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......


Rhonda Lanphere said...

I missed out on reading your 11-10-11 blog.But got caught up today. Loved reading both. It lets me into your head a little, when it's a busy week for you, or we haven't had a chance to talk. I have been praying over you for at least a dozen months now, and for others that I know who have Celiac. I was so excited to hear that there is hope on the horizon, and got VERY excited for you, but now saddened for you that after all the questionaire, paper work & interview you don't get to proceed with being part of the trial study at this time. -ESPECIALLY AFTER YOUR ENCOUNTER AT WINGERS!! Uggghh!
So, I will continue to lift you in prayer and ask that you keep me posted on how things progress, or, digress for you when we talk! I love you my dear sweet Daughter, and would love nothing more than for you to be free of those consequences due to the "mishaps" that may happen because of someone else's oversight, naievity, or just shear neglect or stupidity.
I also look foreward to seeing you next month! I would like to take you to Comfort Food in Puyallup where Deb & I meet, and share a gluten free treat & have a coffee from the place next door-Anthem Coffee & Tea House. Love you Kimber.

Rhonda Lanphere said...
This comment has been removed by a blog administrator.
Amy Pepper said...

Fingers are still crossed for you that they will nix the criteria and allow you to enter the study. Love you babe. Will catch up soon.