In Relation to Food

 

I’ve been thinking about food a lot the last few days.  Okay, let’s face it…I think about food a lot – every day!  But seriously, I came to the realization that I’ve had a very dysfunctional relationship with food for the majority of my adult life.

It began when I was 20 and in an abusive marriage.  My husband at the time, demanded perfection.  He used food as a punishment, a way to control me.  Every day of our married life he let me know I was overweight and inadequate in every possible way.  I weighed 110 pounds when we got married.  By Thanksgiving, nearly 3 months after our wedding, I was almost 9 weeks pregnant and weighed all of 97 pounds because of him limiting my food consumption.  In front of some of my co-workers, he angrily told me that I was, “fat, hideous and repulsive.”  A few days later, I miscarried the baby that I hadn’t even told my husband that I was carrying.  I didn’t realize until over 20years later that because of how malnourished and thin I was, I already had a small baby bump that early in my pregnancy which, I’m sure, added to his thoughts that I was fat.

When that marriage ended, I briefly dated a couple of really great guys – who just happened to all be cooks by trade.  Hmmmm.  The man I ended up marrying was a chef.  I didn’t consciously seek out men who cook, but you can’t tell me there wasn’t something under the surface that found that appealing. 

About 6 or 7 months after my second husband and I got married, I had gained some weight and was now up to 115 pounds.  I was actually at a healthy weight and was beginning to look healthy, too, yet I was horrified!  I was so afraid that my new husband was going to leave me because I was fat.  I struggled through our entire marriage with negative body image and my relationship with food was love/hate.  I loved food, but hated that I had gained weight.  I felt ugly and fat and my first husband’s words continued to taunt me no matter how much my second husband tried to reassure me that I looked good and that he thought I was beautiful.

A little less than a month before our fourth wedding anniversary, my second husband died from an aortic aneurysm.  I was 26 years old and utterly devastated.  My dysfunctional relationship with food intensified and morphed into something very ugly.  I would go days without eating because of my grief and then I would turn to food as my “drug of choice” to numb my grief.

I’ve never thought of me as having an eating disorder, but as I look back on it, I can see that I really did.  Not anything that I’ve ever heard a label for, but still not a healthy relationship with food or my mental health at all. 

Over the years my weight would balloon up to 186 pounds at my heaviest.  I sought comfort in food when I was sad or angry.  I would use food to celebrate or fill a void when I was bored.  I am definitely an emotional eater.  I would diet periodically, lose weight, just to feel empty and still inadequate, so I would turn back to my unhealthy eating habits. 

Then I learned that I had hypothyroidism, which makes it difficult for me to lose weight, among many other symptoms.  So, I had a built-in excuse for not losing weight without taking any responsibility for my own unhealthy choices and without changing my eating habits. 

I finally grew weary of feeling tired and having no energy and hating myself for the way I looked and felt.  I joined a weight-loss program and in around a year and a half, I lost 53 pounds and was finally back to a healthy weight.  Yet, I felt horrible!  I loved the way I looked, but I still had worsening symptoms that eventually led to me being diagnosed with Celiac Disease.  Before that diagnosis I was suffering from severe anxiety, chronic fatigue, almost constant upset stomach, bloating, aching joints and eventually, hives and periodic anaphylactic reactions.  For around three years my doctor worked to find a correct diagnosis and treatment but nothing was working.  I became afraid of food.  I didn’t know what was causing me to have these reactions and so all food became the enemy.  I began keeping a food diary to try to track when my symptoms would appear.  There didn’t seem to be any connection. 

Then I had an anaphylactic reaction so severe that I nearly died in the ambulance on the way to the hospital.  This led to my Celiac diagnosis.  Thus, my dysfunctional relationship with food took an unexpected turn.  When I was finally diagnosed with Celiac Disease, I had no idea what gluten was or what foods contained it.  I had to do the research on it myself.  I lost weight initially because I wasn’t eating much.  My anxiety was unbearably high.  The first year post diagnosis was such a struggle as I learned by trial and error.  Eating became a chore.  I had to eat to live, but it took a while to figure out what was safe for me to eat.  It was daunting and felt hopeless at times.

Once I finally figured things out, I went on the hunt for gluten free “replacements” for many of the foods that I’d had to give up for the rest of my life.  Most of the gluten free replacements were very unhealthy.  I felt deprived, so I wanted to fill that void – with more food.

Because of the nature of my disease, I have to think about food.  I have to constantly be on my guard to make sure that I don’t ingest gluten in any form.  It means that participating in special things such as events at work that include a meal, when a co-worker brings treats in for the office, wedding receptions, any kind of gathering where food is present can be difficult and awkward.  Even just getting together with family can be stressful because they can have all of this wonderful and delicious food and I’m stuck with a very limiting diet.  Most of the time, I’m ok with it and I’ve gotten used to it over the past 9 plus years.  Once in a while, though, it gets to me and makes me feel left out and separate from the rest.  It can honestly make me angry that I have this damn disease.  Again, it is my own personal, difficult relationship with food.  The dysfunction is just different than it was before this diagnosis.

What is the answer?  I wish I knew.  I am working to have a better relationship with food.  It is difficult, when you have to constantly be on your guard concerning food, to not let it consume you.  It can feel quite overwhelming at times.  The best I can do, the best anyone can do, is take it one day, one meal at a time.  I hope to one day have a healthy relationship with food.  That is the goal.  I know a big part of that is having a healthy relationship with my body image and learning to accept myself.

I am nothing, if not a work in progress.

Moving Forward

It's a new year and many people are making New Year's resolutions - or breaking them.  I've never really been one to make a New Year's resolution because they always seem to be something that sets you up to fail.  Everyone has BIG dreams of goals they want to set for themselves, yet, these goals seem to be tossed aside at the smallest stumble or if the results don't happen as quickly as we want them to.  

This was actually the message topic at my church this morning.  My pastor's new message series is a timely one called, "Habits".  This morning he spoke about why we fail at our resolutions or to set healthy habits.  Often, we dismiss our small good decisions as not mattering much.  The same with our small bad decisions.  The truth of the matter, as he pointed out, is that our lives are the sum total of ALL of the small decisions we make - good and bad.  If we don't see results right away, it can feel like it is never going to happen or that it takes too much work.

What I want to talk to you about today is about moving forward after a Celiac diagnosis or learning you have other health issues that would benefit from a gluten free diet.  What on Earth does any of that have to do with resolutions or habits, you may ask?  Good question.  One I plan to answer as I move forward (see what I did there) into the rest of the post.

1. DIAGNOSIS

The first thing that happens before anything else can is diagnosis.  If you think you may have Celiac Disease or someone else in your immediate family (parent, sibling or child) has been diagnosed, you need to get tested.  This includes blood test AND a confirming endoscopy.  It is possible to have a negative blood test and a positive endoscopy, so follow through is extremely important for correct diagnosis.  Note that you MUST still be consuming gluten until after your endoscopy.  This is vital for accurate results!  For more information about Celiac Disease, you can read a previous post of mine, What Is This Thing Called Celiac?

2. INFORMATION & EDUCATION

Once you've received a definitive diagnosis, you will need to live a 100% gluten free lifestyle.  There is so much to learn.  What is gluten?  How do I go gluten free?  What items are gluten found in?  If you're like I am, I went straight to a bookstore and then online.  I found a great book called, "The Gluten Free Bible", by Jax Peters Lowell.  She is a woman who has been living with Celiac Disease for a long time and has a lot of information in her book from the standpoint of someone who's been there and is living it every day!  For more great book resources, see my list at the end of this post.  On the internet, I found a ton of conflicting information.  It took me many months up to a year to really figure out which sources were reliable and which were not.  The biggest source I use as my go-to for information has been Beyond Celiac.  They have all kinds of information and great resources available and I highly recommend them as a great place to get started learning about Celiac Disease and being gluten free.  You can also read more in my post, Gluten Free 101.

3. GRIEF

This is one not many people talk about.  That was one of the things that I really appreciated about Jax Peters Lowell's book.  She states right out that you need to grieve.  Your life has just changed forever.  Your relationship with food has changed forever.  You have to say goodbye to so many favorites as well as convenience.  A couple of mine that still hurt to this day are KFC (Kentucky Fried Chicken) and REAL pizza!  I have yet to find a gluten free pizza that is as mouth-watering good as the pizza I've loved for most of my life from Godfather's, Pizza Hut, etc, though there are some delicious gf pizzas and recipes out there.  Not only does your relationship with food change, but, sad to say, some of your relationships may change, as well.  It's nobody's fault, it is just a lot to deal with.  YOU have to deal with it every moment of every day for the rest of your life, but those around you who don't have to be gluten free may get tired of your dietary needs dictating where you dine out or the fact that you may have to cancel at the last minute, plans that you've had for months because you're having a flare up.  It happens more than you would like - even if you are doing everything right.  Even as you are learning how to live with your new reality, you do need to allow yourself to grieve for everything you've lost, that you have to leave behind, and maybe even, in some cases, relationships that are never the same.  The important - critical thing about grieving is that you allow yourself time to grieve, but you don't stay there.

4. ACTION

Here's where the resolution and habits part comes in.  All the while after your diagnosis, as you are learning and even through your grieving stage, you need to take action in order to take back your health!  This means not only going gluten free, but learning to practice self-care in the forms of getting plenty of rest, staying hydrated, taking care of your spiritual health and making healthy choices all around.  The ONLY treatment option available (is that really an option, then?!) is to live 100% gluten free!  There is no medical treatment available - no pill or shot you can take.  You MUST be 100% gluten free.  This means you NEVER cheat!  If you cheat, even if you are asymptomatic (meaning you have no symptoms), you will still cause damage to the lining of your small intestines, which can, in turn, lead to other health issues, autoimmune disorders and even death.  This isn't like a weight-loss diet where if you cheat you just make an adjustment to the rest of your intake that day.  Just one small crumb of gluten can cause extensive damage to your intestinal lining.  It isn't worth it.  Many people have told me that they just couldn't go gluten free because they can't give up all of the foods they love.  When your health, your life depends on it, you can adjust to ANYTHING!  Don't fall into the pitfall that many newly diagnosed (including myself in the beginning) of seeking out gluten free versions of your favorite junk foods!  Like any "normal" food out there, the more processed, the more refined sugar, high sodium, etc. foods are the absolute worst things for you.  The same goes for processed gluten free products.  Be mindful of the ingredients you are putting into your body.  Remember, you are working to heal your gut and you need to create healthy new habits to aid in that healing with the goal of getting to remission (though, even in remission you can NOT go back to consuming gluten.  You are now gluten free for the rest of your life, even if you achieve remission, meaning the villi in the lining of your small intestine are healed).

5. ATTITUDE

Like anything else we go through in life, attitude makes a world of difference.  If you go into this with the attitude that this is too hard, I'll never make it - that is exactly what will happen.  Our attitude determines our success!  If you go into this with an attitude that you are going to work at it until it becomes second nature to you, you will succeed!  Your determination to stop feeling like crap and start feeling good for a change will spur you to keep with it, even if you don't begin to feel better immediately.  Everyone is different.  Different people heal differently.  Some people end up feeling worse before they eventually start to feel better.  Don't give up.  It is hard.  It can be painful.  It can be isolating.  BUT, that first day you realize that you actually feel good - completely well without fatigue, headache, body/joint aches or whatever symptoms you may have - you will realize that it has all been worth it.  That day won't be every day.  Flare ups happen and they can get discouraging.  Don't stay discouraged.  If you can go into this with a positive attitude and keep going back to that positive attitude even after discouraging setbacks, you'll make it through anything!

This is a new year, a new decade, a new chance for you to take control of your health.  It is doable!  I am living proof of that.  Yes, I still get sick - in fact I've been struggling with illness since Christmas Day and, though I am finally starting to feel better on January 5th, I'm still not fully recovered.  Even illness that is not Celiac related, like this current illness, can take longer recovery time because of my compromised immune system.  It happens.  It sucks!  BUT, I carry on, moving forward to become a healthier me.

Additional resources about living with Celiac Disease:

"The Gluten Free Bible" and other books by Jax Peters Lowell at https://jaxlowell.com/

"Dough Nation: A Nurse’s Memoir of Celiac Disease from Missed Diagnosis to Food Health Activism" by Nadine Grzeskowiak, RN and her informative podcasts at https://glutenfreern.com/podcasts/

"Jennifer's Way: My Journey With Celiac Disease--What Doctor's Don't Tell You and How You Can Learn to Live Again" by Jennifer Esposito.  She also has a wonderful gluten free cookbook out called, "Jennifer's Way Kitchen: Easy Allergen-Free, Anti-Inflammatory Recipes for a Delicious Life".  Check out Jennifer's podcast at https://www.chewthis.life/

Surviving the Holidays When You are Gluten Free

It is a very brisk Autumn day here in Iowa.  With the arrival of November, the holiday season is fast approaching.  It seems that especially this time of year can get very discouraging and frustrating for those of us who have to be gluten free due to Celiac Disease or other health issues that require a gluten free lifestyle.  Here are some ways I have found to survive the holidays being gluten free.  (read all the way to the end for the Giveaway Winner announcement!)

Just because we are gluten free doesn't mean we can't enjoy ourselves along with our family, friends and co-workers at holiday get-togethers and events!  One thing I learned during my first holiday season after my Celiac diagnosis is not to expect others to cater to my dietary needs.  It isn't fair to them and you will only be disappointed and probably end up sick.  I try really hard not to call attention to my being gluten free other than when I have to.  I have never enjoyed being the focus of attention and this is no exception.  My sister-in-law, having the most space in her home, always graciously hosts the family gatherings for Thanksgiving and Christmas.  We do it potluck style, with everyone bringing something for the meal.  At Thanksgiving, I completely prepare an entire Thanksgiving meal for myself at home, including the turkey (even with meat, you have to watch to see if anything was added to make sure it is safe for consumption when you have to be gluten free).  Yes, my sister-in-law and her husband usually make a turkey, but I don't mind making my own, as well.  I can control what I am getting and I know exactly what has been used in preparing it and my husband and I have left-overs that we wouldn't if I didn't make my own.  My sister-in-law usually provides potatoes, so I don't make those, though I do make my own gluten free gravy and stuffing at home and take just what I need for myself.  Actually, I end up taking a little bit more, as well, because my mom likes to try the gluten free foods I make, even though she doesn't have to be gluten free.  I always try to make a gluten free desert to share with everyone there and on Black Friday - otherwise known as Iowa Hawkeye Game Day to our family, I always bring a snack that everyone can enjoy (including me).  A favorite that is requested of me each year is my spinach, artichoke dip.  Yum!  The nice thing about making my own meal that is safe for me to eat is that, anymore, it is just commonplace and no one thinks anything of it.  I am not the center of attention because of my limitations and I get to enjoy delicious, gluten free foods that I know are perfectly safe.

On my dad's side of the family, there are quite a few of us living with Celiac Disease or non-Celiac Gluten Sensitivity, so there are always plenty of delicious gluten free options at these family gatherings!  And, we don't have to worry about cross-contact because everything is labeled with separate utensils and kept away from the gluten-full foods.  While it is sad that so many of us have to avoid gluten on this side of the family, it also feels like I can just enjoy a normal family gathering because I'm not alone.

There are many things you can do to be safe and yet still be a part of the festivities.  Eating ahead of time can help and then just enjoy a glass of wine or a hot cider and good conversation with everyone else at the event, or bring your own food.  The first couple of years after my diagnosis I found kind of depressing as I focused on all of the things I couldn't have instead of focusing on just being with family and friends and enjoying the moment.  Concentrate on the joy and fun of the event and don't let what you can't have get you down.  Be thankful that you know what has caused your health issues and that you are in control as much as you can be.  

At any event where you bring your own food or, if catered and the caterer will provide a gluten free meal for you, there may be some people who ask you questions about your health and about being gluten free.  I've learned to give short, but accurate answers to these questions unless someone really is interested in learning more about Celiac Disease and being gluten free.  Many people, while curious, don't want to know the entire history of gluten, Celiac Disease, etc.  Most are asking to be polite.  Generally, I try to give a short answer and then turn the topic of conversation to something else that everyone can participate in.  That way, I'm not on the spot and the conversation doesn't become all about me and my health issues.  I want to enjoy the festivities as much as the next person.

The holidays can be very intimidating and isolating if you let them.  For me, being able to prepare and take my own food to get-togethers cuts out the intimidation factor and keeps me from being isolated.  I can say yes and attend and be a part of the event and know that I am safe because I've prepared my own meal.  Even though most holiday events center around food, remember that there is so much more to enjoy about life than just the food!  After all, the best things in life are free (gluten free, that is!).  Take a moment this holiday season to really notice and appreciate all of the naturally gluten free things in your life.  Some of my favorites are the sound of children laughing, joyful holiday music, the colorful Autumn leaves, warm sweaters, snuggling with my favorite someone - there are so many beautiful things in this life that have nothing to do with food, but are naturally gluten free.  Enjoy them this holiday season!

Now for the winner of the Autumn Giveaway co-sponsored with my friend, Kallie at S2 Soaps...

ANDREA KESSLER @skessler28

Congratulations, Andrea!!

Raise Awareness Not Tempers

After a brief hiatus, I'm back and ready to get back into the swing of things full force!  Recently I've seen several posts from people who are angry and frustrated with what they call incompetent doctors who misdiagnose or failed to diagnose for too long a period of time before they finally got a correct diagnosis of Celiac Disease. It does on average take anywhere up to 10 years sometimes to get a correct Celiac diagnosis because this is simply not the first thing doctors necessarily consider.  While I fully understand their frustrations, I prefer to take a more practical and logical view of this.

One, I am not an angry or negative person by nature.  I tend to find the positive in even the dimmest, darkest situation.  I think becoming angry about supposed doctor incompetence is counterproductive.  Please remember that there are over 300 hundred possible known symptoms of Celiac Disease, many of which, mimic other health disorders.  For a fairly comprehensive list of the known Celiac symptoms click here. 

Over my life I have presented with 73 varying, chronic symptoms, many of which could also be attributed to my hypothyroidism.  Symptoms for Celiac Disease range anywhere from IBS type symptoms, severe bloating, skin issues, brittle nails, dental problems, brain fog, anxiety, insomnia, paranoia, achy, swollen joints, other health disorders and autoimmune diseases, and in extreme cases anaphylaxis.  If taken separately, each of my 73 symptoms could potentially lead to 73 very different diagnoses.  In fact, it took my doctor 3 years to finally test me for Celiac Disease.  It wasn't because he was incompetent.  On the contrary.  He was searching for answers to my most pressing symptoms, which appeared to be allergies of some kind.  It wasn't until I nearly died from a severe anaphylactic attack that he reviewed my entire medical history and put all of my symptoms together to consider to test me for Celiac Disease.  He worked so hard with various tests and treatments to try to find the right answer.  We were both looking at only the most recent and severest symptoms instead of the whole picture.  Which is logical that a doctor would do that! 

There is no medical treatment or cure for Celiac Disease.  Unless a doctor is a specialist in this area, Celiac Disease is not going to be the first diagnosis on his or her mind.  Again, with such a huge variety of symptoms, many of which have absolutely nothing to do with the gut, it is no wonder that so many people are misdiagnosed, often multiple times, before finally getting the correct diagnosis.  The key isn't to get angry, but to educate!  My doctor doesn't know a lot about Celiac Disease.  He can't treat me medically for it, so he has actually learned a bit more about it from me through the past few years.  I love that he asks me questions about it and that he listens to what I have to say.  He is a general practitioner, not a specialist in Celiac Disease.  And, he is a very good doctor, whom I still see for my overall health and wellbeing.  

Yes, it is very frustrating how long it takes to get a correct diagnosis - if you ever do!  Believe me, I was extremely frustrated, too!  I've never blamed my doctor, though or believed he wasn't doing all he could to find an answer.  The more we can educate people and raise awareness of Celiac Disease, what it is, what the symptoms are and what it truly means to live gluten free, hopefully, the better doctors will get at recognizing and diagnosing Celiac Disease more quickly.  Admittedly, I was frustrated several months after my diagnosis via blood tests and going gluten free to learn that I should have had a confirming endoscopy.  This is where gently educating our medical professionals comes in handy.  My doctor didn't know that I should have had an endoscopy.  He knew which blood tests to order for diagnosis that way, but when I asked if there were any other tests that I needed, he told me no.  This disease is simply one that most doctors have little to no experience with.  If your doctor is open to it, sit with him or her and discuss your disease with them.  Let them know about it, what it is like to live with it, what it means to be gluten free.  I feel fortunate that my doctor is truly interested in what I have to say about it.  He knows I've done my research.  He knows I want to do whatever I can to get healthy.  And he knows it is important for him to know more about it.  Maybe, because of my history and diagnosis, he may recognize symptoms in someone else and be able to diagnose them sooner.

This is one of the biggest reasons I began this blog, am co-leader of my local Celiac and Gluten Free support group and recently built a new website - to help educate and raise awareness.  What can you do to help raise awareness for Celiac Disease in a positive and proactive manner?

For more resources visit:
https://www.beyondceliac.org/
https://celiac.org/
https://westerniowaceliacandglutenfreeliving.com/

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!

10 Celiac Perks

Yes, you read that right - this post is about what I like to call Celiac Perks.  By now, if you've lived with Celiac Disease for any amount of time, or even if you are newly diagnosed, you are well aware of the myriad of Celiac problems.  However, did you know that there are some perks to having Celiac Disease?  I'll bet you didn't!  Well, I am going to share some of the perks I've discovered over the past nearly 5 years of living with Celiac Disease.  After you read this post, I'm interested in hearing from you what are some of the perks you've discovered on this gluten free journey.

#10. Acquiring a new, twisted sense of humor.  The health issues that come with Celiac Disease are serious enough, but the longer you live with this disease the easier it is to have a sense of humor about it.  I mean no one understands the humor of flatulence quite like a Celiac - other than someone who is lactose intolerant, of course.  But then again, many Celiacs are lactose intolerant so...

#9. Having a built-in excuse not to participate in certain social events that you'd rather not attend.  Not being able to eat the food can sometimes be a good thing.

#8. Not putting on the extra pounds co-workers do from all of the goodies around the office during the holidays because 99.9% of them are not gluten free.

Cookies, pies and cakes, oh my!

#7. Being on a first name basis with the wait staff, chef, manager, owner of your favorite restaurant because you are there so often since it's the only restaurant at which you feel safe eating.  When you find that place that educates their staff, understands what cross-contact is and how to avoid it and puts up with you asking about 100 times each time you dine there, if they made sure to note that your meal is gluten free for health reasons (not to mention the other 100 questions that go into placing your order) there is no place else you'd rather be.

#6. Being selfish and not sharing your food with anyone.  Have you SEEN how expensive gluten free food is?!  Yikes! 

#5. The freedom of bringing your own gluten free meal to social gatherings when one is not provided for you.  Yes, I have done this on numerous occasions and I am able to enjoy myself, knowing that every bite is perfectly safe because I made it myself.

#4. The satisfaction of proving to people who think that all gluten free food tastes like shoe leather that there is some really delicious food out there that is gluten free.  Gluten free brownie, anyone?? 

#3. Becoming a part of an amazing, supportive and strong Celiac and gluten free community.

#2. Becoming my own best advocate.

#1. Stepping out of my comfort zone to help educate, encourage, support and advocate for others in this Celiac/gluten free journey.

And don't forget about my holiday giveaway going on right now!  I am taking entries until noon Central Time on December 15, 2018.  To find out how to enter click here.

 

Finding Your New "Normal"

When living with Celiac Disease, so often our focus becomes our food - what we can eat and, more importantly, what we can't eat.  If you're like me, it can become very exhausting very fast, feeling like all you do is think about food.  It can become an obsession if you aren't careful.

When I was diagnosed in 2014 I had absolutely NO idea just what gluten was, let alone what all it could be found in.  Hint - not just food!  My worst symptom, as I've stated in other blog posts, is anaphylaxis (think of a reaction that someone with a peanut allergy or other severe allergy has - though mine is not an allergy, but an autoimmune disorder).  In fact, I was finally diagnosed with Celiac because the last anaphylactic attack I had nearly killed me.  So, newly diagnosed and researching on my own, I became terrified of food - ALL food!  My sole concentration was on what I couldn't have because I didn't yet know what was actually safe for me to eat.  I asked for advice from my cousin, who, along with his daughter, also has Celiac Disease and was diagnosed years before I was.  His big pointer, which I didn't think helped much at the time, however, has become very important and good advice to me, was to concentrate on what I CAN have, not on what I can't.  That was hard, because, like I said, in the beginning, I had no clue!  I was reading everything I could find about the disease.  It was often hard to distinguish the fact from fiction.

The day I was told that I might have Celiac Disease - before any testing had even been done - I went out on my lunch break from work and bought the first book I could find on it.  It turned out to be a great book to be my first on the subject.  The book was called, "The Gluten Free Bible" by Jax Peters Lowell, a woman who has been living with Celiac Disease for a long time - long before there was an entire growing market for "gluten free" food.  This amazing woman and author told her story straight up and also included humor.  She told me in her book that it's okay to mourn the loss of my former life and all of the foods I can never have again.  And that is what it is, you are facing a completely unknown future and learning how to navigate a gluten free life in a world chock full of gluten.  We have to give ourselves permission to mourn that which we've lost.  However, she also said not to stay in that period of grief long.  It is important for our well being to embrace our new existence and learn to find joy and some sense of normalcy in our new reality.  Jax's book helped me so much to get over my fear and the feeling of being completely overwhelmed and oppressed by all of the information I found out there!

You see, living a gluten free life is so much more than about food!  Not just because so many other things contain ingredients derived from wheat and gluten.  For example, the glue on envelopes, shampoos, skin care products, make up...the list goes on and on.  Things you would never imagine that would contain gluten.  The further I read into "The Gluten Free Bible" and then a few months later when Jennifer Esposito's book, "Jennifer's Way; My Journey With Celiac Disease - What Doctor's Don't Tell You and How You Can Learn to Live Again" came out - the more I realized that there are many other factors besides food in getting and staying healthy.  Yes, a gluten free diet is vital.  If you have been diagnosed with Celiac Disease you can not ingest gluten - ever!  You will cause damage to the villi in your intestines and that can lead to a plethora of other health conditions, including cancer.  And the best way to be gluten free is to stick with naturally gluten free, unprocessed or minimally processed foods.  The fewer the ingredients, the better.  You also want to stay away from unpronounceable ingredients and preservatives. This last part is still something I am working on in my own life - and I admit, it is not always easy, but it is the healthiest way to be gluten free.  Sadly, there is a lot of unhealthy "gluten free" foods out there.

To truly take care of yourself, you need to be sure you get plenty of sleep each night, drink lots of water, keep stress to a minimum - so many things that are vital to everyone, not just people with an autoimmune disease.  Time and time again in the past almost 5 years I come back to my cousin, Kelly's advice to concentrate on what I can have.  What I CAN have is a positive attitude.  I CAN have fun - I don't have to let my disease take away my ability to enjoy life, even if it may make it more difficult to do so at times.  I CAN keep my faith in God strong - especially in those times when I am not.  I CAN help others learn more about Celiac Disease.  I CAN show kindness and compassion to others who are walking a difficult road no matter what that road may be.  I CAN still be me!  I am not my disease.  I have Celiac Disease, I am not the sum of my illness.  I am still Margo.  I still love photography, writing, painting, reading, snuggling with my kitties, laughing with and loving my husband, family and friends, serving in multiple ways at my church and in my community. 

I'm here to tell you that there IS life after a Celiac diagnosis.  It's not an easy or short road to health, you may even feel worse before you begin to feel better, but the attitude you have will make a huge difference.  In my case, I've been extremely blessed to have a lot of supportive family, friends, church family and co-workers who've been there with me and for me through all of this.  I know that not everyone has that kind of support.  I am here for you!  One way I found to live my life again and find my "new normal" was to start writing this blog, start a Facebook page and Instagram account to reach and support as many people living with Celiac as possible.  One of the very best ways to help a person get through the difficult, overwhelming and frightening circumstances they may find themselves in is to reach out to help others.  Even in a small way.  Let what you are going through open your heart to someone else who is also going through a hard time.  You'll find that even in your less than ideal circumstances you can be a light, a support, an encouragement to someone else.  In that, you will find beauty in your "new normal".

For more information about Jax Peters Lowell, click here.

To follow Jennifer Esposito on Facebook, click here.

Click on the link to listen to Jennifer's new podcast called Chew On This