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| 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.
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| 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
