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/

Dealing with Flare Ups & What NOT to Say to the Chronically Ill

No matter how careful you are to make sure you avoid gluten and do things to try to be healthy, such as drinking lots of water, taking vitamin supplements and eating healthier, sometimes you still end up having a flare up.  Unfortunately, that is simply the nature of life with autoimmune disorders and chronic illness.  Sometimes there just isn't anything you can do to avoid it, no matter how hard you try.

Many things can affect and trigger a flare up.  Things such as changing seasons, stress, illness such as a cold or the flu, time change, unexpected life changes, etc.

This year has been a very difficult and painful year for me and my family, as we've gone through many large and unwelcome transitions.  Since the beginning of August, we lost my grandmother, then my father-in-law only a month later.  Pressures and changes at work for both my husband and I have brought us not only high stress levels, but uncertainty about our future.  With the onset of Autumn came seasonal colds, flu and other illnesses that we've been exposed to out and about.  So many things can trigger a symptom flare up.  These triggers, as well as the symptoms, can be vastly different in different people.  I'm currently suffering through a flare up.  I haven't been glutened (always my husband's first question) and I have been taking my vitamin supplements (his standard second question), yet I am in the middle of a flare up.  The simplest task leaves me feeling completely physically, mentally and emotionally exhausted.  I have been in the bathroom far too much for comfort over the past couple of days with diarrhea and upset stomach.  My head is pounding and, quite honestly, I can barely keep my eyes open to write this post.  My thoughts feel jumbled and, at times, I struggle to find the right word (I swear it is RIGHT on the tip of my tongue!).  My eczema on my arms and behind my ears is aggravated and I just want to crawl under the covers and not come out until Spring arrives!

How do I deal with a flare up like this one?  I'm so glad you asked!  First, know that there is NO magic cure or quick recovery treatment.  Your body has to take as much time as it needs to get over the flare.  However, there are some things you can do to help your body along and make it a little easier for yourself.

1. Stay hydrated!  I sometimes have a hard time with this one, though it is always something I will stress to other people.  It is so important to stay hydrated!!  It will help you replenish your body and will give you more energy (don't laugh - I can hear you now..."Energy?  What is that?!")  I know that seems like a foreign concept to those who are chronically ill because sometimes just the effort of getting out of bed can take every ounce of energy you may have.  But, staying hydrated will boost your energy level, even if it is just a little bit.  After all, every little bit counts when you have chronic illness.  Hydration also helps to lessen or eliminate muscle cramps and spasms.  When I have a flare up, one of my symptoms that gets worse is muscle spasms in my right arm.  I generally have some every day, but usually they are minor and don't cause me pain.  When I have a flare up, however, the spasms are hard and can really cripple up my arm for a time.

2. Allow your body to rest.  Sometimes it can feel like all you are doing is resting.  My work week gets to be long and by the time the weekend comes around I am usually done in.  It is difficult to accomplish things I need to around the house.  I'm learning that I need to do small tasks and take breaks frequently to help prevent from becoming severely drained and unable to function.  When your body is telling you it needs a break - LISTEN to it and obey!  You are not being lazy, you are simply giving your body what it needs.  I know that sleep can be difficult to come by when you are having a flare up due to insomnia or body aches or multiple trips to the bathroom because of gut issues.  Yes, our bodies require sleep.  It is exceedingly vital.  However, I am talking here about resting.  Sit down, lay down, whatever you need to do to allow your body and mind some down time.  For instance, I am writing this post on my laptop while in bed because I don't even have the energy to sit at my desk.  

3. Eat foods that aid in lowering inflammation.  Some good anti-inflammatory foods are bone broth, fish for Omega-3 fatty acids which can aid many health issues, fruits such as pineapple and blueberries, green tea and even dark chocolate.  I know women everywhere are cheering for that last one!  You can research anti-inflammatory foods online.  A really great and informative post about anti-inflammatory foods can be found here.

4. Take a probiotic and vitamin supplements - research to be sure they are gluten free.  My doctor advised me to take a probiotic that is at least 30 billion live cultures per serving.  In my own research I have found that it is generally advised that someone with chronic illness should take at least 50 billion live cultures or more per serving to get the most benefit from it.  To learn more about probiotics and what they do, check out this article.  My doctor also advised me to take prenatal vitamins, though I am well past the age of being able to get pregnant.  He told me that because I have multiple vitamin deficiencies, a prenatal vitamin would benefit me the most.

Now, for those who are not chronically ill, but have someone in your life who is...please never, ever, EVER say any of the following to that person or anyone who suffers from chronic illness:

5. I wish I could just lay around all day and do nothing.

4. Now that you know what is wrong with your health you shouldn't be getting sick anymore, right?

3. You're lucky.  I'd love to be sick just long enough to lose those few extra pounds I've gained.

2. No one could be sick that much, you must be faking it!

1. But you don't look sick!

On any given day, someone living with chronic illness has to push through the pain, fatigue, brain fog, anxiety and more just to attempt to function as if they were a healthy person.  You have no idea how much energy it takes to pretend NOT to be sick!  Just because we are at work, grocery shopping, doing laundry, attending events, do not mistakenly think that we aren't suffering.  We've just become very adept at keeping our suffering hidden.  We aren't trying to get attention.  It may come as a surprise to you, but we don't enjoy being the center of attention due to our health conditions.  We don't want your pity, your scoffing, your disbelief.  We need your patience, compassion and understanding.  What we are going through is difficult, can be isolating and it is an every day battle.  EVERY. DAY.  It will never go away.  This is our life.  For the rest of our lives.