Learning Self-Care to Enjoy a Better Life

When I first heard the term “self-care” many years ago, it didn’t quite compute.  If you’re like me, when I was growing up, I was taught to take care of others before my own needs.  It is something that is completely engrained in me and is second nature after more than 50 years of being alive.  I’ve always worked hard to follow that in my own life, sometimes to my own detriment.  I’ve always believed, wrongfully so, that my own needs are always secondary and if I am taking care of myself, I am being selfish.  Just like everything else in life, this area requires balance.  That balance has been and often, still is difficult for me to find.  Yet, self-care is so vitally important to our well-being.  I mean, if you don’t take care of yourself, how can you possibly take care of anyone else?

Anyone who has ever flown has sat through the instructions from the flight attendants prior to take off.  One of the most important instructions they always give is about the oxygen masks that will pop down from the overhead compartment in case of loss of cabin pressure.  What is it they always, without fail instruct the passengers to do?  Put the mask on YOURSELF before helping any small children or incapacitated person near you.  That is because if you lose consciousness, you are incapable of coming to someone else’s aid.  In other words, if you don’t take care of yourself first, not only will you suffer, but so will those around you.  Self-care is important to everyone, but especially those of us living with autoimmune disorders and chronic health issues.  Our bodies require more self-care than most in order to be able to function at any given time.

So, what does self-care look like?  I imagine it can mean many different things to many different people.  Here are some things I’ve learned about self-care along my own journey.

1.      Learn and abide by your limitations

That doesn’t mean, let your limitations keep you from living your life as fully as you can or to use your limitations as excuses to keep from doing things.  It just means that we need to listen to our bodies.  No one else knows your body like you do.  You know what activities require extra energy from you and what activities wear you down.  In my own case, I have learned that I cannot plan multiple activities for the same day or even just one all-day activity.  My body rebels against me when I expect too much from it.  I need to honor that by planning accordingly and resting when necessary.  Yep, it means that often I have to say no to activities and events that I would LOVE to take part in.  But sometimes self-care simply means saying no.  It is ok to say no.  It is not the end of the world.  And it doesn’t mean that you always have to say no.  If I say no to things that I know will prove to be too much for my body to handle, that opens up opportunities for me to say yes to other things I may not have been able to do before.

2.      Get plenty of rest

All of us need rest.  Those of us with chronic illness or autoimmune disorders require more than normal.  Honor that.  Yes, we need to get plenty of sleep at night.  Each person’s needs may be different on how much their body actually requires versus someone else’s needs.  Sleep is not the only form of resting.  Down time, just kicking back with no activities and taking time to relax for a while helps to recharge your body, as well.  My favorite way to relax is to grab a cup of hot tea and a good book and just lounge and read.  I have so many people tell me that they don’t have time to do sit and read.  I understand that.  The busyness of life gets to us all at times.  This is an area of your life where you need to make time.  Carve out in your schedule a little bit of “me” time to sit and relax and rest your body and mind for a little while. 

3.      Hydration & healthy eating habits

Again, this is a vital part of life.  I have a bad habit of drinking one soda per day.  I love the carbonation.  But even one per day is so unhealthy for my body.  And, I’ve begun to notice different things about my body when I drink soda instead of water.  I get more muscle cramps, my joints feel swollen and achy, I end up feeling sluggish and fatigued throughout the day.  When I am drinking plenty of water, I have found that I have more energy, I feel more focused throughout the day and the muscle cramps and swollen and achy joints are no longer an issue.  Making healthy choices for our meals is exceedingly important as well.  I love the summer and all of the fresh fruits, veggies and herbs I can purchase at the local farmer’s market!  When I was first diagnosed, my first response as I was learning to live gluten free was to purchase and consume the gluten free counterparts to what I used to enjoy prior to my Celiac diagnosis.  Sadly, most of that was crap!  The more processed the foods are, the less good they do for your body.  The more you can stick with less processed, more naturally gluten free foods, the better off you will be.  You will feel more energetic and be healthier overall.

4.      Spiritual health

My current personal Bible study is,  "Beautiful Brokenness "

I know this can take many different forms for many different people.  We are, at our core, spiritual beings.  For me, being a part of a church family helps me find my purpose, my joy.  I work as part of the worship and service team most Sundays and I love it!  It has grown me so much as a person to be a part of this great team and to be an active member of this church family.  My time on Sundays as well as the small group Bible study that I help facilitate really help me rejuvenate for each week.  The times that I have to miss for one reason or another, I can feel it down deep in my soul and I feel emptier and miss it so much.  Being plugged in to this church family feeds my spirit in ways nothing else I have found ever has.  Taking time during the week for my own personal prayer time and Bible study just adds to that fullness.  I have dear friends who take care of their spiritual health through yoga and meditation.  Others I know actually feed their spiritual beings through their art.  Whatever form it may take, setting aside time to care for your spiritual self is also very important

5.      Make time to do activities you enjoy

One of my favorite passions and hobbies, photography. 

This photo is two things that relax me, crocheting and snuggling with my kitties. 

This past year has not been a good one for me and my family.  While there have been some very good and enjoyable things about the year, there have been a lot of hardships and some big, painful losses that have really disrupted our world.  For most of the year, the activities that have always given me pleasure have taken a backseat and been set aside.  Some of these activities help keep me centered.  Since I was a young girl I have found release through art and writing.  Even if the only person who will ever see my drawings or paintings or read what I’ve written is me, it is still a way for me to get in touch with my innermost being.  I also enjoy photography.  We have to make time for the things we enjoy as well as those responsibilities we all have.  We aren’t meant to go through life just doing a job.  Yes, we need to work in order to make money to be able to pay for the necessities and extras, but we need to find hobbies that we enjoy, too.

6.       Take time for something silly and fun once in a while

Me with my cousins, Amy & Lori Ann taking some time for fun and just being together a couple of days after our grandma's funeral. 

At our last meeting of the Western Iowa Celiac & Gluten Free Living group, I passed out some little gifts.  Inside each pouch was a small notebook, a pen, a trinket reminding each person to never give up and a small bottle of blowing bubbles.  Yes, the bubbles may seem silly, but it symbolizes to me the simple joys we tend to forget about and set aside as adults.  I, personally, have fun blowing bubbles.  It requires very little from you and you can’t help but laugh and smile while you are doing it.  I’ve found that doing something fun helps ease away the tension and stresses of life.

Is anyone wondering what the small notebooks and pens in the pouches were for?  They were for each person to write down ideas in their own lives for how they can practice self-care.  So, now that you know what self-care looks like to me, tell me how you practice self-care in your own life.

Until next week, be well and be happy.

Looking Back One Last Time

Here we are on the last day of 2018 - the last few hours before the new year rings in.  I've been considering a lot this past week just what my last blog post of the year would be about.  I don't know about you, but this year has brought some major changes in my life, at work, at home.  Many things stretching me to the point where I thought I may break, yet, I didn't.  I overcame many obstacles and, not on my own.  

The start of this year at work really stretched me close to my breaking point.  In truth, I came really close to throwing in the towel.  But I didn't.  Not because I'm stubborn, though, trust me, I am that (I ain't a ginger for nothing!).  No, if it had just been my own stubbornness, I would have walked away from a job and a company that I've worked at for the past 2 plus decades.  Thankfully, my boss, the HR VP and my co-workers talked me off the ledge.  They showed me support, encouragement and they believed in me and my ability to get through the tough times.  If not for all of them, I would have walked away from a company I love working for.  Their belief in me - even through the meltdowns, and, there WERE meltdowns - brought me through the worst of the stressful times that everyone in the company experienced through the last year of major changes.  I didn't think I could handle the pressure the job was putting on me, that I was putting on myself.  My mental and physical health suffered for it and I know that I'm not the only one who did.  Even when I felt like I was failing, the people I work with believed in me, put up with me and showed me unwavering support.  You never know what kind of a team you truly are a part of until you go through a seemingly impossible situation together.  We weathered through together and not a one of us gave up!  Not on each other, not on the job, not on the company.  And it is beginning to pay off and things are calming down.  I'm beyond grateful to still be with this company that has been so good to me for the last 22 1/2 years!  And it is all because I work with an amazing group of women who wouldn't let me give up, sometimes smacking me over the head with hard truths that I needed to hear.

 What does all of that have to do with Celiac you may ask?  Well, if you are like me, stress can trigger some nasty Celiac symptoms - without the added problem of being glutened!  Even in all of my worst moments of stress and self-doubt, NOT ONCE did I have a full-blown panic attack!!  This is HUGE for me!  And it was NOT because of me!  It was because of an awesome support system I have in the people I work with.  They even love being guinea pigs when I try new gluten free recipes!  LOL  We all need support and understanding in every aspect of our lives.  Because our jobs take up a large portion of our day to day lives, having a great team of co-workers can make such a huge difference!  And, if you can manage the work stress, that will help with mental and physical exhaustion that can complicate your Celiac symptoms.

I also turned 50 in April.  Wow.  I can't believe I am now actually old enough for my very own AARP membership - I have the card, I can prove it!  I thought that turning 50 would depress me, but it is funny - I actually feel more invigorated and alive than I have in a very long time, maybe ever!  January 15th will mark 5 years since my diagnosis and going gluten free.  This past week notwithstanding (I had a migraine that started Christmas Eve and then morphed into a sinus infection later in the week - still getting over it at this time), I actually feel the healthiest I have ever been in my life - overall.  I now not only know what it means to actually feel good, but I have more good days than not good days.

I have grown in so many ways this year and have experienced things I never thought possible.  Mid year the local Celiac Support Group I attend lost it's leader and sponsor and my friend, Susie and I stepped in to keep the group going.  It hasn't been easy and we've had our ups and downs, but we've endured and have kept it going!  We've met and spoken with so many people who have Celiac or have family or friends living with it.  People who were amazed that they weren't alone!  People who wanted to learn more and to be a part of a group of people who are in this journey together.  I think that is what I am most proud of in 2018.  Neither Susie nor I are natural born leaders.  But we both saw the need and felt the urgency to keep this group together and to be able to expand and broaden it's reach to be able to help more people.  We've had some members move away and welcomed new faces as well as those who've been there right along with us.  It has been the most rewarding experience I can remember in a very long time.  

May God bless and keep you as we say farewell to 2018 and greet 2019.  Happy New Year!

Food is Medicine

If you are living with Celiac Disease or other health issues that require you to be gluten free then I know you've felt that pinch on the pocketbook.  It is true that the majority of gluten free foods carry a higher price tag than their gluten full counterparts.  I hear and read complaints about this price differential a lot!  When I was first diagnosed I know I complained, as well.  I mean, I'm sure we can all identify with this cartoon someone posted in a Celiac Support Group I am in on Facebook earlier today.

Have you ever stopped to consider just exactly WHY the prices of gluten free products are higher than other products? 

Now, don't get me wrong.  I HATE living with Celiac Disease.  I wouldn't wish this autoimmune disease on anyone.  However, let's look at this logically, shall we?  There is currently no medical treatment for Celiac Disease.  None.  Zip.  Zero.  The absolute ONLY treatment option for those of us with Celiac Disease is a 100% gluten free life.  This isn't just about diet, but EVERY aspect of our lives from our beauty items, bath soaps, shampoos, toothpaste, household cleaners, and the list goes on and on and on.  Right?!  That can be extremely daunting and discouraging.  It can be extremely isolating at times and means there is a whole lot out there that we can't enjoy or events we cannot participate in.  BUT - on the flip side, our food is our medicine!  How about that?! 

You don't have to rely on medications that break the bank and come with a plethora of possible horrible side effects!  YOU are in the driver's seat.  YOU get to decide what foods to eat, whether to chance eating out or to just say no.  Big Pharma isn't calling the shots - YOU are!  Compared to the price of pharmaceuticals, eating gluten free is cheap!!  Seriously!  I'll pay extra at the grocery store any day to be able to be in control of my health instead of Big Pharma!

One of my favorite places to shop is our local Farmer's Market.  The local fresh produce there is delicious and naturally gluten free.  Yep, you know it.  Fresh produce is more expensive than many manufactured foods.  BUT - they are all natural with no additives or preservatives.  They contain zero MSG.  They are healthy for almost EVERYONE (unless you have a food allergy) not just those of us living gluten free.  And, yes, farmer's market produce is generally higher priced than your supermarket produce.  BUT - the produce is fresher and more often than not, tastes better, too!

No matter how careful we are, we all know that we can still accidentally come into contact with gluten.  It's everywhere so it is impossible to avoid cross contamination 100% of the time, unfortunately.  Yes, our food is more expensive.  Yes, I do believe there are some food manufacturers out there just to make a buck off of the gluten free fad and they don't take our needs seriously.  But I also believe that those people and businesses don't truly care about their customers or about doing gluten free right.  There are so many gluten free food producers out there who ARE doing it right because they care about their clientele and want to provide the best and safest possible products for them.  We have several here in the Midwest who are doing it right and taking every step necessary to ensure the safety and quality of their products.

Did you know that it costs more to produce gluten free products than regular products?  Because it takes more ingredients to make up for the lack of gluten in these products, the cost is higher to the manufacturer than it would be if they were using ingredients containing gluten.  Add to that safety standards it takes to manufacture gluten free products in a safe environment.  Gluten free food producers also have to comply with strict FDA requirements and pay for testing to ensure that their products are safe for our consumption.  Our disease puts us in a highly specialized market.  Since the cost to the manufacturer is higher, the price we pay at the supermarket is higher, as well. 

There are many gluten free products and foods that I use on a regular basis.  Many of them are from local producers, as I feel very strongly in supporting the local producers who work so hard to provide safe, delicious food for their customers.  Some local producers I buy from regularly are Chebe which is manufactured in Spirit Lake, Iowa, Mama Stoens from Owatonna, Minnesota and Better For You Bakery located in Jefferson, Iowa.  Each of these manufacturers produce gluten free baking mixes that are easy to prepare and tasty. 

Better For You Bakery French Bread mix

I've been dreading the writing of this part of my post.  Dreading it because it makes me sad every time I think about it.  Another amazing local gluten free food producer we have in Sioux City, Iowa is the 100% gluten free, nut free, fish free establishment, Gud n Free.  This restaurant was opened by owners Mike and Brenda Orlando not quite two years ago as a safe haven for those of us who have to eat gluten free.  This is the only restaurant in the area like this. 

Owner, Mike Orlando waits on customers this past Friday the 13th

I am so sad to say they will soon be closing their doors.  April 28, 2018 will be their last day in business.  While they've had many patrons come from many other states to enjoy the wonderful gluten free comfort food they provide, unfortunately, they did not receive enough support from the local Celiac and gluten free community.  This continues to boggle my mind.  Many people would prefer taking their chances on cross contamination at other restaurants that offer a few gluten free options on their otherwise gluten filled menus.  We've had such a gift in Gud n Free and it breaks my heart to see them go.  

Gud n Free Chicken Parm Sandwich with Steak Fries and their original marinara

Gud n Free's Bacon Chicken Ranch pizza with a side of cheese balls

Mike, Brenda and their employees, Eric and Susie, have all put their heart and soul into making this restaurant an oasis for us.  There are so many things I'm going to miss when the restaurant closes, including their famous cheese balls, pork loin sandwiches, house burger and their mouth watering marinara. 

Gud n Free Pork Loin sandwich and fries

Gud n Free World famous (no?  They should be!) cheeseballs

Gud n Free vegetarian Mushroom Falafel

But the biggest things I will miss when Gud n Free closes it's doors is having that safe place where I can go and NOTHING on the menu is off limits to me.  It's a place I can go where I don't have to whip out my laundry list of questions and concerns that I have to go through at every other restaurant that I ever eat at.  I don't have to worry if they are going to understand my needs, because they do - firsthand!  These four people have become very special to this blogger and I feel nothing but friendship and kinship for them.  If you are in the Sioux City area between now and April 28th - stop in to Gud n Free for an excellent meal!  Tell them you heard about their wonderful establishment through their friend, Siouxland Celiac.

This blogger with my mama at Gud n Free on April 13th

I TOLD you that I'm going to miss these cheeseballs!

Also - for those of you in the Sioux City, Iowa area, the April Siouxland Celiac Support Group meeting (no relation to this blogger) will be meeting this coming Wednesday night, April 18th from 5:30 pm - 6:30 pm at Gud n Free.  Tessa, the Gordon Drive Hy-Vee Dietitian who normally facilitates our meetings was not able to plan anything for us in April, so Gud n Free's own, Susie Joens and your's truly are hosting the meeting this month.  We hope to see you there!

Fall Harvest Time

#tealpumpkinproject

Hi everyone!  Boy, have I got a lot to share with you today.  The first thing I want to talk about is FARE's (Food Allergy Research & Education) Teal Pumpkin Project.  With Halloween fast approaching, this is an important topic to talk about.  Let me give you a little history about it first.

The Teal Pumpkin Project was started in 2014 by FARE to help raise awareness of food allergies and encourage people to provide safe items to hand out to Trick or Treaters at Halloween.  There are many other non-food items that you can pass out so that children with food allergies may safely participate in this yearly holiday tradition.  I was surprised this week to learn that this important campaign has only been around for 3 years.  It will be easy for me to remember, though, since my Celiac diagnosis occurred in 2014.  To learn much more about the #tealpumpkinproject and how to participate and let parents and kids know that you are participating click here.  This is such a wonderful idea as more and more children are being diagnosed with some sort of food allergy, Celiac Disease and more that are affected directly by the food they eat.  FARE is doing some amazing research and working hard to raise awareness.  As someone living with Celiac Disease, I know firsthand how isolating it can be to not be able to participate in an event, holiday or tradition simply because of the dangers of certain foods to me.  And I'm an adult!  Think about how much more isolating that is to a child.

I also have something to share with you that I am beyond excited about!!!  A friend of mine named Kallie Smirnov is starting a YouTube channel that is dedicated to spreading Celiac Disease Awareness, sharing fun and easy gluten free recipes as well as other important tips about how to navigate this gluten free life when you have Celiac Disease or Non-Celiac Gluten Sensitivity or Intolerance.  She is working on raising funds to finance this project and help get the word out through a gofundme campaign.  For more information about what Kallie is working on click here.  She is hoping to have her first video available in time for Halloween.  As a matter of fact, she actually began filming today for her first shows!  Check out her gofundme campaign and subscribe now to her Life Minus Gluten YouTube channel so you don't miss a single posting!  I've gotten to know Kallie over the past year and am so inspired by her positive, upbeat attitude and I love her sense of humor and the way she deals with everything life throws at her.  I'm very proud to support and promote what she is working on because I believe this is something that will be helpful to so many people.  

Siouxland Celiac Support Group

Next, I just HAVE to share with you about our most recent Siouxland Celiac Support Group meeting that took place this past week (Oct. 19th) at the Hamilton Blvd Hy-Vee Foodstore.  Hy-Vee Dietitian, Corrinna Lenort welcomed back Tina Meseck from Better For You Bakery who did a cupcake and sugar cookie demonstration for us as well as gave us tips (and her recipe which I shared in a recent blog post here) for making the perfect buttercream frosting!  

 Tina Meseck & Corrinna Lenort

 Tina preparing her special buttercream frosting

Tina brought un-decorated gluten free sugar cookies and chocolate cupcakes for us to decorate.  Everyone had a lot of fun with this - especially eating the finished products!!  Corrinna spoke to us about the Teal Pumpkin Project and about how we can participate.  For anyone in the Sioux City, Iowa area who is interested in attending the monthly Siouxland Celiac Support Group meetings, please contact Corrinna at 1610Dietitian1@hy-vee.com and she will be happy to give you more information about the group.  The next meeting will be Thursday, November 9, 2017 from 5:30 pm - 6:30 pm.  Location to be announced.  We will be celebrating "Friendsgiving" with a gluten free potluck.  Whether newly diagnosed, living with Celiac Disease or gluten intolerance or sensitivity or a family member of someone who is gluten free due to health reasons, this group is perfect for you!  We hope to see you there!!  Here are a few photos from this last meeting to show you how much fun and how interactive this group is.

Happy Harvest and Halloween!

Un-decorated GF sugar cookie & GF chocolate cupcake by BFYB

Corrinna decorating her cookie

More decorating fun <3

My finished cookie and cupcake - and, yes, they were AWESOME!

My mom's finished cookie & cupcake

**The Siouxland Celiac Support Group is separate from and not affiliated with this Siouxland Celiac blog.  It is sponsored and facilitated by the Sioux City Hamilton Blvd Hy-Vee Dietitian.

Celiac Awareness Day 2017

Me (Siouxland Celiac) and my biggest supporter, my mom (Edie "Smilee" Orris)

Today is National Celiac Awareness Day.  Yes, I know what you're thinking - Isn't May Celiac Awareness Month?  Yes, yes it is.  But today, September 13th is National Celiac Awareness Day.  I can't help but reflect on the journey that has brought me to this point, the people and friendships I've gained along the way and how far I've come from pre-diagnosis until now.

It was just before summer of 2011 that I experienced what would be the first of too many anaphylactic attacks.  I know that not everyone is familiar with what an anaphylactic attack is.  Here is a pictorial example both pre attack and post attack.

Waiting for my hubby to get off work so we could have date night.

Approximately 20 minutes after the "pre attack" picture was taken

I'm not sure what exactly caused that attack.  I thought I'd gotten bitten by some kind of bug.  My face got swollen and my voice got choked off so that I couldn't speak above a forced whisper.  My husband, instead of taking me to dinner, took me to Urgent Care where they gave me a shot of prednisone and sent me home with a prescription for more prednisone to take orally over the next few days.  Then began the hives.  Horrible, large, angry pink welts that appeared over just about every inch of my body.  For 24/7 for over 2 1/2 years, I would be afflicted with these nasty, itchy blots.  My health deteriorated, brain fog set in, I was spiraling downward in depression, feeling like I was losing my mind.  I began to gain weight without diet changes, had major issues trying to focus and concentrate.  I began having increasingly alarming panic attacks at work, driving in the car, in the grocery store, etc.  I couldn't sleep.  I didn't know it at the time, but I came very close to losing my job at this point in my life because my lack of concentration caused me to make rookie mistakes and my attitude ranged from irrationally irritable to completely apathetic.  I bounced back and forth between my regular doctor, an allergist (who treated me 1 - as if it was all in my head and 2 - as if I was wasting his time), Urgent Care, tests, treatments and no answers.  I should have bought stock in Calamine lotion because I was going through it like crazy.  I would slather on the pink lotion before going to bed at night only to wake myself several times each night due to scratching the hives.  I kept my fingernails very short, yet I was still scratching so much in my sleep that I woke each morning with scratches on my arms, legs and torso and dried blood in my nailbeds.  I just wanted an end to all of the madness.  My doctor was worried, my husband was worried, my mom, co-workers, boss, church family - all worried.  What was going on with me?????

Then, on January 12, 2014 I had an anaphylactic attack that hit fast and hard.  It began with a slight tingle in the corner of my left eye lid.  I went to the bathroom and downed 3 Benadryl tablets, looking in the mirror as I did so.  There was no swelling, yet, but I knew it was on the way.  In the two minutes it took me to get to the bathroom, take the Benadryl and return to the living room, my face went from zero swelling to being so swollen that my eyes were nearly swollen shut, my lips were enormous, I couldn't speak and I was having difficulty swallowing.  My breathing, however, was fine.  Urgent Care had helped me before, so, since I was able to breathe, we headed there.  After about a 20 minute car ride, we arrived at Urgent Care where I was immediately given a shot of epinephrine.  Instead of getting better, I continued to get worse.  The PA at Urgent Care called for an ambulance.  When I told her (as best I could, considering I couldn't speak above a forced whisper and I was drooling all over the place) that my husband was in the waiting room and he could take me, she said that she wasn't even going to let me leave AMA (against medical advice).  She said if she let my husband take me to the hospital I would die on my way there!  I was shocked and had a hard time believing this.  She was adamant!  Thank God for that!  She was also right.  In the ambulance, still probably about 10 minutes away from the hospital, I quit breathing.  Talk about panic!!!  The EMT in the back of the ambulance with me, Corey, gave me a second shot of epinephrine and I was able to breathe again.  Corey and Nigel, the EMT's, are the only names I remember from that awful day.  They were my angels!  At the ER, I was given another shot of epinephrine, a shot of prednisone and a shot of Benadryl as well as an anti-nausea med and something to normalize my heart rate.  The entire episode began a little before 2:00 in the afternoon and we didn't get home that night until after 11 pm.  It was after 10 pm before the ER doctor finally decided it was safe to send me home.

The next day, my doctor's office called me to tell me that my doctor had one more test to run.  He was grasping at straws, but there was a test he hadn't tried yet.  I was desperate and hoping against hope that whatever the test was would be the answer we'd been searching for.  He wanted to test me for Celiac Disease.  I had actually heard of it, though I knew nothing about it.  I already knew of members of my extended family who had Celiac Disease.  When my doctor learned that, he became very anxious to test me because he knew that Celiac Disease is hereditary.  After a blood test revealed elevated gluten levels and I have one of the genes for Celiac Disease, my doctor advised me to research Celiac Disease and to get on a gluten free diet.  I had no idea what gluten was, let alone how to eat gluten free.  I was relieved to have an answer, but overwhelmed at how little I knew.  I was on my own.  There is no medical treatment for Celiac Disease.  It isn't something you can grow out of, there is no cure.  It is an autoimmune disease.  When I started learning about the over 300 possible known symptoms of Celiac Disease I realized that I'd been living with this monster probably since I was a toddler.  So many things about my life and health finally made sense.  

Unfortunately, when I asked if there were any other tests that I needed to have, my doctor said that there were not.  It was only after I'd been gluten free for several months that I learned that the gold standard for Celiac Disease testing and diagnosis is an endoscopy.  By the time I learned that I needed to have this to verify that I have Celiac Disease and to see how much damage there was to  the villi in my intestines, I'd have had to introduce gluten back into my diet for 6 to 8 weeks so that testing could be accurate.  Knowing that gluten nearly killed me, I chose not to do this.  I was terrified of ingesting any amount of gluten for even a day, let alone 6 to 8 weeks!!  I had already seen many health improvements and I hadn't (still haven't) had another anaphylactic attack since going gluten free.  The hives were gone and haven't returned.  I was sleeping better, the brain fog was lifting, my depression and stress were improving and the panic attacks were fewer and farther between.  I know that I should have had this testing.  Because of my experience, I tell everyone who thinks they may have Celiac Disease - do NOT go gluten free until AFTER you get the confirming endoscopy!!!!  This is extremely important! I don't want others to go through what I've gone through.

Now I am approaching my fourth year since diagnosis.  I am still in the healing process.  I continue to be amazed that I now know what it feels like to truly feel good.  It wasn't until about a year and a half or so, after my diagnosis that I'd had a day where I realized that I really and truly felt good.  I cried!  I didn't remember EVER having felt that good at all before in my life!  MY. ENTIRE. LIFE.  I didn't always feel sick, but I had so many different issues I was dealing with that even a good day before was NOTHING like the good days I have now.  Do the good days happen all of the time or frequently?  Not really.  Most days are not bad, but that doesn't mean I necessarily feel good.  Yet, "not bad" is a good thing in my life.  I've had so many of the symptoms through the years (by my calculations, I've experienced 73 out of 300 possible symptoms).  Even as I am typing this I am dealing with muscle spasms in my right bicep and swollen, achy joints.  While many areas of my health improved quickly, many others are taking much more time.  Getting a Celiac diagnosis doesn't mean that all of your health problems will clear up if you stick to a 100% gluten free lifestyle.  Not by a long shot.  I still have times where my body simply shuts down and says, "No more!".  If I am too stressed out, not getting enough sleep, not getting enough nutrients (a tricky one, since Celiac Disease means that my body has a really hard time absorbing the nutrients it needs) I can have days (in a row, not just once in awhile) where I simply cannot function.  I am living with an autoimmune disease, after all.  Actually, two autoimmune diseases, because I also have hypothyroidism.  But I do the best I can to take care of myself.  I avoid gluten and take pains to be safe.  Do I always succeed?  Nope.  Just recently I was with family and we ate at a restaurant where I've safely eaten gluten free items from their menu before.  I got complacent.  I didn't run through my usual spiel about being gluten free for health reasons, asking how the food is prepared, is there a separate prep space, ingredients & fryers used or are any seasonings used and do they contain gluten, etc.  I am usually so careful.  That day I was not.  And it cost me!  By the time we left the restaurant I was feeling bloated and uncomfortable.  By that evening my stomach was cramping horribly and I was miserable and spent a lot of time in the bathroom due to nasty diarrhea that lasted for many hours.  I spent the rest of the evening in bed while everyone else ate and visited with each other.  Well, between bed and the bathroom.  It felt like every 10 minutes I was getting up and running back to the bathroom.  I know better and I didn't take the precautions I normally do.  And I paid the price for it.  I don't blame the restaurant.  I didn't make my needs clear to them.  I blame myself for that.  That is why I'm not naming the restaurant here.  It wasn't their fault.  It was my own responsibility to let them know my needs.  That is why I tell people all the time, "do not take anything for granted".  Speak up!  Be your own best advocate!  No one can advocate for you and your health as good as you can!

#celiacawareness #glutenfreebecauseihavetobe #itsnotafadforme #siouxlandceliac

Until next time - be well.

Siouxland Celiac