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Coping With Celiac Disease Emotionally


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#1 Sissy

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Posted 11 October 2006 - 04:04 PM

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
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#2 lonewolf

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Posted 11 October 2006 - 04:10 PM

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.
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Liz

Started Specific Carbohydrate Diet on 8-16-09 because son was diagnosed with Ulcerative Colitis and want to give him moral support.

Diagnosed with Minimal Change Nephrotic Syndrome in 2003. Discovered that going completely gluten-free put me in remission.

I would have despaired unless I had believed that I would see the goodness of the Lord in the land of the living. Psalms 27:13

#3 4getgluten

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Posted 11 October 2006 - 04:34 PM

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.
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Karen
gluten-free since March 05

#4 2kids4me

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Posted 11 October 2006 - 04:40 PM

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!
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Sandy

Type 1 diabetes - 1986
hypothyroid -1993
pernicious anemia
premature atrial beats
neuropathy
retinopathy
daughter is: age 15
central hypotonia and developmental delay
balance issues (rides an adult 3 wheel bike)
hypothyroid 1996
dermatographia - a form of angioedema 2002
celiac 2004 - by endoscopy
diagnosed Aspergers at age 7 - responded very well (HUGE difference) to gluten-free diet
recovered from Kawasaki (2003)
lactose intolerant - figured out in Oct/06
Gilberts syndrome (April/07)
allergy to stinging insects
scoliosis Jan 2008
nightshade intolerance - figured out April 2008
allergy to Sulfa antibiotics

son is 13
type 1 diabetic - 2003 diagnosed on his 9th birthday
celiac - 2004 by endoscopy
lactose intolerant - figured out Nov/06

#5 Sissy

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Posted 11 October 2006 - 06:22 PM

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
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#6 kbtoyssni

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Posted 11 October 2006 - 06:25 PM

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.
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Gluten-Free since September 15, 2005.
Peanut-Free since July 2006.

#7 Fiddle-Faddle

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Posted 11 October 2006 - 06:31 PM

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
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#8 daffadilly

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Posted 11 October 2006 - 09:17 PM

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!
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#9 Sissy

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Posted 13 October 2006 - 09:12 AM

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
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#10 Gamecreature

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Posted 13 October 2006 - 09:54 AM

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!
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It's not about winning, it's about having fun while you play. Gamecreature

#11 Guest_Viola_*

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Posted 13 October 2006 - 10:20 AM

Hello... sometimes with breakfast you have to think outside the box :P 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 :P

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 :D

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. :lol: She always said that nuts are healthy.
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#12 Michi8

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Posted 13 October 2006 - 10:59 AM

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
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#13 par18

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Posted 13 October 2006 - 11:03 AM

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
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#14 Janiejerry

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Posted 14 October 2006 - 04:29 PM

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. :)
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#15 bridgergirl13

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Posted 15 October 2006 - 08:55 AM

[font=Book Antiqua][color=#993399]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.
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