Coping With Celiac Disease Emotionally

[Sissy]

Hi, I am a newbie on your board. I am anxiously waiting for my tests results to come back. I am having some problems with depression and coming to the realization that I have Celiac disease. I am almost positive that I do...I have had symtoms for several years and did not know what was wrong with me. My aunt lived with me when she was diagnosed in the '80s, but even with knowing what she went thru I just did not put it all together until a few weeks ago...I had been really sick for a few weeks...and one day I was having a really bad day running to the bathroom time after time and it hit me like a ton of bricks...I did not have the stomach flu, I did not have some weird exotic intestinal bacteria, I was not possessed, OMG, could it be Celiacs..why did I not realize this sooner. I should have put it all together much sooner I had all the yuckky symptoms...you know about your stools. Since my husband retired a few years ago we have gone on 2 or 3 cruises each year..about 3 or 4 days into a cruise after eating bread, bagels, pasta and desserts I would have to literally run to the bathroom after meals, I had horrible stomach distress, gas and I mean my tummy was blown up like a balloon from under my breasts all the way down, diarreah, and I felt exhausted. Normally I eat very little bread at home, pasta only occasionally and my dessert of choice is ice cream, so did not eat a gluten rich diet. I always thought the problems during the cruise was because I was in a different environment, drinking different water and eating rich foods and was more active than usual.

Now I feel depressed and confused about what to eat and not to eat...I have made a few really bad mistakes...like eating candy corn...I was sick for 3 days after. I thought that it was an ok treat...but read the label and found gluten...so I am trying to learn...you all seem so informed, I am trying. Sissy

[lonewolf]

Welcome! Relax and breathe! Most of us made mistakes at first that we would never make now. Browse around and look at old posts - they're a wealth of information. Feel free to ask lots of questions - there are many knowledgeable people here who are happy to help.

[4getgluten]

Sissy

Welcome! And hang in there. If you do indeed have Celiac, and it sounds like you do, it does get easier. The time will come when you don't even think about it... really it's true. It may take time, but you'll get there - Think positive.

You have to remind yourself how lucky you are, and try not to get discouraged. We have lunch brought in for us everyday at work – it’s wonderful for everyone but me. I never eat the lunch that is brought in. I always pack my own gluten-free lunch. Today an associate asked me "isn't it hard having such a limited diet? Don’t you miss certain foods?" My reply to her was "No, not at all. I have a disease that can be controlled with my diet. I am not on any medication, I don't need surgery, and I feel great!" I am one of the lucky ones, truly. Celiac is not a death sentence. When I feel down, I remind myself that there are a lot of people facing much harder heath problems and diseases. Hang in there, you’ll learn to love gluten-free eating, and how great you feel.

[2kids4me]

It will get better and if you are celiac and go gluten-free - your mood will improve too. Dramatic change in my daughter - from moody, crying and tired to : happy, giggling and energetic after gluten-free.

Please visit the baord often - no question is too silly!

For now - stick with naturally gluten-free - rice, potatoes, unprocessed meat, fruit, veges, Chicken and rice soup from Campbells is gluten-free among other soups, comfort foods, Lays plain chips and sour cream and onion, caramilk, vanilla ice cream, rolos..........

I have kids and I have lots of choices for them.

Crispy Rice cereal makes great rice kripsie squares but are gluten-free

Enjoy life brand cereal bars..

You are not alone!

[Sissy]

Lonewolf, 4getgluten and 2kids4me, thanks so much for your encouragement. It is a confort to hear it should get easier. Right now it is kind of a shock and it is confusing to me. I have always been into healthy eating...always making sure that any bread was whole grain and all my cereals were whole grain wheat, oat, etc...I have to rethink a lot of the things I have always believed in regarding nutrition. I see there is a ton of information and help here. Sissy

[kbtoyssni]

Welcome! And congrats on finally getting a diagnosis. Seriously, getting a diagnosis was the best thing that ever happened to me.

I noticed you talked about depression. I used to have depression that went away once I went gluten-free. So you may find that you start to feel better the longer you're gluten-free, too.

Start out with really simple foods: fruits, veggies, rice, meat (make sure chicken/turkey don't contain broth!). Then slowly add in foods as you research their "safe-ness". It will take a while to figure out what brands are ok and what brands aren't. You won't be able to figure it out in a day. I'm still learning and I've been gluten-free for 13 months.

Then I'd replace any wooden spoons and cutting boards and badly scratched pans. And get a new toaster. Label all the condiments in your fridge with your husband's name and get new ones for yourself - the open ones are likely contaminated with crumbs. (If your husband is willing to be careful of cross-contamination, eventually you can have one of each condiment, but it's silly to throw away everything you have now if he can still eat it).

The third thing I'd do is start reading the labels on your personal care products. And get new lipsticks/chapsticks - they can contain crumbs of gluten.

Some candy corn is gluten-free. I think the Wal-Mart brand is ok.

Good luck, and ask any questions you need to. It's a big life change, but it's 110% worth it.

[Fiddle-Faddle]

Hi, sissy, welcome!

I can't think of anything that the above posts haven't covered--they're all giving your really good advice! I just wanted to welcome you and let you know that yes, I made tons of mistakes (still forget to read labels every now and then), and this is a great place to come to for ideas, recipes, restaurant reviews, etc.

Hang in there--it really gets better--MUCH better! You'll eventually physically feel much better than you have in ages , and feeling better emotionally will follow. NOw that you've found this board, it'll get so much easier, really it will.

If you feel well enough, see if you can get outside for a walk, even if it's raining. That is always a huge help for depression.

Hugs,

Fiddle-Faddle

[daffadilly]

Re Candy Corn - I am sure it was the Brachs brand, they do not list gluten on the label but it will all make you sick. They hide gluten in the products. DO NOT BUY ANY BRACHS CANDY it will all make you sick.

And welcome, happy you are feeling better!

[Sissy]

Thank you all for your encouragement and support.

Yesterday was a nightmare, I feel weak and tired to begin with but I went grocery shopping and by the time I got thru reading every single label on every product I bought I was exhausted and a wreck physically and emotionally and at times even wanted to cry...I know this pity party will be over some day but right now it is in full blown hats and horns party mode. I have never spent so much time in a grocery store in my life. My husband of 45 years is a doll, he is willing to help me cook, eat whatever I can eat and even re-reads the labels for me in case I missed something on the first reading, good thing I kept him all these years.

I am really having a problem with what to eat for breakfast...I don't want to find out that my cholesterol is sky high in a few months, so even though I love them, I can't eat eggs every morning as a easy, quick breakfast. I have never eaten grits in my life, just the thought of them is unpleasant, but I guess you have to do what you have to do...or maybe one of you angels out there will tell me what you eat for breakfast. Sissy

[Gamecreature]

I am really having a problem with what to eat for breakfast...I don't want to find out that my cholesterol is sky high in a few months, so even though I love them, I can't eat eggs every morning as a easy, quick breakfast. I have never eaten grits in my life, just the thought of them is unpleasant, but I guess you have to do what you have to do...or maybe one of you angels out there will tell me what you eat for breakfast. Sissy

Like you I am a newbie. I've had stomach problems as long as I can remember but it was only after I felt that I wasn't getting better after Gallbladder surgery that I've been diagnosed with Celiac Disease (and it took over a year before the doctor thought to test for it).

I cannot tolerate eggs - they give me painful cramps - so it's cereal or nothing for my breakfast. I used to eat instant oatmeal, but I've decided to skip that just to be on the safe side. There really aren't a lot of choices for gluten-free breakfast cereals in your average supermarket. However, currently Post Fruity Pebbles and Cocoa Pebbles (and the generic equivilent made by Malt-o-Meal) are both gluten free. They also have enough sugar to knock you into the next room! We have bought some gluten-free rice cereal (available at most health food stores, and Trader Joe's (and if you live in Wisconsin or Illinois, Woodman's) and mix it with the Post cereal to make them both last a little longer.

A couple of warnings: both Corn Pops and Rice Krispies are not gluten-free. I know that Corn Pops was on the "safe list" that the dietician presented me and I had to correct her and let her know that it's not anymore. Also, beware of "Wheat Free" foods that are passed off as Gluten Free - they may indeed be free of wheat, but may very well contain barley malt or some other gluten.

I know it's rough. Like you, I'm just trying to get my bearings. I've had a little bit of a head start because my doctor had me on a low-carb diet to maintain my triglycerides for the past year. I actually thought that the 30 lbs. that I had lost was due to good eating habits!

[Guest Viola]

Hello... sometimes with breakfast you have to think outside the box If you are dairy free as well, a bowl of fruit with Cool whip topping is yummy, add a slice of gluten free toast and you're away

If you can have a little egg, I use Kinnikinnick sandwich bread to make french toast. Make sure you use a spatula to pick it up out of the egg mixture, it will fall apart if you use a fork.

Both Pamella and Kinnikinnick have pancake mixes, I believe both can also be made dairy free. Make a big batch and heat the left overs for breakfast or lunch the next day...they also freeze well

Glutino has some cheerio type cereal that is good. I had the apple cinnimon this morning, but there is also a honey nut.

My daughter used to eat coconut macarones for breakfast with tea. She always said that nuts are healthy.

[Michi8]

Thank you all for your encouragement and support.

Yesterday was a nightmare, I feel weak and tired to begin with but I went grocery shopping and by the time I got thru reading every single label on every product I bought I was exhausted and a wreck physically and emotionally and at times even wanted to cry...I know this pity party will be over some day but right now it is in full blown hats and horns party mode. I have never spent so much time in a grocery store in my life. My husband of 45 years is a doll, he is willing to help me cook, eat whatever I can eat and even re-reads the labels for me in case I missed something on the first reading, good thing I kept him all these years.

I am really having a problem with what to eat for breakfast...I don't want to find out that my cholesterol is sky high in a few months, so even though I love them, I can't eat eggs every morning as a easy, quick breakfast. I have never eaten grits in my life, just the thought of them is unpleasant, but I guess you have to do what you have to do...or maybe one of you angels out there will tell me what you eat for breakfast. Sissy

I wouldn't force yourself to eat things you don't like just because they are traditionally for breakfast. You can try thinking outside the box and have "lunch" for breakfast, but if you prefer "breakfasty" type foods there are still lots of choices:

yogurt, fruit and honey

eggs and homemade hashbrowns (eggs aren't as "bad" for you as once reported)

pancakes or muffins made with gluten free mixes

chicken & potato hash with poached eggs & salsa

fruit smoothies

etc

Michelle

[par18]

Hi,

A year and a half ago when I started the gluten-free diet I ate eggs almost every day. Recently I have found some pretty good alternatives. One thing I do almost every week is make a batch of muffins (a dozen) by using either corn flour or buckwheat flour. I don't buy the expensive flour mixes. The batter consists of the flour, egg, milk, baking powder, salt and sugar, oil, and whatever fruits or nuts I choose to add. I like either canned crushed pinapple or chopped banana along with chopped walnuts. I usually have one or two muffins with coffee. I may also eat an apple or some other piece of fruit. After making the muffins I store in the frig and nuke them in the morning. It really works well and takes the place of cereal or the like. I still eat eggs every now and then. Try to concentrate on feeling better with this diet and not on those foods you cannot eat. Don't try to find too many items in the beginning that are already made as you will frustrate yourself trying to read labels. 18 months into this diet and I still eat mostly naturally gluten free food because it is cheaper and safer. Plan and organize your shopping ahead of time. Do research with the computer and then make a list of what you want. A lot of products have either phone numbers and or websites for contact puropses. I have yet to contact a company that could not give me information good or bad. Hope this helps.

Tom

[Janiejerry]

I am fairly new to the world of gluten free. I was diagnosed last March. I have been sick off and on my whole life and never had a true diagnosis. The last two years I developed agonizing back pain and then nerve problems. Finally a rheumatologist diagnosed me. I am mostly relieved with this diagnosis. Just to have a diagnosis but I have my down times also. No more Pizza Delight and things like that. But it could be so much worse. I could be getting sicker and still be in agony. The nerve problem is better but not gone yet. My Dr said to be patient, so I am trying. I was a very active person until this pain set in but I am working my way back.

[bridgergirl13]

Hi Sissy! I'm sort-of newly diagnosed. The truth be told, I'm just now seriously dealing with my diagnosis. I've been doing my best to convince myself that by really "trying my best" to avoid gluten, I'm doing what I need to do. Up until now, I haven't been checking all of my sauces and condiments, nor my lunchmeats. I've been eating oats, trying to pretend that somehow I can "handle it" since I'm so limited by living wheat-free.

I'm a working mom with two little boys and a very stressful job (middle school teacher). I barely have time to grade papers and do my laundry...how can I justify spending more time checking labels, let alone spending money on special groceries? Besides this, food=love in my family. We're Italian (HELLO CARBS!) and dinner is very important. Now I'm inconveniencing everyone with my special requirements. Some people are kind; some act as though you're making it up for attention. One of my co-workers actually said, "I think Celiac is the new fad disease...like Chronic Fatigue." Isn't that lovely?

Anyway, I need to get honest with myself. It sucks to have a special diet, but there are so many people who have to take meds their whole lives to regulate their conditions. I know that I feel better when I'm diligent and I pay for it when I cheat. I am SO glad that I found this board because dealing with this disease alone really SUCKS. I hope that you make peace with your diagnosis and feel better on a gluten-free diet.

Thanks for hearing me out...I look forward to checking in here frequently for support.

[kbtoyssni]

I'm a working mom with two little boys and a very stressful job (middle school teacher). I barely have time to grade papers and do my laundry...how can I justify spending more time checking labels, let alone spending money on special groceries? Besides this, food=love in my family. We're Italian (HELLO CARBS!) and dinner is very important. Now I'm inconveniencing everyone with my special requirements. Some people are kind; some act as though you're making it up for attention. One of my co-workers actually said, "I think Celiac is the new fad disease...like Chronic Fatigue." Isn't that lovely?

Anyway, I need to get honest with myself. It sucks to have a special diet, but there are so many people who have to take meds their whole lives to regulate their conditions. I know that I feel better when I'm diligent and I pay for it when I cheat. I am SO glad that I found this board because dealing with this disease alone really SUCKS. I hope that you make peace with your diagnosis and feel better on a gluten-free diet.

Thanks for hearing me out...I look forward to checking in here frequently for support.

What you really don't have time for is being sick all the time. Your sons and your kids at school need you - they need you to be at 100% for them because they're relying on you. You're not inconveniencing everyone with your "special" diet. You will inconvenience them if you purposely eat gluten and get sick. You can take the time you usually waste being sick and use it to read labels instead. It does take a lot of time in the beginning to figure everything out, but things get much quicker. Now I don't spend any more time grocery shopping than I did pre-gluten-free.

I always say that I still eat everything I used to, I just have to be careful about what brands I get and make a few substitutes for things like bread, cakes, pasta, etc.

[wifeandmomofceliac]

Thank you all for your encouragement and support.

Yesterday was a nightmare, I feel weak and tired to begin with but I went grocery shopping and by the time I got thru reading every single label on every product I bought I was exhausted and a wreck physically and emotionally and at times even wanted to cry...I know this pity party will be over some day but right now it is in full blown hats and horns party mode. I have never spent so much time in a grocery store in my life. My husband of 45 years is a doll, he is willing to help me cook, eat whatever I can eat and even re-reads the labels for me in case I missed something on the first reading, good thing I kept him all these years.

I am really having a problem with what to eat for breakfast...I don't want to find out that my cholesterol is sky high in a few months, so even though I love them, I can't eat eggs every morning as a easy, quick breakfast. I have never eaten grits in my life, just the thought of them is unpleasant, but I guess you have to do what you have to do...or maybe one of you angels out there will tell me what you eat for breakfast. Sissy

I understand the time consuming agony of reading label after label, and being discouraged by the number of things that are not gluten-free. Over time, you will know which brands are probably okay (they do change ingredients from time to time, so keep checking). Also, I know I was SOOO excited when I went in to a store that puts a Gluten-Free label on the shelf for everything that is gluten free. If you have a Wild Oats store near you, check it out. This had been really great for when family or friends as what they can keep at their house for when we visit. They seem to prefer a simple to shop at store than a list from me, detailed down to brand and flavor. So now there are always snacks available at gramma's and friends' houses. The store is not perfect, and I have found a few things that were mismarked, but it greatly reduces the number of labels to read. If they do not have it marked, I don't bother to check it, and assume it is not okay. But if it is labeled as gluten-free it is probably okay. They even have gluten-free island in the store full of mixes, cookies (yummie ones) and breakfast bars (taste just like fig newtons - and I still know what those taste like since as my log-on name indicates, I am not actually celiac), and loads of cereals.

As far as breakfast, I saw some great posts. My family loves gluten-free pancakes and muffins. They are so good that we all eat the same thing, and everybody is happy. (I have one daughter that is celiac, and one that is not. Sometimes challenging to cook so both enjoy. Then again, this is true for any parent with more than one kid.) Also, our favorite gluten-free cereal is Rice Crunch-ems. Taste and look like Rice Chex, but no barley malt added. And not too sugary sweet for the grown-up tastes. Kids like the Puffins cereals. I often find the Rice Crunch-em in the natural foods section of the regular grocery store. And, if you talk to the grocery store manager, you can often get them to carry your favorite gluten-free items. Mine now carries Kinnikinnick bagels and breads. Yippee!

[Gamecreature]

Kids like the Puffins cereals. I often find the Rice Crunch-em in the natural foods section of the regular grocery store.

I hasten to point put that only the "Honey Rice" variety of Puffins cereal is gluten free. Some stores accidentally put all varieties in the gluten-free section.

[wifeandmomofceliac]

I hasten to point put that only the "Honey Rice" variety of Puffins cereal is gluten free. Some stores accidentally put all varieties in the gluten-free section.

Thanks for pointing that out. I actually did not know of any other variety, but am sure at some point the wrong one would have wound up in my shopping cart. I appreciate the heads up.

[booboo]

Sissy, I'm new too. I've found EnviroKids breakfast bars are pretty good. Like eating a rice krispie treat for breakfast in the car on my way to work. Their cereal isn't too bad, either. I was diagnosed 4 months ago, and I'm a wreck with it. Haven't cheated either. Still having trouble with sleeping, but no more night sweats. I'm blessed with friends who care, but the holidays will be scary food-wise.

[Rox]

A couple of rice cakes with Nutella is my new favorite quick breakfast.

My local grocery store (Safeway - I'm in Canada) carries Natures Path Honey'd Corn flakes which are great (not too sweet). Gotta love things that say gluten-free right on the box (yahoo!).

[Janiejerry]

Hey I'd forgotten about the night sweats! The way I try to look at things, is they could be so much worse. My husband has had a kidney transplant, been blind and regained vision, had a pancreas transplant that rejected 2 years later and been through a virtual hell. Once he became stable I became very ill. To know I can keep myself healthy without medications is really great. I certainly do have my down times when I feel sorry for myself but I try to keep positive. The worst for me was terrible back pain, foggy head, tired, and awful neuropathy issues. I was really starting to think I was crazy. Thank goodness my family Dr kept looking for answers. Never heard of Celiac before and I also get the people who have said they believe I could eat some wheat. Ok whatever. Life is short and I want to enjoy it:) Ok so I can't eat KFC, no one should eat it anyway

[bridgergirl13]

What you really don't have time for is being sick all the time. Your sons and your kids at school need you - they need you to be at 100% for them because they're relying on you. You're not inconveniencing everyone with your "special" diet. You will inconvenience them if you purposely eat gluten and get sick. You can take the time you usually waste being sick and use it to read labels instead. It does take a lot of time in the beginning to figure everything out, but things get much quicker. Now I don't spend any more time grocery shopping than I did pre-gluten-free.

I always say that I still eat everything I used to, I just have to be careful about what brands I get and make a few substitutes for things like bread, cakes, pasta, etc.

You are so right. Thanks for taking the time to reply to me. I'm really dedicated to getting this diet right and being healthy...not just for me, but for everyone around me. I guess the people who make me feel inconvenient aren't really worth the effort it takes me to worry about what they think, huh?

I'm really enjoying all of the stick-with-it tips and pep talk. Keep it coming!

[Mango04]

For anyone who finds label reading daunting, it might help to fill your grocery cart with as many single- ingredient foods as possible. If you have no other intolerances, you can literally go crazy with unlimited amounts of fruit, vegetables, meats, eggs, dairy, rice, beans, oils fresh herbs etc. etc. etc. The options with these ingredients are endless, even if you're not a master chef. That's not to mention the fact that it's healthier to eat this way, it's less stressful (how horrible is it to try and deciper a label that includes 25 words we can't even pronounce???) and it will save you time and energy (maybe I'm weird but I find buying fresh organic foods to be energizing ) Farmer's markets, co-ops and health food stores are good places to find new and interesting varieties of produce and fresh meats (and it's not necessarily more expensive to shop at these places if you're buying single ingredient items). Just an idea....

[debmidge]

We get the cold box cereal items from Whole Foods; usually buy Erewhon gluten-free, Nature's Path adn Glutino Brands; they make corn flakes, and rise crips and circles that resemble cheerios iwth apple & cinnamon. Yes do read the boxes, as they also make gluten based cereals too; so don't get them mixed up.

Van's has good gluten-free frozen waffles too. Gluten Free pantry makes pancake mix and you mix up just like ole' Aunt Jemina brand did.

Then there's Cream of Rice cereal by Nabisco brand.