The Salad is Gluten Free

Today I went to a luncheon at a local restaurant.  As a group, we had checked to see if they would have gluten free items for us at lunch.  We were told (twice, by the way) that there would be a gluten free option.  When I arrived, I spoke to the owner and asked about gluten free options and the answer was “The salad is gluten free”.

Now, if I had a dime for every time I heard that, I would be pretty well off.  Lettuce is gluten free.  What a concept.  I bet next you’ll be telling me that carrots are.

The problem was that it was so non chalant, like I didn’t matter as a consumer.  I explained to him that two of our membership had inquired so that we could make sure anyone that needed to be gluten free would be taken care of.  He responded that there were gluten free menu items but only the lettuce salad would be gluten free so I asked about the dressing, which was.

My issues were as follows:  1.  If you tell a group that there will be gluten free options, please stick by that.  I realize that salad is easy but it’s not the lunch I pay for.  2.  Don’t be non chalant about it.  This is something real, not something that I choose to do, and would much rather eat like a normal person.

All in all, this isn’t the first time I’ve had a run in with this place and will try to go there as little as possible.

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Getting Glutened

For those of you who aren’t Celiac, gluten intolerant or have a wheat allergy, you are probably saying “what is glutened”?

It’s a term that means that we were, essentially, poisoned.  We accidently ingested something with gluten and have exited the building.  If you are anything like me, it leaves you curled up in a ball with pain like someone has taken your intestines and just yanked on them.  A lot.  Hard.  You can’t stand up straight and it’s PAINFUL.

I hadn’t been glutened, at least to this degree, for a long time but it happened on New Year’s Eve.  Yup, way to bring in the new year.  Glutened.  Anyway, before I went to the party where I was to spend the rest of the evening, I stopped to have a beer with two of my friends:  Don and Craig.

Now, I hang out with those two guys a lot.  We talk politics, sports and anything else.  So, when I walked in, Craig orders himself a Bud Light and me an Angry Orchard.  Gotta love friends who know what you drink!  The server brings the beer and typically I take a sniff because Angry Orchard has a sweet smell to it.  This was the one time I didn’t do that.  I was deep in conversation or distracted  or something but all I know is that I took a sip.  ONE sip.  It wasn’t Angry Orchard.  It was Bud Light.

Two thoughts ran through my head:  1.  Oh crap.  2.  How did I used to drink this stuff?

I put the beer down, said “This is NOT Angry Orchard”.  Craig got a hold of the server, told her that it wasn’t the drink I ordered and she brought me my correct drink.  Don recognized that it was an issue and I was grateful for an opportunity to tell him what happens when I’m glutened.  I should have spoken to the server and/or manager but it was so busy and…I missed an opportunity.  An opportunity to educate, to help someone realize that it wasn’t just a simple mistake.

I got sick.  It was more gradual than it had been in the past.  Usually it takes about 15 minutes to an hour and then, BAM!, you won’t see me for a while.  This time it took a few hours, I kept getting more and more bloated and ended up going home late that night.  I slept all night but the next day I just sat on the couch.  I was tired, lethargic and didn’t want to do anything.

I guess the moral of the story is that when things like this happen, when I KNOW that a mistake has been made, to educate.  To use the opportunity.

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The Great Cheerio Debate

Earlier this year Cheerios came out saying that they would start making their products gluten free and the whole gluten free community was excited…until they came out.  We found out that their testing methods weren’t the best, that batches were tested together, etc.  If you want to read all about it check out my Facebook page or to go the Gluten Free Watchdog‘s website.  They are on it.

This evening I saw that Fox News had reported on it and had posted it on their Facebook page.  I wanted to know what people were saying about it but wish I hadn’t.  I started reading comments and was first angry, then hurt.  People are on there making fun of people with “made up” gluten allergies, saying it’s a fad that everyone is now jumping on, etc., etc.  “Give me the extra gluten” and more comments like that.  Even making fun of a little girl that has a service dog that detects gluten and keeps her safe (yes, it’s a real thing and I think it’s cool).

I think the thing that irritates me the most are the people who have NO idea what it is like to live in my shoes and others with Celiac Disease as well as gluten intolerance and wheat allergies.  Celiac isn’t funny.  Celiac almost cost my dad his life.  Celiac disease made me super sick for years and I should have just eaten my meals in the bathroom.  That is the honest truth.  It pisses me off that people make fun of something that they no NOTHING about.

Maybe I shouldn’t get so worked up but this is my life and this is something that is important to me.  I work hard to bring awareness to this disease and then a bunch of idiots comment on Facebook and I feel like I’ve been set back and all of my work is for nothing.

All this over a box of cereal.

This is what I want to say to all of them:

You’re Ruining Everything

Most of my friends really get why I’m gluten free.  They know that eating anything with gluten can make me sick and sick is not where I want to be.  They really don’t want me to be there either, I’m a hot mess when I ingest gluten.  I start cramping up and then my tummy hates me and I end up either in the bathroom for long periods of time (I will let your imagination go and it probably would be accurate) or curled up on my bed because the stomach cramps are so horrible.  Women, just take the “that time of the month” cramps and ramp it up.  Men, imagine getting kicked hard in the you know where…and I’m pretty sure you know the pain I go through.

I still have people in my life that, from statements made, think I’m overreacting.  The other day I posted a story about there being a lot of gluten free restaurants in Italy on my personal Facebook profile.  I had a friend say “you people are ruining everything”.  Ruining everything?  How?  By being excited that I can go out and eat?

I wasn’t sure if this person was joking or not, it’s hard to tell via social media sometimes, so I made light of it and said that I wasn’t looking for a constitutional amendment and it was each restaurants right to have a gluten free menu or not.

I guess I’m still puzzled as to why “us people” are ruining things.  Anyone that isn’t gluten free can still get beer and get it at a fraction of what I pay for beer.  Anyone that isn’t gluten free can go anywhere and eat whatever they please.  I guess I don’t get it.  I’ve never said that I am going to make every restaurant have a separate kitchen for gluten free because it’s my right.  (It isn’t, don’t take that wrong).  And, even if a restaurant doesn’t have anything I can eat, I will still go there with my friends because I’m a social person.

Yes, I do get excited when I read that Europe is very gluten friendly and that, someday, when I get to go there I will be able to eat and eat well.  Better bring my stretchy pants!  And I do get excited when a new item hits the shelves and I can have egg rolls again.

The thing is that people really don’t know what they miss…until they can’t have it anymore.

I would challenge my friends that thing that gluten free is easy to go one week gluten free.  Read the labels, eliminate all wheat, barley and rye from your diet and see how “easy” it is…I’m sure you’d be more than surprised.

Tired

I’ve been tired for about a month.  Exhausted tired.  The kind where you could fall asleep anywhere, anytime and if you just closed your eyes, you’d be out.  Going to bed at 8:30pm and you’ve fought to stay awake that long.

I can check WebMD and so much more to self diagnose (I’m every doctor’s nightmare, really) but I did the right thing and finally went to the doc.  We ran a CBC with an iron test, checked my thyroid and did a metabolic panel.  All came back normal.  Normal…sigh…

So then I go to things like “Are my meds gluten free?”  “Am I accidently getting glutened?”  “Is it the weather?”  And all kinds of other questions.

It has been a crazy year with the changes at work, taking on more with Lions, writing more and so much more.  I know for the last six months I haven’t been sleeping well because my neighbors weren’t the quietest people.  They are moved out so I’m sleeping better.

Or maybe this is my body’s way of saying “slow down, take it easy”.  I’ve been trying to listen, to go to bed even if it’s early, to step back from things if I have to.  To say “no”.  Our bodies tell us when it’s time to take a rest, to fix ourselves and to just take it easy.

I think it’s that time.

The Struggle is Real

I’ve been putting off writing on this topic for a while.  I mean, who wants to talk about depression, being sad and struggling?  No one.  When someone on the street, in the store, in your social group says “How are you?”  they really don’t want to know for the most part.  What would they do if you said “Actually, I’m going through a rough patch, am struggling with depression and don’t know how to pull myself out of it.”  Eyes would get huge and they would probably stumble through a “I’m sorry you’re going through that” and find the nearest exit.  And who can blame them?

At the beginning of the year, there were a lot of changes in my life.  We had major change at work that resulted in a lot of stress at work and with that came a bit of depression.  I started researching the Celiac-Depression connection at that time.  Then quit researching and from time to time have gone back to the research.  For some reason, now is the time to write about it.

Because I promised myself, and my readers, transparency I’m going to write things super honestly in this starting with the fact that I’ve struggled with depression on and off throughout most of my life.  Most people who know me, if you ask them to describe me, will say that I’m an outgoing and happy person.  Which I am most of the time but there are times, sometimes weeks where I struggle to even pretend that things are ok.  In fact, there are few friends, when I’m like that, that can pull me out of my shell where I’m hiding.

In my research I found some interesting things.  The first is that there is a strong connection between Celiac Disease and Depression.  People without Celiac do get depressed but there was a higher incidence with those with the disease.  In fact, a 1998 study showed that there was a 31% higher chance of an adolescent with Celiac having depression, compared to 7% in an adolescent without Celiac. (Carta, Hardoy, Usai, Carpinello, and Angst, 2003).  A survey of 177 women (yes, I know that’s a small pool) with Celiac showed that 37% of them met the diagnosis of depression.  (Arigo, Anskis, and Smyth, 2011).  Now that is a HUGE number!  And yes, women with Celiac are more likely than men with Celiac to be diagnosed with depression.  I am assuming that this is because more women than men have the disease.

So WHY?  Why the connection?  There are a few ideas on why.  Some say that it’s a B vitamin deficiency, that because of the malabsorption of this vitamin, there is a link to depression.  Others say that the malabsorption of tryptophan (which is needed for production of serotonin and helps with moods) is a cause.  Another reason could be that, even though you’ve gone gluten free, you are still getting “glutened” and that is a cause for depression.

I think one of the biggest reasons is the gluten free diet all together.  All of  sudden you can’t eat the things you love, when you go out you are “that person” asking for a gluten free menu and modifications to your meal.  When you go to a friend’s house you have to ask about EVERYTHING on the table or be left out or bring your own food which leads to odd conversations.  Nothing is normal anymore because all social events revolve around food.  The birthday cake in your office is off-limits and you have to explain why even a little piece could hurt you.  All of a sudden you feel like an outcast…and it’s painful sometimes.

So sometimes the easiest thing is to hole yourself up in your house and not go out because you know that you’re safe in your own kitchen.

This has been a long, emotional journey to get me to write this.  I honestly sit here writing and crying and thinking about a couple people I’ve been talking to the last couple weeks who are struggling with the isolation and my heart hurts for them.  My heart breaks all of the people who deal with this because I understand how hard it can be and I hate that we have to live like this but the struggle is real, folks.  And you’re not the only ones going through this.  Just KNOW you are not alone.

If you are struggling with depression, get help.  Find someone to talk to, have friends who can sense that something is going on and that you need someone to talk to or a shoulder to cry on.  Have people in your life that you know you can go to.  If it’s advanced, PLEASE seek medical help.  While the world is a tough one, there is SO much good in it.  Let’s find the good…

My hope and prayer in writing these blogs is to help people.  To see the good in the world despite the fact that we have to eat differently.  To become stronger despite the fact that we are different.  Together we can make a difference it the world, I believe it.

By the way, there is a lot more research out there on the Celiac-Depression connection.  I’d be happy to share it with you if you are wanting to know more.

Staying on the Positive Side

Let’s be honest, sometimes life gets us down.  This is a story of getting down and then getting over it.

I have a pretty positive outlook on having Celiac Disease, having to eat gluten free and not getting to eat things like egg rolls and Chinese food in Chinese restaurants.  About once a year I get PF Chang’s and satisfy my Chinese craving for a bit.  It’s not as much as I used to eat it but it helps.  Eating gluten free isn’t really that bad either.  It could be worse, I could be allergic to dairy, avocados, and almonds.  Things that I eat EVERY day.  But it’s just gluten, right?

Well, last Monday was my “feeling sorry for myself” day.  I had been at JUCO (the Junior College World Series) which happens every May in Grand Junction.  It’s basically a week of sunshine, baseball and more sunshine.  I spend as much time attending games and chillin’.  Memorial Day I got to the stadium at 11 and stayed there all day.  I had brought my usual snacks to tide me over and had plans to jet at 6 to grab a bite to eat before the 7:30pm game.  Plans changed and I ended up taking photos of the team the Grand Junction Lions Club hosted (every year we host one of the teams) and not going to eat.

Mind you, this was my fault…I will admit that.

I had, earlier in the day, started wishing that I could go to the concession stand, pick whatever I wanted and just EAT.  Not have play 20 questions with the gal behind the counter and then hope that she was right.  It’s like playing Russian Roulette, really.  I was tired of being different, of not being able to grab food and go, to have to leave the stadium to get something to eat and then come back, try to find a parking spot and…it was too much.  I’m guessing the sun and heat had something to do with this breakdown as well.

But I had a pity party.  I almost started crying and had to compose myself several times.  Sometimes being gluten free really sucks.  In fact, I found this and posted it to Facebook:

Don't you ever just want to be normal?

Don’t you ever just want to be normal?

I had friends comment on the picture from “Be strong!” to “I have those days” to “I wouldn’t eat normal for the world, I know how it hurts me”.  The support was so good.

I ended up getting fries.  They told me that they were gluten free.  I hope they were right…

So, I had my moment, ate my fries, watched the game, went home, went to bed and the next day I was fine.  My outlook was better.  Sometimes you just have to have a moment and move on.  The sun always comes up tomorrow, I’ve been told…and that is a true statement.

The moral of the story is twofold:

1.  Have a pity party, get mad or sad or whatever and then MOVE ON.  It’s life and the way it is whether it’s Celiac or a dairy allergy or something else.  It could always be worse.

2.  Stay positive.  Negative energy only brings you and everyone else around you down.  The more negativity, the less people will want to be around you and, when you really need support, it won’t be there.

Gluten free isn’t always the most glamorous or the most fun but it’s the most healthy for me.  It could be gluten free or death and I choose gluten free.

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Living FREE

We live in a world that is gluten free, peanut free, dairy free, etc to accommodate for the differing allergies, intolerances and autoimmune diseases that we see in the world.  Gluten free has become a buzz word and everyone thinks that if it doesn’t have wheat, it’s safe for consumption.

Not the case.

Last August the FDA created a mandate that said that anything labeled gluten free must be 20ppm or less of gluten.  While I considered it a win, a step for those of us that need to be gluten free, it’s not enough.

Here is how I see it:  if something was labeled peanut free but still had 20ppm or less of peanut dust in it, it wouldn’t be labeled peanut free, right?  I mean, if someone ate something that was labeled this way and had a peanut allergy it would still cause a reaction.  Probably death.

So, why is it good enough for something that is labeled “gluten free” to have SOME gluten in it?  It’s not.

It’s time for gluten free to mean that.  FREE of gluten.  Zero, zilch, nada.  A little bit can still hurt someone who is Celiac (or has a wheat allergy or intolerance) and for a Celiac, just 1/64th of a teaspoon can cause damage.  Damage that could take months to heal.

So Celiacs, let’s stand together and show these companies, and the FDA, that gluten free must be FREE of that that makes us sick!

Rant over.

How do you do it?

This week we decided, at work, to start rotating and each Friday we take a little “brunch break” at work.  Not only does this give us a little break in the morning but each one of us gets to make something and share the recipe with the rest of the bunch.  One of my co workers was searching recipes and kept asking “can you have this?” and “can you have that?”  Of course when it comes to biscuits, pancakes and so many other breakfast foods, they are off limits for me.  The poor girl was trying so hard and I kept having to say no.

She then said “I don’t know how you do it, I would starve.”  Interestingly enough, when I asked friends what things they heard the most when you’ve explained your gluten free diet, the most common were “how do you do it?” and “you can’t eat anything.”

I will start with the question.  You do it because you have to.  Believe me, this isn’t something that I’d choose.  I do miss eating pancakes at a restaurant, biscuits and gravy on a buffet and egg rolls.  Oh, how I miss egg rolls.  But it’s something that is necessary for me to live.  To not live in pain.  To remain healthy.  You read labels, all of them, because wheat is hidden in so much.

Then to “you can’t eat anything.”  Well, if you mean you can’t get a Big Mac from McDonald’s, then yes.  Not that I’d eat that if I could…nasty.  You can eat, you just have to do research and, yes, it does take time and effort.  But I eat, I eat a lot.  You just learn what you can and can’t have.  You learn to shop around the outside of the grocery store, which is typically the healthiest choice anyway.  I eat lots of brown rice, quinoa, veggies and chicken.  I get creative.  And yet, I don’t look all skin and bones.

I feel bad for my co workers and anyone else that tries to cook for me.  Some of my friends have become experts in reading labels, in asking and, when all else fails, in sending me pictures of the labels of foods I may eat at their homes.  It isn’t the easiest thing in the world but it’s done because it’s needed.  And that’s how I do it…the short version!

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The Journey

It all began with my dad.  It was June of 2009 and dad’s health had been going downhill for quite some time.  He didn’t have energy, was looking pale and, as a good stubborn German man, refused to go to the doctor and had been refusing for months.  I will never forget the Sunday that we had done a trip through the orchards and when mom and dad dropped me off, as usual, I invited them up to my condo which is on the second story.  Dad flat out said “no” because he didn’t have the energy.  I had gone over there a few days later and dad could hardly walk across the living room without stopping to gather his energy so he could keep going.  He had turned into an old, old man in front of our eyes.  My brother emailed me, asking if he needed to fly in from Washington state.  I told him no…but I honestly didn’t think dad was going to make it.  Later, he would tell us that he wasn’t sure he was going to live much longer.

A couple of weeks later I received a phone call while I was at work.  It was my mom and my dad had driven himself to the ER from his part time job at a golf course.  They had found a hernia and would have to do surgery.  When they did the pre surgery blood tests, he came back severely anemic and ordered an upper and lower GI to find out where they internal bleeding was.  Otherwise, why would you have such severe anemia?  The gastroenterologist did the tests and told mom that they biopsied a portion of his upper GI but he was pretty sure it was Celiac Disease.

What?

My mom is super resourceful so started doing research so when the test came back positive for Celiac Disease, she was ready to rock n roll.  Everything got put into a box and I was the proud recipient of TONS of food.  Mom started baking and cooking gluten free, dad was mad at the world.  Here he was, in his 60’s.  He was already a diabetic and had a thyroid condition…why this too?  No bread, no pasta, no beer…Father’s Day was right around the corner so I did my due diligence as his daughter and found gluten free beer.  It was no Bud Light but it worked!

We would later find out that all of these autoimmune diseases work hand in hand and when you have one, you are very likely to have another.

Mom’s research took her to find that if you have a relative with Celiac Disease, you have a 1 in 22 chance of having the disease too. A few months later I took a blood test and it  came back positive for Celiac Disease.  I spoke with my doctor and she told me that as long as I didn’t have the symptoms, to keep on living my life the way I was.  (BTW, this is NOT correct.  If you are diagnosed with Celiac Disease you must IMMEDIATELY start eating gluten free).

As time went on, I starting having symptoms.  I had always been anemic but now I was having intestinal issues.  I would eat and then head straight to the bathroom because it went through me so fast.  I would have severe cramps and would go home and just curl up on my couch, praying they would go away.  I was bloated and had no energy.

I finally decided it was time to go gluten free.  Should be easy, right?  My mom and dad had just gone through it and I was sure it would be easier for me.

I went through the purging process as well, taking food out of my pantry and donating it or giving to it friends.  I then headed to the grocery store, Vitamin Cottage, actually.  I will NEVER forget standing in the pasta aisle, looking at the mac and cheese and wondering which box of $5 mac and cheese was actually any good.  Which $6 pasta was any good.  I was overwhelmed and, before I could start crying, I bought a box of mac and cheese and went home.  It was overwhelming and I cried all the way home.  The mac and cheese sucked.  It was expensive so I ate it all and cried more.

The next day I put on my big girl panties and went to City Market.  I bought a few things because a girl’s gotta eat.  I asked mom for help.  I tried things and figured out which ones weren’t good, although I’d eat it anyway because GF food is EXPENSIVE.  Most breads were only good for toast, buns were hard, eating out was horrible and still can be bad.  It was FRUSTRATING.

But I’ve lived and I’ve figured out what is good, what isn’t, where is safe to eat, where make my tummy hurt and in this, I’ve found friends who are going through the same thing.  It’s so much easier when you have people who know exactly what you are going through.

And that’s my journey, so far.  I know there is more to do, this is my platform and there are many more people who feel alone in this world, or who haven’t been diagnosed with Celiac although they’ve been diagnosed with everything under the sun.  And the true cause is Celiac Disease.

I ask that if you know someone who has Celiac Disease and feels alone in the world, share this blog.  If you have a question for me, ask.  I’m here to help, I’m going on this journey for a reason.

Me and Dad at a Broncos vs. Bears game

Me and Dad at a Broncos vs. Bears game