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

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)

What's been happening in my world...

I'm going to go back a few months and fill you in on part of what has kept me away from writing recently.  On Sunday's post that you can read here, I explained the self doubt and fear that has kept me away from writing.  While that has been the main issue, I have also been quite busy!

Our local Hy-Vee Foodstore had been sponsoring and facilitating our group for many years.  I wrote about the night I stumbled onto the group and then became a regular attendee.  You can read about it here in my Celiacs Unite! post.  

As 2017 was nearing its end, the Hy-Vee dietitian who had been leading the group, Corrinna, took a job in another state.  At that time, another local Hy-Vee dietitian, Tessa, stepped up and offered to facilitate the group.  Unfortunately, this was right as the winter weather started to get messy and that didn't make it easy for Tessa to keep the group going.  By May, 2018, she had also taken a different job and would no longer be able to facilitate our group.  Without a leader, I quickly contacted the other regular attendees of the group to see what their thoughts were.  We all agreed that we wanted to keep the group going, that it was important and that we wanted to extend our reach to other Celiacs and anyone else who was gluten free for health reasons who lived even beyond our local Sioux City area.  At this time, leadership fell to me and my friend, Susie.  We worked hard to pull together our first meeting, which was a gluten free potluck picnic in July.

Throughout the summer, Susie and I have taken turns helping our friend, Tina, owner and baker at Better For You Bakery as she has brought her gluten free baked goods to the Sioux City Farmer's Market.  In addition to helping Tina sell her amazing GF treats and mixes, we've also passed out pamphlets and info about Celiac Disease and have met and talked to a lot of people about the disease as well as about our group.  It has been so interesting to listen to other people talk about their experiences with Celiac Disease.  Some have been living with the disease for many years, while others we met were more recently diagnosed.  I was amazed at how many people told me that they thought they were the only person in the area with Celiac and had no idea there was a support group.  FYI - Tina and I will be at the Sioux City Farmer's Market this coming Saturday, Oct. 13th.  It is the Fall Festival and kids are invited to come in costume, trick or treat and participate in various activities, including a costume competition.  Along with her yummy gluten free baked goods and mixes that will be for sale, Tina and I will be passing out treats, including non-edible treats in participation with the Teal Pumpkin Project.  I will have information available regarding the Teal Pumpkin Project as well as information about Celiac Disease and our group.

l to r: Brenda (formerly of Gud n Free), her daughter, Alyssa, me (Margo), Susie (used to work for Gud n Free & my co-leader), Brenda's daughter, Ava and Tina (of Better For You Bakery)

As you can see, it has been a very busy summer!  Besides helping Tina out at the Farmer's Market, Susie and I have been planning and facilitating monthly meetings for the Siouxland Celiac Support Group.  We've been thrilled to have returning members and welcome some new members to our monthly meetings.  We have also created a Facebook Group to be able to stay in contact with one another between the in person meetings.  It is a way to share ideas, recipes, support and encourage one another throughout the month.  You can join the Facebook Group by searching for Siouxland Celiac Group.  This is a closed group to protect the privacy of its members.  To join, you simply need to answer a couple of questions regarding if you have Celiac Disease or another health issue that is aided by a gluten free diet and then Susie or I will approve your addition to the group.

Susie and I have also been fortunate to be able to connect with other Celiac groups across the state of Iowa and, with my mom joining us, even attended the 2018 Iowa Celiac Conference on Sept 29th.  Check out my next blog post for more information about the conference.

Our dream to be able to help many other Celiacs via social media and our local group is taking shape.  With hard work and persistence, I know that we will be able to support and encourage many others living the gluten free life for health reasons as well as raise awareness for Celiac Disease.

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.