Starting the Journey

There’s a reason why Celiacs aren’t always in for a social event.  Think about it, every social event has food: employee lunches, dinner with friends, birthday parties, and picnics. They all have the same element: eating. When that goes away, what do you do? All of a sudden you are either the outcast and people don’t invite you out anymore, or the world revolves around you and your disease. Both of these give you attention that you don’t want or need at most times.  I mean, I live with Celiac Disease, and it’s one of my biggest platforms, but I don’t always want to talk about me, me, me.  (Que the Toby Keith song).

Here are some tips for those that are starting on their gluten free journey, to make social events much more positive:

  1. Don’t be afraid. Don’t be afraid to bring your own food. Don’t be afraid to speak up when someone says “let’s go to restaurant xyz” if you know you can’t eat there. I do this a lot and while it does attract attention, it’s fair that you get to eat too!  Also, don’t be afraid to ask your hostess what they are serving.  I did this for a birthday party I was going to last night, got the menu as well as the name of the BBQ sauce they were using, etc.  I was able to eat it all and if I hadn’t asked, I wouldn’t have known!
  2. Be strong. Going gluten free isn’t easy, for sure not in the beginning. I would tell you it is, but you’d be disappointed. It gets easier. Shopping gets easier, eating out gets easier and, hopefully, your friends and family will become sensitive to your needs. You will need strength to not bend and eat that pizza that you used to love. It will pay off if you stand strong  because your body will thank you for it as it heals from the damage that gluten has caused.  Always remember that!
  3. Ask for help.  If you don’t know where to shop, what to shop for or what brands are better than the next, just ask.  Find a group online or a local gluten free group and ask people their opinions.  As people that are GF, we have plenty of them!  In Grand Junction, we have an online Facebook group called Gluten Free Grand Valley Gluten Free Grand Valley but have people from all over so if you need support, just join our group.  We love to help!  Don’t want to ask in a public forum?  Email me.  I’m more than happy to help someone via email.
  4. Take the attention. Hopefully that means that people care about you and want to do what’s best for you. If they ask what restaurant you want to go to it means they want to hang out with you and keep you safe. I know that’s why my friends ask and I’m so grateful for their care. If it’s negative attention, take it as an opportunity to educate them on why it’s so important. Sometimes people just don’t understand and when they are told, it changes their opinions.  And with people saying that GF is just a fad diet, it’s a great time to tell them that not all people use it that way.
  5. Wear it proud.  Yes, being a Celiac isn’t easy and isn’t always fun but we are different and have a lot to offer the communities we live in.  We can show people that having an autoimmune disease doesn’t mean that we can’t still LIVE.  I love it when I’m introduced to a little girl with Celiac and get to tell her all of the things I do even though I have this strange, food related disease with a funky name.  I wear the Celiac ribbon a lot and get asked what it’s for.  Educate the public!

Things get easier as you get rolling and as more people understand, your life will get easier as well.

A Helping Hand

Celiac Disease hasn’t been the most fun thing.  I mean, you eat something you shouldn’t or accidentally get cross contamination and end up in the bathroom for the rest of the day or curled up on your bed in pain.  Doesn’t sound like a great way to spend an afternoon.

Through my work with Gluten Free Grand Valley, writing for the newspaper and being vocal on social media, I have gained attention, hopefully as an advocate for those with Celiac Disease.  Because of this, I get lots of questions, lots of emails and phone calls and people who are friends or friends of friends stopping me at gatherings to ask questions because they have been diagnosed or because someone they know has been.

A couple of these things happened this week.  First, I found out that a friend’s sister was diagnosed a few months ago.  We happened to be at a birthday party and I was having a glass of wine and she started asking me questions about being gluten free.  She then proceeded to tell me that she had been diagnosed Celiac.  We, of course, spent the rest of the evening talking about food, restaurants and all that goes along with Celiac Disease…over a gluten free pizza, I might add.

The second was someone who is gluten free is moving to Grand Junction and contacted me about Gluten Free Grand Valley.  I directed her to the Facebook page but we started a dialog on how scary it is to move to a new city, to not know what grocery stores to go to or what restaurants are safe.  We plan on having coffee when she gets here so I can help her.

Sometimes being given the burden of a disease can be just that, a burden.  But I look at it like this:  God put me on this Earth for a reason and gave me Celiac Disease for a reason.  I believe it’s to help people.  That’s not being said with bravado or boasting, it’s a fact.  I hope that I can help as many people as possible whether it’s simply giving them a cookie recipe or if it’s guiding them through the first year of eating gluten free.  I hope that I can always lend a helping hand.

Don’t forget to follow me on Facebook and Twitter for news, fun items and more on being gluten free.  You can also follow me on Pinterest for recipes, quotes and information on Celiac Disease.

Just take a moment

Life has been super hectic lately.  Between working 40 hours a week, starting a part time business with Arbonne, writing for the GJ Free Press, Gluten Free Grand Valley, Lions Club and spending time with family and friends along with other activities I’m sure I’ve forgotten…life has been crazy.  That’s why, when my friend Shawna asked if I would take a day trip to Ouray with her, I said yes.

I have a tendency to, even if there is nothing to do at home, find something to do.  I’m always connected via some form of technology and do have an issue with putting the phone down because what might happen on Facebook if I don’t check it every five minutes?  So, getting out of the house, out of town, was perfect.

It’s not that we had some sort of  “National Lampoons” type of trip (ok, there were men in speedos, queso for breakfast and yaks) but it was a great, relaxing day with one of my best friends, relaxation in the hot springs and laughter.  It was just what I needed.

Today, as I sat at work, I was reminded that we need to take those moments, break away from everything that is beckoning to us, all that says “I need to be done” and just throw caution to the wind.  All that needs to be done will still be there when we return…and if we don’t, it won’t matter anyway!

Never take it for granted

Last night we had our monthly meeting of Gluten Free Grand Valley, the gluten free support group in Grand Junction, CO.  I am pretty proud of this group as I am one of the co-founders and we have great people that attend as well as a large group on Facebook.

Our meeting was a 2014 kickoff and we (the board) wanted to get an idea of what people are looking to get out of our meetings.  The feedback was great but the part that I think really tickled people was the food.  I had been to the Denver Gluten Free Food Fair in August, was able to get a hold of some of the vendors and they, very kindly, sent samples to me.

People that don’t have food issues may be thinking “what’s the big deal?”  It is a big deal.  You may think that if tomorrow you couldn’t have bread, you wouldn’t miss it.  That is, until you wanted to have a PB&J and you were going to have to eat it either without bread or, in the case of most gluten free breads, nearly a piece of cardboard.  One of the vendors that sent samples was Kinnickinnick.  They make many types of foods from bread/cake mixes to cookies to loaves of bread.  They sent bread.  I was skeptical since most gluten free bread is either good for only toasting, for Thanksgiving Day stuffing or great for sawdust.  Yes, it’s that good.  Not this bread.  Soft, chewy, almost REAL bread!  I may have been in heaven for a while, I’m not sure.

Seems silly, right?  Bread?  Big deal.  You’re right, it IS a big deal.  It’s a big deal because growing up I could have a grilled cheese sandwich.  I haven’t had one in almost two years.  I couldn’t just make a PB&J because cardboard bread doesn’t have the right texture or taste.  I couldn’t have bread with my soup (yes, I like to dip bread in soup, so sue me).  Anything that you can’t have because your body will hate you for it is something you crave, something you desire and something that you SHOULD be able to have.

Those of you who don’t have food issues, whose bodies will accept anything you put into it, never take it for granted.  Consider it a blessing that you don’t have to worry about getting sick from foods. Enjoy them and enjoy them often.

Also, if you want to find out more about me and want to get more posts, you can follow me on Facebook or on Twitter by following @MissSillyYak.

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.

 

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