. And it's not like a diet that you can cheat on when you have a special occasion. I know this is kind of stupid to complain about when so many other illnesses you can't solve just by avoiding certain foods. But I'm depressed about these things.

[shimma]

I understand how you feel. Sometimes when I have to eat something different from everyone else (like at work, or a restaurant, or out on the road), I like to try a new recipe or pack something I don't usually have. Then I get excited about my lunch and don't worry too much about what other people are having. If you can't try something new, at least bring your favorite treat along with your plain PBJ sandwich. Then you'll have something to look forward to!

[Guest Viola]

I know what you are talking about and I agree fully. Even though I've been at it for a long time, I still miss the big BBQs, buffets and walking into a Chinese restuarant and eating everything the rest of the party is having.

I would also like to say that it's nice to see a very honest opinion on this. Yes, we can have healthy veggies and fruit etc. etc. But ... sometimes you just have to admit the whole thing sucks!

For the rest of the times, it's not so bad as many other things in life.

[skbird]

I went to the fair this past weekend and there is *nothing* there I could eat, except drink the bottled water. It was a major bummer. I guess it's ok because it's all really terrible, overpriced food anyway but still annoying. I went home after and made myself a killer pizza on kinikinick pizza shell though!

Oh yeah, another good thing about not eating the fair food, not barfing after going on the rides. Though I was getting over a gluten or IBS reaction anyway and was a little unsteady despite not eating the fair food!

Stephanie

[Guest nini]

Oh Man, I can totally sympathize! I hate it that I will actually avoid doing something fun if it involves food. It stressed me out to badly. We skipped out on a BBQ at church this past Sunday because I didn't want to chance getting my hot dog contaminated on the grill or having to settle for something else I brought. I was angry because I wanted me and my daughter to be able to just chill out with everyone else and enjoy hamburgers and hot dogs and all the decadent desserts that people brought... so we just went home and I pouted for the rest of the day. It's not fair for my husband either, because what if he wanted to stay? I didn't even give him the chance to say if he wanted to or not. I just said point blank, we aren't staying.

[terri]

I know exactly what you mean! This weekend we're going to the huge state Wine Festival and will be there most of the day. My husband casually mentioned last night, "what are you going to eat?" Then it hit me. My family would be eating at one of the many vandor booths there which are COMPLETELY off limits for me! He said, well you better pack a lunch box. Great! Now I have to carry a stupid lunch box at the wine festival as we're going by bus so I don't have a car to leave it in. Not to mention I'll be nibbling on a rice cake while they are having yummy food. Oh well, at least I don't have to give myself a shot everyday. That would bother me more. Gotta keep looking on the bright side, but it does feel good to vent now and again!

[mytummyhurts]

That's why I wanted to post this on here. I knew you guys would totally understand me. My family and husband know that it's hard, but they don't really know! Because they haven't had to experience it.

My problem about packing good stuff is that I'm still getting used to just cooking in general. We never cooked before and I'm not that good at coming up with stuff to make. So I just stick to pb&j when I know I'm not going to have anyway to heat anything up or refrigerate it.

And it's true that those foods at the fair and such are not good for you anyways. But that doesn't really make me feel any better.

[Guest gfinnebraska]

Yes... this celiac disease thing is the pits when it comes to "giving up" food that everyone around you is woofing down!! I made two cherry pies this past weekend for a get together with friends. They were fresh cherries from our trees... looked SO good!!

I also made chewy brownie cookies -> totally yummy looking!!!! THEN, sat there and watched everyone else eat them!! Totally frustrating!!! I just try and picture their bottoms growing and mine being little. Hahahaha! Catty?? YES!!

Does it help?? YES!! I came home and made some ginger cookies out of the SCD book. They weren't nearly as good as the other items looked, but they had to do!!

Just keep telling yourself how healthy you are making yourself by skipping the deep fried, sugar filled foods, and opting for pb&j or fruit or veggies.

[tarnalberry]

as you point out, you're just getting the hang of cooking and making gluten-free stuff - so it will get better. no, it's never as fun and spontaneous as trying whatever, wherever, but better is still better.

[jknnej]

celiac disease does suck!

I went to St. Louis this weekend. On the way home, I had prepared chicken for right before the airport and long trip home.

Well, of course hubby and I forgot the meal and it was left 45 minutes behind and we had to be at the airport in 45 minutes.

Before this disease I would have grabbed a bite anywhere! Instead of spending our last 45 minutes with his family, where were we? Driving around town, trying to find something I could eat!!!!!

LAME!

[mcalistorm]

I managed to luck out in this area. Both my parents have celiac disease, my inlaws are diabetic so family outings are ok cause we all get to whine about the food choices . My friends have been real accomodating about the gluten-free thing at parties and always have someting delicious and gluten-free for me to eat. My friends rock! I went to the rennisance faire near us and was thrilled to find a shop selling fresh fruit..which was the only thing really safe out there. It was a serious drag watching my friends eat everything else in sight though. I worked at the faire for many years and it sucked not being able to eat any of my favorites. I have been sober 16 years though so as a recovering alcoholic I became used to watching people consume things I can't. It gets easier, I just don't dwell on what I am missing and find some other way to have fun, then make myself a treat when I get home.

Lucky both me and my husband are both good cooks. I don't miss fried food because I have it all the time. Fried shrimp in a lemon sauce, last niight..Yum. I get the sauce from PF Changs, a chinese resteruant with a great gluten free menu, Outback steakhouse also has a gluten free menu so I can eat out gluten-free fear free

There is also a gluten free bakery in Dallas/Plano. It is a twenty minute drive for me but well worth it. I just thank God I am not allergic to chocolate. Now that would REALLY suck Try and keep a positive attitude guys, I have a degenerative back disorder that will eventually turn me into a quadrapeligic. When people find out they always ask how I can keep such a positive attitude all the time. I can't change reality so I just accept it and move on. If you get bummed out find someone in worse shape than you are and help them have a better day. One of my friends died of Aids at 17. Towards the end he was dragging around a IV and looked like a holocaust survior, and when we all got together he was always the most positive person in the room. He was in constant pain, dying by degrees, he was just a kid and if you were having a bad day he was the first person to try to cheer you up. Whenever I have a bad day or think my life sucks I just remember his courage and think comparitively my day is not so bad. Life is not over, we just have to watch what we eat. Go out! Have fun! Live life to the fullest.

However, it is great to talk about this with people who actually understand what you are going through.

If anyone wants recipes for frying food just email me and I will send you some.

[Guest gfinnebraska]

Great post!!! Thanks Mcalistorm!! Something we all need to hear...

[Guest Viola]

One of my big beefs is when we go into town for the day (we live in the country) My husband or parents will insist we HAVE to go for lunch. I just picture the old standing scrambled eggs and bacon, or a boring salad, and say ... you go, I'll finish the shopping and grab something when I get home. ... No way, I have to go and eat, or they won't go. Frankly, I'd rather wait until I get home and have something better. Mom of course has to eat as she is diabetic, so I have to go and get either the eggs or salad down my throat.

How can something as life saving and basic as food be sooooo darn stressful. And why can't people understand that you really, really don't mind skipping a meal, or at least waiting for another couple of hours ??? I'm getting so I'd rather go in and do everything by myself so I can skip the lunch.

[bigapplekathleen]

Hi everyone,

I go through periods of being very angry about the constant issues with going out or going to events involving food. However, I have gotten very adept at eating out, and go to restaurants 5 or more times per week. (A year ago, I wouldn't go out at all.) I always ask the manager when I arrive (or sometimes call in advance), "what is the easiest thing for you to prepare gluten and egg-free." Usually, getting broiled salmon or a broiled steak is the easiest, and I have discovered that a lot of places don't use wheat in their sauces. I always tip well when the accomodations are made and frequently recommend the restaurants to friends. Some tips for eating out:

Chinese restaurants are VERY accomodating. Their woks are always very clean (otherwise, the food sticks). You can ask for no flour, but often they use cornstarch (which is gluten-free) for thickening. The white sauce is usually the safest.

Steak houses are easy, too. Grills are very clean. (watch out for 'griddles'...bread is often placed next to the meats).

Mexican food has become my favorite. It is SO easy to get gluten-free food there. Corn tortillas and chips are the norm and sauces are nearly always gluten-free.

Thai food is great, too. The rice noodles are awesome. Sauces can easily be adapted to be gluten-free.

All the chain restaurants have gluten-free and "allergy" menus on their websites. I can eat at Burger King, Wendy's or McDonalds knowing the food I choose is 100% safe.

I rarely pass up a restaurant out of fear for their food (though I did yesterday at a french restaurant where the staff was very rude right when we walked in the door...not worth the effort/explanation/risk)

I even went to my first Yankees game this spring and ate a hot dog (without the bun), some popcorn, cotton candy, soda, etc...all gluten-free.

Yes, it sucks at times, but for the most part, the foods I am passing up are not good for me anyway. I am going to Italy in July and am really looking forward to eating all the delicious foods!

Kathleen

Diagnosed gluten intolerant by blood test Aug 2003

gluten-free since Aug. 2003

diagnosed with peripheral neuropathy in May 2004

I don't carry either gene for celiac, but have been diagnosed as Non-Celiac Gluten Intolerant

Immune deficiencies have corrected themselves since I started the gluten-free diet

(I did a 5-week gluten challenge in March 2005, which I abandoned after passing out twice and having serious immune system problems again)

Allergic to 50+ foods (including eggs, brocccoli, carrots, yeast, spinach, black pepper, and so many more common foods...)

I now follow a PALEO (grain-free, legume-free, dairy-free) DIET 90% of the time

[ianm]

Well I really hate to rain on everyone's whine parade but I just don't miss all the crappy, toxic food they serve at fairs and other events. I used to weigh over 250lbs, high blood pressure, borderline diabetes, chronic fatigue, etc. All of those problems are gone and I will gladly eat only the foods I can safely eat. I never want to go back to being who I used to be. I don't miss that person at all.

[celiac3270]

Well I really hate to rain on everyone's whine parade but I just don't miss all the crappy, toxic food they serve at fairs and other events.

It's fine...that's the best situation--where you truly don't miss the gluten food and wouldn't want it, anyway.

For me... I would never again eat gluten and for the most part, I don't miss gluten foods. The main things that bother me about this, though, is that all spontaneity goes out the window. You always need to remember to bring your own food and that can also make you feel alienated. Finally, $$$. Other than that, I don't really have a problem with this diet; I would never go off of it despite these gripes, but those are just a few of the main problems. Otherwise it would be fine...there are some great replacements and some replacements are better than the original (such as Tinkyada pasta).

-C

[KaitiUSA]

I see where you are coming from and understand but if you think about it do we really have it that bad?

A woman we know (42) was a cancer survivor now they found out she has cancer in her liver,lungs, and breasts. She has 3 kids under the age of 6

A girl(15) we know is in the hospital with cancer right now.

Some people have absolutely no place to sleep , and don't know when their next meal will be because they have no $ or food.

There are so many examples...when I get in those moods of feeling sorry for myself I am constantly reminded of how good I have it.

Can it get annoying if people are rude and inconsiderate about it..yes

Can it feel like nobody knows what you are going through...yes

Can it be a pain to lose spontaneousness because we have to plan what we can eat and where....yes

BUT...

Do I miss gluten containing foods...no

Do we have it bad...no

We can control this disease very easily which in alot of diseases you can't say that about.

We can eat alot of good foods and alot of them are comparable to the gluten containing kinds.

I feel that I am extremely blessed...even though I have this disease I can use this to help other people that may be new to the disease and don't know what to do...if I didn't have this disease I wouldn't have found so many awesome friends on here, or help people like I do now.

My mom always tells me "Be the change you wish to see in the world"

[jenvan]

I get what everyone is saying. I think it is good to acknowledge that yes, this lifestyle can be overwhelming at moments, and it can be complex, and that for many of us, our friends have a much easier time eating and being flexible. I think that for some of us to not acknowledge when it gets hard, might cause other problems. But as Kaiti said, I think it is a good to keep a constant remembrance in the back of our heads of those who struggling in even harder ways.

Suffering can be relative, so just because someone is struggling harder or longer than us doesn't negate our own suffering. However, it does give us the ability to be grateful for what we do have...

[lovegrov]

"All the chain restaurants have gluten-free and "allergy" menus on their websites. I can eat at Burger King, Wendy's or McDonalds knowing the food I choose is 100% safe."

I also hate to rain on any parades, but fast-food restaurants are FAR from 100 percent safe. I know a woman with celiac disease who used to own six of them and she wouldn't eat at any even though she was the owner because of cross contamination. I do eat at them occasionally but I try to keep it to a very minimum.

I assume that people who eat at Mexican restaurants (I do) remember to check those chips. Frequently they are thrown in contaminated oil.

Cross contamination is a big factor at any place. Celiac experts will tell you that eating out five times a week is a VERY, VERY bad idea because you are almost certainly getting traces of gluten a high percentage of the time. I think the general recommendation is to eat out no more than a couple of times a month.

richard

[hsd1203]

not to say that I don't have my pity me days, but this thread made me think of some things I thought I might share...

kimberly, get yourself a bette hagman comfort foods cookbook and try the vinegar pastry crust... I tried it right after I went gluten-free and it really tastes like real pie crust... I even made cherry pie with it last weekend for some unsuspecting dinner guests and everyone raved and some people even went back for seconds. and you can easily thicken the filling with cornstarch.

all in all, if I'm being really good and not risking cross contamination anywhere, I really don't crave any gluteny food... usually if I find myself salivating over dh's pizza, its a wake up call for me that I need to reexamine my diet and see what I might be eating that I shouldn't be.

hang in there, it gets easier, and really just feeling so much better is worth the "sacrifice" of not eating gluten.

h

[Guest Viola]

I miss the freedom of being able to go anywhere and not worry about FOOD!

I think how this thread started was someone trying to defeat a bout of depression, which does crop up now and then.

YES, there are tons of things much worse than Celiac disease, I'm sure we all realize this, however, if someone is trying to get out of a round of depression by venting their feelings, I don't think we should make them feel guilty by pointing out the person down the road with cancer.

When I am having an argument with my family about whether or not I can eat this, or go there, I'm not going to think of the other people in worse shape. I'm going to be feeling frustrated and need someone to understand ... which is what we look for in this forum. Understanding.

[VydorScope]

COMPLAIN? I can not express how happy I was when I found out my toddler had celiac disease! celiac disease is a known thing, with lists of do/donts that I can work with. Sure as heck beats the heck out of all the random guessing and problems and sickness he had up till now. Since finding out he has celiac disease he has been taken off of ALL medications. Maybe in a few years I wll learn to hate the restrictions of celiac disease, but for now I love being able in most cases say "Yes he can eat that" or "No skip that". And for the mistakes, at least we know what is happening now and that helps blunt the blow a bit.

I guess Im just odd.

[KaitiUSA]

I miss the freedom of being able to go anywhere and not worry about FOOD!

I think how this thread started was someone trying to defeat a bout of depression, which does crop up now and then.

YES, there are tons of things much worse than Celiac disease, I'm sure we all realize this, however, if someone is trying to get out of a round of depression by venting their feelings, I don't think we should make them feel guilty by pointing out the person down the road with cancer.

When I am having an argument with my family about whether or not I can eat this, or go there, I'm not going to think of the other people in worse shape. I'm going to be feeling frustrated and need someone to understand ... which is what we look for in this forum. Understanding.

Yes, we all have those days when we need people to talk to .

The objective of what I said was not to make the person feel guilty by pointing with cancer. The objective was to show we have it alot better and to look at the good things rather then the bad. If you read my whole post I said I see where you are coming from and I understand...hey I have been there so I know exactly how she feels. I still have those days but also when I am feeling down..my parents constantly remind me of those things I mentioned..they always say "it could be worse" and that has really helped me. I'm sorry if anyone took what I said the wrong way..it was not meant for you to feel guilty...it was trying to help and put things in perspective.

[tarnalberry]

Meh... I was dealing with hypoglycemic issues before the gluten-free diet, so the concept of making sure to bring food with me was already there, this just changed what food I made sure to bring with me (and not by a lot...). I guess I just don't find that it sucks all that much - but a lot of that is deliberately minimizing the focus on food and maximizing the focus on people internally - regardless of what other people focus on. It'll be different for all of us, and we all have to find our own best coping mechanism.

[rlmom]

I know this is not fun at all. I was diagnosed 2 years ago. It all started after my divorce!

Anyway, I'm not hear really to complain but to tell you about a recent positive experience. I went to DisneyWorld, Orlando with my sisters. At each restaurant that we went to when I asked questions, the chef came out to talk with me. At the RainForest Cafe the chef had gluten free bread for a cheesburger! At a buffet in MGM the chef walked me through the line and pointed out all the food I could have, and it was plenty. I've also heard now that several chain restaurants have gluten free menus if you ask. When I get the restaurant names, I'll post again.

So while it would be better not to have this disease and I'd really like to have pizza, public awareness is getting better. My daughter was tested last week and I'm praying it comes back negative.

To those of you who found bread that actually makes a decent PG&J could you post the brand, because I haven't found one yet!

Robin