Newly Diagnosed

[angel42]

I was diagnosed around 1 1/2 months ago. I'm not even sure where to begin really. I've just been so depressed. Some guy at work who I never even speak to really asked me what was wrong. I figure I must really seem sad if some minimal acquaintance goes out of his way to say something. I was never a big meat eater so all this meat three meals a day every day is killing me. I know there are gluten-free substitutes for bread and things but at least where I live it's all extremely expensive ($7 for a loaf of gluten-free bread that doesn't even taste good). No matter how hard I try to avoid gluten I still seem to accidentally eat something with gluten at least once a week. Only now my body is more sensitive to it so i get much sicker than I did before. Everyone I know completely invalidates my celiac and acts like I'm making a big deal over nothing. People keep inviting me to restaurants where there's nothing for me to eat and then act like I'm a big drip if I say no. Everywhere you go this time of year it's all pies and gingerbread men and christmas cookies. I went to my in-laws for Thanksgiving yesterday and am still sick from dinner since my MIL couldn't be bothered to make anything gluten-free. I know I'm rambling. I just feel like I have noone to talk to and noone understands. Did you all go through this when you got diagnosed?

[Corkdarrr]

Yes, yes, yes!!

A lot of people find relief from their emotional issues after going gluten-free, and I have no doubts about this. I have even noticed my moods have changed since going gluten-free 5 1/2 months ago.

But learning how to do this is VERY stressful and frustrating and is an entire lifestyle change. I usually break down and lose it at least once a week!

There is definately a learning curve and you're still in it. Hell, I'M still in it and it's been almost six months. It's amazing how many different random things they put gluten in.

But hang in there. Post and vent because everyone on this board has felt the way you feel and has been there. If nothing else, we can at least sympathize.

[tarnalberry]

It's pretty common to find adjusting to the diet difficult - it is, after all, a MAJOR change.

You may find it easier, if finding specialty items is a problem, to change your diet on a more fundamental level. Rather than eating things that might often have bread, or pasta, or other things that are now off limits, switch to other types of foods entirely. Beans can be used for so very many things, with a variety of tastes (mediterranean, indian, mexican, etc.) and are very filling. Other grains are available even in common stores - rice, wild rice, and many stores have quinoa as well. (Even asian rice noodles are available in many regular stores.)

You can still make all kinds of vegetarian dishes, but you might have to explore new types of cooking (or food preparation) to give you the options to feel like your diet is not restricted.

It'll take some time to get comfortable with things again. You've had a lifetime to surround yourself with foods that you don't have to think about, and they've become second nature, and now, unfortunately, you've got to change all that. It's a big task, but you can do it!

[Susanna]

Hey, Angel42--You are in that tough time where you first go gluten-free, but you haven't figured out how to actually live that way yet, and your peeps have no clue yet. When I first went gluten free, it was so isolating feeling and I was hungry a lot and SAD sad sad. I PROMISE, YOU WILL MOVE OUT OF THIS PHASE AND YOU WILL FEEL PHYSICALLY AND EMOTIONALLY BETTER! For me, the first 4 mos. were the worst, while I figured out what I could eat, then after about 6 mos. of gluten free, it got a LOT easier.

Here are some ideas for meals for someone who's not a big meat eater:

1. Breakfast: Eggs, rice hot cereal, peanut butter on toast (lots of the loaves of gluten-free bread are not delicious, but most of them are OK toasted), Fruity Pebbles, handful of raisins, peanuts, sunflower seeds and a glass of OJ.

2. Lunch: Rice cakes with peanut butter and jam (or almond butter, cashew butter) or cold cuts. Lettuce wrap with cheese and veggies, bowl of cottage cheese with cherry tomatoes, hard boiled eggs, many Progresso soups are gluten-free, fruit, nuts, leftovers from some yummy gluten-free thing you made last night. Dinty Moore beef stew and chicken and rice are gluten-free and don't need to be refridgerated--great for at work.

3. Dinner: rice with can of Progresson cream of mushroom soup, with your favorite beans (I like cannelini) stirred in., black bean tacos with corn tortillas, cheese, salsa and sour cream. At our house, we love omelets for dinner (chili omelet is my fave--find a can of gluten-free chili at the health food store), split pea soup and gluten-free bread from a mix made in the bread machine. Spaghetti sauce, with tofu whisked in, served over gluten-free pasta is great. Amy's Rice Crust cheese pizza--I found it at Fry's (Kroger's), and at the health food store. Amy's brand has lots of gluten-free frozen dinners--black bean enchiladas, and rice and black eye pea bowl, etc.

4. Snacks: Zone Bars (many, but not all, varieties are gluten-free--I like the Fudge Graham, Chocolate Almond Raisin, and Chocolate Coconut crunch), Bliss Bars, Lara Bars, nuts, fruit, dried fruit, candy (many are gluten-free--here are some of my faves--Snicker Bar, Baby Ruth, Butter Finger, Reeses, Hershey milk or dark choc bar, Hot Tamales, etc), Frito corn chips, Cheetos, popcorn, tortilla chips and salsa. Amy's Rice Crust cheese pizza--I found it at Fry's (Kroger's), and at the health food store.

5. Restaurants: several chain restaurants have gluten-free menus, but you have to ask for them: Bonefish Grill, Outback Steakhouse, P.F. Changs. When out to Mexican, I order chicken tacos, or bean tostada. At a diner, I can always get an omlette. I avoid Chinese and Italian--just too hard to avoid the gluten in those. If I can't take the muffin that comes with the breakfast, I ask for fresh fruit for a substitution, and have never had the staff object.

Hang in there, nurture your body, calmly but clearly and persistently educate the people around you about this--Know that even the ones who love you the most will not figure out your diet on their own--it is YOUR job to teach them, not their job to figure it out. If they care about you, they will come around. If they don't come around, hmmm, maybe it's time to move on from friends like that.

Check the cooking/baking/recipes thread for other great ideas on what to eat. One thing that REALLY helped me initially with my feelings of deprivation and isolation was stashing delicious snacks (OK, Baby Ruth Bars) in my desk at work, in my purse, in my glove compartment, and at home. Then when people around me were enjoying a treat I couldn't have, I'd just access my stash and have a happy snack.

I swear, this gets easier--Good Luck!

[Rebecca47]

I was only diagnosed in Aug of this year. It was hard at first well it still is hard but im getting better at it as I know you will. Bread in my area northern calif is expensive too. So If you like cereal I know that Fruitty Pebbles is ok for me to eat and I read somewhere on this forum that they were gluten free. I read the ingredients and i thought the were ok (at least for a change of food) If I am wrong someone will tell me. I break down a cry alot too. When I get overwhelmed. I ate alot of baked potatoes, salami (genoa) with cream cheese. now I cook alot more at home i am afraid to go out. I started a new food diary on the 22nd to find out what is bothering me. So far So good. Thanks all for listening I think I need to talk to anyone who would listen. I did have taco bell the other day. I had pinto and cheese and the mexican rice, only because i looked on line and found only this and one other thing gluten free. YAHOO, i did not get sick thank god. Sorry i was on a roll and my fingers wouldn't stop. I'm done now. Hope everyone had a great thanksgiving.

Rebecca

[chrissy]

when my girls were first diagnosed----i wished it was me instead of them. i had several meltdowns early on. i remember standing in walmart trying to keep from crying as i read labels trying to find things they could eat. we've come a long way in 11 month-----we have had ALOT of successful baking and are able to find MANY things that are safe to eat. you are in a normal phase of grief right now----trying to come to terms with a new way of eating and it can seem so overwhelming. i promise it will get better over time.

[clhsc]

Rebecca, I am sorry you feel so down. I have been gluten free for a while and don't want to do the challenge, so I am self diagnosed. I have a colonoscopy coming up to rule out any other problems. I am stressed out about that (hey, I'm only 24 - in my opinion too young for these problems). I had anxiety problems before and even though I am on Lexapro, it's like they are back full force. I am feeling the same way while looking for a diagnosis. I get really frustrated when shopping for new food and I agree the holidays are rough. This board has provided excellent support because for me at least, it's good to know you aren't alone. No one else in my family has celiac disease and while some of my friends and family are supportive others have no clue. For Thanksgiving at my grandparents' house I had lima beans and heard the ever present "Oh my, you are so skinny and pale. Are you feeling okay?" phrase.

Don't be down though; through the six months that I have been gluten-lite or gluten free I have found some excellent recipes and adapted a few of my own. Once you get the shopping down it's much easier. I don't buy the gluten free bread either because it taste like cardboard. Try the Kinnikinick bread mix. You can make it right in the oven and it taste like bread. It's really good with some garlic and cheese. Of course, I get upset when I try something and it doesn't work or it taste bad. I try to build my diet around vegetables (I'm not a big meat eater either). There are other ways to get your protein that you need. I eat lots of eggs and beans. Soybeans are also high in protein and I eat them all the time. It is hard though when your friends are going out to eat and you feel like you can't go. Most of the time I just eat something before. Support from your friends and family make it a lot easier. I tend to go through phases where I am fine and then I will be down for a while.

If you ever need to vent this board is the place to do it. Almost every situation you run into, someone else on this board has been in too. They are great at giving advice. If you need anything let us know. I haven't tired to search for recipes on here, but I am sure there are some. Just look on the bright side of things - now that you know what is wrong, you know what you can do to make it better. Plus a gluten free diet has been shown to help with all sorts of problems. I am sure you will be feeling better in no time.

[Rebecca47]

Rebecca, I am sorry you feel so down. I have been gluten free for a while and don't want to do the challenge, so I am self diagnosed. I have a colonoscopy coming up to rule out any other problems. I am stressed out about that (hey, I'm only 24 - in my opinion too young for these problems). I had anxiety problems before and even though I am on Lexapro, it's like they are back full force. I am feeling the same way while looking for a diagnosis. I get really frustrated when shopping for new food and I agree the holidays are rough. This board has provided excellent support because for me at least, it's good to know you aren't alone. No one else in my family has celiac disease and while some of my friends and family are supportive others have no clue. For Thanksgiving at my grandparents' house I had lima beans and heard the ever present "Oh my, you are so skinny and pale. Are you feeling okay?" phrase.

Don't be down though; through the six months that I have been gluten-lite or gluten free I have found some excellent recipes and adapted a few of my own. Once you get the shopping down it's much easier. I don't buy the gluten free bread either because it taste like cardboard. Try the Kinnikinick bread mix. You can make it right in the oven and it taste like bread. It's really good with some garlic and cheese. Of course, I get upset when I try something and it doesn't work or it taste bad. I try to build my diet around vegetables (I'm not a big meat eater either). There are other ways to get your protein that you need. I eat lots of eggs and beans. Soybeans are also high in protein and I eat them all the time. It is hard though when your friends are going out to eat and you feel like you can't go. Most of the time I just eat something before. Support from your friends and family make it a lot easier. I tend to go through phases where I am fine and then I will be down for a while.

If you ever need to vent this board is the place to do it. Almost every situation you run into, someone else on this board has been in too. They are great at giving advice. If you need anything let us know. I haven't tired to search for recipes on here, but I am sure there are some. Just look on the bright side of things - now that you know what is wrong, you know what you can do to make it better. Plus a gluten free diet has been shown to help with all sorts of problems. I am sure you will be feeling better in no time.

Thank you very much for the support. I will try that bread you mentioned I really dont like bread that much anyway. i have never heard of kinnikinkick, I will see if whole foods or trader joes carried it. My numbers are great the doc says so iam doing something right. my son really good at using his own things butter, mayo etc and has been cleaning up well when he makes his food. I very proud of him.

rebecca

[kbtoyssni]

This is a huge life change so being depressed is completely understandable, especially if you don't have supportive people around you. Do you haev any friends who are supportive? Maybe you need to start hanging out with them more. Have you looked for a support group in your area?

It sounds like restaurants and eating at places like you MIL's are a problem. I now see going out to eat as a social thing, not a "I'm hungry, let's eat" thing. So I bring my own food all the time. I don't want to miss out on hanging out with friends, but I'm not going to put my health on the line to do so. I'll also call a restaurant before I go and talk to the chef about what I can eat. You're still pretty new to this, so it might be easier to bring your own food until you get better at picking out what has gluten. I didn't go to restaurants until about nine months after I was diagnosed and it takes some practice to get good at choosing meals.

I have been vegetarian for five years so here are some meat free, gluten-free food ideas. For lunches instead of bread I eat baked potatoes with cheese and salsa, corn tortillas with salad stuff on them, rice with cheese and salsa, rice cakes with peanut butter. I also bring string cheese, apples, mini-Dove chocolates, milk, hot chocolate.

At home I'll eat eggs (scrambled, fried, omlettes), Thai food (I love Thai - Thai Kitchen brand is good), tacos are excellent, homemade pizza (or Glutino brand pizza if you're not in the mood to cook although that's more expensive. Actually nearly all Glutino brand stuff is good.)

There are good gluten-free breads and cookies out there, but you have to eat a lot of bad to find them. I love Food for Life brand bread (especially the red, black and millet). You could also try cooking. Check out The Gluten Free Gourmet. I've made cakes, cookies, bread, pizza crust from there and none of them have tasted bad. It's probably cheaper to make your own, too.

Hopefully this will give you a few ideas. Hang in there - things will get easier.

[ajay]

I was diagnosed around 1 1/2 months ago. I'm not even sure where to begin really. I've just been so depressed. ...I know I'm rambling. I just feel like I have noone to talk to and noone understands. Did you all go through this when you got diagnosed?

Hi angel,

yes. yes. yesyesyesyes. I'm sorry you are in such a low spot, but at the same time, how could you *not* be? So much of our culture and socializing revolves around food, and the holidays are the worst! Cookies and pies and cakes everywhere. It's probably the hardest time to be a newbie. And people can be impossible to train, especially since they knew you before you were diagnosed, so they don't understand the change. Some of them will "get it" as they see how much better you feel.

I think it's hardest in the beginning. You don't know what to eat yet, and you don't feel better yet.

As an alternative to meat, can you eat nuts? beans? They can be filling, too. At first, I would recommend staying away from as much that is "prepared" as possible, and make a lot of simple foods at home.

Please hang in there. It's like going through "detox" in more ways than one, and it can be rough. But it is definitely worth it. And rant and ramble all you want here!

[Leann]

I know how you feel. I found out on Tuesday that I have Celiac disease. I was so upset. I love good food and I was so upset that I would no longer be able to eat all the foods I love. I told myself that I would start on my diet on Friday. One last Thanksgiving to celebrate my last meal. I ate a lot of food I should not have and I felt so sick. Friday I tried to eat food that would be ok. This morning I was so hungry and I stopped at McDonald's. I know that was my first mistake, but I ordered a Big Breakfast and ate it. I was thinking that I would be ok if I ate the biscuit. About 30 minutes later, I thought I was going to need to go to the hospital. I got a headache, though I was going to vomit, dizziness, sweaty. All of these things have been happening for awhile and I realized that I really can't eat that any more. Luckily, I made it through and learned my lesson. We may have to change our lives, but they will be better ones. Ones where we don't feel bad. Tomorrow I am going to the store and buying things I can eat that won't make me sick.

[maribeth]

I've been gluten free for about a month and it is hard emotionally and physicaly. I find at 55 to make this change to a whole new way of eating, cooking etc is quite tramatic to the system. I'm not a big sweet or bread eater so that helps a bit. It's just the hidden gluten that I'm having trouble with. Going shopping is more of a chore as I have to read labels more and I had to buy new pots, utensils etc. It's to get the rest of the family to realize that if you use wheat anything to clean up after and to not use my utensils and use a separate knife or spoon to get the marg,peanut butter etc out of the container. It's also hard to get friends and coworkers to understand what is going on with your system and to try and bear with you as you heal. It's a long healing process and I'm sure we'll all survive. I have located a support group in my area but they aren't meeting again til the new year. Hopefully being with people with the same disease and learning from them will help a lot. Take care. Beth.

I was diagnosed around 1 1/2 months ago. I'm not even sure where to begin really. I've just been so depressed.

[zansu]

There is definately a learning curve and you're still in it. Hell, I'M still in it and it's been almost six months. It's amazing how many different random things they put gluten in.

make that 2.5 years and still learning....

[happygirl]

The best way I could describe it was I was mourning my "old life."

Took awhile...and I still have my moments...but I learned, slowly, and got better, slowly. It is the most frustrating thing I have ever dealt with....but yet the most rewarding. It gave me my life back, to enjoy with my family and friends. I just eat differently. I'm the same person, I just eat different things

But girl, let me tell you, I didn't feel like that at first! I was 23 and in grad school, with no time or money. I thought Celiac was the end of my world.

You might want to read the book listed in my signature. It has a wealth of information and is written by a leading Celiac specialist and expert, and published in 2006. You can get it on amazon. I wish it was out when I was dx'ed.

This board is the best place to be, by far...we'll get through this, I promise. Its okay to feel every emotion...we might wonder if you didn't feel this way Let us know what we can do to help. Read, read, read on this board. I can't stress that enough. Read things you don't think apply to you---we get off on tangents here.

PM me anytime if you would like to chat. Hugs to you.

[ArtGirl]

I've been gluten-free for about five months now. At first it was interesting and challenging to learn all I could and search for recipes and really learn about eating gluten-free.

Then came the pitty party and ups and downs emotionally. After a few weeks what was interesting became a chore and I longed for the pre-gluten-free days when I ate anything I wanted without thinking about it. (Of course, conveniently forgetting how sick I was!!!)

I think it was at about 3 months that I started to adjust to the changes. At 4 months I had a pretty good grasp of what I could and could not eat. I stopped trying to eat out, or just brought my own food to hang out with others at a restaurant.

It's still been a roller coaster. Most days I'm fine with it, other times I still feel sorry for myself. But I think this is a normal thing.

As everyone says - it does get easier the longer you do it. I'm looking forward to my 6-month mark, and then 1 year (at which time I should be an old pro at this).

[super-sally888]

Rebecca,

sorry you are having a hard time. But please know it is normal. It is normal to be upset when you have found out you have a condition that means you have to make major changes in how you manage your life. I am three weeks in. I feel like crying all the time (though I haven't actually broken down yet)...

Anyway, know you are not alone. People here are very supportive.

I am in a bit of a similar situation as far as gluten free foods. They are just not available here (in Philippines). So no bread and no fast foods (batters), and no chips (cause they fry them in the same oil as the other stuff which has flour)...

What I eat:-

Rice: I mix brown, red and black/wild rice together and cook it. This is delicious and much healthier than the white stuff. On top I add cheese (sometimes just by itself), or egg, or sardines, or nuts and raisins (my favourite) or yesterday was cheese and crushed pineapple (pizza for breakfast!).

I make sure I always have snack food with me that I can have so that I don't get hungry: raisins, fresh and dried fruits, nuts, popcorn, vegetable sticks, chocolate (the good stuff)... Often I just use these snacks instead of eating a full meal.

Vegetables of all sorts are great for meals - and they can be cooked so many ways (I love making pumpkin soup: onion, garlic, pepper, cinamon, pumpkin, and parsley - can add tomato as well).... I also don't eat much meat - it is just for flavouring...

Rice noodles are a great replacement for pasta and regular noodles.

This is a learning experience - and learn I must.

Take Care.

Sally

[ptkds]

I was coming to this board to say the exact same things! I am really feeling depressed and frustrated today. I just got back from the grocery store and it made me so sad to see all of my favorite foods that I can no longer have. I have to make this HUGE lifestyle change that I don't want to make. I have lost all the conveniences of food. I have 4 kids, so that is REALLY hard to handle. And I was also thinking about how I will have to teach my kids to shop for and cook gluten-free things. I enjoyed my old lifestyle, and I don't want it to change. It doesn't seem fair that I have to.

I just wanted to say that I know EXACTLY how you feel, cuz I feel the same way. I don't want to make these hard changes in my life, but I feel like I am being forced to so that my kids and I will be healthy. It doesnt' help that my hubby was getting things w/ gluten to take to work, and I can't have those things anymore.

ptkds