Monday, November 21, 2011

One small step for man.....

Ok, so maybe what I am about to post about isn't as big as putting a man on the moon, but it is a breakthrough that I will sit in anticipation for until it becomes the real deal.

A couple of weeks ago, I noticed an advertisement on Facebook (of all places to click on an ad), and it sparked my interest. I didn't know this until a couple of days ago, but depending on key words that you put into your profile updates, certain ads will pop up that relate or cater to those words. For example, the other I put the word God in my update, and right after all the ads were centered around Christian-type links. Interesting little site you are, Facebook.

I must have typed something about gluten free or Celiac in one of my posts, because I saw this ad about Gluten Team. What is Gluten Team? So, I clicked. Yes I took a risk, but it turned out to be a good one.

The link took me to a site where it talked about a research study that is being conducted in my area on a new treatment medication that is being tested for Celiac patients. You could fill out a little pre-screen survey to see if you qualified to be in the study....of course I did it.

I didn't expect that anyone would really contact me after entering my name, email and phone number. If anything, I expected spam.

I also didn't expect the phone call I got the very next morning from Dana, the research nurse who read my pre-screen survey. She said based on my answers I was pre-qualified to be a participant in the study, I would have to come Salt Lake for the appointments, and it would last for about 22 weeks (about 5 months). Tell me more, Dana.
I asked her about 30 questions (give or take a few) to find out more about this up and coming treatment drug that will be used to prevent reactions to gluten on a cellular level in the tissues of your small intestine.

What? Prevent reactions? How is this possible?
She explained to me how the drug works, how long they have been studying the drug and testing it on human patients, that it doesn't get absorbed into the bloodstream, and that up to this point the studies have proven that the drug works.

It's working. A little ray of hope just flashed before my eyes as I sat there listening to her on the phone. A hope that I could have peace of mind knowing that if I went out to a restaurant and for some accidental reason my food was contaminated with gluten, there would be no worry of a 2 week aftermath that often leaves me curled up in a ball in the middle of the night or making constant, running trips to the ladies room (uh-hum).
There is hope.

The research group (Alba) is to the point in the research where they know that Larazotide Acetate works in preventing gluten from entering the cells when food is digested through the system, they are now researching which dosage of the pill works most effectively in preventing the reactions from occurring.

I wanted in. I was ready and willing to test this puppy out, knowing that this might be the next step in living reaction free and not worrying so much about the long term effects each gluten encounter might be wreaking on my body.
So I scheduled an appointment and a week later I was sitting at the doctor's office of the research group, filling out consent forms, reading, reading and reading some more, asking more questions, and handing over my blood work from 4 years ago that showed I had tested positive for Celiac.

As I was finishing a little electronic questionnaire for the food journal that I was going to be filling out every meal I ate and any reactions I felt I was having while in the study, Dana popped into the room and asked me if I had a copy of my biopsy results.....I did, but I had to call my doc's office to get them. Lucky I know the office receptionist, and she faxed them right over.
A couple of minutes later, Dana said that the report for my biopsy showed a negative result...that there was no damage showing up on the villi of my intestinal wall (you totally wanted to know all that), and that she was going to go talk to the doctor to see if I could still be a part of the treatment study.

At first I didn't really understand what she was saying. My blood panel showed positive, but my biopsy showed nothing.
After she came back and said that the medical assistant could be done with the prepping for the study, I was a little sad. I don't know why, maybe because part of me was excited to be a part of something new, something up and coming, something that would help me and so many other people out there suffering from the effects of Celiac disease who actually wanted to live a gluten free lifestyle but just not worry about cross contamination.

As we talked, I realized that I wasn't alone in this desire to be part of the study by couldn't because I didn't have both of the criteria to be eligible.
Dana explained that in order to be eligible for the study, you had to provide both a positive blood panel and sample from biopsy for Celiac/damage.
What we ended up figuring out was that because I had the blood work done in October of 2007 and didn't have the biopsy until November, my body had already started healing itself and showed no signs of damage caused by gluten intolerance. Thus, the mixed results.
There are actually a lot of people wanting to be part of the study who this has happened to, because part of the pre-screening questions ask if you are currently on a gluten free diet and have been for the past 12 months.....Well, I am, and so it makes sense that of course I wouldn't have as much or any damage compared to a person who may think they are eating all gluten free but maybe just not paying as much attention or are sneaking in gluten foods here and there, causing damage here and there. She let me know that because they were having a more difficult time finding enough patients to complete the study than originally intended, they are trying to get the research group to cut that criteria out of the qualifying conditions. If they do, I am back in the game.

For now, I am waiting, continuing to hope that some time in the next couple of years, I will start seeing ads for Lorazatide Acetate for Celiac patients, and it will be an affordable option for people like me.
What does it mean? Before every meal I can take a pill, and if I just so happen to have a gluten encounter, the medication will prevent the gluten from bonding to the cells in my small intestine and therefore no adverse reaction taking place. Pure bliss for Celiacs and gluten intolerant peeps like me.

One small step......

Thursday, November 10, 2011

When you don't have something nice to say

Recently Chas and I made two visits to restaurants where they sell wings.

Wing Nutz is one of our favorite places to go for wings, mainly because they have several different flavor options, but mostly my reason is because they are good about making sure you know which sauces are gluten free and which ones aren't. If there is a question, they always refer to the trusty GF menu. The manager knows us well enough now that she knows what we like to drink, how we like our appetizer, and which sauce we like on our wings. She pays attention well.

Wing Nutz is one of those awesome places that offers rewards for dining there, something a couple who is trying to save some pennies while still having a date night can appreciate. The rewards are linked to your email so every once in a while they will send you a survey that you can complete to let them know how your experience was. I made a comment on the bottom that we had noticed the last couple of times we had been there that we didn't end up getting our appetizer until our meal came's not really that big of a deal, but when you are overly hungry, it can be a little frustrating (speaking for myself sine I am the more grumpy one when my blood sugar drops below 50) when you notice they are not so busy that you just figure they are behind or something.

That same day the manager of the Ogden location sent us an Email personally apologizing for what happened. She had actually talked to our server later that day after she got in and he told her what happened. She knew that this had happened before (she has given us many, many free drinks and buffalo chips) and suggested to the servers that they wait a few extra minutes before putting in the wing order, so that the appetizers wouldn't keep coming out the same time as the meal.

To me, that is awesome customer service. To personally be the one to Email a customer back, instead of some corporate customer service rep. who sits behind a desk and doesn't really know what's going on in the restaurant where customers are being served, is huge to me. Maybe it's because I have been on the other end of being a customer, serving patrons and making sure they are the happiest they can possibly be while enjoy a nice meal. Maybe it's because for the past four years I have been overly sensitive to dining out since so much of my physical well being depends on the food I consume.

Which leads me to my next example, which unfortunately didn't end with the same results as our lovely manger at Wing Nutz.

Last Saturday before our gig with Cheatwood, I talked Chas into going to Winger's for a wing dinner (yes I crave wings a lot, I don't know why). We have eaten there before and they advertise a gluten free menu, so I had felt safe in the past.
If there was one word I could use to explain the experience I had eating at Winger's, I would combine the words horrifying, frustrating, and infuriating...perhaps to make a new word horrifrustinfuriating.
It was obvious towards the end of the ordeal that our waitress had no idea what it meant for a meal to be gluten free. It was also obvious, to me anyway, that the manager had no idea what it meant to provide decent customer service.
The dialogue between myself and the server at the beginning went something like this:

me: I wanted to get the boneless wing dinner but I need to know if that is something that I can get gluten free?

server: Oh yeah, we can do that, we have a separate fryer that we do the gluten free wings in, I will let them know.

me: Awesome, I will take that then with the original sauce."

(meals come out about 10 minutes later)

I proceed to cut up one of the chicken wings and start eating the midst of eating mostly fries because they looked super tasty and they were easier to eat.
I take another bite, just before Chas looks over and with a question in his voice, proceeds to tell me that he has gotten the boneless wings before and he is pretty sure that they looked exactly the same as the wings I was in the process of eating.
I stop eating and wait for our waitress to come by to ask her if it is in fact gluten free.

me: Hey I just wanted to make sure that these wings are coated with the same cornstarch breading as the bone-in wings, can you find out and make sure?

She leaves for about 10 minutes and I have to get her attention to remind her that I was waiting for an answer from her.

server: Oh yeah, I talked to the cooks and they said that those do have wheat in them, but they are made gluten free??? (question marks inserted to reflect the tone of her voice, apparent that she had no idea what she was talking about)

It pretty much went downhill from there. I proceeded to tell her that either a meal is gluten free with no wheat in it, or it is made with wheat/white flour and it is gluten saturated which would mean detrimental things for my body for the next 1-2 weeks.
She leaves with a deer in the headlight look in her eyes. About five minutes later she comes back with the manger, good ol Phil.
There were three main reasons why I didn't get along with Phil, at ALL.
1. Every time I tried to talk to him about what happened, he interrupted me and wouldn't even let me finish my sentence.
2. He asked me what would happen to me since I was exposed, and proceeded to let me spend the next several minutes explaining to him what happens to people with differing levels of severity of Celiac once they are exposed to even a tiny amount of gluten. Then, as to try and sound like he knows what he is doing in the Winger's kitchen, he says that his wife deals with the same issues.....well sir, then why did you ask me what happens, if you apparently already knew since your wife has it???
3. During the time I was trying to explain to him the conversation between myself and the server, it was brought up that my gluten chicken fingers were fried in the gluten free fryer...I tried to explain to him that I couldn't eat anything else that he was offering to have them make for me (trying to at least give us a free meal, which was the only nice thing he did throughout the conversation) because anything they fried that was gluten free in that fryer would now be cross-contaminated. He proceeded to say the following question (insert mocking tone here): "Would you like me to hold your hand and take you back in to the kitchen and show you how we do things back there?"

I was pretty much done and ready to leave after that. Not only was I going to experience pain, bloating and a skin rash for the next several days, but I was mocked and left feeling like no one in that restaurant knew anything about cooking a gluten free meal. So after good ol' Phil told us that he was giving us our meals free, we stood up and walked out.

I decided that after everything that happened, I wanted to write to corporate. I located the online "send us your feedback" website and proceeded to write a very lengthy but very non-aggravated letter about how I feel that the people working for their restaurant/corporation should be better educated on the importance of making sure that if you don't know if a meal is gluten free, don't just make it up and say yes. I also found out who the founder of Winger's is, and sent him the letter as well. The website says that customers should get a response in 1-2 business days.....that was 4 days ago. That's not a very long time, per se, but when you feel like you are trying to defend yourself and the other gluten free customers that may decide to visit their restaurant in the future, it seems too long.

In the back of my mind, I can't help thinking that had it been something positive, they would have most likely Emailed me back that same day thanking me for my words of praise and how glad they were that I enjoyed my visit to their restaurant.
Maybe they are really super busy right now, or maybe they are researching the incident with Mr. Phil the manger....who knows. But I also couldn't help but compare their lack of response to the quick response of the manager from Wing Nutz.... And decide that we probably won't be going back to Winger's ever again.

On a positive note, a research company is very close to coming out with a medication that helps prevent reactions of gluten exposure in people who have Celiac and gluten intolerance....More on that in another post.

Wednesday, November 2, 2011

A monthly to-do

I didn't intend for it to take me a month to post about the current happenings with the Burks couple, but for some reason it just worked out that way.

Maybe it was because of my frequent lack of desire lately to continue a blog. I guess I feel like I use other ways on a daily basis to get updates and update others who care to read my FB status on what's going on in life. Therefore, this feeling leads me away from the blog and to other things.

But one thing I have been spending time on and a topic I have been thinking a lot about recently is from a study I have been doing on Esther. The topic of restraint.

During the time that Esther was being prepared to meet the king who would decide if he liked her enough to make her queen, she never took more or asked or expected more than what was suggested of her. She presented herself in such a way that showed more of who she was and the beauty she already possessed without tons of fancy gold jewelry, fake lips and a skin tight dress.
She was the Esther that God had beautifully and wonderfully created her to be. And it was that genuine real-ness that no doubt and more than likely led the kind to "love her so much that he crowned her queen over Vashti".

There is a lot of fake in this world. It is easy for people, women in particular, to get caught up in the who and what and how much and what does it look like on me of appearance and social gossip. It is easy to find a way to blend in and feel accepted, just like everyone else is doing.
I don't think it is wrong to want to be accepted, there is a level of healthiness in wanting to feel comfortable around the people that you like and are friends with. But for me, I don't want to feel I am compromising who I am to short myself of being the person that God has so uniquely and purposefully created me to be. In a place where it is so easy to act like you are just like everyone else, I sense that my heart is striving to find a way to stand out and sh0w those around me that I AM different. But it can be a complicated tight walk to show enough level of restraint to say how you feel and what you believe, and do it in such a way that is not making others feel you are comparing yourself against them. Or that they are wrong and you are right. It's not about that. Beth Moore asked the question at a conference I went to recently, "Do you want to be right, or do you want to have a relationship?" That was a powerful question for me as I seek to find a way to witness to those around me who I feel have been caught up in a way of life that I cannot pretend is the same as what I have grown to believe.

And so as I continue this journey of learning what it means to show Godly restraint, in many aspects of my life, I am finding that He is showing me other awesome things in His word along the way.