Finally Facing Facts

[dragonkingbc]

Hi. I'm just looking for a place to dump, and this forum seemed like the most logical place. I'm a 39 year old male. I was diagnosed with Celiac Sprue in November of 2002. I have suffered with belly problems since I was 5 years old. Don't know how many mornings I was late to school because I was stuck sitting on the toilet with horrible pains when I should have been walking to school.

At 29, they told me I had Diverticulosis, pockets in the intestines. My doctor told me this was an old person's disease, yet I had it, and it put me in the hospital 5 or 6 times with Diverticulitis, when one of these pockets becomes infected, until finally at the age of 36, they removed about 6 feet of my Sigmoid Colon. Damn, that recovery time HURT!!!

But the pains didn't stop. I had a period of three months where I was in the local emergency room EVERY Sunday night with EXCRUCIATING pain. They would give me Demerol and send me home, they weren't sure what else to do with me. They finally suggested doing a CAT scan, but that didn't show anything. And Barium Swallows, and blood work. Nothing showed anything.

My family doctor couldn't figure anything out and he sent me to a Gastroenterologist. He asked me a bunch of questions and then did "THE" blood work. It seemed to test positive for Celiac Sprue or at a minimum Wheat Gluten Intolerance. I cried when he told me. FINALLY, an ANSWER!! They sent me to get a Gall Bladder scan and found that my Gall Bladder was dead. I had an operation to remove it and THEN the attacks started.

I would blow up like a balloon in my gut and it would move to my chest to the point where I couldn't breathe. I would turn grey and break into a sweat. I would panic which would only make matters worse. I would finally get close to vomitting and then burp and burp.....and burp.......and finally relief, except for the pain in my back. I eventually figured out that slamming some soda and making myself burp would alleviate the pain faster.

That's when I came up with the perfect metaphor. Did you ever see Willy Wonka and the Chocolate Factory? Well, there's this little girl who is OBSESSED with chewing gum. She grabs an experimental piece and Mr. Wonka tells her not to chew it, but she still does. It's a "Meal in a piece of gum!!". When she gets to dessert, it is blueberry pie, but something goes wrong and she starts to fill with blueberry juice. She keeps inflating and inflating and inflating. You get the point. That's what it feels like when the attack starts and builds.

And then there is another part, when Charlie and Grandpa Joe, the main characters (the movie is based on the children's novels, "Charlie and the Chocolate Factory" and "Charlie and the Great Glass Elevator") drank some "Fizzy Liting drink" and started to float and fly about. All was fun and games until they floated too high and found they couldn't come down. The kept rising and rising and noticed they were floating into a HUGE fan!! Grandpa Joe figured out if he belched, he would float down. They both burped and burped and it saved their lives. I hope you see the similarities.

Once I healed from my surgery, the tummy doctor did the biopsy and confirmed I had CS. I went on the gluten-free diet for three months and did splendidly, for the most part. This is when I figured out that somethings contain Gluten that you don't realize contain Gluten, including most pre-processed, easy to prepare convenience foods that, as a middle class American, you take for granted. And I suffered a few times from Tater Rounds, and Soy Sauce, certain steak marinades and baked beans. Just things you NEVER thought would contain such things.

My wife took on a lot of the responsibility for label reading and such. I mostly decided it was easier not to eat. I was so afraid of not knowing something contained wheat, oats, rye or barley. And I worked nights. I counted a lot on fast foods. No more. I lost some weight. About 30 pounds. Weird thing was, I had been pretty heavy until recently. We thought with Celiac Sprue people they seem to have trouble gaining weight. But I made it through the time I was asked to before biopsying again.

The test showed that everything was fine, which proved I had Celiac Sprue. I was feeling particularly unconvinced after hearing this news from the doctor. I decided I would try to eat a cheeseburger. Dumb idea. I threw up and I was in so much pain, I thought I was going to pass out. I sometimes wonder if this wasn't some how psychosomatic.

But since then, things have changed. I don't eat anything questionable on purpose. We read the labels on everything. But up to this point, my wife has taken most of the responsibility of making sure I don't get sick. She asks questions at the restaurants, she looks up the recipes on the net, does the majority of the cooking, reading and research. I love her dearly for it, but she and I talked and decided that treading water may keep you alive, but it also keeps you in the same place. I have decided to take responsibility for a lot of things in my life, starting with my illness. I need to do the research and talk to others who have the same problems, find out what's good and bad in recipes and books and foods. So that's why I'm here. I want to know what other people have gone through. Was there a sense of not wanting to take responsibility for the illness? I find it's easier to not eat at times, especially when we go out somewhere where I'm not familiar. I actually have an anxiety attack and get a pit in my stomach. I HATE going out to eat sometimes.

Anybody else with experiences like this? How about when you want a FREAKING HAMBURGER BUN!!! We have found some good pizza recipes I would love to share. I also miss a good cake! Anybody found anything that tastes close to real?

I've also found that a lot of junk foods are edible. Do any of you find yourself indulging in these items? To me, it's all about convenience, and nutrition suffers.

In other words, I want to find that there are other people out there who are going through what I'm going through and we can go through it together. Isn't that what this type of forum is about? I just wish I would have had the guts to do this before now.

I have Celiac Sprue and I need to take responsibility for my own disease. But I don't have to do it alone and neither do you.

So write about your experiences and stuff. I have been hiding this for almost two years. I can't do it anymore.

Thanks for reading this!!!

[tarnalberry]

That's a very interesing experience, and I've heard others like it. I became interested in cooking in college, and became a food nazi, and health nut at the time as well. (Good food is made from scratch, from high quality ingredients... hence becoming a food nazi. ;-) ) But it was determined I was gluten-intolerant three years after I got out of college. To me, it was mostly just another challenge in my cooking - and I like a challenge. There wasn't really a question of denying that I had it, 'cause it made me feel worse to eat gluten. (And my symptoms were not nearly as severe as yours.)

But it varies so much person to person. If eating whatever was something you took for granted of and didn't think about much, it'd be different than if you were someone who often thought about food preparation. (Even if it was to fantasize about what sort of new things you could make for Thanksgiving dinner. ;-) Which I still do, and will start doing Nov. 1.)

I think there's a logical chain - we don't want to do something that's really hard to do. And if our diet changes drastically, it's hard to make that change. Hence we don't want to make the change - we want to find anything else that we can do instead. If your diet doesn't require a huge amount of change to go gluten-free, it's not that hard. And you don't have to sacrifice convenience, for the most part. (That's what leftovers are all about! ;-) ) But veggies and dips (again, easy to make at home with a CuisinArt or a blender), fruits, and cheese/yogurt (if you can have dairy), are all nice, fast snacks. I think that the mental shift is the hardest part, and I don't know if you can do it well if you're in the middle of worrying about actually eating. I know it helped me a lot to sit down and just think about what I would want to eat in the following week. We grow up with a lot of gluten-full options, and it takes some time and retrain ourselves into a different mindset.

I'm glad you're taking responsibility for it. And if I don't sound as supportive as I could in this one, really I do understand. (I have a different physical problem that I didn't shirk responsibility for, but didn't take full responsibility for getting to a psychologist for a little while.) But there's no looking back now! You've made the right choice, you're going to do something about it. Don't worry about the past choices too much - you can't change them. Just go forward. :-)

[BamBam]

I also am finally taking responsibility for my health. Over 8 years ago, a friend suggested that I stop eating wheat, I was sick for about 5 years, horrible pains, diarrhea and the whole nine yards, I couldn't travel, my anxiety and panic was horrible during this time. I gave up the big stuff, I stopped eating bread, carmel rolls, pizza crust and the things that you can actually see. I never paid attention to the little stuff, the malt in my Rice Chex and the modified food starch and artificial and natural flavors that are found in hundreds of things. Well, finally, after being sick again I finally said FINE, I will give it all up and you know what, I feel almost 100% better. I am also lactose intolerant, so that makes life a little more complicated, but it is only complicated if you want it to be. I read your story and thought about what I went through and our stories are so much the same. I just joined this forum in June or July and have learned many many things from my friends. I have some really good recipes that I will share here soon, I have a Chocolate Coca Cola Cake that is just out of this world. The fizz of the pop makes it so moist and it is wonderful! I also have a good carrot cake and a few other things, so make sure you look into the part that has recipes and free cooking tips, they should be there in the next few days!

I thank God that I finally "saw the light" or whatever that made me finally take responsibility, because our health is so very important.

Bernadette

[Carriefaith]

Hi! I know what you mean about the hamburger buns. I get annoyed when EVERYONE else is sitting there eating their hamburgers with real buns and I have to eat one of those gluten free buns that crumble and fall apart.

The worst for me is pizza since I am also lactose intolerant. I used to love regular gluten pizza! Now my gluten free pizza can't even have cheese on it!

I took food for granted before I went gluten free. I could just eat whatever whenever and I didn't always think about food.

But it is different now. I have to plan ahead take extra food with me places. And I am always thinking about food, with this make me sick? Can I eat this? What am I going to eat today?

I'm sure we all go through similar experiences with the food issue.

-Carrie

[jendenise]

I was in the same place as you dragonkingbc. After being diagnosed with celiac disease I went from being ecstatic because I had an answer to my "issues" to being completely depressed and feeling helpless. For the first 6 months I ate only peanut butter and Strawberry Kiwi Propel. My nutritionist couldn't even force me to eat by explaining how much more sick I would be without any nutrients. If it hadn't been for my mom and fiancee I would probably still be eating the same things. I quit caring all together about my health. It's embarassing to say I allowed myself to get that worked up over my diet. It was definitely a big change and very frustrating to say the least, but I began doing research with the "extra pushes" from my mom and fiancee keeping me going. I found Sully's "Living Without", an awesome magazine, as well as many online gluten-free stores, and I live close to a whole foods market and a Smith's grocery that both carry gluten-free food. I'm a huge advocate of Amys.com, and only recently discovered this message board. I now eat normally and I took control of my situation. I was very sensitive about having celiac disease in the beginning and didn't tell anyone, I stopped eating out for a while too. Now, I know a lot of the owners and chefs at the restaurants I eat at by name and they are helpful and careful w/ my food. I've come to the conclusion that there's nothing that will cure it for now, so instead of letting it control my life I control it. Gluten Free is my life style now, and I enjoy it. I can't hate it forever if I'm gonna have it forever, and I never realized how healthy I could be once I began a gluten-free lifestyle. Try checking out "The Good Life" post under "Coping With" it's uplifting. Good for you for deciding to come to terms with this, it takes time and you're lucky to have such an amazing wife who is there to help you and support you through trying times. Let her know she can post too, under family and friends of those with celiac disease, or anywhere for that matter if she wants! Best wishes!

[hancoc18]

Hi

I was just diagnosed after spending over a month in the hospital with severe abdominal pain that would go right into my back. They ran test after test and could not figure out what it was. The funny thing is when I first went into the emergency room the ER doctor said she had a relative with celiac and this was their symptoms she suggested me getting tested. We suggested to my dr. Although it took much convincing to get the test done, it was about the last tests done, I am so thankful for the ER dr! During my numorous stays in the hospital I had 4 mri's done, 8 cat scans, a laproscropy, cystoscopy, 2 endoscopys and 2 colonoscopys to later find out this was my problem. I even had a phyciatrist (sp) come in to talk to me. He found the only thing wrong to be "being in the hospital." This surely put a new perspective on life for me.

I am currently in my third year of college. This took place during the summer, and end of last year. I am trying to adjust. I am starting to find food to eat but I am having a hard time getting the cafe to adjust their foods so that I can eat them or anything in the cafe. Any suggestions? Right now I am eating so much in my room but it seems pointless to have a meal plan which is required and I am not getting much meat (the cafe meat is put in broth to keep in moist- gluten) because I have a microwave and a refr. to make my foods with. Has anyone found any good gluetin free bread, pancake mix, bagels?

My favorite gluten-free food thus far is pretzels and rice krispy treats with gluten-free rice crispies, marshmellows and gluten-free butter- they taste better than the normal ones.

Just reading other peoples posts have made me feel better and that there are foods I can eat! Thanks for your advice.

[plantime]

It is time to stop denying, and start taking charge! For me, the dietary shift was fairly simple. Since I already ate mainly meat and veggies for dinner, I only had to skip the bread for that meal. I made lunch from the previous day's dinner, so that was easy. The problem I had was breakfast and snacks. Cereal, sandwiches, and cookies/cakes were quick, easy, and yummy! I can have chocolate and dairy, so I find myself eating a lot of Hershey bars and plain ice cream for snacks. My kids tell me that eating meat and veggies for breakfast sounds real good to them. Easy for them to say: they eat poptarts and donuts and such. The day of my endoscopy (which was done for ulcers, celiac had been previously diet-diagnosed), I had entertained the notion of having some Dolly Madison cupcakes for a snack, since there was no "absolute proof" that I was celiac. I am glad I did not, but it was not easy to resist. I get tired of reading labels in the supermarket, it makes grocery shopping take twice as long. People look at me like I am nuts, and even "talk down" to me when I insist on reading the ingredient label before I will put anything in my mouth. I have been told that I have no sense of adventure, because I will not eat any food that I cannot identify first.

As far as the hamburger thing goes, I have a suggestion! It works very well for me, so I will tell all of you what I do! I wrap my burger, with no bun at all, in wax paper. I put the patty on the paper, stack my toppings, fold the paper over the food, and eat it like a regular paper-wrapped burger. I just peel back the paper as I get to it, just like a fast-food wrapped burger. I don't have the bun to worry about, and yet I can just pick up my burger and eat it just like everyone else. When we are out eating at a burger joint, I am able to look just like the others, instead of looking like a snob using a fork and knife. I only eat at restaurants that know and understand about celiac, which limits me to the Sonic where my son works! However, hubby and kids have been wonderful to me about this. They take turns cooking for the family, and they always check the labels, and are very careful about cross-contamination. We go through lots of aluminum foil, but I am not saddled with the "burden" of what I eat all of the time. I have been wonderfully blessed where that is concerned. I am the one doing the research, but they listen to what I tell them about, and they help me. If my kids do develop celiac (right now, they have absolutley no symptoms, but we are watching for it!), then they will know what to do for themselves.

It is our health, our lives, our responsibility!

[tarnalberry]

hancoc, one thing to consider is that, legally, the school MUST provide you with safe food, assuming you are in the US, of course. don't hesitate to go in and talk to the director of the food services until you have this resolved. under the americans with disabilities act, they have a responsibility to provide you with safe nutrition.

[stef-the-kicking-cuty]

@ dragonking: I've also heard about people having that problem....that's not easy...

But one other thing. This is about the hamburger buns and rolls in general. I don't know, how you can miss these buns for your burgers and stuff here in the states. I'm not an american, i'm german. And sorry to say that, but your buns or rolls. Well, i don't like them at all. Yack... Much too soft and skinny. In germany our buns or rolls are double thick with a crispy "skin" and a soft white "inner life". Yummi! It's really crunchy, when you bite in them. Hmmm! Like a real roll should be. And not that soft (yack) thing where every little liquid (oil or seasoning or stuff like that) soaks through like a towel. And you smear everything over your hands. Ugh... I really missed our rolls when i came over here and hoped for the times, when i could travel again for one good old german roll...lol. And then about 9 month later i heard that i never will eat rolls again. Well, not that kind of rolls. THAT was really bad. I was in a state of steady frustration.

And @ dessa: Next time, when you have those stupid people "talk down" to you when you want to eat the labels, just tell them , that they aren't the persons that suffer from cancer later, if they don't pay attention to gluten. And if they still would talk that stupid then, when you have cancer and if they want to take the responsibility of you getting sick (or more sick). If they answer with no, then you can tell them to shut up. And mostly they will answer you with no, cause nobody wants to take responsibility...

Sorry for my language or spelling. But i have one of my "angry" days again.

Stef