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.

What Is This Thing Called Celiac?

Last week we went back to basics with Gluten Free 101.  If you haven't had a chance to read that post, yet, you can read it here.  Now that you have a bit of an understanding of what gluten is and what it means to be gluten free, let's talk about Celiac Disease.

Just what IS Celiac Disease, you may ask?  Is it the latest trendy disease du jour, as too many people think?  Is it a totally fabricated "disease" that exists only in the minds of those who believe they are afflicted with it?  Is this a new disease brought on by the multitude of genetically modified grains that have become commonplace in our daily diets?  The answer to each of these questions is a resounding NO!

Though people are now becoming more aware of Celiac Disease because of so many Celiac advocates working tirelessly to educate the public and raise awareness, Celiac has been known about for much longer than most people realize.  According to the University of Chicago Celiac Disease Center, a Greek physician named Aretaeus of Cappadocia who lived in the first century AD wrote about "The Coeliac Affection".  To read more about the history of this disease click here.

Celiac Disease is an autoimmune disorder that occurs in people who carry the HLADR3-DQ2 or HLADR4-DQ8 genes.  Studies show that approximately 90% of Celiac Disease patients have the DQ2 gene.  This autoimmune disorder is hereditary.  If you have a first degree relative who has been diagnosed with Celiac Disease, you should be tested, too, as you are at higher risk to have it yourself.  A first degree relative is a parent, sibling or child.  This is not a communicable disease.  You can't get it by being exposed to someone else who has Celiac.  If you don't have one of these two genes, you will not develop Celiac Disease.  In fact, not everyone who does have one of these genes will develop Celiac Disease at all.

There have been and still are many studies trying to determine what, besides the ingestion of gluten, exactly triggers the genes to turn into Celiac Disease.  For more information on these studies, check out these links www.cureceliacdisease.org and www.beyondceliac.org.

The tall villi are healthy, while the smashed nubs (also villi) are from Celiac Disease damage caused by gluten.

In someone who has Celiac Disease, the ingestion of gluten causes damage to the small intestines.  The damage occurs to the intestinal villi, tiny finger like protuberances that help you absorb the nutrients your body needs.  Think of the insides of your intestines as lined with tiny pink shag carpeting.  Roughly 1 in 100 people worldwide have Celiac Disease.  Unfortunately, of that number, according to beyondceliac.org it is estimated that around 83% of Americans living with Celiac Disease are undiagnosed or misdiagnosed and thereby, untreated.  

Symptoms can range all over the place from intestinal, neurological, dental, even mental.  One of the reasons that Celiac Disease is so difficult to diagnose and so under diagnosed is because there are over 300 known possible symptoms of this disease.  For a comprehensive listing of symptoms click here.  To give you an idea of some of the symptoms, here are a few that I've suffered with chronically throughout my life: extreme lethargy (often mistaken for Chronic Fatigue Syndrome), severe bloating and abdominal cramps, chronic diarrhea (these are most often mistaken for IBS or Irritable Bowel Syndrome), constipation, delayed puberty (late starting my period - first one was at 12 and then nothing more until I was 15, then very irregular for much of my life), panic attacks, infertility, brain fog, trouble concentrating and focusing, hypothyroidism diagnosis, hives, migraines, anaphylactic attacks and many more.  You can read about more of my personal experience from the first blog post I wrote here.  

Me during my first anaphylactic attack in 2011.

This was just 20 or so minutes before the photo above.  Major reaction!

If a first degree relative (as I talked about earlier in this post) has been diagnosed with Celiac Disease it is very important that you get tested, as well.  There are blood tests that you can take looking for antibodies in your blood as well as genetic testing to see if you carry the DQ2 or DQ8 genes.  The gold standard in testing for Celiac Disease, however, is the endoscopy.  Even if you have a blood test that shows you likely have Celiac Disease, it is extremely important to have the biopsy through an endoscopy done.  Unfortunately, I wasn't told this and received my diagnosis through blood testing only.  Due to my most severe symptom being life-threatening and the fact that I'd been gluten free for several months before I learned about the endoscopy, I chose not to have it done at that point.  The reason is that you MUST be still consuming gluten before and through testing!  Your results will not be accurate if you have stopped ingesting gluten prior to testing.  If you have stopped eating gluten before testing, you have to go back on gluten for 6 to 8 weeks prior in order to have accurate results.  The biopsy is considered the gold standard in diagnosing Celiac Disease because it shows if there is damage caused to your villi.  If there is damage to the villi, you have Celiac Disease.  I am very adamant when I advise people about testing to tell them that they must also have the endoscopy.  Learn from me.  I wish I'd have had the confirming endoscopy mainly because it would have told me how much damage there was to my intestines.  I know that my diagnosis is correct because not only am I not the only member of my extended family to have been diagnosed (at this count, to my knowledge, there are 5 of us with Celiac Disease and several others with Non-Celiac Gluten Sensitivity), but also some of my symptoms cleared up quickly after going gluten free, while others have taken longer.  Now, after nearly 5 years since my diagnosis, I rarely have symptoms unless I accidentally get glutened or let myself get run down and then have a flair up.  

If you are diagnosed, ask your doctor to refer you to a dietitian who understands Celiac Disease and gluten free.  This will be so helpful to you, especially in the beginning when you are just learning.  Finding a local or online support group can be extremely beneficial, as well.  I'm part of both an online Celiac community and a local in person group.  The connections and friendships I have made are invaluable to me.

For more information on Celiac Disease follow these links:

https://celiac.org/about-celiac-disease/screening-and-diagnosis/

https://siouxlandceliac.blogspot.com/2015/01/what-is-celiac-disease_2.html

https://glutendude.com/celiac/celiac-disease-symptoms/

https://glutenfreern.com

Gluten Free 101

Just last week I was in the health market section of my local grocery store where I met a woman who appeared to be overwhelmed and lost as she stared at the shelves with the gluten free products.  As I was taking something off the shelf to put in my cart, she turned to me and asked if I was gluten free.  I told her that I am and asked if I could help her.  We ended up having a lengthy conversation as she told me how she is in process of trying to get a definitive diagnosis, which she believes will end up being Celiac Disease.  She told me that she doesn't even know where to begin in knowing what is gluten free and what contains gluten.  As we spoke and I gave her as much information as I could, I couldn't help but be reminded of myself immediately following my diagnosis.  I felt exactly the same way that she is feeling right now.

Inspired by this conversation with the lady in the store, I am going back to the gluten free basics.  Anyone who has been living gluten free for any length of time will pretty much know all of this.  Tonight's post is aimed more at anyone newly diagnosed with Celiac Disease or who has non-Celiac Gluten Sensitivity or any other health issue that may benefit from eliminating gluten from your life.

To learn what it means to be gluten free, you must first begin by understanding just what exactly gluten is and where it can be found.  Gluten is a protein found in certain grains such as wheat, rye and barley.  When someone who has Celiac Disease consumes foods or beverages that contain gluten, their immune system reacts to the gluten by damaging the villi in the small intestines.  When the villi are damaged the body cannot properly absorb the nutrients it needs and, left undiagnosed and untreated, over time, this can cause many major health issues.

One of the things I've learned over the years is that gluten can hide in places you'd never imagine.  I always look at the ingredients in any product before I buy it.  If there are ingredients that I don't recognize I take out my cell phone and use a free app that I downloaded several years ago called, Is This Gluten Free?  This app works in conjunction with a bar code scanner app.  You can scan the bar code of any product and it will take you to a database to let you know if the product contains gluten or not.  There are times when a product simply isn't in the database.  Best practice to get into - if in doubt, leave it out.  Don't get it until you can learn more about it.  Your health is too important to take unnecessary risks if you don't know if a product contains gluten or not.  If you have Celiac Disease the ONLY treatment option available is to be 100% gluten free!  There is no cheating on this "diet".  That is one reason I hate referring to it as a diet.  It isn't just a diet, it is your lifestyle now.

Many products are labeled as being "wheat free".  Wheat free doesn't mean that the product is gluten free, as wheat isn't the only grain containing gluten.  The biggest thing I wish I'd have been advised to do when I was first diagnosed is meet with a dietitian.  That would have been so incredibly helpful!  I highly recommend that to anyone newly diagnosed.  Meet with a dietitian that understands Celiac Disease and what it means to be gluten free.

There are so many misconceptions about being gluten free.  I'm here to dispel some of those now.  A gluten free diet is NOT a weight loss diet.  In fact, as you heal your gut and begin to properly absorb nutrients, you may actually gain weight!  It is NOT a trendy celebrity fad diet!  Well, okay, for too many it is - but they are people who have no actual idea of the reality of being gluten free.  For those of us living with Celiac and other gluten-related health issues, it is NOT a fad - it is our life!  All gluten free food does NOT taste like cardboard.  There are many very tasty gluten free foods and you can make many regular recipes into gluten free recipes by substituting a few ingredients.  

Something extremely important to remember about eating gluten free, especially when you are newly diagnosed, is that you need to find gluten free foods that will be gentle on your damaged gut.  Foods that will promote healing and not exacerbate the problem.  Don't go crazy trying to find replacement foods for all of the gluten-filled foods you now have to give up.  The more processed the food, the more ingredients and preservatives and sodium and sugar that even gluten free foods have, the worse the product is for you.  It may taste good, but, like any other "normal" processed foods, it is not good or healthy for you.  There are many gluten free foods that aren't any healthier than regular foods even though they are labeled as gluten free.  The best way to aid in healing your gut is to stick to naturally gluten free foods as much as possible, such as fresh fruits and vegetables, fresh meats (again, the less processed, the better - be aware that many meats contain fillers and seasonings, some of which may be derived from gluten).  I buy a lot of organic foods, as often as I can.  I've cut out most refined sugars (I do have a sweet tooth, so I will have a candy bar now and then and have a bottle of soda, too - I'm working on cutting those out for good - slowly, but surely).  I mostly use organic coconut palm sugar.  I love the flavor and it is not as sweet as refined sugar.  There are many sweeteners that are healthier and great tasting.  Using honey, coconut palm sugar, 100% pure maple syrup, unsweetened applesauce as substitutes for sugar in a recipe can make it taste just as good, if not better, than using refined sugar.

A rotation diet can be helpful in healing your gut and showing you what other foods you may have sensitivities or intolerance to, as well.  For more about this check out this post at unboundwellness.com.  To help promote healing in your intestines you want to go easy on too many high fiber foods.  While fiber is good for you, because the villi in your intestines are damaged and need time to heal, too much fiber can be rough on your system.

Celiac Cutie

Remember, even though everything can seem frightening and overwhelming in the beginning, you WILL learn and you WILL adjust to your "new normal".  Give yourself time.  Find a support group - online or in person - or both!  Just being able to communicate with others who are going through something similar who can understand your fears, frustrations and experiences makes this road a bit easier and less lonely to travel down.  Find a dietitian who is knowledgeable about Celiac Disease and the realities of being gluten free.  This is someone who can help you sort out what is safe and what to avoid.  And - be gentle with yourself.  This isn't something that you are going to learn overnight.  You will get through this and maybe next time it will be your turn to help guide someone in the grocery store aisle into this new world of living without gluten.

For more resources on living with Celiac Disease and being gluten free check out the following links:

Beyond Celiac

Celiac Disease Foundation

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 

10 Things I'd Like People to Know About Living With Celiac Disease

Living with Celiac Disease is no walk in the park.  One of the speakers at the Iowa Celiac Conference that took place on Sept. 29th in Marion, Iowa spoke about the emotions of living with Celiac Disease, or any chronic illness, for that matter.  You can read more about the conference from last week's blog post I wrote here.  The biggest thing that stood out to me about this portion of the conference was the truth that people understand things based on their own experiences, not necessarily the way things really are.  People who have never lived with chronic illness can't possibly understand what those of us who do go through.  It is beyond their scope of experience.  So, those of us living with chronic illness end up feeling hurt or frustrated at well-meaning family and friends who just don't understand.  It's not their fault.  They are trying - based on their own life experiences.  That is all we can ask of them.  Having said all of that, I believe that communication helps facilitate understanding between people.  So, in the hopes of fostering some understanding I have put together a list of what I wish people who don't live with Celiac Disease could know about those of us who live with this every day.

I can't just go out to eat with friends or family at the drop of a hat.  I need a bit of notice, especially if plans are to eat at a restaurant that I haven't been to since my diagnosis.  Living with Celiac Disease makes spontaneity extremely difficult.  Fast food restaurants are completely out of the question and you have no idea the panicky feeling I go through before any kind of social event that includes a meal such as a work banquet, wedding reception, etc.

Just because a restaurant offers a gluten free menu or gluten free menu items does not necessarily mean that the food is actually safe for me to consume.  I have to ask my server questions in order to determine if the gluten free food is prepared on shared equipment,  oven, grill, fryers with gluten-filled foods, if shared utensils are used as well as what steps are taken, if any, to prevent cross-contact with gluten.  This is why I require a bit of notice so I can do as much research ahead of time as possible in order to keep myself safe.  Even if the food is gluten free, if it is prepared using shared equipment and utensils, it is not safe for me to eat.

If I have to cancel plans at the last minute (and trust me, more times than I would like, this has and will happen) it is not because I don't want to go, am being anti-social or am in some way upset with you or don't like you.  Nothing could be farther from the truth!  If I have to cancel it is "just" because I'm having a flare up and can't leave the house.  This disease can be very isolating at times.

It is not just ingesting gluten that can cause a flare up of my symptoms.   Flare ups can happen if I'm under a lot of stress, not getting enough rest or have been around anyone who has any kind of illness, even as simple as the common cold.  My immune system sucks!  My body has been attacking itself for decades and sometimes, no matter how careful I am or how well I take care of myself, flare ups happen.

Something as small as a teeny, tiny crumb containing gluten can put me in bed for up to a week with nearly unbearable symptoms that range from raging diarrhea, vomiting,  inflamed and achy muscles and joints,  a severely bloated abdomen that feels like my insides are on fire and going to explode, migraines and so much more.

Believe it or not, I HATE the fact that I can NEVER take a break from thinking about Celiac Disease.  Not for a single minute!  If I let my guard down I can get "glutened" and end up being terribly sick.  And, in my case, my worst symptom is anaphylaxis, meaning my face swells up and my throat closes off (think of what you know about people with a peanut allergy).  That is so not worth letting my guard down for even a moment.  It's exhausting!!

I know and absolutely hate that my disease causes others to be inconvenienced.  Having to put my needs first is difficult for me because it goes against everything in my nature.  When other people are put out because of the constraints of my disease it hurts me because I don't want to be the cause of others being inconvenienced.

All gluten free food doesn't taste like cardboard.  In fact, there is a lot of great tasting gluten free food!  The best gluten free foods (healthiest and best tasting) are those that use minimally processed or un-processed  naturally gluten free foods and ingredients.

It's not a fad or a weight loss diet.  Being gluten free is my medicine!

I've learned that I'm stronger than I ever knew.

#celiacawareness #glutenfree #glutenfree4life #itsnotafadforme #glutenfreebecauseIhave2b #siouxlandceliac