Things have been good....

mostly.
Man, I can't believe I haven't written anything for 2 weeks! Things have been going really well. My stomach is feeling better, I'm not as tired and I have actually felt not so grumpy- aka, "happy". :)

Last Saturday night, I must have gotten glutened. I could actually feel my personality shift, I felt exhausted and my stomach hurt just a little. It was bizare.

But today, I went to Taco Bueno. I am now changing it's name to Taco No-No. Six weeks ago, I had looked them up and as long as I stayed away from flour tortillas, it seemed I was fine. So I had their chips with meat, lettuce, tomato and cheese on them. I start feeling bad on the way home and so I get online right away. (This is why I should consistently check things) I find new blogs saying their meat's seasoning has wheat in it and their chips are fried alongside their flour tortillas. GREAT!!

So I now say R.I.P. Taco No-No. You now join the likes of Subway, Cane's, Sonic, Sam's, Long John Silvers, Panera Bread and KFC. :(

It's been a month

One month down, the rest of my life to go! :)

I'm all ready doing better with the gluten-free diet. It is getting easier. I was asked at my meeting on Tuesday how I'm doing since I'm only a month in. They were all pretty surprised that I'm doing as well as I am. They all talked about how it's the hardest thing they've all ever had to do. I agree, but I think I just accepted it a little quicker than they all did.

At home, it's fairly easy, as long as I plan. There's no more, "hey Russ, will you pick up pizza on the way home?". I HAVE to know what I'm fixing every day. Lunch is hard. It can get monotonous. But by far, the hardest is eating out. There are lots of places I will never be able to eat at again- Cane's being one of them. Oh how I loved Canes. :(

But even at the movies last night. We got balcony tickets and I hadn't eaten dinner yet, so I thought I might get something there. Nope. Unless I wanted a salad. No thanks. I'll stick with the popcorn. This is just something I'll have to deal with. It's ok. It's good for me. Too bad I found all of the gluten-free goodies (brownies, cookies, etc.) or I probably would have lost at least 5 pounds by now!! grrr. I only have myself to blame.

Anyway, this next month, I'm hoping to really start feeling better. My stomach definitely feels better, but I'm ready for all of the other junk to get better. Headaches, fatigue, irritability, and so on. That can all just go away!!

Support Group

I went to my first Celiac Support Group meeting tonight. It was really great. I didn't have any idea what to expect, so I was wide open to any information anyone could give me.

A dietitian spoke and gave us handouts. People with celiac disease really have to worry about getting the right nutrients and vitamins. She focused on that a lot. It was really good information.

I got some free goodies, and the regulars brought gluten free goodies. Now that was fun. I could eat ANYTHING on the table!! I didn't have to worry about only getting the fruits or nuts or veggies. ANYTHING!! So I had a snickerdoodle, brownie, lemon bar (ok, TWO lemon bars- hey they were tiny!), chocolate chip cookie, and peach cobbler. Yes, I ate all of that. I didn't have time to eat any dinner before I went, so I didn't feel too bad about the calories. I think I was just so excited to be able to eat it all that I felt like I had to try it all. I loved that!

They have a meeting every other month. I would really like to go back. It was nice being in a room where everyone understands. There was a couple there that the husband has CD, but the wife understands EVERYTHING. She was great. There was a mother/daughter there. The daughter (14 years old) has CD. The mom said their house went gluten free. She loved to bake, so she just learned to bake GF and now has a catering business- Gluten Free Goodies by Cindy. Cool.

A woman who has had CD for 7 years now (didn't take it seriously the first 2, so she says she's been GF for 5 of those years) exchanged phone numbers and emails with me. She told me I could call her any time or email her any questions. So Pam- now I won't be bugging you as much. :)

Anyway, it was great. I highly recommend a support group for anything that may be going on in your life.

I know God has a plan for me, I don't know what it is yet, but I pray He can use me for His glory. CD and all. :)

One week

One week- that's how long I went without having stomach pain. I can't remember the last time that happened. It has surely been years. I feel as though I am slowly feeling better. My stomach does feel flatter. I don't feel nearly as bloated as I usually do. I haven't lost a single pound, but that's all my fault. I have found way too many gluten free brownies, cookies and cakes! And they are GOOD! So now that I know they are out there and they taste good, I can get off this path and on to the healthier one. :)

We went to On The Border last night. I was completely impressed with their manager, Jeff. I asked for a gluten free menu when we walked in and he went to the back to get it. He told me his aunt just found out she had celiac 6 months ago, so he knew all about it. When I asked him about their chips and corn tortillas and how they cook them (in the same oil as everything else?) he actually called his aunt. He asked her what he should recommend to me to be sure I don't get sick. He even told me once I decided what I wanted, he would go back and make it himself so he didn't have to explain everything to the chef. It was good (a little spicy)! It was really hard to not eat the chips, but that's just part of my life now. It's a good thing. Anyway, I HIGHLY recommend On the Border here in Norman- they are GREAT!

Gluten free YUCK

Yuck is how I describe the cookies I made last night. Ew, pleck, gross, blewie.

In the first week after finding out I had Celiac disease, I was on a hunt for good chocolate chip cookies. I can't live without chocolate chip cookies, so if there weren't any good ones out there, I was just going to have to give up on living. ;)

I found some really good ones in a brand called Nameste. You mixed them with oil and an egg. But I haven't been able to find them since.
So I thought I would try a different brand of the cookie mix. Bob's Red Mill has a LOT of gluten free products out there. The mix looked ok, so what the heck, let's try it.

NEVER again! My girls always want the beaters when I make cookies. So I gave the beaters to them and within about 10 seconds, they started literally gagging and running for the trash can. The dough tastes like metal. Really- it has a weird metallic taste to it. The cookies aren't nearly as bad. But there is still a strange aftertaste to it.

So why in the world have I eaten 6 cookies since I made them? I have nothing else to eat! I made a few more after lunch today, just hoping that they would taste better today- NOPE. Worse actually.

But on a high note, I made pasta last night with vegetable spiral noodles. I cooked up some ground turkey and put spaghetti sauce all over. They were awesome!! Made with brown rice- Russ said he would not have known the difference if I hadn't have told him.

So trial and error it is. But it is an adventure, that's for sure!

The Forbidden List

People keep asking me what I can't eat. So I found this list. This is actually a small list because it doesn't include all ingredients. But I thought I would share so everyone has an idea.

Abyssinian Hard (Wheat Triticum duran)
Avena (wild oat)
Barley (Hordeum Vulgare)
Barley malt, barley extract
Beer, ale, porter, stout, other fermented beverages
blue cheese
bran
bread flour
broth
bulgur (bulgur wheat, bulgur nuts)
bouillon
cereal (cereal extract, cereal binding)
cookie crumbs
cookie dough pieces
cracker meal
crisped rice
croutons
couscous
dinkle
durum
einkorn, wild einkorn
emmer, wild emmer
edible starch (modified food starch)
farina
farro
filler
fu
flour (including but not limited to :all-purpose, barley, bleached, bread, brown, durum, enriched, gluten, graham, granary, high protein, high gluten, oat, wheat, white)
germ
gluten, glutenin
graham flour
hordeum, horderum vulgare
hydrolyzed oat starch, hydrolyzed wheat gluten, hydrolyzed wheat protein kamut
malt, malt beverages, malt extract, malted milk, malt flavoring, malt syrup, malt vinegar
matzo (Matzah)
MIR (wheat, rye)
miso (may contain barley)
mustard powder
oats, oat bran, oat fiber, oat gum, oat syrup (oats are generally safe, but because they may be in the same plant as wheat, or the same combine is used for the wheat and for the oats, they are often contaminated. So I have to look for "pure uncontaminated" oats.)
oriental wheat
orzo pasta
pearl barley
persian wheat
rice malt, rice syrup, brown rice syrup
rye
soy sauce
seitan
semolina
spelt
sprouted wheat
tabbuleah
teriyaki sauce
triticale
udon
vital gluten
wheat, wheat berry, wheat bran, wheat germ, wheat germ oil, wheat grass, wheat gluten, wheat starch, whole wheat berries.

The following items may or may not contain gluten depending on where and how they are made, and it is sometimes necessary to check with the manufacturer to find out:
artificial color
baking powder
caramel color
caramel flavoring
clarifying agents
dextrins
dextrimaltose
dry roasted nuts
emulsifiers
enzymes
flavoring
food starch
modified food starch
gravy cubes
ground spices
hydrolyzed plant protein
maltose
natural flavors
non-dairy creamer
seasonings
soy sauce
stabilizers
stock cubes
vegetable broth
So next time you look at ingredients on a package, try to remember these. :)

Do I HAVE to eat out?

I never thought I would NOT want to eat out. But that's how I feel right now. I have looked up all of the restaurants in town that have gluten free menus. Ok, (so I'm learning) Big Deal! They say their food is gluten free- great! But how are they really preparing it? Are they cooking the meat on a grill that you just cooked a steak on with lots of marinade? Did they just flip my hamburger with the same spatula they used on the buns they just put on the grill? Did they take my salad back that had croutons on it and just pick out the croutons instead of bringing me a fresh salad?

Since I now have gotten sick twice after eating out, I am learning not to trust these "gluten-free" menu restaurants. It's very disappointing.

But will I stop going out to eat? No. Will I not go as much? Yes.

Russ wanted to go to a Mexican restaurant last night, but I opted for fixing Mexican at home instead. It's much safer. I didn't get sick last night, so I guess it was all gluten free! :)

And for anyone who is curious: I have read that every person's body reacts in different timing to gluten. Some people feel it almost immediately. Other people may not notice for a day or two. For me and my lactose intolerance, I noticed within 30 minutes- 1 hour. And for the 3 times I've gotten sick since I went gluten-free, it's been on that exact schedule- 30 minutes to an hour after I ate. My body is also trying to get adjusted to all of this. I'm trying to get the gluten out of my system AND trying to get adjusted to no more coming in. So when it does accidentally come in- OW! Very painful. But I keep on going!

Dietitian

So did you know you can spell it dietitian or dietician? Both are spelled correctly. Strange huh?

Anyway, I saw a dietitian yesterday. She was great. She gave me a ton of information and websites to go to, support group info., meal ideas and so much more. It was really interesting. She also told me that if we found out the girls have it, she would go to their teachers and speak with them about celiac disease.

One of the things she really stressed yesterday is that I am not the first one in my family to have this. It generally doesn't appear out of no where. So unless I was adopted and don't know it, SOMEONE in my family has it, they just don't know yet. So I really want my parents and brothers to be tested for it.

Like I said before, my symptoms were mainly GI. But in other people they may show up as depression and fatigue or skin issues. I won't list all of my family's "problems", but I do believe there are a few people in my family- mainly my mom's side- that may have CD. Go get a blood test!!

Anyway, that's it. I may be sending out personal emails to those family members- only because I love you! :)

I got glutened....

10 days in. I have done as near to perfect as I could. I haven't eaten even a crumb (to my knowledge) of gluten. This is now my life. This is not a diet, or something I can do until I'm tired of it. It's forever. But I'm feeling better. So I just keep on going.

The symptoms of celiac disease are so widespread. My symptoms are GI issues- bloating, cramping, pain, a little nausea, & bathroom issues (we won't go in to that). Also underlying lactose intolerance. But the more I read, I think I have other symptoms that I didn't know are gluten-related. Anxiety, depression, fatigue & foggy brain. I just blamed most of those on being a tired momma. I also have bad breath and yellowish teeth (which I was told comes along with being a redhead).

Symptoms that other people have are muscle weakness, failure to thrive (mostly in kids), night blindness, canker sores, unable to concentrate, moodiness (Russ would tell you I have this), can't concentrate, skin issues, irritability & poor memory (I kind of have these last two)

They are even connecting gluten intolerance to autism. This intrigues me so much. I studied autism in college my senior year. I wrote quite a few papers on the subject and worked with students that had autism. I even had two students in my own classroom that had autism. I've seen how it affects kids, and just the thought of changing their diet to getting gluten out could change their lives, fascinates me. I can't wait to read more studies on this.

Anyway, I'm rambling...

I ate something tonight that had gluten in it. This is what I ate today, so Pam, help me out...
Breakfast: 2 gluten free blueberry muffins, water
lunch: 3 pieces of turkey lunch meat (it's GF), piece of cheese, apple, piece of GF chocolate cake
snack: GF muffin
dinner: went to Chick-fil-a: had the chargrilled chicken salad with the berry vinaigrette dressing (on their website they say both are GF). Also had their fries (could this be it?)
Oh, also had A&W root beer at lunch (everything I've read says it's GF).

I was just sitting in the living room (about 30 minutes after I ate) and all of a sudden, out of nowhere, my stomach started cramping, hard! My stomach was gurgling, it hurt sooo bad, I thought I was going to throw up. I wonder if it hurt so badly because I've been GF for 10 days. It was worse than any other time ever! It took about 45 minutes for the symptoms to subside, but it sucked every bit of energy out of me. So at 8:30 as I was searching the ingredients OF the ingredients in things, I was ready to go to bed. But here I sit at 9:30 still trying to figure out what I ate.

Because what ever the heck it was, I don't EVER want to eat it again!!

Red Robin

Yesterday was Maddie's birthday and she really wanted to eat at Red Robin. For being fairly shy, she loves going to restaurants where they sing happy birthday to you. Plus, someone at school told her they give REALLY big sundae's for birthdays. So that's where we went.

I got online to see if they had a GF menu. I read a few things and decided I would be ok, as long as I REALLY stressed to the waiter how important it was that everything was GF.

So I asked for a GF menu from the hostess as she took us to our seats. Then when the waiter came to ask for our drinks, I asked again for the menu since I still hadn't gotten it. Someone comes over with a 4 page stapled together print off from the computer. I was a little worried at first. But it actually worked out ok.

I ordered a cheeseburger, without bun, lettuce and tomato. They brought mayo and a weird sauce, but I just took them off my plate. I asked the waiter if he was SURE they fry their fries in a separate fryer. He was very confident that they don't get cross-contaminated. But I couldn't have the spice they sprinkle on their fries- I had read that online. So they made my fries separate.

It was really good and our waiter was very understanding. I didn't have any problems last night or this morning, so I am putting them on my "safe list"!

Blessed

After watching "Idol gives back" (American Idol) last night, I was reminded of how blessed I am. There are so many people in the world that struggle to buy food for their families every day.

For the last 7+ years, I have worked in my church benevolence office. We have a food pantry that is open one day a week to give bags of groceries to needy families. Every time I work there, I am reminded of how blessed I really am. It is sad to me that some of the people that come in have NO family at all to help them. I know I have family that would help us. Not just my immediate family, but aunts, uncles and even cousins that would help if my children had no food.

So in watching American Idol and thinking of having to visit a food pantry, I realized how hard this would be if you have celiac disease. Or diabetes, or menieres disease, which my sister-in-law has and my brother-in-law was just diagnosed with. It's a disorder of the inner ear that can cause terrible vertigo and hearing loss in one ear. So to help it, they have to REALLY monitor their salt intake. (Gluten-free/salt-free holiday dinners are going to be fun, huh?)

I am blessed that my husband has a good job and I can afford to buy all of these gluten-free foods to help my health. It's no wonder so many people in the world have bad health. They can't buy the proper food. It makes me sad. But it also teaches me not to take anything for granted.
Thank you God for blessing me so greatly. I hope to take my blessings and bless others as you have blessed me.

One of "Those" people

I was out running errands today and I realized I had not done enough research on where to eat for fast food. I knew Chick-fil-a was fairly safe (only because I had been told this by another celiac- Arlene). So I had a grilled chicken sandwich- minus the bun. It was wrapped in a big leaf of lettuce. Their fries are supposed to be safe too because they cook them in their own fryer- not the same one as their nuggets. Anyway, it was an interesting experience.

But just in driving through town, I saw ALL kinds of places I will never get to eat at again- Long John Silvers (haven't eaten there in years, so not that big of loss), Subway (so sad about this one!), Panera Bread (yum), Pizza Hut:( Ok, I know I can have a salad anywhere I go, but who wants to live on lettuce their whole life. I'm not a rabbit.

When I came home I realized a big one- I can't eat at the Ladies spring dinner. This is one of our church events that is planned every spring at a cute little restaurant in town. I know, yes, I can have a salad. But see above paragraph to see how I feel about that. Plus, it's at a BAKERY! Hello??!! I called my friend, Sarah, to tell her that I'm not trying to be a baby, but I am really just not strong enough to be around others eating REALLY yummy food. I know it sounds dumb, but I'm not there yet.

She told me we could order a special meal for me. Great- I've become one of "those" kind of people. Ugh. Needing special treatment wherever I go. What's going to happen if we ever travel? I really want to go back to Italy someday- all they have there is bread, pasta, pizza, did I mention the bread??

Sorry, this is my complaining post. I promise to do a new exciting recipe or something on the next one. I just have good and bad days right now. This one is a down day.

Reading Chinese

Going to the health food store on Saturday was hard. I cried when we got back to the car. While standing in the isles looking at the gluten free foods, trying to guess which foods were good and which ones suck was really hard. I felt like I was standing in front of food with Chinese labels. I had NO idea what I was looking at.

I have been reading everything I can since I found out about this. I think I probably spent 4 hours on the computer yesterday. (don't tell my husband) I am the type of person that has to know EVERYTHING I can. And... I want to know it NOW. I hate feeling in the dark.

I met Pam at the health food store today. She helped me sooo much. Russ is going to be mad that I didn't bring my notepad and pen like I should have. But hopefully I'll remember many of the good things Pam told me. There are many different brands for the same things. Just like in regular food. But in the gluten free world, some of these foods are really not very good. Todd and Pam have done a lot of experimenting with the different brands over the years, so now they know the good ones. So thank goodness I don't have to do this! I can just go right to the good stuff. :) Thanks Pam!

Last night I had penne pasta with spaghetti sauce and hamburger. It was great. Even Russ and the girls said it was good. So now on my cooking list we have pizza, penne pasta, and cookies. :) Oh, and Pam's yummy recipe that she put on her blog: http://gfhousewife.blogspot.com So I'm building my GF cook book one recipe at a time!

learning

I have soooo much to learn about Celiac disease. These are a few of the recent lessons:
I need to check the ingredients of my lipstick!
I need to check the ingredients in my toothpaste!
I need to buy my own cutting board and toaster.
I can't eat the communion wafer at church.
I can't cut the girls' food with my fork and knife and then eat with it.
I have to use a different pizza cutter for my GF pizza.
I should use different cooking utensils.
I can't lick my fingers after fixing something for the girls.
It took all of the strength in my body to not lick the spoon or my fingers after making cookies for Maddie's sleep over.
Eating out is really going to suck.
I really worry that my girls are going to have this disease since it is genetic.
Licorice is made with gluten. So sad. I lived on twizzlers and red vines my freshman year of college.
Gluten Free food is EXPENSIVE! After shopping at the health food store yesterday, I realized very quickly that I do NOT need snacks. And if I do, then I'll be eating an apple.
Planning is going to be my saving grace. I HAVE to plan ahead for meals- ALL meals. I have to plan if we want to go out to eat. I will have to get online to see if the restaurant has a gluten free menu (there are 6 here in town that do).

That mountain I am climbing is still huge, but now I feel as though I have a rope and climbing shoes on and I'm ready to go.

Johnny Carino's

We wanted to go out to eat tonight, but I was so scared. I don't know how restaurants prepare their food. I don't want to eat salad everywhere we go. What do I do? Well first, I call Pam. After a few suggestions from her, we decide on Johnny Carino's because it has a gluten-free menu. Cool.

I LOVE the bread dipped in roasted garlic, olive oil and balsamic vinegar. Let me tell you that God was watching out for me tonight. We ordered our food and our waiter tells us they are out of bread and it would be a while. I was so glad. I don't think I could sit there with warm bread while waiting for my food. It came at the same time as our salads, so I did have something to eat while Russ and the girls ate the yummy bread.

Back to the gluten-free menu. It was pretty cool. You just have to ask for the menu, it's a totally separate one. So I ordered chicken marsala with potatoes. They fix the chicken without flour and put it over potatoes instead of noodles. It was fantastic! When they first brought out my salad, it had croutons on it, but I sent it back and they brought me out a fresh one, with NO croutons. Our waiter was great and very understanding. Even the hostess was great. She told me she has celiac disease, so if I had any questions, to just ask her.

So for all of you celiacs out there- I HIGHLY recommend Johnny Carino's. And if you can- keep the bread off the table. It looked soooo good!

Tuesday April 13, 2010

This was the day I found out I had Celiac Disease.

I have been having stomach problems for about 12 years. It started shortly after Russ and I got married. So I often blame him. :) I can remember laying on the living room floor, with my knees curled up to my chest and being in so much pain it was hard to breathe. I remember being on a walk with Russ and our dog and it hit me like a truck. I bent over and couldn't even stand up straight the rest of the way home. I had NO idea what was going on.

I started watching what I ate and drank. I didn't ever see a strong pattern. But about two years later, when I was 24, a teacher I worked with told me she was lactose intolerant. She had me experiment by not eating any dairy for a week and see how I felt. I felt great! After reading tons of books on lactose intolerance and seeing my doctor, I had figured it out!

But still, on and off I would have stomach problems. There were times my stomach would bloat up so big and it hurt so bad that even loose sweat pants hurt to have on. I have kept countless food diaries and never saw anything that I could point my finger to. So I just thought I would have to stay away from dairy and carbonated drinks for the rest of my life. But that didn't always work either.

Just in the last 6 months, my stomach has gotten even worse. It would hurt so bad and have such sharp stabbing pains, that I would have my loosest pants on, legs pulled up to my chest, heating pad on my stomach, have taken every type of medicine I could and I would be sweating and crying it hurt so bad. It even woke me up from sleep many nights.

I couldn't take it any more. I knew SOMETHING had to be wrong. So I went to a gastroenterologist. He did a scope and a colonoscopy. I was thrilled! No really, I was! I just wanted an answer.

When I woke up, I was told I had IBS. Ok, there's an answer. But what does that mean? I have to stay away from caffeine and stress? Um, really? That's IT? There's got to be more. So for 3 weeks after the diagnosis, I tried REALLY hard to watch my diet and have no caffeine (except for a little chocolate). It wasn't working. My stomach STILL hurt.

Not only does my stomach hurt, but it sucks the energy out of me. It literally feels like all of my energy is in my stomach. I hate this. This isn't me. I'm not a lazy person, but there are just days it is so difficult to get up and get motivated to do ANYTHING.

So on Tuesday, I went back for my follow up appt. When the doctor walked in, he handed me a piece of paper that had a few big 'ol long fancy words on it: Duodenal Intraepithelial Lymphocytosis. Um, ok, what does that mean? He told me it's a big fancy word for Celiac Disease. My jaw dropped, I was in shock. I REALLY could NOT believe it. I think I asked him 3 or 4 times if he was sure. He was.

So he started to explain everything to me. But I already knew about it. Not a lot, I admit. But my friend, Todd was diagnosed with this about 5 years ago. So I have heard Todd and Pam talk about it on and off over the years. So thanks to them, I wasn't TOTALLY in the dark about this disease.

Once I left the office, I sat in my car, called Russ and started crying. I felt as though I was looking at a mountain that I have to climb with very little climbing gear.

I got online and read everything I could. I called Pam. Thank you Pam! I know I will be calling you and Todd a LOT over the coming months. God has blessed me for not having to go through this alone. Russ has been awesome. He has said we all can go gluten free until I grasp this all better.

It's not going to be easy. I feel like my head is spinning a little from all of the information I have learned in just 4 short days. And from all of the info I STILL have to learn. I am a little in Celiac overload, but I am handling it.

Right away I went to the store and bought as many things I could that said "Gluten-free". So far I've made chocolate chip cookies. (you can see the importance of them in my life!) They were really good! Russ said he even liked them better than the other kind I make. And last night I made pizza. Wow! It was awesome. Really. I can't wait to have left overs for lunch today.

We are going today to the health food store to see what they have. Pam told me Target has a great selection of gluten-free foods too. AND we are going to go buy a bread maker. If I ever want bread again, I have to make it.

I can do this! It's a challenge for me, but it will be a great thing when my stomach doesn't hurt and I finally have energy to be the "fun mom" I so badly want to be!

So this blog is going to be about my journey through this. I wanted to start this for my family more than anything. I know many have heard about Celiac disease, but don't know a lot about it. So I hope to use this to inform others, to gripe about my struggles and a place to put my successes.