Bad restaurants to Joy-- my mind works in crazy ways sometimes...

I recently had a terrible Gluten Free restaurant experience. It resulted in me being sick for over 3 weeks. I am still dealing with the repercussions of the auto-immune reaction. So, why do restaurants claim their food is "Gluten Free" or "Celiac Friendly" when they don't take the time to do it right? I have no idea, but I do know that it needs to stop. Immediately. Restaurants, some knowingly (more on that later), are poisoning people with various food intolerances, allergies, and diseases. So, what happens when restaurants do this. Well, in my current experience, nothing. I've called and emailed the company and I was informed that they KNEW the dish I ordered was recently outsourced to contain gluten. And what is going to happen to this company? Will they suffer for a whole month with the awful things I've experienced? Nope. Will they feel bad? Probably not. Will they apologize? Not so far.
And in response what do I want to do? Well, to put it plain and simple, I want revenge. I'm angry. Probably more angry that I've ever been before. They have put my health and (I hate to admit it, but it's true) my happiness on the line. I couldn't work for over a week. I had to opt out of hanging out with friends or going places because I was so sick. And now, in the most joyful season of the year, I'm struggling to find my joy, my "bubble," as some people call it. And I hate that. I know that this angry person is not in any way the person God has created me to be. Nor am I acting in a way that reflects the amazing gift we were given in Jesus. Does a few weeks of sickness really matter in the grand scheme of things. No. But does my attitude and my influence on those around me matter. Yeah, they do. How can I be a witness to the Light if I am so consumed by the pain in my gut.
But then I'm stuck. Because at times the pain is so great that it's all I can think about. I can't concentrate enough to read the Bible or pray because the brain fog has me so ADD I can barely get through a sentence. I have no answers or solutions to my current predicament. But above all else, I will be thankful. I've learned that even though things seem really crappy, I'm blessed beyond measure (and I don't mean by material things).
So today, I've got unquenchable heartburn, but I'm thankful for the Tums that is somehow managing to take the edge off a bit. I'm thankful for the love my wonderful husband has for me. I'm thankful for my bff Emilee who understands me better than I understand myself on most days. I'm thankful for the warmth I feel today despite the sub zero wind chills outside my door. I'm thankful that Jesus loves me so much that he became man in order to save me (and you). I'm thankful that I'm a part of a wonderful community in Confluence Church. I'm thankful for God's love of justice. I'm thankful for our family. I'm thankful for technology so that we can stay in better touch with our family. And that is just the tip of the iceberg of things I have to be thankful for this day.
I definitely have so many reasons to be joyful today-- and everyday for that matter. How about you? What are you thankful for today?

PS. Thanks for sticking with me through this spastic therapeutic blog post. :)

I am NOT Celiac Disease

Sometimes dealing with the fact that I have Celiac disease is hard for me. It's hard for me to be so blatantly different. It's hard for me to sit at a table while all of my friends share a meal together... and I eat a Larabar or Nut Thins and try to not stand out like a sore Celiac thumb. It's hard for me to not take on the persona of "Celiac Disease." I feel like that's who I've become. It's constantly on my mind. "Is this gluten free", "I wonder how they prepared this", "Is it safe to eat food in this kitchen that has gluten flying around it all the time", "How in the world can I go to dinner at a friend's house", "How can I be a good friend to this person when I am constantly trying to protect myself", "In how many different ways can this situation make me sick," etc. I find myself isolating myself because no else IS Celiac disease. Lately, the question that's been on my mind a lot is "who am I really within the realm of Celiac disease?" because, let's be honest... I'm not JUST Celiac disease. Yes, it does influence a lot of my decisions and account for a lot of fear and anxiety, but I'm done letting it steal my joy. I am NOT Celiac Disease. I have Celiac Disease. I am a Jesus loving wife, friend, teacher, coffee lover, reader, Facebook addict, cook, shopper, crafty when I want to be, woman who has to think very hard about the foods I am around and put into my body. I will not apologize for protecting myself from getting sick. I'll do my best to not let it steal my joy, but I will protect myself. My health is important. It's important to me, it's important to my husband, it's important for the children we want to have someday. It's not just the short term I'm protecting myself for. Yes, that is important too-- but not protecting myself now can lead to cancer and other major issues as I age. I'm afraid of that. It's scary. So, I do worry about protecting my body.
But, I know I need to stop letting it consume me. I need to stop letting "feeling different" upset me. I need to stop being sad for myself. I am NOT Celiac disease. I am me-- and that's good.

Sam

I get by with a little help from my friends...

Well, it's official. I'm out of survival mode and into coping mode... and I'm not doing so great with the coping. BUT, I have been beyond blessed by some amazing people in my life who are 100% with me and for me in this battle against food. First, my wonderfully caring husband. Anytime I'm feeling down about the things I've lost because of Celiac he is there, not only with a comforting word and a big hug, but also with the voice of reason that keeps me grounded in those times. He goes all out in trying to protect me, not only from that evil culprit--gluten-- but also from feeling abnormal. I also am feeling ultra blessed by my BFF, Emilee. She is always there to listen to me whine about my current mopey state and offer an encouraging word. She is there to be angry with me when I'm sick and be hopeful with me when I have a stretch of good days. Also, I am very blessed by a few little kiddos who don't have a clue what Celiac is, but they know that I have tummy troubles and are willing to brush their teeth, wash their hands and eat strange foods to keep my belly from hurting. I am also thankful for Rob's family and mine who are trying to learn how to protect me when I come to visit. I am very thankful for my aunt and uncle who have some experience with Celiac and used their grandson's birthday party as a chance to teach others in my family how to prepare food for me. I am thankful for our friend Neil who has been very sensitive to the demands of Celiac. He has offered to vacuum out his car so I don't get sick, make foods for a Christmas party gluten free so that I can partake too and worked with me to create alternatives of meals for me.

As much as this journey sucks sometimes, God has surrounded me with wonderful, supportive, uplifting and encouraging people. I've been pretty focused lately on feeling bad for myself and on the things I am going to miss out on in this upcoming holiday season... but today I realized that I have awesome people around me and I need to be more thankful for that. So, to all of you who have put up with my whining, tried foods you didn't really want to, made yourself uncomfortable in order to accommodate my needs, or any of the numerous other acts of kindness I experience on a daily basis... THANK YOU. I appreciate you and your support.

Phil. 1: 3-6
I thank my God every time I remember you. In all my prayers for all of you, I always pray with joy because of your partnership in the gospel from the first day until now, being confident of this, that he who began a good work in you will carry it on to completion until the day of Christ Jesus.

Love,
Sam

Book Review: The G-Free Diet

In this adventure that is Celiac Disease, it is IMPOSSIBLE to have too much information. Since the diagnosis, hubby and I have been sponges when it come to Celiac info (hubby more than me than me thanks to lots of crummy brain fog issues). Recently, I soaked up Elizabeth Hasselbeck's book, The G-Free Diet. Elizabeth Hasselbeck is a co-host on The View. I never would have known that she had Celiac without some of my co-workers in Kentucky telling me. She was sick for about 10 years before her diagnosis... ugh. I thought a year was terrible. She realized she had issues when she was on Survivor, eating a completely different diet than she ate here, she felt so much better. So she came back to the US and went on the hunt for what that terrible food was. She figured out for herself that it was gluten. It took her a very long time to get any doctor to test her for Celiac (Sidenote SoapBox: This is ridiculous!!! If a patient tells you "This is what is going on with my body, I seriously believe this is the issue, nothing you are doing is working, give me this test" and you say no, you are making a bad choice. People aren't all hypochondriacs. Some people listen to their bodies. Furthermore, if you don't know about Celiac and you have a patient who thinks she has Celiac... you BETTER learn about it real quick.) So anyways, EH has done a lot of this Celiac adventure on her own. She is one of the brave ones who still allows gluten containing foods in her house. That was a really interesting part for me to read. It gave me a little hope for once hubs and I have kids... maybe they can be normal. I just have to get me under control and get out of survival mode first. The G-Free Diet was a book full of seriously helpful tidbits of information. From what to do at dinner parties to lists and lists of products that do not contain gluten. I think I gained some confidence in my Celiac journey from reading her book. She has it down. She knows what she needs to do to protect herself and she does it. One of my favorite parts was when she was talking about how she deals with dinner parties or weddings where it would be an insult to not eat the food. Her and her husband have an agreement that she would just sort of push the food around her plate until he was about half done or a little more with his plate. Then they would swiftly trade plates. No one would have any idea that she didn't eat the food in front of her! Brilliant!
So when it comes down to it, this book was very helpful! If you are just beginning your G-Free diet, I totally recommend this book. If you have been on it a while but still have some questions, I totally recommend this book. If you are an old pro but what some fresh G-Free ideas, I totally recommend this book. If you have friends or family with Celiac disease, I totally recommend this book.
Enjoy!

New Beginnings...

Well, a lot has happened since my last post. So, I eliminated all grains for 2 and a half or 3 weeks... I kinda forget which. :) I was still not feeling great but I was feeling better. I went to the GI. He was great. Really helpful. He answered all my questions (oh yeah, there were a lot of them!) and he recommended me to a dietitian. I'm pretty excited to go see the dietitian. I'm hoping for some new good ideas and some professional help with this gluten free thing. This past week I began reintroducing my most common grains. Quinoa first, then rice, last corn. All fine... but I was still getting sick. Then it dawned on me. I referred to my handy dandy food journal to confirm the culprit. Lactose. I've been lactose sensitive for a long time; drinking only lactose free milk but still eating cheese, ice cream, etc.. No longer. I am full blown lactose intolerant. It's no fun but it is what it is. So, this too I will embrace in order to make myself a healthier person. My body continues to heal... hopefully... and I continue to strive to be 100% gluten free. The doc did a Celiac blood panel so I'll see how I'm doing with that any day now when I get the results. Hopefully I'm not failing... Gluten is sneaky. It sticks to manufacturing equipment and gets in my otherwise GF foods. Flour can travel through the stinking air!! This is rough. It takes a whole lot of trusting that companies are following safe manufacturing techniques and labeling the products correctly. We shouldn't have to take leaps of faith like that when it comes to things that could totally destroy our bodies. It is time for the FDA to set strict regulations and to make sure that companies are following them. The health of thousands and thousands of people with food allergies and intolerances are on the line. -- End rant. :)

Research and Ramblings

Does all the "research" out there ever make you crazy. I've spent most of my day today reading web page after web page full of contradictions and unclear results. All you med students out there (that I'm sure are not even reading this because who has time to read a blog in med school?) seriously consider doing some hard core, legit celiac research. We need you. We need answers.

Anyways, great news! Yesterday was a good day! I felt as good as I have in probably two weeks yesterday. Praise God for that relief. I was able to get some good things done around the house, plus a little relaxation at the pool. I'm finding that throwing myself into little projects is a welcome distraction. I realized the other day that since we moved the rest of the house is decorated and looking nice but our bedroom was still pretty blah in the decorations department. So, I weighed my options. I could either spend 60-80 bucks buying art for the walls or I could go to Hobby Lobby and create my own for about 20 bucks. I'm all for Design on a Dime so I went with it. I think it turned out pretty cool. It's not on the walls yet because by the time I got home from coffee with good friends it was too late to be banging on the walls. (We have little kids who live in the apartment above us) It looks great sitting on my living room floor though! HA!
Yesterday I also made some more homemade potato chips to have on hand. They are safe from foods that I know are bad for me (and hopefully foods I don't know are bad for me) and they are super tasty. I also decided to get a little adventurous and make some homemade ketchup. Hubby said it's the best ketchup he's ever had. I'm ok with that. :)
Today I got Elizabeth Hasselbeck's book "The G Free Diet: A Gluten-Free Survival Guide" from the library. I'll let you know my thoughts as I read.

That's all for now.

Sam

PS Pics are of the bedroom decs as they are now. On the living room floor but laid out as they will go on the walls.

New Experiment

So, I realize more and more everyday how much of a blessing it is that God has me at home right now. For the past few days it has been because I've been sick. Today, it is because I need to research and learn more and more about this disease. Apparently, it isn't enough to just go gluten free. I'm beginning to feel more and more that I have other food intolerances secondary to gluten. Anyone else out there? So, I was doing some research last night and I learned about a test called an ALCAT test? Anyone have any info on that? Let me know. I want to do some serious research on this one. Also, if you have any awesome websites you use to get good info let me know! I've got two books set to arrive in the mail today or tomorrow (fingers crossed) but I need some good reading until then.

Anyways, I'm feeling a bit better today. Bananas and Pedialyte are a blessing I tell ya! I'm making hubs lunch today. So far all I've got is homemade potato chips. Going without corn too has ruined the menu I had initially planned. (Corn is something that has been giving me issues) I better go figure it out. He'll be home soon! :)

Welcome!

Ok, here goes. I was diagnosed with Celiac Disease in April of 09. Since then I have gone completely gluten free. It all started off great. I immediately felt better. I had energy I hadn't had in months. I had my "bubble" back, as I was told. But a month or so later I started feeling bad again. And now, 4 months later I am back to feeling the way I was feeling pre-diagnosis. Why? I'm still completely gluten free. I have called company after company trying to find the one thing my husband and I aren't catching, but nothing is coming up to still contain gluten. So, today marks day one of my new challenge. I will not eat one bite of food outside of my house for one month to see what happens. I will not eat at friends houses. I will not eat at restaurants. I will not even eat food that I take places to consume. I will eat every single meal in my own home. Now, if I get a job this will be difficult and the plan may need to be altered. But for now. That is the plan. I will cook. I will be a clean freak. I will not have one bit of gluten in my home. I may even go so far as to make people wipe their hands off with a Wet One at the door. Is that overboard? I just can't take the pain, mind fog, exhaustion and other issues anymore. Also, I have started a food journal. I'm writing down everything I eat and my reactions after eating in hopes of catching the culprit. Does anyone out there have any other suggestions? What do you do when you are having troubles without any clue of the source? What do you do when you have a reaction? What makes you feel better?
Sam :)