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.**

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.

 

Holiday Season - The Gift of Giving

Yesterday marked the countdown to Christmas as we said good-bye to November and welcomed December in with a snowstorm!  Well, there was a snowstorm in my area, anyway.

In the spirit of giving that abounds especially during the month of December, I will be doing a special giveaway.  Read through to the end of this post to find out how to enter.

Before I get to the entry rules I want to share with you a post that a friend of mine shared on Facebook that I love and I am doing throughout this month.  It comes from the Passionate Penny Pincher and I think it would be awesome if many of my readers would do this along with me.  On the Passionate Penny Pincher's Facebook page, this Reverse Advent Calendar can be found.  I plan to make all of mine gluten free with as much being free from the top 8 food allergens as possible.  People who are gluten free for health reasons or have food allergies can also fall on financial hard times, not just people who can eat anything.  That's why whenever I donate food for food banks now, I always make my donations gluten free and allergen free as much as possible.  For instance, to avoid peanut allergies, you can substitute something non-nut related.

Many people become especially generous at this time of the year, but it is important to remember to be charitable and generous all year through.  This doesn't mean just in giving gifts or donations, but also other things that matter - your time, your talent, your compassion, your kindness.  These things can't be bought with money and end up meaning the world to the person receiving them.

Now, in the spirit of this holiday season, here is my last giveaway of 2018 (the first through this blog - all of the rest have been through my Facebook and Instagram pages).  This giveaway will include several fun items - though, since it is the holidays, I am not telling what they are because that would ruin the surprise!  

To enter:

1. Follow www.siouxlandceliac.blogspot.com

2. Like @siouxlandceliac on Instagram and/or Facebook (not everyone does both, so you only need to follow on one in order to be entered into the contest)

3. Tag 3 friends on the giveaway post on Instagram and/or Facebook

Only those living in the continental US are eligible to enter.  All entries must be received no later than noon Central Time on Saturday, December 15th.  The winner will be announced in my blog post on Sunday, December 16th.

A Whole Lot of Gratitude

I hope that everyone had a safe and happy Thanksgiving with your loved ones!  My sister-in-law and her husband hosted the holiday festivities at their home again this year, as they do each year.  It is always great to spend time with family.  I feel extra blessed that I am able to do so safely by bringing some of my own gluten free meal as well as enjoying other items provided by others that were gluten free.

Food is always such a big and important part of any celebration or get-together, of course, but at times like these I like to focus mainly on other aspects of these kind of events instead of the food.  Don't get me wrong - as my waistline attests - I love to eat!  And I was especially tickled that my mom made my favorite dessert, peach cobbler - adjusting the recipe to make it gluten free.  But the very best parts of the holiday weekend had nothing at all to do with food.

Thanksgiving Day my husband and I gathered together with my mom, father-in-law, mother-in-law, Dave's sister, her husband and their son, Josh who came home for a visit.  We enjoyed good conversation, shared a lot of laughter and I learned how to play a new card game.  Okay, so the game isn't a new one, but I'd never played before, neither had my mom.  Thankfully, everyone put up with my frustrations as I tried to comprehend how to play.  By the second game, I finally understood and was able to relax and have fun with it.  I'm very grateful for family who love me and forgive me even when my frustrations get the best of me.  So, yes, being with family is a HUGE blessing and one I am so grateful for!

Black Friday - or, in our family, Black & Gold Friday (Iowa Hawkeyes v Nebraska Cornhuskers football game) came around and Dave and I were back at Deb and Craig's to watch the game.  We were joined by their daughter, Beth, her husband, Tim and their two little girls.  While we were there, we shared memories by looking at a photo album my niece, Beth found in her parents storage.  I watched (and snapped a few pictures) as my sister-in-law pointed out special ornaments on her Christmas tree to her granddaughters.  And, the girls found some of their mommy's old dance costumes from when she was their ages, so they played dress up and modeled for me.  As you can tell, I didn't get a lot of the game watched.  I usually become the living dress up doll for these two precious little girls and this day was no different.  At fifty years old, getting up off of the floor isn't so easy anymore, but oh, do I have a blast with these two!  My husband and I don't have children so our nieces, nephews and great-nieces and great-nephews are extra special to us.  My favorite part of this entire weekend was sitting on the sofa with a 6 year old and 3 1/2 year old snuggled on my lap as I read story books to them.  BEST. THING. EVER.

We don't get to see my side of the family very often, so I miss them terribly - especially during the holidays.  But, I'm so grateful for each and every one of them and for social media, so we can still keep track of each other, even when we aren't able to be together in person.  

Today closed out the holiday weekend with an uplifting and thought-provoking service at my church, New Hope.  I feel so blessed to be a part of this New Hope family and thrive on the love and many hugs, encouragement and support that the members there give so freely to others.

There are so many wonderful blessings in our lives.  Too many to name.  Sometimes it feels like all there is to life is turmoil, struggle and pain.  When things get overwhelming and it feels you have nothing good in your life, take a moment to think about the good things in your life.  Sometimes it helps to write them down so you can look at them when you need reminding.

Oh, and by the way - the Hawkeyes won! :-)

Navigating the Holidays When You Are Gluten Free

It's the beginning of the holiday season this week!  Whew!  Where did 2018 go??  It feels like it just flew by.  Holidays and events can make life complicated for those of us with food issues, such as avoiding gluten because of Celiac Disease or Non-Celiac Gluten Sensitivity or food allergies or other health issues that are aggravated by certain foods.  In fact, complicated may not be strong enough a word.  For some of us, it can be downright terrifying - especially if you are newly diagnosed and it is your first holiday season since diagnosis.

It has been trial and error for me over the years, but I've found something that works very well for me when it comes to holidays with family and friends.  First, I don't expect anyone else to prepare dishes with me in mind when it comes to family gatherings.  I am the only one at our Thanksgiving and Christmas celebrations who has to be gluten free and I've come to the conclusion that it isn't fair for me to expect others to have to worry about making their specialties gluten free just so that I can have some, too.  Now, I'm not saying that is how everyone should be, I'm just saying that this is what works for me and my family.  My sister-in-law and her husband host us each year in their lovely home and there is so much food and laughter and love around that kitchen and table!  However, I prepare an entire gluten free Thanksgiving (or Christmas) meal at home and then portion out just enough for my meal with the family.  That makes for a LOT of leftovers for my husband and I to enjoy later, which is just bonus!  I usually end up taking a dip or dessert that is gluten free over to share with everyone who wants some.  My hot spinach artichoke dip is a family favorite (keep reading for the recipe).

My meal at our local Celiac Support Group potluck on Nov. 15th.

My friend, Angie at www.cupcakesandyogapants.com wrote a great post recently about 4 places gluten can hide in holiday meals.  You can read this informative post here. 

If you are traveling for the holidays, a handy cell phone app to use is Find Me Gluten Free.  This is a free app at Google Playstore and has come in handy on every trip I've taken since I discovered this app in 2014!  It helps you find restaurants that offer gluten free options and, thanks to customer reviews in the app, may even tell you if the restaurant is "Celiac friendly".  You can also research things online for grocery stores near where you are going to be and what gluten free products they may have to offer.

No matter what the gathering, remember, the point isn't the food, but spending time with those you love and care about!  Don't let it stress you out!  You've got this!  You can do it!  And, you may even be able to gently educate family and friends about your life without gluten or whatever food issues you may have.  Make something gluten free, nut free, whatever you have to avoid, to share with others at your gathering so that they can literally get a taste of what it's like to be you and the wonderful options that you still have when it comes to food.

The ladies at our November potluck

And, during this busy holiday season, don't forget to take time out to just breathe and enjoy the moment.  All those precious little moments that are the true reasons we get together.  Yeah, the food during the holidays and exchanging gifts at Christmas are fun and a big part of it, but the really important part of the holidays is to just be together and enjoy those little moments that you will cherish the rest of your life.  For some more great advice about "Practicing the Pause" from Cupcakes and Yoga Pants, you can read some helpful tips here.

Wishing you and yours a very safe and Happy Thanksgiving!

Gluten Free Hot Spinach Artichoke Dip

Ingredients:

2 - 8 oz packages low fat/fat free cream cheese (softened)

1 can quartered artichoke hearts (drained)

1/2 can cut spinach (drained)

2 T fresh minced garlic

1 C shredded mozzarella

2/3 C shredded parmesan

Stir all ingredients together in a 1.5 quart or 2 quart crockpot or a medium baking dish until well mixed.  In crockpot, cook on low until heated through, stirring occasionally to prevent sticking. 

If baking in the oven, preheat to 350 degrees.  Sprinkle top with more parmesan.  Cook on middle shelf for 15 to 20 minutes.  Parmesan top should be light to golden brown.

Serve hot with gluten free baguettes, corn chips or gluten free crackers.