One of the lucky ones…

I hear all too often that people are “blacklisted” or are the “black sheep” of their family or social circle.  It makes me sad that there are people out there that don’t want to take the time or effort to understand WHY someone may not have the option to not be gluten free.

I am one of the lucky ones.  My friends, and certainly my family, take time to understand why I now live the life I do.  There are lots of questions and it still may be hard to understand all that is involved with Celiac Disease.  I realized that today as I spent time with my “family away from family” as we went to the Glenwood Caverns Adventure Park.

I made my way to the restaurant on top of the hill quicker than the rest of the fam as I knew I would have lots of questions for the staff and would have to think a little more on what I would have to order.  Luckily, they were familiar with gluten free at the restaurant so it made me more comfortable.  The best part was that they had buns for the hamburgers and other sandwiches and they could leave the seasoning off the fries, which were by themselves gluten free.  Now, a note…I don’t know that there was a separate kitchen for my food nor do I believe that there were separate fryers for the fries.  Cross contamination was almost certain.

Well, this brought a question from my friend Brad.  He was kind enough to double check that my food was gluten free.  Bonus point for him!  But it brought up tons of questions which makes me super happy.  Questions on whether the fries were truly ok (probably not).  What happens when I’m, in my words, “glutened”?  (diarrhea, stomach cramps, bloating). Why does this happen?  (No absorption)  He had many more questions and, I hope, I could answer them so that it made sense.  Celiac Disease is a crazy weird disease.   The ride home, and the drive thru at McDonald’s, brought a whole new set of questions from  Brad and his wife, and one of my closest friends,  Jammie.  Fast food is not the best friend to a Celiac but when a kid wants a Happy Meal, it’s pretty hard to argue with that!

But it makes me realize that I’m super lucky.  That I have support from my family and my friends and that they WANT to understand not only Celiac Disease but want to keep me healthy and watch out for me as well.

Do you have a great support system?  Tell me about it.

Jammie and I on the Canyon Swing at the Adventure Park.

Holiday Eating

I write a weekly article for the Grand Junction Free Press and although I don’t plan on writing my blogs based on these articles, sometimes I will feel like they fit this blog.  This week I wrote on the upcoming holidays and tips on how to survive parties and dinners when you are gluten free.  Here it is, in it’s entirety:

 

At our September Gluten Free Grand Valley meeting we had an open forum.  This type of meeting is held once a quarter and we feel that this is important so we can share and learn from each other.  One of the items that came up was “I have most family and friend functions at my house because I know the food there will be safe but when/if someone invites me over, how do I handle that?”  

With the holidays right around the corner, I thought that this was a great time to tackle the issue of going to family, friend and work functions but maintaining a gluten free lifestyle.  There are many easy ways to do this! 

First, I’m a very open and honest person so if I am going to a friend or family’s place for a meal I am up front with them about being gluten free and asking if I can bring a main dish or side dish for the meal.  If they tell me they have everything covered I explain to them the importance of me being gluten free and they are usually ok with me bringing something for a dish so I will be safe in their home/workplace. 

Second, watch contamination.  If you see that a spoon has been in the pasta and then moves its way to the hummus, don’t use it.  If you’re not sure, just avoid the food item all together.

Third, ask to see labels of anything that is being cooked.  Sometimes people think that “wheat free” equals “gluten free” and they are not the same thing.  It’s better to ask and be safe! 

Fourth, pack it!  If you aren’t sure, put some crackers, protein bars, etc. into a little bag and take it with.  Sure, you might be asked some questions but it’s better than to accidently be “glutened”.  Besides, this way you will KNOW that the foods you have are safe for you since they came from your home.

Last, if you don’t want to take food along, eat before you go.  If you make the rounds enough, most people won’t even know that you aren’t eating unless it’s a family meal.  If that is the case, answer the questions about why you aren’t eating, change the topic and move on. 

If none of these seem like options you want to take on, then it might be best to keep hosting at your home.  It might be more work but feeling safe is worth it!

Just a Little Bit

I’ve been asked often “A little bit can’t hurt, can it?”  And at first, I thought it couldn’t but the truth is, it can.  It can hurt a lot.  Celiac Disease is an autoimmune disorder and the damage done can’t be undone with an epi pen so when I eat something with wheat, barley or rye it damages me.  It take months, maybe years, to undo the damage and sometimes the damage can’t be undone.  All of this depends on how long it took for diagnosis and then how long it takes to completely be gluten free.

A little bit can hurt a lot.

Nicole Kuhl, CCN, Director of Nutrition, and Health Coach at LifeSpan, says, “Another way to think about it would be to consider the effects of adding a couple drops of cyanide to a glass of water. A couple of tablespoons would be more toxic than a couple drops, but a couple of drops is still toxic.”

That bite of a muffin, taste of a pasta dish, sip of beer can have a huge impact on my well being.  That is why the FDA will be strongly enforcing the 20ppm limit for things labeled gluten free.  This law will go into affect next August and I will be happy to know my food is safe for me to eat.  Because the FDA believes that this is the best way to prevent me, and many others, from being accidently “glutened”, it MUST be important to not have it.

So next time someone says that they follow a gluten free diet, refrain from asking “don’t you want just a little?”  The truth is that they probably do but can’t.

 

 

Celiac Awareness Day

Tomorrow is Celiac Awareness Day so what does that mean?  I am pretty outspoken on the topic so those of you that know me well will probably say “yes, we’ve heard all of this before, Angela, you can stop it now” but for those of you that don’t hear me a  lot, listen up.

First, Celiac Disease is an autoimmune disease.  This means that I don’t puff up, start wheezing or have other allergy type reactions.  This means that my body is destroying itself, even if you can’t see it.  It means that when I eat that piece of bread my insides are attacking itself, the villi are dying and my body isn’t absorbing nutrients.  Repeated ingestion of gluten, even a little bit, can cause severe damage.  So please don’t tell me that “a little bit can’t hurt”.  It can.  A lot.  It can hurt just like a little peanut could cause death in a person with a peanut allergy, it’s just not that immediate.

Second, it’s more common than you think.  1 in every 133 people has Celiac Disease and most don’t know it.  Why?  Because most doctors are taught that not many people have it so it’s misdiagnosed as Irritable Bowl Syndrome (IBS) or Crohn’s Disease or some other intestinal disease.  A lot of doctors don’t know the first thing about Celiac Disease so they are hesitant to test for it and hesitant to tell someone how to live with it.  Honestly, I was diagnosed with Celiac Disease almost four years ago and my doctor told me that as long as I didn’t have symptoms, I could go on with life normally.  My doctor was WRONG and not having the information they needed could have caused me long term, maybe deathly, damage.  Was it their fault?  Probably not.  Either way, I ate “normally” for over two years before I had “symptoms” and probably caused more damage than was needed.

Third, if you have a direct family member with Celiac Disease, your chances go up to 1 in 5-22%.  That is a significant increase so if you have a family member with Celiac Disease, do  yourself a favor and get tested.

Fourth, Celiac Disease doesn’t discriminate.  No matter your sex, your color, or your age, you can have Celiac Disease.  We have people in our group, Gluten Free Grand Valley, that are in their 70’s and some that were diagnosed when they were just a few months old.

There is so much more but I’m going to stop there and let you do some reading.  If you want to know more facts on Celiac Disease, you can find more information on the National Foundation for Celiac Awareness website.  They are thorough and have great, up to date info for you to peruse.

One more thing…my website is pretty well decked out in a light green.  This green represents Celiac Disease Awareness.  You will see me wear a ribbon in this color in May and also tomorrow and will always see it on my blog.  I hope that you will join me in wearing a light shade of green tomorrow to represent this day and bring awareness to this disease.

 

The First Step is the Hardest

For quite some time I’ve had a few friends asking me “why aren’t you writing a blog?”  I’m sure I came up with lots of lame excuses that they saw through immediately.  The truth is that blogs can be hard to keep up, you always have to have topics to write on.  As time has gone by, I’ve realized that I probably have more than enough to write about so I’m taking the hardest step, the first step.

This blog is called “Miss Silly Yak” for important reasons.  I have Celiac Disease, an autoimmune disease where gluten (the protein found in wheat, barley and rye) causes my villi (the little finger like projections in my small intestine) to not absorb nutrients.  We all need nutrients to live so no absorption of nutrients = no longer living.  We found this out the hard way because my family almost lost my dad to this disease.  Soon after he was diagnosed and finding out that direct family members are very likely to have Celiac Disease, I got tested and tested positive.

But, back to the name “Miss Silly Yak”.  Celiac sounds very much like “Silly Yak” and that is a nickname that my friends Jammie and Shawna call me.  It’s a term of endearment and a name that I kind of enjoy as I like to have fun and it’s a great conversation starter.  It just somehow, I think, fits me.

I’m writing this blog for a few reasons.  While I do write a column for a local paper, there are sometimes things that come up that aren’t newspaper worthy or newspaper appropriate or I just feel like writing in the middle of the week because something is bothering my brain.  I also hope to educate people on what Celiac Disease is, what it’s like living with it and how I overcome obstacles that land in my way.  I hope that you will follow me, listen to what I have to say and have a few laughs.

Welcome to the first step:  Miss Silly Yak’s opening blog!