Nobody Gets It!

[youLOVEamelia]

So, I was diagnosed with Celiac's August 28th, 2007. September 2nd, 2007 was my first day of college. Great timing, right? Even though I feel like I made a lot of very good friends at school, all of whom know of my condition, nobody really gets it. They get annoyed when I complain or can't go to a specific restaurant. One time, we went to NYC and one friend got angry that I wanted to get sushi since I have my own gluten-free soy sauce. Is a california roll so much to ask for? So she decided that for dinner she wanted to go to a pizza parlor. KILL ME! And when I said I could have anything she said, "Oh, you can have salad right?" Salad? Are you kidding me? I didn't come to New York to get myself a salad. Besides, you never really know what's in their dressing, right? So where did I eat? MCDONALDS!!! Fries are safe enough. I was so angry though.

My mom has been really supportive, but sometimes I think she gets annoyed when I get depressed. Or she'll not eat something just because she knows I've been craving it. I really appreciate the gesture but that just makes me feel guilty. I know it's almost been a year, but there are times where I just want to cry because all I want is a slice of pizza or a cupcake.

To make things worse, I've been trying to gain weight since I was about twelve. That's when the rumors started that I was anorexic. As of now I'm 5'5'' and 102 lbs. And I gained a little this year. The nutrient deficiency really keeps me from gaining weight! Does anyone else notice that or is it just me? And all of my friends are like "At least you won't get fat." Or "You'll never have to diet." Are you kidding me??? I'll never have to diet? Meanwhile, I've been having my own issues with my body that makes it hard to put comments like that in perspective.

Sometimes I just feel like nobody will ever understand.

[Fiddle-Faddle]

Welcome aboard!!

FYI, most brands of the crab sticks they use in California Rolls contain wheat starch.

Sounds like you need new friends!

Your mom is obviously trying to be supportive. How about if you and she buy a whole bunch of gluten free mixes, flours, and xanthan gum, and google gluten-free versions of every recipe you've ever loved? And then have a big baking fest!!!!!

There are GENIUSES out there who have perfected gluten-free recipes for chocolate chip cookies, breads, cakes, pancakes, muffins--anything you could possibly want!

A good start is Annaliese Roberts' Gluten-Free Baking Classics, which has the best gluten-free chocolate chip cookie recipe, and the best cake recipe I've ever made, including gluteny ones. There is also Roben Ryberg's The gluten-free Kitchen, which uses cornstarch, potato starch, and xanthan gum--no other flours needed!

More and more restaurants are getting gluten-savvy. Be patient, and either figure out a way to get your friends to hear you better, or get new friends!

[elonwy]

Next time you're in NY, get gluten-free pizza. Risotteria in Greenwich village : Open Original Shared Link

Place is amazing. Eat there every time I'm in NY. And everyone can have pizza, cause they have gluten stuff too.

Also, they have amazing cupcakes too

[youLOVEamelia]

Fiddle-Faddle:

Wow, don't even tell me I've been cheating my diet all this time without even knowing. Thanks for the tip though!

I really do appreciate everything my mom's been doing for me. I have my own gluten free shelf in the closet (which occasionally gets littered with my older sister's gluten filled crap, thought it's hard to keep things separate with six people living in one house). And we have been finding some really good cake mixes. Cause You're Special Inc. has some really great mixes.

Whenever I go out, I opt for PF Changs since they have a gluten free menu. That's always a plus!

I think my friends at school try to understand, but it's hard when they aren't going through anything like this. They do their best to be supportive, but get annoyed when I complain too much. It's tough too because my college has a limited selection of food to begin with. My friends at home are a little more understanding because they've known me for a long time and they know when something is bothering me. The only problem is I don't see those people for more than half a year because we're all at different schools.

When next semester starts I think I'll try sitting my friends down and telling them how I feel. It's just so frustrating!

Elonwy:

Thanks so much!!! It looks good on the website! =D I'll definitely try to get there next time I'm in NY.

[ShayFL]

I have the same frustrations, anger, depression about my body. The food is the least of my worries.

I get nervous when I book a play date with a friend (shopping or eating doesnt matter). Will I be able to walk right. Will my ataxia be obvious. Will I have a migraine and have to cancel....AGAIN!!

When my family wants to do something fun on the weekend. Will I be too sick to go? What must my daughter think of her Mom? How I have I failed everyone? Why cant I be normal physically? Mentally? Why why why?

I have never said, "Why do I have to eat gluten free?" I just want it to work, so I can carry my damn food with me everywhere I go and be frickin normal on the inside and outside. Think like a normal person. Walk like a normal person. Feel my skin like a normal person. Have a clear head and carry on a conversation without having to brace myself against something.

I'll cook. I'll bake. I'll buy gluten free. And I will carry it in my purse on every outing. Eating out with friends, a day at the park, a trip to the mall. These are what I CRAVE!!! It is so not about the food with me.

[youLOVEamelia]

Oh my god, I get that way too! I feel like I can't go out with my friends because I'll either have a stomach ache or a headache. I also have IBS and I get nervous stomach aches. I want to be normal too! I feel like such an outcast. And whenever I cancel on someone, they think I'm being lazy or faking it. That's so frustrating!

The food worries me because I want to be healthy for once. I feel like I've been sick my entire life. I've been getting migraines since I was in sixth grade and my stomach has always bothered me since I was a little kid. I've gotten used to eating whatever I want, but now I'm so worried about accidentally cheating that I feel guilty when I eat at all sometimes.

But I completely understand what you're saying. I'll do anything just to be healthy and go out with my friends!

[ShayFL]

Everyone's situation is different. But now if I get asked out for a meal, I take a protein and a carb in my bag. So, yes, I can always get a salad if there is nothing gluten-free for me. I dump my chicken/tuna/turkey on the salad, drizzle with olive oil, balsalmic, salt and pepper and enjoy. I treat myself to some pricy fizzy water. And afterwards eat my carb (usually a cookie or muffin). Went to a dinner party and brought my own dish. I explained to the host, that I had to dish mine first with a clean utensil. No problem. So far, no one has said a thing about it to me. They all hope I get well!! I dont have a wide circle of friends, but I have enough. But I will do these things with people that are new or not friends as well. I simply dont care what anyone thinks. That is not my problem.

[Juliebove]

McDonald's fries may not be safe either. Their oil contains wheat and dairy. Some people seem to have no problem with them, but they do not call them gluten free. Daughter is allergic to both wheat and dairy, so we avoid them.

I lived in NYC for a few years and most of the Italian places, even those that call themselves just pizza places have really good salads that you can't necessarily get in other places. They usually use fresh mozzarella and lots of meats and other cheese. Salad Caprese or Caprice (I've seen different spellings) is fresh mozzarella with basil, balsamic vinagrette and olive oil. You can always ask for it with no balsamic vinagrette if you have any worries about gluten in it.

[Lisa63]

I completely understand where you are coming from. Alot of people are ignorant to Celiac Disease. We have to try to be just as patient with them as they do with us. It is very hard, trust me I know. I too am newly diagnosed (only a week now) and finding it very hard not to complain.

I also understand yopur difficulty with gaining weight. I cannot gain any either. I am 5'7" amd only 110 pounds. I try and try and don't seem to get anywhere. All we can do is try the protein shakes and keep trying. Good luck to you and I hope your friends become more understanding. (ask them to try a gluten free diet for one day with you and see how they feel). Lisa

[Fiddle-Faddle]

Maybe you can print out this thread for your friends!!

Are you a student in Manhattan? I went to school there--great place to be a student!

And yes, Cary Grant ROCKS. His Girl Friday, Bringing up Baby, Philadelphia Story, North by Northwest--oh, don't get me started! (SIGH)

[sickchick]

I first got sick when I was in college (I was 24) my life changed so dramatically I lost all my friends but 2.

AND the boyfriend I was seeing at the time. (he thought I was faking being sick for attention)

Of the 2 friends left, one cut off our relationship last week because I am going through all sorts of things she doesn't want to hear about. And the 1 friend I have left comes in and out as she can deal with me.

My mom cut me off (before I was diagnosed as a sort of tough love tactic) I have been shipped here and there I have been unable to work because of my chronic 'd') My family FINALLY kind of understands. Still not totally. She is more helpful now though.

I can't keep a boyfriend. It's tremendously depressing. I was finally diagnosed Oct 07, so I have been tweaking things to take out of my diet, and I haven't had enough time to heal because it's only been a short time since I changed my diet again. (I get 'd' )

I have burst into tears at the grocery store. I cry at least once every day.

I totally can empathise with you. I am sorry you have to go through this too.

Be patient and we'll all help you!

lovelove

[Katester]

Awww.

I completely understand. I can't gain any weight either. I thought I had been doing so well and in the last two weeks I've lost 5 pounds! How does this happen? Now I'm 5'6" and 101 pounds.

As for friends, my "best friend" never even remembers I have celiac. If I mention anything about it, she has no idea what I'm talking about. I know it's not that common but come on. I've lost pretty much all of my friends because I've missed so much school and I haven't been able to keep up with people that can't take the time to catch up with me. I look at it was a wake up call to see who will care about me when I'm sick and who really doesn't care that much about me.

I know this post isn't really that much of a help to make you feel better. But just know you're not alone. And if you figure out anything that makes you feel better, please let me know!!! I'll try anything at this point.

Good luck!

[debmidge]

My husband's friends dropped him when he first got sick back in 1977 (during his "mis-diagnosed" years).

[roxie]

I feel the same way!! I keep going through days when I get so depressed!! Sometimes it's about the food I can't have, but I am usually depressed because I just want to feel NORMAL again. My friends and family have definitely been very supportive, but they don't understand!! (except my husband). My group of friends keep inviting me out to dinner, but it's always at a place where I feel quite sure that I can't eat anything. Most people don't understand that gluten is in SO MANY THINGS that you would never expect. They think I should be fine as long as I don't eat the bread. Thank goodness for my wonderful family - I can tell that they are getting pretty tired of eating at the same "gluten free" restaurants, but they do it week after week without complaining. I go through good days and bad days, but I have to say that celiac.com has been great therapy for me. I have learned so much, and have received a lot of support!!

[tarnalberry]

So I'm going to be the fly in the ointment and say that it's fair to take a look at how you're contributing to the problem. If you ARE complaining a lot - back off on that. You don't want to be around someone who harps on the same thing over and over and over and over again, so don't be that person. Even though this is a life long thing, and we have to eat, this doesn't have to be that way. And sometimes, you just go with the flow, and you let your friends take center stage, and have that salad, or bring your own food, otherwise, regardless of your restrictions, it gets to be all about you. Their desires are valid just as your restrictions are, and honoring that is as important as them honoring your restrictions. It goes both ways. (And it's fair to talk to them about it just like that.)

I suppose I don't entirely understand because, although I have friends who often forget I can't have things, and I have friends who often suggest places that I can't go, and I have friends who will poke fun at my restrictions (but as a well meaning tease), it's never been a problem. It's a give and take, and they appreciate me being laid back about it, and they are more willing to reciprocate because I don't make it about me. Of course, that doesn't help if you're friends are and always have been entirely selfish and selfcentered, but one hopes that no one would be friends with that sort of person.

[ShayFL]

I agree. Rather than complain or turn down a friends invitation. Just take your own food. There might be some awkwardness early on, but people get used to it.

You can even say. I dont want to focus on my disease, but I do want to focus on everything good in my life. Like my friendship with you. So I hope you will always include me in the fun, but understand that sometimes I will bring my own food.

[youLOVEamelia]

Thanks so much for all of your comments.

Fiddle Faddle, I can talk about Cary Grant all day long. Best actor ever!!! I especially like The Philadelphia Story and My Favorite Wife. Oh, and Arsenic and Old Lace.

I'm a student in Lawrenceville, NJ. We're not that far from NY so sometimes we make trips on the weekends.

Tarnalberry, you're definitely right. I should stop complaining so much. I don't do it so much at home because I can pick at what I want, but sometimes at school it's just difficult to find anything I can eat. And my school's dining hall doesn't put out ingredients so I'm just never sure. It's just been hard adjusting to both being gluten free and being in college at the same time.

To all those having trouble with keeping friends, I'm right there with you. My friends at home are all really supportive and try to invite me out, but I usually just end up getting a drink or something little. My college friends don't really get it though.

But I'm doing my best to be patient and adjust to all of my changes. <3

[slmprofesseur]

It's tough. I can't imagine how it must be in college. My husband takes us to his friends house and they didn't have anything that was Gluten-free. And he forgot to tell them about our son and myself!!! I don't get upset. I now take all of my own food or invite people to visit me.

I have turned people down for other invites before my diagnosis. I had to learn this the hard way. I have a verified (er visit) shellfish allergy. Well, my parents decide to go to a seafood restaurant for my mother's birthday (in the car). I was worried even though they assured me that there would be chicken or steak. I ordered chicken and voila. Shortly after leaving we had to make a quick stop at CVS and I DRANK liquid benadryl from a bottle.

I realized at that point my own family didn't get it. I still love them but ultimately its up to me to look out for my health. I avoid family functions where I know smokers will be present.

On the other hand, you can start cooking! It's a great hobby. They say the way to a man's heart is through his stomach. I make Gluten-free casseroles, pancakes, etc all the time and my dh doesn't know the difference. It's tough at first. I know. I think you can do it though. I figured it out as a mother of 2. My students even bring me Gluten-free goodies as school! (I am undercover raising awareness!!! Ha ha!)

[tarnalberry]

I should stop complaining so much. I don't do it so much at home because I can pick at what I want, but sometimes at school it's just difficult to find anything I can eat. And my school's dining hall doesn't put out ingredients so I'm just never sure. It's just been hard adjusting to both being gluten free and being in college at the same time.

There's not doubt it's tough. And you've found a great place to vent when you need to! It probably won't really change anything now, but know that it does get easier as you learn, and easier still if you are determined to make doing what you need to do simply not a big deal and you find a way to go with the flow. What life looks like may be different from your original expectations, but ... well, that's not always a bad thing.

But remind yourself, when you're frustrated, angry, sad, or hurt because it's just so darn hard, that IT IS HARD! You're having to do two things at once that are both big huge adjustments. Give yourself credit for taking on the challenges. Give yourself the grace to not do them perfectly. And find the few people who, every once in a while, every few months, you can say "SIGH... ugh... this is getting to me. help spoil me... please!"

Eventually, you can learn to take pleasure in the pleasure other people get out of food - be happy for them being happy - rather than just missing the pleasure that you want to have from the food. (My last set of coworkers brought in pie and ice cream for birthdays every month. Being gluten and dairy intolerant, I couldn't have anything, and I certainly never had time to bake a pie, even though I can do that. I loved apple pie, and I loved ice cream, but I can't have them. Rather than being angry that I was left out, or mopey that I couldn't share, I did share in the celebration of the birthday's, emotionally and not by stuffing my face , and I was happy for my coworkers to be happy. It was always a fun event!)

[ShayFL]

It is hard. I dont think it was as hard for me as some because I have been chipping away at my issues for over 12 years. I have tried various diets and have gotten used to "doing without" in many ways. So gluten free. No big deal. I love to cook and bake and I am not doing without at all.

But today I was at a local health food store and ran into a woman and I just saw the look of panic/fear in her eyes. She was shuffling through the tortillas and had some rice ones in her hands. I asked her if she was Celiac and she said yes. Just diagnosed last week with genetic testing and bloodwork. She is asymptomatic. She said her Mom is fighting for her life with Lymphoma and there she was with her little girl trying to figure out what to do to keep herself healthy.

I told her I was too and she looked relieved. I gave her some pointers and told her to put those rice tortillas back unless she liked the taste of glue. I told her about this discussion board, the name of a good and simple cookbook and wished her well.

But I know for the Average American a Dx like th is is a nightmare. But it does get easier.

[tom]

I gave her some pointers and told her to put those rice tortillas back unless she liked the taste of glue.

Hey! Cut that out - I like those!!!

However, until I learned how to heat them properly, they were often gummy & quite unappealing.

They're just about the only thing I eat that I don't make myself.

(Just realized my sig doesn't at all reflect how many foods I can't have)

[ShayFL]

Hey! Cut that out - I like those!!!

However, until I learned how to heat them properly, they were often gummy & quite unappealing.

They're just about the only thing I eat that I don't make myself.

(Just realized my sig doesn't at all reflect how many foods I can't have)

Tom I tried dry skillet, oiled skillet, broiled, baked and nothing made them taste good to me. I dunno. Mabye I shouldnt have said they were nasty., But since I really find them so, I didnt want her first experiences gluten-free to be awful and her want to give up. I told her her how to make yummy thin pancakes that would replace tortillas.

[Fiddle-Faddle]

Sorry, Tom, I hate them, too (and I wanted to like them)!!

Maybe it's a weird taste bud thing, like cilantro, where some people love it and others can't stand it?

Shay, can you post your yummy thin pancake/tortilla recipe? That sounds like exactly what I'm looking for!

[dollamasgetceliac?]

I have the same frustrations, anger, depression about my body. The food is the least of my worries.

I get nervous when I book a play date with a friend (shopping or eating doesnt matter). Will I be able to walk right. Will my ataxia be obvious. Will I have a migraine and have to cancel....AGAIN!!

When my family wants to do something fun on the weekend. Will I be too sick to go? What must my daughter think of her Mom? How I have I failed everyone? Why cant I be normal physically? Mentally? Why why why?

I have never said, "Why do I have to eat gluten free?" I just want it to work, so I can carry my damn food with me everywhere I go and be frickin normal on the inside and outside. Think like a normal person. Walk like a normal person. Feel my skin like a normal person. Have a clear head and carry on a conversation without having to brace myself against something.

I'll cook. I'll bake. I'll buy gluten free. And I will carry it in my purse on every outing. Eating out with friends, a day at the park, a trip to the mall. These are what I CRAVE!!! It is so not about the food with me.

Hi Shay;

I can identify with the Migrains, I had them for 2 years every day, I had it after the doctor perscribed Antibiotics; I was begging the nurse to ask the doctor to stop the Antibiotics; instead they told me to come in the next day. I entered the room there was a nurse practisioner in training , a psychologist and a student: they went through a serries of questions that impleid that probably the reason that I was having these Migrains was STRESS related. Or that I was nuts. I answered all ther stupid questions and then I said in a rather angry voice that , I was going to see a Gastrointerologist because I think that my Migrains were related to a G.I problem.

So when I demanded to get real help from a doctor, I was sent to a Neurologist he put me on a very common Migraine med. in combination with an Antidepresant ( I wound up in the ER with chest pain many many times ( the combination can lead to heart atack acording to the Mayo Clinic and now when they advertize on T.V they do say that you should never take that combo, to make a long story short the Dr. treid every medicine known to conventional and other therapy . I lost most of my friends at that time I had visual disturbances, halos around the t.v and also I can not stand the sight of certain patrens and perfumes. i can not be in a building that has been renovated due to my sensitivities.

I started making new friends, they too just did not click. I treid so hard to stay out of the ER. The Neurologist was perscribing me Mega dosis of Vitamins that acording to Dr. Green in his book Celiac Disease a hidden Epidemic he does mention that taking mega doses of vitamins is bad for your stomach. I do have Crohn's that does complicate things. I wonder if the Vitamins or the Botox( for Migrain Status) set off the Celiac but today I deceided I either had it all my life or the Antibiotics set it off. I hope that your Migrains are responding to treatment.

[ShayFL]

I get a lot of recipes FREE from Bob's. And I dont know why more dont mention it here:

Open Original Shared Link

Everything I have tried from his site has been good so far.