Catching Up

Oh, hello there.  It's been awhile since I've seen you.  How have you been?  So much has happened since we last communicated in January, 2020.  Is that an understatement, or what?!  

So, I'll catch you up a bit on what has happened in my world in the past few years.  First, Covid happened to EVERYONE.  Wow did that shake things up and wreak havoc on the world!  As everyone was still trying to figure out how to stay safe during the pandemic, we were dealing with work as usual as the company my husband and I worked for (he's now retired, but I am still working for this company) is considered an essential business as we furnish farm and ranch supplies as well as essential items for home, gardens, automotive, hardware, etc.  While it made many of us nervous to have to still go to work every day because most of our jobs could not be done remotely, we were still very grateful that we weren't dealing with the isolation that so many had to endure.  I won't go into the difficulties we had during the pandemic because they were pretty universal.  Everyone endured hardships, loss and much more during this time.

We're coming up on two years since my husband was diagnosed with Stage II tonsil cancer.  After his treatment began, the oncologist called it, more accurately, neck cancer, as his tonsils didn't have any cancer.  Anyone who has gone through having a loved one with cancer or having cancer themselves knows that the next months were very difficult.  It has been over a year and a half since he finished his cancer treatments, but he still has effects from the radiation, though they are becoming less all the time.  His treatment consisted of radiation five days per week for seven weeks and then chemo once a week for the duration.  The radiation was on his neck so it affected his ability to swallow in a big way.  Much of his taste has returned, though some things still don't taste quite right to him and spicy food, which he has always loved, has been problematic.  He is getting to the point finally, where he can eat a little bit of spicy again.

We are very blessed that every check up he has had since finishing his treatment has been great!  He remains cancer free and we expect that to continue.  Going through cancer during the pandemic was extremely challenging and isolating.  Dave was out of work for about half of his treatment and for around 8 weeks after it ended.  The only places he went was the cancer center and home.  I fought to stay healthy so that I wouldn't bring any germs to him that could be devastating due to his compromised immune system.  We actually did really well as neither of us got Covid - until this past July.  I was worried how it would affect him, but as it turned out, it hit me MUCH harder than it hit him!  But, we are both doing well at this time.  I have had some larger flare ups of some of my Celiac symptoms simply from the stress of everything.  But I am working hard to take care of myself and have learned the benefits of rest and relaxation.

So, now that we have caught up a bit, I'm curious to hear from you and how you have been doing through the past couple of years.  If you have had Covid and have autoimmune issues, how did it affect you?

On to some fun stuff now.  Even though I haven't written a blog post for far too long, I have continued to post content on my Siouxland Celiac Facebook and Instagram accounts.  These posts include many gluten free recipes that I've been making.  One of my most recent recipes that I have made is a spin-off from my Great-Aunt Jean's quiche recipe.  This breakfast casserole is delicious and hearty and makes a big batch.  Allergen Alert: contains eggs and dairy

Hearty Breakfast Casserole

Ingredients:

6 large eggs

3 C milk or milk substitute (I used unsweetened cashew milk)

1 C Gluten Free Bisquick

1/2 C + 2 T Canola Oil or Extra Virgin Olive Oil (EVOO)

Salt & pepper to taste

1 pound gluten free bacon - fried or baked (I baked mine - see notes below), then cut into bite-sized pieces

1 C shredded sharp cheddar

1 small package of frozen hash browns, thawed

1 small onion, diced

1 T dried parsley

1 T dried basil

1/3 C Feta cheese crumbles

For your bacon, preheat the oven to 400 and line a cookie sheet with parchment paper (I didn't have any so I just placed it directly on the pan - parchment makes for easier cleanup and cooks the bacon more evenly).  Bake for 45 minutes to an hour, depending on desired crispness.  This will be used in a casserole, so it doesn't need to be very crispy for that.

While the bacon is cooking, combine eggs, milk, GF Bisquick, oil and seasonings in a medium mixing bowl.  Mix together with a wire whisk until blended.  The batter will be a bit lumpy.  In a 9x13 casserole dish, use a tablespoon of oil to grease the bottom and sides of the dish.  Place the thawed hash browns in the bottom of the dish and spread them evenly.  Sprinkle feta crumbles and diced onion on top of the hash browns.  Pour the egg mixture on top of the potatoes, onion and feta crumbles.  After the bacon is finished cooking remove and drain on a plate with paper towels.  Let the bacon cool enough to cut into bite-sized pieces and then place them on top of the mixture so the bacon is even across the entire casserole.  Top with cheddar.

Lower the oven temp to 350 once the bacon is finished cooking.  Place casserole on middle rack in the oven and cook, uncovered, for 45 minutes.  Cut and serve.  My husband loves this topped with some salsa for a little bit of a kick.

This casserole makes some pretty tasty leftovers, too.  I've enjoyed it for lunch a couple of days this week! 

Now it is time for the Catching Up Giveaway!!!  Yay!  I have help from a friend who is sponsoring this giveaway, Kallie at Fantastically Florida!  She has given me several items that she makes for the Awareness part of her online shop.  Here are the items offered in the giveaway.

Celiac Disease Awareness lapel pin, key chain and luggage tag are all provided by Fantastically Florida.  The necklace holds a small ball for essential oil therapy and is from my own label, Margo Makes.  In time for the cooler weather is a tall travel mug with herbal tea bags.  To enter:

1. Like and Share this post

2. Follow Siouxland Celiac on Facebook and/or Instagram (whichever you are on)

2. Tag 3 or more friends.  Every friend you tag is an extra chance to win.

Giveaway offer is open to only those in the continental United States.  Winner will be announced next Wednesday night, November 2nd.

 

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/

Gluten in Medication Disclosure

If you have Celiac Disease or are gluten free for other health reasons you know that you have to be on the lookout for gluten not only in your food and beverages, but also in beauty products, household cleansers and even in our medications.

Like many other Celiacs, I also have hypothyroidism.  I was actually diagnosed with my thyroid condition decades before I found out about my Celiac Disease, which I believe I've actually had longer.  I just recently read a conversation thread on a Celiac page I follow on Facebook where several people who also have hypothyroidism were comparing problems they've had with various thyroid medications such as Synthroid and Levothyroxine.  I have been on both of these medications at one time or another, beginning with Synthroid and then the pharmacist switched me to Levothyroxine several years later, well before I was diagnosed with Celiac.  Most recently the pharmacy switched me from the Levothyroxine to Euthyrox, which I'd never heard of.  They didn't tell me when I picked up my refill that they had switched my medication and I didn't look at it until I got home from the store.  My first thought was panic that I had a new medication that I knew nothing about.  I was not happy with that at all, as the pharmacy I use has on record that I have Celiac Disease and didn't say a thing about the new medication.  

The sad truth is that, like too many doctors, pharmacists know very little about Celiac Disease since there is no medical or pharmaceutical treatment available for this disease.  However, I would have thought that since I have to be gluten free, they would have mentioned it when I went in to pick up my refill that I thought was Levothyroxine.  Before I ever took my first dose, I went online to research this product.  Unfortunately, I was unable to even locate any ingredients for this product, though I went directly to the company's webpage https://www.provellpharma.com/  This is very frustrating for me as I NEED to take my thyroid medication daily and suffer when I don't, but I also NEED to be confident that it is gluten free.  After thoroughly searching online to get information about this medication, I finally decided to contact the company this weekend to ask them outright.  I'll let you know what their response is once I hear back from them.  At this time I haven't had any adverse reactions, however, it does make me nervous for prolonged use of a medication that I don't know if it is safe or not.  I asked at the pharmacy to switch me back to the Levothyroxine (by the way, the only brand of Levothyroxine that is gluten free is Lannet brand).  They said that they don't have a good reason to unless I begin to have adverse reactions or my doctor insists that I have to have a specific medication.  They, also, couldn't tell me if the new medication is gluten free or not.  They didn't know.  They were very polite and courteous, but, unfortunately, that doesn't help me with knowing if this medication is safe for me to use.

Earlier this year, legislation was introduced by Representative Tim Ryan on the floor of Congress called the Gluten in Medicine Disclosure Act of 2019.  Unfortunately, no summary of this bill has been posted yet.  Our government moves very slowly.  This piece of legislation was introduced in April, 2019 and they still haven't posted a summary of it.  When they do, you'll be able to read it here.  There is other information available about this proposed legislation, though, that is worth reading.

This is such an important piece of legislation, that, if passed, would hugely impact everyone on any kind of medication who is gluten free for health reasons!

To learn more about this and how you can let your voice be heard regarding this vital matter to our community, visit Beyond Celiac.  Their website is where I first learned of this legislation.  This is your chance to make your voice heard!  As more is released about this proposed legislation I will keep you posted with updates.  

Until this is passed (I'm being optimistic and hopeful here that it WILL pass) we still have to do the research ourselves and hope for the best.  We are our own best advocates and we have to keep fighting together to get what we need in order to take care of our health and well-being.

12/16/19 Update:
I received a call back this morning from Provell Pharmaceuticals.  I was impressed that not only did they get back to me so quickly, but also that they made a phone call instead of just sending an emailed reply.  The representative was very helpful and was able to inform me that Euthyrox is, in fact, gluten free.  This is a huge relief to me and I greatly appreciate the prompt attention and the importance they placed on getting me this information. 

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.

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!

The Importance of Family

Family is important no matter what is going on in your life.  But when you have a chronic illness, you really depend on your family being there for you, understanding what is going on or, at least trying to.

Unfortunately, not everyone has the support of their family after being diagnosed with Celiac Disease.  I think a big part of the reason for this is that Celiac Disease is a very misunderstood disease.  There is nothing that modern medicine can do to treat Celiac Disease and there is no cure.  With the only treatment option being to live a completely gluten free existence, many people can't wrap their minds around the realities of it. 

I've heard people say that they think it is a made up disease or a fad because they've read about famous celebrities who went "gluten free" to lose weight.  Because not much is commonly known about this disease, it is easy for people to dismiss it.  They don't understand that the reality is that it is a disease that can wreak havoc with a person's health in many areas and can lead to other illnesses that can cause death.  In my case and others who also have the extreme symptom of anaphylaxis (an allergic-type reaction where the person's face swells up and their airway is cut off because of swelling in the throat) that can kill swiftly.

I feel blessed to have a very supportive and understanding family.  Even those who don't understand the complexities of my disease have shown me love and compassion and so much support.  I don't take that for granted at all.

For the families of someone living with Celiac Disease, ask questions.  Don't just assume that what your relative is living with is minor or made up or not important.  Celiac Disease has changed everything about their life!  Not only have they had to completely change how they relate to food and what they eat, but they've had to give up or become extremely limited at being able to participate in even the simplest social events, such as dining out with friends, attending a wedding reception, birthday parties, work functions, etc.  Having Celiac Disease can be very isolating.  People often assume that you can "just take the bun off" the burger or that "a little bit won't hurt you".  But that isn't the case.  A little bit - as small as a single crumb can do a lot of damage to someone with Celiac Disease.  It isn't just a bad stomach ache or flatulence or having diarrhea, there is so much more to it.  And whether you understand or not, know that the person you care about is going through something very serious and they need your unwavering support and unconditional love and acceptance.

If you are living with Celiac, remember that your relatives and friends are not necessarily facing the same health issues that you are.  They can only understand based on their own life experiences.  Gently educate them when they will let you.  Be patient with them not understanding.  Remember that after your own diagnosis, you didn't learn everything over night.  Neither will they.

**As for the Holiday Giveaway that I first posted about two weeks ago - sadly, there were no entries received, so there is no winner this time.  My next giveaway will be after the first of the New Year.**