New Diagnosis - Frustrated, Angy, Sad... Will It Pass?

[disneymom62]

First, sorry but I'm whiny tonight. I'm going through a rough patch and trying to find out if my feelings are normal.

I found out about a month ago that I have Celiac disease. I went about it with a positive attitude, planning new menus for my family (husband, self and adult daughter in college); Been eating very carefully, and I've been feeling better - not bloated, using the bathroom every night, no more IBS symptoms; but all of a sudden I'm frustrated! It's tough to find something out to eat in restaurants, seems like I'm eating the same things, tired of having to look at every single label before I eat something. We can't make a dining out choice on the fly because of the thought it seems like I have to go through before i can say "let's go here...", I want a burger with a bun, a sandwich with bread that doesn't taste like particle board, a trip to Taco Bell...

I know it's only been a month - I'm EARLY into this. I know I'm whining. Does it get easier on the family? On me? Do the cravings for off-limits foods pass? Does the frustration and depression pass? Is it normal to feel like you're ruining your family's plans and desires for food? Sometimes I feel like they don't understand, like I'm being a 'party-pooper' so to speak. Like I have to explain every single time I say I can't go here, can't make a certain item, or can't eat this or that. It does get easier, right??

[Jestgar]

It does get easier. Little by little things become routine, and once you stop thinking about them, and just doing them, it's much less stressful.

It's a huge change. It's normal to feel loss and anger and depression and all those other negative things, but they go away too. It just becomes your life.

[Hummingbird4]

It's been almost 7 months for me. At this point, most days I'm OK with it, unless I'm hit in the face with a reminder that I can't eat like "normal" people do. Case in point: today I had a league tennis match. It was at our club, so we players provide the food. I brought something simple, some rice chips with a salsa dip. That and the fruit was the only thing I could eat. No sandwiches, pasta salad, or cookies for me . It's times like that, that I feel like a freak and it can get me down. Depends on my overall mood. Today I was feeling pretty upbeat, so the food situation didn't bother me. Other days, it might.

It has subsided over time, but I've been known to tear up in the grocery store. Even recently.

Good luck. We're all in this together.

[Sin3str0]

It is hard. Very hard. Sometimes it gets harder, other times it gets easier. Very emotional and physical roller coaster ride that you want to get off of, but getting off means feeling like garbage.

Like my friends will say something like "let's get a pizza" or "try some of this", completely forgetting the situation I am in. I work in a cooking school and on a daily basis I am reminded of what I cannot eat. My co-workers also apologize or ask me to try something until they remember. People give me sad looks, one of my friends makes stupid comments about it sometimes, although I know that is how he deals with things.

Be strong, we all may be far apart from each other but we are all here for the long run.

It's funny because sometimes I question if I really have celiacs, but then I remember how bad I had it before I went on the diet so I stay strong. Right now I'm going through a health crisis since moving in with parents, but I have to hang in there until I move again.

Best of luck!

[GFinDC]

It was a big adjustment for me, learning to eat differently. And pay attention to what I Was eating vs just grabbing something quick. No more Marie Calendar's turkey pot pies! No more frozen TV dinners with a beer on Friday night! No more cookies for breakfast! Well that wasn't a great idea anyway. It gets lots easier, at least it did for me. All those prepared foods are just chemical factory castoffs to me now. I can't even understand what half the ingredients are in most of those packaged products. They say it's a preservative, but is it really a mind control drug? Hmmm? Ok, I got my humor hat on tonight. LOL And all that sugar and salt! I don't miss it. You aren't ruining their lives with gluten-free, you are improving their health and guiding them towards a life of better, more nutritious foods. And hopefully training them to understand that it is important to eat right. They are woefully ignorant masses needing the enlightenment of the gluten-free community. Ok, that was a tad corny. But straigthen them kiddos out before they eat their way through a chemical textbook. You are right, they probably don't understand. Most people these days don't consider what they eat to be important, as long as it tastes good. I wonder where preservatives fit on the food pyramid?

[ang1e0251]

You know at the one month point, it's probably a time where you feel pretty confidant about the basic meals you cook at home. You're starting to tire of the selection you've been sticking to during this time. You're ready to branch out and try some of your old foods cooked in the new way. You're starting to work your way into social situations again and it's uncomfortable at first. Imagine you are a child going to your first restaurant or big family reunion. It's exciting but you know you're supposed to behave and you are not sure of all the rules. Is it OK to toss a frog into Aunt Erma's lap like your cousin said?

OK, I'm getting a little carried away. You will have your first hesitant trips to restaurants. It will be hard and a learning curve. You have to learn to decifer menus and deal with staff who can't possibly understand this complicated disease. (I'm not sure I understand it!) Each time you do this, you will learn something and store the lesson away for future trips out. You will go to social events, church dinners, work pot lucks, birthdays. Again each time you will learn something new how to deal with it. But if you stop going out or socializing because you feel embarrasment or hunger and fear, your world will grow smaller and smaller. You will be very sad and angry about that. Don't give into it.

We all handle eating out differently. Some simply eat before they go, some take their own food or a back up snack, and some bring dishes to share. I probably use a combination of these. But after the first time I sat around hungry and let my blood sugar tank, I vowed to never let that happen again. I'm not going to stop living, I'm not going to expect that restaurants or friends and family will cater to my condition. I'll just see to my own needs and have a great time out which is the point of going out anyway.

It will get easier, every time you cook, eat out and live. Every day will follow the next and soon you will realize 6 months have passed, then a year and you're feeling better than ever. We will be here along your journey. Let us know how you are doing.

[tarnalberry]

I'm on my sixth year doing this - it gets easier. There may always be rougher patches than others, and I don't want to imply that a restriction is as easy as not having a restriction, but practice makes it easier, and a month isn't much time to get a *breadth* of experience/practice. Kudos! to doing so well on your first month! Kudos! to being honest about the frustration! You will work through it, with patience and perseverance. It will get better if you just keep plugging away.

[mamaw]

Hello

I think others have posted with your answers but here is a few from myself.

When you get dx'd with celiac you will suffer most of the same emotions as the death of a loved one. After all, eating is a mainstay in ones life. So yes, you may Feel many emotions, others are so happy to know they actually have a true illness & its not in their head as many go to doctors with their problems only to have doctors tell them nothing is wrong with them.

I think sometimes newbies try to fit their whole lifestyle into the gluten-free lifestyle all at once & they get overwhelmed. I believe this is a learning process & through time trail & error we all get to where we need to be. Think of a infant that is being taught small bites & small steps to adulthood- it is the same way on the gluten-free lifestyle...only this time you are usually on your own without family guidance.

I'm been gluten-free for many years now & I still learn something new on a daily basis but being a mentor I keep up with all the newest happenings.

Eating out: This is a hard one for many but you need to educate your family & friends first.I still get grief from my family! After others see how well you feel they will come around. After all it is about the friendship of eating out together not the food. there are many chains that you can still use ie: outback, carrabas, chili's, longhorn steakhouse, wendy's, burger king sorry no Taco Bell! And salads are usually safe if you have the preparer fix separately.

Learn to carry a gluten-free doogie bag in your car so you always have a treat at a moments notice. Ie: pretzels, cookies, brownie, beef jerky, crackers. chips, nuts, protein bar.

I would also suggest buying a few mixes to get you started rather then trying to learn how to bake gluten-free plus learning what you can have & what you can't. gluten-free is a process so put it into goals & steps, once you learn the basics move on to another portion. Rome was not built in a day & you cannot learn the gluten-free lifestyle in a day.

After you are feeling secure start to introduce your family & friends to some fine gluten-free goodies. They will be amazed . I always bake a gluten-free dessert when I'm invited out.

Last just remember you are dealing with a diet change it could be worse, chemo, ALS,cancer & so on so we all are very lucky in the sense that all we have to do is stay strict to a food change. We are blessed. I know newbies think they will never see the light at the end of the tunnel but we all gat there & you will too. Be patient & don't cheat & never give-up HOPE>>>>>

THere is so much that you can learn from just this site in all the sections.We all can be your support system....

AS I tell my gluten-free support group. mourn ,& grieve for a awhile then move on, pity shows no mercy.

blessings to you.

mamaw

[angieInCA]

I agree with everything mamaw just said.

My Dr. actually told me I would probably go through the 7 stages of grief and I am, but every day I tell myself I am so thankful that it was ONLY Celiac Disease and I can heal myself with food. I really thought it was going to be so much worse especially when my previous Dr. started talking to me about removing bowel sections and getting my affairs in order. It really put things in perspective and I refuse to sit on my Pitty Pot.

[DakotaRN]

I myself am only 3 weeks into this whole experience but it is ok to be angry and frustrated. I found that everyone here is very supportive. Meals do take a lot of planning but it is getting easier for me and I know it will for you too. Just take it one day at a time and come here for support.

[Tallforagirl]

...each time you will learn something new how to deal with it. But if you stop going out or socializing because you feel embarrasment or hunger and fear, your world will grow smaller and smaller. You will be very sad and angry about that. Don't give into it.

I second this. I'm four months into this, and still on a steep learning curve. I pretty soon got my head around the cooking side of things, because I found that most recipes are easy to adapt to gluten-free or already were naturally. I've managed to make a pretty good pizza base adapted from a mix, which is comforting, knowing I can have it when I want it.

What's endlessly challenging is eating out. I've managed to find one or two reliable places with gluten-free menus but when the BF decides he wants to be spontaneous and eat somewhere new it can be difficult.

What I find most difficult is trying to explain to waiters/chefs what you need. I don't like to say "I have celiac disease," because I feel uncomfortable bringing up a personal health issue with restaurant staff, so I usually just say I'm on a gluten-free diet, then hand the waiter my restaurant card and ask them to show it to the chef, and ask him if the meal I picked out is okay.

I've had problems when I've made assumptions about meals, such as assuming a cooked breakfast would consist of only what was listed on the menu (all naturally gluten-free items), ordering it without thinking I needed to say anything about my diet, and then having it served with toast on the plate. There have also been unidentified sauces, or in one case mashed potato which turned out to be from a packet and was not gluten-free.

You live and learn, you send food back to the kitchen. It's tough but at least I'm working on my assertiveness skills!

[disneymom62]

THANK YOU all for your wisdom and encouragement.

I don't believe my family understands it, despite my attempts to educate. My husband refuses to acknowledge that even the slightest amount of a gluten product, say in a seasoning or something, can continue to cause damage. ("oh, well it's just seasoning, there's nothing in it you can't eat." or "well a little now and then isn't going to hurt you". OR - this past Sunday, "we know you can't eat sandwiches but we got sandwich stuff from the store for lunch".)

Despite my frustration over a food decision that ticked my family off the other night because I couldn't eat it, (had to do with going out, not cooking) I really am thankful that it's not worse than it is. Colon cancer runs in my family, so negative biopsies and polyps are welcome news.

I'm sure I'll get there with this - cooking isn't TOO bad, I've had to eliminate a few meals from my meal plans but will have to come up with options. We usually eat out one or two evenings in a week and then usually one fast-food on the weekend. I hate having to think my way through going a place, and although I like salads, you can only eat them so much when you go out! I had to pick up dinner on the fly yesterday evening, as I was returning home from an after-work vet visit with the dog (who, coincidentally, eats grain-free) and didn't have anything ready/time to cook. I had to go through which places I could go that I could get something for all of us. Arbys - salad. Thank goodness Tinkyada pasta is good because I do like my italian dishes! Also a hole in the wall Italian place in my town is one of my absolute favorite places to eat... alas, no more.

the learning curve is big, but One Day At A Time....

Again, thanks, everyone!!

Oh... and the Taco Bell.... kind of kidding. Kind of. I do love TB, but I can live without it. Funny how for the past two or three years every time I've eaten it it's made me sick after, but I never realized why! I can get my mexican food elsewhere!

[SandyStPeteFL]

First, sorry but I'm whiny tonight. I'm going through a rough patch and trying to find out if my feelings are normal.

I found out about a month ago that I have Celiac disease. I went about it with a positive attitude, planning new menus for my family (husband, self and adult daughter in college); Been eating very carefully, and I've been feeling better - not bloated, using the bathroom every night, no more IBS symptoms; but all of a sudden I'm frustrated! It's tough to find something out to eat in restaurants, seems like I'm eating the same things, tired of having to look at every single label before I eat something. We can't make a dining out choice on the fly because of the thought it seems like I have to go through before i can say "let's go here...", I want a burger with a bun, a sandwich with bread that doesn't taste like particle board, a trip to Taco Bell...

I know it's only been a month - I'm EARLY into this. I know I'm whining. Does it get easier on the family? On me? Do the cravings for off-limits foods pass? Does the frustration and depression pass? Is it normal to feel like you're ruining your family's plans and desires for food? Sometimes I feel like they don't understand, like I'm being a 'party-pooper' so to speak. Like I have to explain every single time I say I can't go here, can't make a certain item, or can't eat this or that. It does get easier, right??

Just so you don't feel alone, this is the place to come. I was diagnosed with Celiac in November of 2008. Seems like a life time ago.

What I did to get over the frustration is just go to a restaurant and explain to the manager/chef/waitperson what my issues are as far as not being able to eat gluten. I have even called places like Red Lobster, Cheddars, Olive Garden (course, not much there to eat) and others, in advance and explained my situation to them. They are very understanding. I went to a place last night and ordered an omlet and hash browns. Very good breakfast for dinner meal. The cook was as careful as he could be with cooking my food. I figured if I got glutenated it would be my own fault but I was being careful. It is not like I am going out eating pizza dough or "REAL" bread or anything along those lines. But a person can only be so careful. I have consulted with my physician and she has told me that there are probably going to be times I will digest gluten, unwittingly. Some people react very strongly while other celiacs might not react at all to miniscule doses.

I am being very careful not to ingest gluten but if it happens, it happens. I cannot eat on-the-fly as you suggest but you can eat many, many foods. You just have to be careful. I found I was getting severely depressed over this and have come to the conclusion I cannot fret over every item I eat. I just do my best and stay vigilant.

On another note, I have noticed more and more foods are becoming gluten free. Yoplait yogurt is marked now with gluten free on it's containers.

I imagine I am a lucky person in so far as I have no other allergies or issues except being celiac. I am not lactose intolerant either. I do not like a lot of meats so I cook a lot of chicken, turkey and fish. I have found some wonderful gluten free and very darn tasty chicken dishes on the internet.

I did have a bad day last Saturday though. I wanted to drive thru Taco Bell, Steak N Shake, and finish off at the bakery. Just do myself in in one day. But I didn't.

Anyway, frustrations will subside, it just takes time.....

[caek-is-a-lie]

It does get easier. I was totally frustrated at first, too. I wanted to quit food completely because it was too much trouble. And I started doing this in November 2008...not that long ago. Since then I've found great replacements for many of my dining and 'treat' needs. I found a great chocolate cake to make for birthdays, cookies I can eat without getting sick or feeling weird. Cereal, alcohol, etc. I even got the Clan Thompson guides and have found even more stuff, like restaurants that have gluten-free menus. I gave up bread a long time ago, and can't eat rice, so I still go bunless, but I don't mind it. Red Robin does a neat thing where they make your burger like it has a bun but uses lettuce instead and wraps it in that burger paper and you can eat like a normal person. It's amazing!

It's only been 3 months and I'm starting to get used to what to look for on food labels and how to quickly search for product info online or call the corporate hotlines when in doubt. Shopping and cooking are getting easier, especially at places like Fred Meyer where there's a dedicated gluten-free section in every store. Even washing my hands after feeding the cat became second nature, not a dire emergency...that is, until I found out my cat is grain intolerant, too. Now his food is gluten-free too. Figures.

The best part is: when I get paid tomorrow, I'm going to Outback Steakhouse to get me a Chocolate Thunder From Down Under. I never thought I'd ever eat dessert out ever again, but this is a flourless brownie and totally gluten-free! I used to crave them when I was pregnant, and who knew it was acutally ok for me to eat?? (Probably the only gluten-free thing I ate in the whole 9 months.) I was so happy when I found out, I cried. Needless to say, I'm SO EXCITED!!

[disneymom62]

The best part is: when I get paid tomorrow, I'm going to Outback Steakhouse to get me a Chocolate Thunder From Down Under. I never thought I'd ever eat dessert out ever again, but this is a flourless brownie and totally gluten-free! I used to crave them when I was pregnant, and who knew it was acutally ok for me to eat?? (Probably the only gluten-free thing I ate in the whole 9 months.) I was so happy when I found out, I cried. Needless to say, I'm SO EXCITED!!

Enjoy your brownie!!

Funny - my dog does not do well on grain based foods, either - most folks don't realize that getting corn and grains out of their diets will make a world of difference - and he's (and my cat too) have both been eating grain free since last July. It's made a world of difference with them. Actually, my husband and daughter are the minority in my household, three of us grain free and only two of them still eating whatever they want!