What a Difference a Year Makes

Hello from the frigid Heartland!  Okay, so this photo is a bit misleading.  It was actually taken in June, 2011.  That was an important day in my life.  It didn't seem like it at the time, but that day was the start of some disturbing new and serious symptoms of my as yet, undiagnosed Celiac Disease. 

I'd had other symptoms throughout the years leading up to this, but most of them I never even realized were symptoms.  This day in the above photo, however, was very significant.  For a couple of months leading up to this day, I'd been having problems with hives.  I mentioned them in a previous post.  These hives were not small, itchy bumps, but large, itchy welts.  I pretty much had them nearly 24/7 for almost 3 years!  My poor skin was so raw and damaged from so much scratching.  I tried not to, but that didn't work so well.  Benadryl was every day medication for me.  But THIS particular day, beginning not long after this photo was taken, I had a minor anaphylactic reaction.  I say minor now, but at the time I was scared to death! 

 

 

This photo was taken not 20-25 minutes after the first photo.  Now, I know my sunglasses cover my eyes in the first photo, but you can still see the major difference in how I look between these two photos.  That first time, my husband took me first to the ER where they directed us to Urgent Care because my breathing wasn't affected.  At Urgent Care they gave me a shot of Prednisone and a prescription for a week's worth.  The next time this happened, I went to my regular doctor's office.  My doctor was on vacation, but the doc I saw was very concerned and very helpful.  It was actually amusing to watch the expression on her face as she watched the swelling that had begun at my lips move up my face.  Not seeing this for myself, I picture that I looked like a more mild version of Eddie Murphy's "Nutty Professor" when he transforms from the skinny man into the character's overweight self.  This doctor got me in to see the only allergist in town for testing with him.  He was a joke.  He was rude to me from the beginning.  He treated me as though I was wasting his time.  And, apparently I was, because the poke tests all came out negative.  Though the next day I was extremely ill due to the serums used in this testing.  My regular doctor checked different things.  We thought that maybe my hypothyroidism was causing some of the reactions, but that proved to be a "no" as well.  Three years of back and forth, Benadryl, blood tests, anti-anxiety meds, Prednisone, welts and periodic, worsening anaphylactic attacks.  THREE YEARS!!!!  I can't believe how patient, understanding and supportive my husband was during this time.  He knew I was afraid and frustrated and depressed.  I was having more and more anxiety attacks at the most inopportune times (aren't they always, though?!).  And there were NO answers in sight!!!

 

 

And it just kept happening!  Each anaphylactic reaction was worse than all of the previous had been.  I began having minor versions of these reactions almost weekly with an eyelid swelling or a portion of one of my lips.  I felt like such a freak!  They were pretty much getting used to it at work.  I know that my co-workers were frustrated with and for me that we couldn't get any answers.  Then, exactly one year ago today I experienced the worst anaphylactic reaction that I've ever had.  This one hit hard and fast!  My entire face was swollen, with my eyes nearly completely swollen shut, my vocal chords were being squeezed shut and I began to have difficulty swallowing.  I was able to still breathe freely, but I knew that this time the 3 Benadryl I took weren't going to get me out of this one.  Because I was still able to breathe freely, my husband drove me to the closest Urgent Care, which is about 20 minutes from where we live.  My sister-in-law is a nurse, so he was on the phone with her much of this time as she was instructing him on the best way to take care of me.  She insisted that if my breathing became difficult he should take me straight to the ER.  My breathing was still fine, so we went to Urgent Care. 

 

Once at Urgent Care, I was given a shot of Epinephrine.  I didn't get better.  In fact, slowly, I was getting worse!  The UC doc told me that they'd called an ambulance and were sending me to the ER.  By now I was drooling a little because of not being able to swallow much at all.  Still breathing, though.  I tried to get them to let my husband drive me instead of sending me via ambulance, but she told me that if they did that my chances of making it to the ER alive were slim to none!  That was an eye-opener for both Dave and me!!!  Neither of us, despite how my body was reacting, believed it was as serious as that.  I think my sister-in-law was the only one until the UC staff, to realize the severity of the attack.  In the ambulance on the way to the hospital when we were still about 10 minutes out all of a sudden I couldn't catch my breath!  It felt like someone was sitting on my chest, the pressure was so great and my lungs hurt from trying to breathe!  I couldn't swallow, couldn't breathe, was drooling all over myself and started to panic!  Corey, the paramedic working on me in the ambulance kept his cool, spoke to me in a calm, reassuring voice as he gave me a shot of Epinephrine in my iv.  I quickly felt relief as I was able to breathe and my swallowing was less difficult.

 

At the ER, with the administration of more Epinephrine, Benadryl, Prednisone, anti-nausea meds as well as something to help normalize my heart-rate, I finally started to improve.  The kept me in the ER for several hours before deciding that I was out of the woods and it was safe to let me go home.  So many times in this past year I have thought about that day.  It is still all so clear to me now a year later as it was that day.  This severe reaction, as frightening and awful as it was to go through, was the catalyst to finally getting a correct diagnosis!  My doctor was contacted by the UC staff and the next day his office called me to say that, though they were grasping at straws and didn't want to get my hopes up, there was something that they hadn't tested me for yet.  Celiac Disease.  I'd only ever heard of it because of my cousin and his daughter.  I had no idea that it was hereditary or what, exactly, it was.  A year ago this week the rest of my life began.  It can sometimes be very frustrating and scary and tiring, but it has been and is leading me to a life of health.  As healthy as I can be living with two autoimmune diseases.  Immediately upon hearing even the suggestion that this might be what was wrong with me I began researching.  Now that I know what the issue is, I have power!  I have the power to do something about it.  To take my own health into my own hands and do everything in my power to get and stay healthy.  Of course, living with Celiac Disease isn't as simple as that.  I am hyperaware all the time!  I have to be!  Even then, this is an autoimmune disease.  I can do everything right and my body still sometimes rebels.  I can do everything right and still sometimes accidentally ingest gluten without realizing it.  Short of living in a bubble and cutting all contact with anything or anyone who isn't gluten free, I can't fully protect myself.  But I sure am doing everything I can to keep myself as protected as I can.  A year ago I was full of fear and apprehension and so exhausted from the journey that led to my diagnosis.  A year later I am full of hope for a future, armed with knowledge and tools to be as healthy as I can be.



Original Gluten Free Recipes

Gluten Free Mexican Chicken Casserole:

 

Ingredients:

 

5 to 6 frozen skinless/boneless chicken breasts

2 - 8 oz jars of gluten free chunky salsa (your choice of mild, medium or hot)

1 - 8 oz can gluten free refried beans

1 C finely shredded Mexican blend cheese

1 C (or more depending on preference) gluten free corn tortilla chips, crushed into bite sized pieces

Shredded iceberg lettuce

Diced tomatoes

Sour Cream

 

Put frozen skinless/boneless chicken breasts in 5 qt crock pot and top with a jar of gluten free chunky salsa. Cook on low for two hours, then cook on high for 2 more hours. Remove chicken from crock pot and shred with fork. Pre-heat oven to 325 degrees. Place shredded chicken in bottom of large casserole dish. Top with a jar of gluten free chunky salsa (salsa in crock pot will be too soupy to use). Spread 1 can of GF refried beans on top of the salsa layer. Crunch up GF corn tortilla chips (to taste) on top of all of the three layers. Finally top it all off with 1/2 C finely shredded Mexican blend cheese. Place on top shelf in oven for 30 minutes. Let cool and then enjoy. May top with shredded lettuce, diced tomatoes and sour cream.

 



Gluten Free Tuna Melt:

 

Ingredients:

 

1 can gluten free tuna in water (drained)

1/4 C gluten free mayonnaise

1 tsp gluten free yellow mustard

2 T fresh chopped chives

1 tsp celery seed

Fresh cracked black pepper to taste

Udi's Gluten Free white bread

Provolone Cheese

 

Blend all ingredients except the bread and cheese in a medium sized bowl with a fork until well mixed.  In a toaster used ONLY for gluten free bread, lightly toast the bread.  After toasted, top with 1/2 C tuna mixture and slice of provolone.  Place in microwave for 1 minute or until cheese is melted. 

 

 



 

 

Gluten Free Strawberry Cheesecake:

 

 

Ingredients:

 

2 - 8 pkgs low fat cream cheese (softened)

1/2 C organic coconut palm sugar

1/2 tsp organic, gluten free real vanilla or almond extract

2 large eggs

Round gluten free graham cracker style pie shell

1 can gluten free, organic fruit topping

 



Preheat oven to 350 degrees. Combine with blender in medium bowl cream cheese, organic coconut palm sugar and organic, GF real vanilla or almond flavoring. Beat until smooth and blended. Add two eggs, one at a time, beat until light and creamy. Pour into a GF Graham cracker style pie shell. Place on middle shelf in oven and bake for 55 minutes. Cool completely then top with your favorite organic, GF topping.

Celiac and the Holidays

As with all of 2014, the recent holidays were a learning and growing experience for me in the first year after diagnosis.  First thing I have to say is that I have an amazing family and I am so grateful for all of them!

We'll divide this into two categories: Holidays at the Office and Holidays with Family.

Holidays at the Office:
Well, this was a very hard time for me.  I don't imagine it will be any less awkward in the future, but this first year of experiencing it while gluten free was a big eye-opener and not much fun at all!  The company I work for has a Thanksgiving potluck each year.  I have always loved this.  In 18 years with the company, this is the first year I was unable to participate.  I just decided it would be way too much work and the probability of cross-contamination was too great to risk it.  So, I brought my own lunch to eat by myself in the break room, away from where the Thanksgiving celebration was being held.  Even though many of the people at my office are aware of my health issues and the fact that I have Celiac Disease, it still was confusing to many of my co-workers as to why I wasn't participating.  I had to explain several times why I wasn't participating and that, no, there wasn't much I could eat and I'd have to ask people what the ingredients in their dishes were.  Don't get me started on the desserts that would make my mouth water and I wouldn't be able to eat.  Yes, I could have brought my gluten free meal down and sit with everyone else, but somehow, that thought made it worse.  I'd sit there eating my safe meal and watch everyone else eat all of this delicious food that I can't have any more.  That just seemed like unnecessary torture to put myself through.  So, instead I ate in self-imposed isolation.  Not fun, but the lesser of two evils.  A side note here - having Celiac Disease can be extremely isolating at times.  Especially times like these.  The Christmas holiday season hasn't been much better.  Vendors send lots of holiday goodies to the buyers at my office each Christmas season, which are shared with all of the office employees.  Well, almost all of them.  Of course, again, there was very little of these special treats that I could enjoy.  Once in awhile someone would come by every cubicle offering a new holiday treat to each employee.  Each time I couldn't just politely decline, because the person offering the treat would tease that it wouldn't "ruin your diet" or "just one won't hurt".  So, I would have to explain each time why I couldn't eat whatever the treat was.  Some of the treats were very hard for me to have laying around the office because they are treats that I love - for example a box of baklava, Christmas cookies and candies.  It was so hard to be around all of that and not be able to eat it, but having instead to watch everyone else.  Yep, this is my life now.  Most of the time I don't feel sorry for myself.  There are certain adjustments I simply have to make and I have to keep myself in a particular frame of mind.  I have had so many people tell me that they don't know how I do it and that I must have awesome will power to be able to say no to all of these wonderful foods.  Many go as far as to add that they, themselves, couldn't do it.  I maintain that it has absolutely nothing to do with will power and more to do with self-preservation.  I know how my body responds to gluten - it just isn't worth it!  Even the Office Christmas Party I had to forego.  Well, part of it, anyway.  The evening began with everyone getting together at a local restaurant for a light meal and party.  The restaurant is not one that offers gluten free options, so my husband (who is not Celiac or gluten free) and I had to decline that part of the party.  We were, however, able to participate in the second half, which was a Christmas concert at our local Orpheum Theatre.  That was wonderful, but we missed out on the fun everyone else had at the dinner part of the night.  Between Thanksgiving and Christmas was our office Secret Santa.  For quite a few years I headed this up until a few years ago when I partnered up with another woman at the office.  We've had a lot of fun these past few years trying to come up with new ways to make it new and exciting for everyone.  The past couple of years we did small treats for the first two out of three weeks with a Christmas decoration as the final, larger gift.  This year, I had to offer to continue to help organize and plan, but I asked that we find a different small gift theme to do in place of the treats.  I let them know that if we did treats I wouldn't be able to participate due to my dietary restrictions.  I hated that as the only G-Free person I was dictating what we do.  Thankfully, my co-organizer and our HR lady who helps us, too, agreed and so we were able to come up with some different and fun ideas.  I did have to bring my own food to the final luncheon, but that worked out ok.  My department lunch was a bit tough on me as we had it at a pizza place that doesn't offer gluten free pizza.  I had a salad while everyone else enjoyed the pizza and pasta buffet.  But, being gluten free didn't stop me from participating and having fun.  I got through it by making jokes and teasing my co-workers that they had to have extra of everything that I couldn't have "for me".  LOL.  They were actually all pretty great about it.  They were compassionate and understanding.  Of course, most of them witnessed the more severe of my symptoms of the last three years, so they know how my body reacts to gluten.

Holidays with Family:
My sister-in-law graciously hosts the family get-togethers each holiday mostly because she has the largest house to be able to hold us all, but also because I know she enjoys having her family there.  No one in my husband's family has Celiac Disease or is gluten free.  I'm the only person who has to be on this specific special diet.  Rather than put extra work on my sister-in-law, who had enough on her plate as it was, I prepared my own gluten free meal at my house and packed a plate of it to take with me to her house.  This wasn't a big deal, considering we live about a half a mile away from them.  The food was still warm when we got there.  I also made a homemade, gluten free strawberry cheesecake for everyone.  Instead of using refined sugar, I used organic coconut palm sugar with vanilla.  It made the cheesecake a brownish color, but it tasted wonderful!  I also used organic, pure almond extract instead of the pure vanilla extract.  YUM!  Okay, I'm getting distracted here.  LOL  It was actually pretty awesome to be able to eat my own gluten free Thanksgiving meal while sharing and celebrating with my family.  It made me feel normal and not like a freak!  Christmas was similar.  After Christmas Eve services, we all met up at my sister-in-law's for food and gift exchange.  That was a lot of fun!  I did bring my own gluten free sandwich and munchies because the food they were serving wasn't gluten free, but most of the meal on Christmas Day was gluten free, so I was actually able to eat a lot of what everyone else was that day.  Truthfully, the holidays with family really felt normal and not like I was separate from everyone else just because I couldn't eat everything that they could.  My having Celiac and being gluten free was almost a non-issue, which I loved!  That's not to say that people weren't sensitive or aware for me, they most definitely were.  It is just to say that, unlike work where being gluten free separates me much of the time and prevents me from participating in certain activities, with family I was able to just be Margo.  Not Margo with Celiac Disease, which, of course, I am, but it didn't prevent me from any part of celebrating with my family.  Before Thanksgiving I'd been nervous about how the holidays would go.  My family took all of that apprehension away.  In short - I LOVED the holidays with my family!!!!  I couldn't have felt more normal or at home than I did.  For that I am so grateful!  If I was a part of a less understanding and compassionate family, I wouldn't have had that.  I am truly blessed to have the family I do!

Hidden Gluten

Let's discuss hidden gluten in every day products.  I've been eating gluten free since January 13, 2014.  Other than a few minor slip ups where I ingested gluten accidentally, I've done really well being vigilant with eating gluten free.  The more I learned throughout the year about celiac the more foods I've been open to.  Knowledge is power!

The frustration is the hidden gluten. One example from early in 2014 - I was hungry between work and home.  We have a half hour commute and stopped to pick up some groceries on the way home.  I bought a couple of meat sticks thinking that, surely they wouldn't have gluten, right?!  In the car I ate a bite of the meat stick before deciding I really should look at the ingredients.  I should mention that this was before I was in the habit of reading ALL ingredient labels on all products that I purchase.  Sure enough - there was one of the dreaded phrases, "contains wheat".  In a meat stick?  Really?!  I ended up with a few hives for two days afterward!

Another place I hadn't thought to check was my laundry soap and dryer sheets.  One day this past Spring while doing laundry I noticed there were a few Bounce™ Dryer Sheets left in the box.  I had thought they were causing me to break out in hives awhile back, before I found out about having celiac so I had discontinued using them.  That weekend, feeling confident that I was doing so much better I decided to use them again.  I didn't check the box for ingredients, but everything that I wore that was put through the dryer that weekend seemed to be making me break out in hives again.  More than just the few that I'd had before when ingesting small amounts of gluten.  I went to the website to see if there is gluten of any kind in their products, but had difficulty finding any information as to if it does or not.  Meanwhile, I just have to adapt to what my body is telling me and stop using products that cause me to break out.

At times it feels so overwhelming because there is constantly something to be watching for, not just in what I eat or drink.  There is just so much to learn.  I've learned that even a tiny crumb of something with gluten can make my stomach feel like it's going to explode.  That feeling on top of feeling bloated and making many not fun trips to the bathroom can last for many hours or even days!  That is exhausting, too.

Make up and face moisturizers had to be thrown out because of gluten.  I have been able to find gluten free make up and moisturizers, cleansers, etc. through various gluten free sites online.  Amazon is the easiest place for me to find these products because they include a great many different brands of gluten free products!

So, the learning process continues as I removed things from my home that make me sick or gave me hives.  It has been a challenge, but it has been a growing experience for both me and my husband as we've learned to  live within the confines of my disease.  Actually, once you've learned to live with it, it doesn't feel as constricting as it had in the beginning.  In fact, the more I learn about Celiac Disease and living gluten free, the more freedom I have and the more control I have back over my life and health.

Celiac Disease Symptoms

What IS Celiac Disease?

So, just what exactly IS Celiac Disease?

According to the Mayo Clinic in Rochester, MN, "Celiac disease is an immune reaction to eating gluten, a protein found in wheat, barley and rye.
If you have celiac disease, eating gluten triggers an immune response in your small intestine. Over time, this reaction produces inflammation that damages the small intestine's lining and prevents absorption of some nutrients (malabsorption)."

CD is an auto-immune disease.  It is hereditary, not communicable.  People who have an immediate family member (parent, sibling, child) who has CD have a 1 in 10 chance of having it themselves.  Often people who have CD also have one or more additional auto-immune diseases, most often hypo or hyperthyroidism and/or type 1 or type 2 diabetes.  People who have CD are at higher risk for colon cancer and should get regular colonoscopies for early detection.  Celiac Disease can cause weight loss, bloating and diarrhea.
There is no medical treatment or cure for CD.  There is no medicine you can take to make it better.  With CD you are literally eating to be healthy.  The absolute only treatment at this time for CD is to live a completely gluten free lifestyle.  This is not only eating foods that are gluten free, but finding out what household cleaners, make up, toothpaste and so many more things we take for granted every day which contain gluten.  

Celiac Disease is not something that you grow out of once you have it.  This is a life-long condition.  If you have been diagnosed with CD, since this is hereditary, as stated earlier, your immediate family members (parents, children, siblings) will want to be aware and watch for symptoms in their own health.  For a list of symptoms, see my next post that lists the most common issues associated with CD.

If you have not been diagnosed, but believe you may have CD ask your doctor to test you for CD.  If your family doctor is not very familiar with Celiac Disease, as many are not since this is a highly underdiagnosed disease and has no available medical treatment, ask your doctor to recommend a specialist for testing.

There are many different websites available for more information on Celiac Disease and testing as well as how to follow a strict gluten free lifestyle.  Here are some that I recommend if you are searching for answers:

http://celiac.org/

http://www.mayoclinic.org/diseases-conditions/celiac-disease/basics/definition/con-20030410

There are also many informative blogs out there written by people living with Celiac Disease.  Here are some that I regularly keep up with:

http://jennifersway.org/myblog/
http://glutendude.com/gluten-free-blog/
http://prettylittleceliac.com/
http://celiaccorner.com/

There are so many other great blogs, Facebook pages and webpages for you to check out on your own in your quest to better understand and learn to live with Celiac Disease.

Happy New Year 2015!

I was intending on posting something today about what Celiac Disease is.  This week, however, my thoughts have been elsewhere.  My Celiac is uppermost in my mind, no matter what is happening in my life.  It has to be.  If I am not vigilant, I could accidentally ingest gluten and make myself sick or worse.  It's not as if you can just "take a break" from being Celiac and living gluten free.  Your body would pay some severe consequences if you did!

This week my mind has been with my grandma.  She is a feisty 92, nearly 93 year old woman who has lived through more than you and I can imagine in her almost a century of life.  The stories she has - I've been hearing them my whole life.  I think, actually, that she is a big part of the reason that history fascinates me.  Because she lived so much of it and has told me firsthand accounts of things that she has witnessed or experienced.

G'ma lived on her own until just this past Fall, when we moved her into an assisted living facility not far from where we live.  That's pretty amazing when you think of it - to still be living on your own when you are 92 years old!  Not long after moving into the assisted living facility we got news that her sister-in-law, my G'pa's "baby" sister had passed away.  Aunt Lorene was about 10 years younger than my G'ma.  G'ma's outlook kind of took a downward dip after Aunt Lorene's death.  She's so sad that she's still here while so many dear family members and friends who've been such an important part of her life for so long have passed away.  I think she's tired of being the one left to say good-bye to all of the rest.  In  this past year, she also learned that her only surviving sibling, my Aunt Jean is in early stages of Alzheimer's.  This has not only been a tough year for me going through all of the major life changes that my Celiac diagnosis has brought about, but it has been a really tough year for my G'ma as she's gone through such severe life changes herself.

This past Monday G'ma ended up going to the ER due to suspected tia (mini-stroke).  She's had a few of these over the past several years, none of which have greatly affected her, though I do believe each one has chipped a little away at her short term memory (she does not have Alzheimer's, but she does have a hard time remembering new things, dates of events and she gets confused now and then - partly due to her hearing loss and partly just because of normal old age issues).  While at the ER (my mom took her there and was with her the entire time), G'ma mentioned that she had a sore throat.  All of her tests came back fine, but since she had a sore throat the doc decided to do a throat culture to be sure she didn't have strep.  While they were waiting for the results of that test, G'ma complained of a heaviness in her arms.  She didn't feel right.  I was on the phone with my mom at this time and she and I decided that the doctor needed to know about this immediately.  They admitted G'ma to the hospital and we later learned from her new test results that she did, in fact, have a small stroke (more than a tia).  She has been in the hospital since then. 

This dear lady doesn't understand why she's still here.  Don't get me wrong, she doesn't have a death wish, but when you get to a certain age and have buried so many people you love it has to wear on you.  We've really witnessed her go downhill so quickly in the past few months.  We were hopeful that she might be able to live in assisted living for a couple of years, but that is not to be.  When she is discharged from the hospital she will be moved immediately into the nursing home.  Thankfully, the nursing home is in the same building as the assisted living where she's been.  The staff on both sides have been simply amazing and so loving toward not only G'ma, but our whole family.  They have bent over backward to make her comfortable and get her involved and, frankly, in order to help her stay in assisted living, they have gone over and above what they should to help her to stay there.  We've got nothing but good to say about the amazing staff there!  I know they are just about as sad at the progression as we are.

And, yet, even with everything that my G'ma has been through this year, she has been so concerned with me and my health issues.  She's asked questions about my Celiac and what it means for me and has shown concern over what I can or cannot eat.  That's been pretty humbling for me.  At this time, she is still with us and is going back and forth between feisty and sad to still be here.  I think there are many emotions warring inside of her.  Yesterday she got a very special visit from her sister, who's daughter brought her.  That closed out the year on a lovely note and I think that is the note that I will close this post on.

Whatever is happening in your life, embrace the ones you love, find strength and hope in them and keep going.  The struggles can be almost unbearable at times, but we don't have to go through them alone.  Happy New Year and may God richly bless you and yours in the coming year!