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. 

Looking Back One Last Time

Here we are on the last day of 2018 - the last few hours before the new year rings in.  I've been considering a lot this past week just what my last blog post of the year would be about.  I don't know about you, but this year has brought some major changes in my life, at work, at home.  Many things stretching me to the point where I thought I may break, yet, I didn't.  I overcame many obstacles and, not on my own.  

The start of this year at work really stretched me close to my breaking point.  In truth, I came really close to throwing in the towel.  But I didn't.  Not because I'm stubborn, though, trust me, I am that (I ain't a ginger for nothing!).  No, if it had just been my own stubbornness, I would have walked away from a job and a company that I've worked at for the past 2 plus decades.  Thankfully, my boss, the HR VP and my co-workers talked me off the ledge.  They showed me support, encouragement and they believed in me and my ability to get through the tough times.  If not for all of them, I would have walked away from a company I love working for.  Their belief in me - even through the meltdowns, and, there WERE meltdowns - brought me through the worst of the stressful times that everyone in the company experienced through the last year of major changes.  I didn't think I could handle the pressure the job was putting on me, that I was putting on myself.  My mental and physical health suffered for it and I know that I'm not the only one who did.  Even when I felt like I was failing, the people I work with believed in me, put up with me and showed me unwavering support.  You never know what kind of a team you truly are a part of until you go through a seemingly impossible situation together.  We weathered through together and not a one of us gave up!  Not on each other, not on the job, not on the company.  And it is beginning to pay off and things are calming down.  I'm beyond grateful to still be with this company that has been so good to me for the last 22 1/2 years!  And it is all because I work with an amazing group of women who wouldn't let me give up, sometimes smacking me over the head with hard truths that I needed to hear.

 What does all of that have to do with Celiac you may ask?  Well, if you are like me, stress can trigger some nasty Celiac symptoms - without the added problem of being glutened!  Even in all of my worst moments of stress and self-doubt, NOT ONCE did I have a full-blown panic attack!!  This is HUGE for me!  And it was NOT because of me!  It was because of an awesome support system I have in the people I work with.  They even love being guinea pigs when I try new gluten free recipes!  LOL  We all need support and understanding in every aspect of our lives.  Because our jobs take up a large portion of our day to day lives, having a great team of co-workers can make such a huge difference!  And, if you can manage the work stress, that will help with mental and physical exhaustion that can complicate your Celiac symptoms.

I also turned 50 in April.  Wow.  I can't believe I am now actually old enough for my very own AARP membership - I have the card, I can prove it!  I thought that turning 50 would depress me, but it is funny - I actually feel more invigorated and alive than I have in a very long time, maybe ever!  January 15th will mark 5 years since my diagnosis and going gluten free.  This past week notwithstanding (I had a migraine that started Christmas Eve and then morphed into a sinus infection later in the week - still getting over it at this time), I actually feel the healthiest I have ever been in my life - overall.  I now not only know what it means to actually feel good, but I have more good days than not good days.

I have grown in so many ways this year and have experienced things I never thought possible.  Mid year the local Celiac Support Group I attend lost it's leader and sponsor and my friend, Susie and I stepped in to keep the group going.  It hasn't been easy and we've had our ups and downs, but we've endured and have kept it going!  We've met and spoken with so many people who have Celiac or have family or friends living with it.  People who were amazed that they weren't alone!  People who wanted to learn more and to be a part of a group of people who are in this journey together.  I think that is what I am most proud of in 2018.  Neither Susie nor I are natural born leaders.  But we both saw the need and felt the urgency to keep this group together and to be able to expand and broaden it's reach to be able to help more people.  We've had some members move away and welcomed new faces as well as those who've been there right along with us.  It has been the most rewarding experience I can remember in a very long time.  

May God bless and keep you as we say farewell to 2018 and greet 2019.  Happy New Year!

10 Celiac Perks

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

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

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

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

Cookies, pies and cakes, oh my!

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

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

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

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

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

#2. Becoming my own best advocate.

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

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

 

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

2018 Iowa Celiac Conference

On Sept 29th, my mom, Edie and Siouxland Celiac Group co-leader, Susie and I attended the 2018 Iowa Celiac Conference in Marion, Iowa. It was a small conference, but we were happy to get to meet and mingle with other Celiacs from not only Iowa, but even LaCrosse, WI and Ohio. We arrived Friday evening, checked into our room at the Microtel Inn and Suites in Marion and then decided on a destination for supper. The pamphlet about the conference listed several restaurant options that offer gluten free menus. We selected Biaggi's Ristorante Italiano. Oh my! Were we ever glad we chose to eat there! The food was amazing and neither Susie or I had to ask many questions of our server, as she was very knowledgeable and gave us all of the information we needed up front once she found out that we were gluten free for health reasons before we could even ask. My mom, who does not have Celiac Disease and doesn't have to eat gluten free had her pick of what she wanted out of the regular bread basket, while Susie and I each enjoyed a gluten free flatbread that was prepared to order for us. I was nice and shared a piece of mine with my mom, who is always game to try any of my gluten free food! The meals were huge and we each ended up taking a to-go box home with us.

My mom, Edie, me (Margo) and Susie outside of Biaggi's

Mom (Edie) and Susie by the fireplace.  Mom's steak and fries can be seen in this photo.

This picture doesn't do this amazing gluten free flatbread, which we dipped in EVVO and grated Parmesan, justice

Both Susie and I ordered this amazing sea food and gluten free pasta dish

There were only three vendors at the conference, which, Jill (one of the event's organizers) said is the fewest they've had. She told us that there were initially more who were going to be there, but didn't show up. That was disappointing, but it was still a great experience and I did check out the three vendors who were there and bought some items from one of them.

There were three speakers. The first was Dr Hilary Jericho who is the Assistant Professor of Pediatrics and Director of Pediatric Clinical Research at the University of Chicago's Celiac Disease Center. She brought us the latest on Celiac standards for testing and research. A lot of the information she provided was stuff that both Susie and I already knew, having both lived with Celiac for several years now, but it was still interesting and informative.

Judy Fitzgibbons spoke next. She has been a registered dietitian for more than 40 years and has worked for the past 15 years as the in-store dietitian for Hy-Vee in Cedar Rapids. She gave us information on Gluten Free labeling laws and what to look for as well as what to avoid. Susie and I were able to speak with her for a few minutes as the conference was wrapping up.

Our last speaker was Kristen Richardson, a Psychiatric Nurse Practitioner who created a Holistic Mental Health Care Private Practice in 2005. She led a thought-provoking discussion on the emotional side of Celiac Disease. Kristen gave us a fresh perspective on things, as well. So often it is easy for us, as Celiacs, to get our feelings hurt by well-meaning people who say or do the wrong thing. We often feel like they are being mean or purposefully disrespectful of what we have to live with. Kristen pointed out their point of view. They don't live with Celiac Disease, so it is difficult for them to understand what we go through. Each person looks at things through their own scope of experience. So, people who don't have Celiac tend to look at it through what their experiences with illness or possible food issues have been. They aren't purposefully, in most cases, trying to not include us or say or do ignorant things. They just don't have the experiences we do. It's funny because I've said many times that having Celiac Disease has made me more compassionate and understanding toward other people facing health issues. I haven't thought about the fact that other people also need to be treated with compassion and understanding, not just those of us facing chronic health problems. My mom spoke a little bit with Kristen after her portion of the conference.

We also listened to a panel discussion on Growing Up Celiac. Two school aged girls spoke about their experiences being kids with Celiac and their parents spoke about what they have to do each year in order for their kids to be kept safe from gluten at school. I hope to have a future post that will include first-hand experiences from a couple of young school aged girls that I know and from their mom.

Susie and I spoke with Betty and Jill, the two event organizers. These ladies lead the Waverly, Iowa Celiac Group. They didn't even know there was still a group on our side of the state. Jill explained that there used to be several Celiac Groups in the Western Iowa area, but one by one, they ended up folding. They were very happy to hear about our group and the hopes we have for expanding the reach of our group to help a greater area on the Western side of the state. Jill was able to share some tips and encouragement with me and Susie and she and Betty even suggested that maybe we would be able to have the 2020 Iowa Celiac Conference in Sioux City! Both Susie and I were stunned at that! There is a lot we would have to do in order to accomplish this, but I believe it can be done. Note - this is not something that is set in stone yet. It is something we are looking into and will work with the larger group in hopes of seeing this happen. I will keep you up to date with information as planning forges ahead.

The gentleman we met from LaCrosse, WI shared with us their group's newsletter and I mentioned something about the possibility of our group starting a quarterly newsletter to help keep our people informed. Jill told us that any Celiac Awareness or group activities/events that we hold could be included in the state newsletter, as well, so that our reach can touch many people throughout the state of Iowa!! They had little samples of several recipes included in this cookbook that they had put together years ago. This is actually the second edition. It sounds as if a third edition is soon to go to press! I was happy not only to taste the samples, but to buy a cookbook for myself. I also picked one up to include as a giveaway prize at the November meeting of our local Celiac Group!!

Okay, this post has gotten really long. It has been a long time since I've written much, so I may have gotten a bit carried away. It has been fun sharing with you our experiences from the conference..

Susie, me (Margo) and Edie (my mom)

To Blog or Not To Blog

The last few weeks I've struggled with doubts about myself and whether my voice makes a difference.  I started this blog in 2014 at the suggestion and encouragement of a friend from church.  She said that I could help others by sharing my experiences and what I've learned since my Celiac diagnosis.

I've worried that this blog and what I've been doing with my local support group (more on this topic to come later this week) hasn't really reached or helped anyone.  It's so hard to know if you're making a difference when you receive little to no feedback.  Are people actually reading my posts?  Are my posts helping anyone at all?

Anyone who knows me knows that faith is an extremely important part of my life.  Today, the message my pastor gave at church hit home in a big way with me.  It was about getting rid of the toxic thoughts that can cripple us, make us feel worthless, stop us from moving forward and doing what we are called to do.

WOW!  WOW!  WOW!  I needed this so badly!!  I've been feeling like I've been failing to help others.  Wondering who would listen to or even want to hear what I have to say.  See what I did there?!  I made it all about me!  That right there is a HUGE part of my problem!!  I didn't begin this blog, become Siouxland Celiac for myself.  I did it to help others, to raise awareness and to be an encouragement and support to others living with Celiac and other non-Celiac related health issues that require people to be gluten free.

When I began to focus on myself - all I could see were my own shortcomings.  I let toxic and stinkin' thinkin' derail me from what I was trying to do.  These toxic thoughts created crippling doubt and fear in me.

Today's message helped to wake me up and shake off those toxic thoughts and to remember why I write this blog, am a part of my local support group and post via multiple social media outlets.  It is for YOU!!!  Because YOU are important!  What you are going through is real, can be scary and overwhelming and no one should have to feel all alone in this!

So, here am I - in all of my imperfections - saying that I'm here for you.  I'm not here so that you can support me, but I want to be support for you, share information with you and offer encouragement that you are not in this alone.  As long as even one person needs me and can benefit from what I have to say, I will continue to write.  

The Best Things in Life are Free (Gluten Free, that is!)

                               

A couple of months ago I started asking my followers on Facebook and Instagram to contribute for my Thanksgiving post.  While many bloggers are posting recipes and how to safely navigate the holidays with family and friends when you are gluten free, I decided to go a different direction.  I put out the idea that "The best things in life are gluten free." and I asked my followers to list some of their favorite things that are naturally gluten free.  

My goal is to show that there is so much more to holidays (and life) than just food.  In the Celiac and Non-Celiac Gluten Sensitivity world, we face the holiday season with trepidation and anxiety because of shared meals with non GF family and friends.  I want to focus on the positive things a holiday can bring.  There are so many negatives about living with Celiac Disease or any other autoimmune disorder or chronic health condition.  But, we're still alive and as long as there is breath in our bodies, there are beautiful and positive things out there for us to cherish and enjoy.  Every.  Single.  Day.  I didn't get a lot of responses to my requests, however, those who did reply provided some incredible thoughts on a variety of wonderful gluten free things to enjoy.  So, without further ado, here they are:

**Note: throughout this post I will be including hyperlinks to pages that are relevant

to this post and the people who participated by posting their comments.

I am including these links because I believe their pages are helpful

 to the Celiac and gluten free community.**

A few of my own favorite naturally gluten free things are: children laughing, waking up to the aroma of coffee brewing, kitty snuggles, relaxing with a good book and a cup of hot tea under my favorite throw blanket, reuniting with old friends, spending time with loved ones, connecting with others in the Celiac and gluten free community, joining my New Hope (church) family each week to worship and grow together, bear hugs, candles, an over-sized sweater fresh out of the dryer, kicking off my shoes at the end of the day.

Edie 'Smilee' Place Orris (Facebook): Spending time with my dear daughter! 

(Siouxland Celiac note: Thanks, Mom!)

mile_high_celiac (Instagram): Jumping in leaf piles, enjoying a hot cup of coffee in the crisp fall air, seeing the beauty of the trees changing color as far as the eye can see.

The mountains laying in wait for the impending snows in late October.  The monarch butterflies traveling through as they fly south for the winter...the gaggles of Canadian geese making their stops and honking overhead, echoing through the still chilly air as they fly in their perfect "V" formations...

Walking through the outdoor shopping mall with the smell of pumpkin spice in the air...seeing friends meet up outside a coffee shop, overhearing their excitement and creativity, exchanging recipe ideas and oo-ing and ah-ing over each new addition or twist the next person adds to the imagined flavors of their recipes for Thanksgiving...looking into confectioners windows and watching the candy makers begin to work on the new seasonal treats...breathing the first crisp breath of the new fall air.  Collecting flower seeds for the next year...collecting leaves for those projects 🍁🍂 there are so many awesome things that ONLY happen in the fall 💓🍂🍁

(Siouxland Celiac note: don't forget to check out her YouTube channel Life Minus Gluten.)

martafocker (Instagram): Even though my Canadian Thanksgiving is well past I will still comment on What is Naturally Gluten Free (that I love).  That would simply be WATER!  Water water water!  I love Water SO much I can't even explain without sounding like a freak.  Obviously humans need water to survive but I love to drink it and bathe in and swim in it!  I don't need to add anything to my water to drink it, it does have to taste like NOTHING though (no weird aftertaste).  All sources of water are Gluten Free...tap water, bottled water, lake water, ocean water, pool water...ditch water 😜  And of course Bath Water...aaahhh think I will take a bath right now cause I'm thinking about it 😃💦 but I really wish to go for a swim in Water but it's too cold...bah!  Wait: I should make a cup of tea with it...Naturally Gluten Free as well 😋  Decisions, decisions. 

(Siouxland Celiac note: I LOVE my followers!!!  And @martafocker's comments bring to mind a charity I learned about a couple of months ago at church called Charity Water that works to bring clean water to Third World nations who have no clean water sources.  I will be writing about this organization in the next few weeks, so stay tuned or check out their website for yourself here.)

Cupcake and Yoga Pants (Facebook): Pumpkins 🎃, bonfires 🔥, and ghost 👻 stories! 🎃

(Siouxland Celiac note: you can check out Cupcake and Yoga Pants blog here.)

Jen Harold (Facebook):  Spending time with relatives we don't get to see often enough, a game of cards, veggie trays, and the joy that the season of togetherness brings.

(Siouxland Celiac note: 💖💖💖💖 well said!)

AlafiaMarije Wright (Facebook):  The soap and other skin care products I make for our company, God's Green Earth have started healing my family and are a blessing to many others and the beauty is that these non-toxic and made from scratch products are naturally gluten free and don't hurt people, animals or the 🌎  God really blessed us with this ability and this business.

(Siouxland Celiac note: for more information about God's Green Earth natural skin care products click here.)

rachelwjj (Instagram):  God's fresh grace every morning!!!  And, for someone who despises the cold weather, the promise of spring time 🌞🌞🌞the ability to have a job, gluten free food on the table, roof over my head and family to share it with 💓😘

(Siouxland Celiac note: this wraps it up pretty good, don't you think?!)

Do you have your own favorites to add to these great naturally gluten free "best things in life"?  Please be sure to comment with your favorites.  I want to hear from YOU! 👉

And, since it IS Thanksgiving, I'll give you a couple of links for some great recipes from two of my favorite people, my friends Kallie and Tina.

For Kallie's gluten free Pumpkin Pie bon bons visit her YouTube channel here.  I'm going to make these tomorrow!  I can't wait!!!!

For Tina's gluten free Dressing recipe visit her Better For You Bakery page here.  I use her mixes and recipes a lot.  In fact, I'll be making decorated sugar cookies this weekend using her  gluten free Sugar Cookie mix and her GF Buttercream frosting recipe!!  

Happy Thanksgiving and may you feel God's blessings and love through out this holiday season and always.

Celiac Awareness Day 2017

Me (Siouxland Celiac) and my biggest supporter, my mom (Edie "Smilee" Orris)

Today is National Celiac Awareness Day.  Yes, I know what you're thinking - Isn't May Celiac Awareness Month?  Yes, yes it is.  But today, September 13th is National Celiac Awareness Day.  I can't help but reflect on the journey that has brought me to this point, the people and friendships I've gained along the way and how far I've come from pre-diagnosis until now.

It was just before summer of 2011 that I experienced what would be the first of too many anaphylactic attacks.  I know that not everyone is familiar with what an anaphylactic attack is.  Here is a pictorial example both pre attack and post attack.

Waiting for my hubby to get off work so we could have date night.

Approximately 20 minutes after the "pre attack" picture was taken

I'm not sure what exactly caused that attack.  I thought I'd gotten bitten by some kind of bug.  My face got swollen and my voice got choked off so that I couldn't speak above a forced whisper.  My husband, instead of taking me to dinner, took me to Urgent Care where they gave me a shot of prednisone and sent me home with a prescription for more prednisone to take orally over the next few days.  Then began the hives.  Horrible, large, angry pink welts that appeared over just about every inch of my body.  For 24/7 for over 2 1/2 years, I would be afflicted with these nasty, itchy blots.  My health deteriorated, brain fog set in, I was spiraling downward in depression, feeling like I was losing my mind.  I began to gain weight without diet changes, had major issues trying to focus and concentrate.  I began having increasingly alarming panic attacks at work, driving in the car, in the grocery store, etc.  I couldn't sleep.  I didn't know it at the time, but I came very close to losing my job at this point in my life because my lack of concentration caused me to make rookie mistakes and my attitude ranged from irrationally irritable to completely apathetic.  I bounced back and forth between my regular doctor, an allergist (who treated me 1 - as if it was all in my head and 2 - as if I was wasting his time), Urgent Care, tests, treatments and no answers.  I should have bought stock in Calamine lotion because I was going through it like crazy.  I would slather on the pink lotion before going to bed at night only to wake myself several times each night due to scratching the hives.  I kept my fingernails very short, yet I was still scratching so much in my sleep that I woke each morning with scratches on my arms, legs and torso and dried blood in my nailbeds.  I just wanted an end to all of the madness.  My doctor was worried, my husband was worried, my mom, co-workers, boss, church family - all worried.  What was going on with me?????

Then, on January 12, 2014 I had an anaphylactic attack that hit fast and hard.  It began with a slight tingle in the corner of my left eye lid.  I went to the bathroom and downed 3 Benadryl tablets, looking in the mirror as I did so.  There was no swelling, yet, but I knew it was on the way.  In the two minutes it took me to get to the bathroom, take the Benadryl and return to the living room, my face went from zero swelling to being so swollen that my eyes were nearly swollen shut, my lips were enormous, I couldn't speak and I was having difficulty swallowing.  My breathing, however, was fine.  Urgent Care had helped me before, so, since I was able to breathe, we headed there.  After about a 20 minute car ride, we arrived at Urgent Care where I was immediately given a shot of epinephrine.  Instead of getting better, I continued to get worse.  The PA at Urgent Care called for an ambulance.  When I told her (as best I could, considering I couldn't speak above a forced whisper and I was drooling all over the place) that my husband was in the waiting room and he could take me, she said that she wasn't even going to let me leave AMA (against medical advice).  She said if she let my husband take me to the hospital I would die on my way there!  I was shocked and had a hard time believing this.  She was adamant!  Thank God for that!  She was also right.  In the ambulance, still probably about 10 minutes away from the hospital, I quit breathing.  Talk about panic!!!  The EMT in the back of the ambulance with me, Corey, gave me a second shot of epinephrine and I was able to breathe again.  Corey and Nigel, the EMT's, are the only names I remember from that awful day.  They were my angels!  At the ER, I was given another shot of epinephrine, a shot of prednisone and a shot of Benadryl as well as an anti-nausea med and something to normalize my heart rate.  The entire episode began a little before 2:00 in the afternoon and we didn't get home that night until after 11 pm.  It was after 10 pm before the ER doctor finally decided it was safe to send me home.

The next day, my doctor's office called me to tell me that my doctor had one more test to run.  He was grasping at straws, but there was a test he hadn't tried yet.  I was desperate and hoping against hope that whatever the test was would be the answer we'd been searching for.  He wanted to test me for Celiac Disease.  I had actually heard of it, though I knew nothing about it.  I already knew of members of my extended family who had Celiac Disease.  When my doctor learned that, he became very anxious to test me because he knew that Celiac Disease is hereditary.  After a blood test revealed elevated gluten levels and I have one of the genes for Celiac Disease, my doctor advised me to research Celiac Disease and to get on a gluten free diet.  I had no idea what gluten was, let alone how to eat gluten free.  I was relieved to have an answer, but overwhelmed at how little I knew.  I was on my own.  There is no medical treatment for Celiac Disease.  It isn't something you can grow out of, there is no cure.  It is an autoimmune disease.  When I started learning about the over 300 possible known symptoms of Celiac Disease I realized that I'd been living with this monster probably since I was a toddler.  So many things about my life and health finally made sense.  

Unfortunately, when I asked if there were any other tests that I needed to have, my doctor said that there were not.  It was only after I'd been gluten free for several months that I learned that the gold standard for Celiac Disease testing and diagnosis is an endoscopy.  By the time I learned that I needed to have this to verify that I have Celiac Disease and to see how much damage there was to  the villi in my intestines, I'd have had to introduce gluten back into my diet for 6 to 8 weeks so that testing could be accurate.  Knowing that gluten nearly killed me, I chose not to do this.  I was terrified of ingesting any amount of gluten for even a day, let alone 6 to 8 weeks!!  I had already seen many health improvements and I hadn't (still haven't) had another anaphylactic attack since going gluten free.  The hives were gone and haven't returned.  I was sleeping better, the brain fog was lifting, my depression and stress were improving and the panic attacks were fewer and farther between.  I know that I should have had this testing.  Because of my experience, I tell everyone who thinks they may have Celiac Disease - do NOT go gluten free until AFTER you get the confirming endoscopy!!!!  This is extremely important! I don't want others to go through what I've gone through.

Now I am approaching my fourth year since diagnosis.  I am still in the healing process.  I continue to be amazed that I now know what it feels like to truly feel good.  It wasn't until about a year and a half or so, after my diagnosis that I'd had a day where I realized that I really and truly felt good.  I cried!  I didn't remember EVER having felt that good at all before in my life!  MY. ENTIRE. LIFE.  I didn't always feel sick, but I had so many different issues I was dealing with that even a good day before was NOTHING like the good days I have now.  Do the good days happen all of the time or frequently?  Not really.  Most days are not bad, but that doesn't mean I necessarily feel good.  Yet, "not bad" is a good thing in my life.  I've had so many of the symptoms through the years (by my calculations, I've experienced 73 out of 300 possible symptoms).  Even as I am typing this I am dealing with muscle spasms in my right bicep and swollen, achy joints.  While many areas of my health improved quickly, many others are taking much more time.  Getting a Celiac diagnosis doesn't mean that all of your health problems will clear up if you stick to a 100% gluten free lifestyle.  Not by a long shot.  I still have times where my body simply shuts down and says, "No more!".  If I am too stressed out, not getting enough sleep, not getting enough nutrients (a tricky one, since Celiac Disease means that my body has a really hard time absorbing the nutrients it needs) I can have days (in a row, not just once in awhile) where I simply cannot function.  I am living with an autoimmune disease, after all.  Actually, two autoimmune diseases, because I also have hypothyroidism.  But I do the best I can to take care of myself.  I avoid gluten and take pains to be safe.  Do I always succeed?  Nope.  Just recently I was with family and we ate at a restaurant where I've safely eaten gluten free items from their menu before.  I got complacent.  I didn't run through my usual spiel about being gluten free for health reasons, asking how the food is prepared, is there a separate prep space, ingredients & fryers used or are any seasonings used and do they contain gluten, etc.  I am usually so careful.  That day I was not.  And it cost me!  By the time we left the restaurant I was feeling bloated and uncomfortable.  By that evening my stomach was cramping horribly and I was miserable and spent a lot of time in the bathroom due to nasty diarrhea that lasted for many hours.  I spent the rest of the evening in bed while everyone else ate and visited with each other.  Well, between bed and the bathroom.  It felt like every 10 minutes I was getting up and running back to the bathroom.  I know better and I didn't take the precautions I normally do.  And I paid the price for it.  I don't blame the restaurant.  I didn't make my needs clear to them.  I blame myself for that.  That is why I'm not naming the restaurant here.  It wasn't their fault.  It was my own responsibility to let them know my needs.  That is why I tell people all the time, "do not take anything for granted".  Speak up!  Be your own best advocate!  No one can advocate for you and your health as good as you can!

#celiacawareness #glutenfreebecauseihavetobe #itsnotafadforme #siouxlandceliac

Until next time - be well.

Siouxland Celiac