Tuesday

April 2013

What Celiac Disease Awareness Month means to me

This is a face of too many misdiagnoses. This is me before I finally had an answer.

My body was wracked and in shambles. Nervous system stressed to the point of strong shaking episodes. I could no longer drive myself more than ten minutes without experiencing massive dizziness and bouts of blurry vision. No food would stay down no matter how much I ate, which resulted in a scary weight of less than 95 pounds. ADHD ruled my everyday, my mind raced constantly, and then there was the pain. A lot searing pain. These things were the norm, and the norm was becoming worse and worse–fast. I thought I would never function in society normally ever again because of what seemed to be eating me alive from the inside out. But I couldn’t find an answer. And I knew I couldn’t go on like that.

I remember feeling incredibly frustrated and ready to give up after doctor upon doctor brushed off my debilitating symptoms, whittling them down to things like stress, “being a college student”, irritable bowel syndrome, anxiety, depression, just “getting older”, and even an eating disorder. Well of course I had an “eating disorder”; food just went in and came right back out…unintentionally! The fact that I saw half a dozen doctors that misdiagnosed me and failed to look for the root cause, (one that isn’t “solved” with a pill) frankly scares me. It scares me more today than it even did back in that moment because at the time, I didn’t realize that I really could have died from this.

Luckily, my parents were able to help me find a doctor who finally listened to all of my symptoms. That doctor turned my life and health completely around in a matter of weeks with the first mention I’d ever heard of Celiac Disease and gluten. While grateful, I questioned why I was not correctly diagnosed when my first symptoms showed as a toddler. I was nearly 21 years old when the diagnosis came, and it came at the breaking point. This is not acceptable to me, and shouldn’t be to anyone.

May is Celiac Disease awareness month. I see it as my moment to shine and be proud of what I’ve overcome. I’m healthy and alive today, living in harmony with my lifelong disease. While I often advocate for awareness throughout the year, I’m taking the special opportunity today to share my story again in hopes that the more we share, the shorter the diagnosis time will become. According to the National Foundation for Celiac Awareness, the average time it takes for someone to be correctly diagnosed with the disease is 6 to 10 years. Misdiagnosis and no diagnosis can cause permanent damage, cancer, and can kill.

Healing can only begin after answers are found. Talk to someone about Celiac Disease today. Read about Celiac Disease on the NFCA website, or follow the links in my Resources page. And don’t forget to hug a lovely Celiac near you

Happy Celiac Disease Awareness Month!

Thursday

July 2012

Dow Goes Gluten-Free!

Pop the bubbly, and get ready to celebrate! (Most likely!)

I’m excited to share some great news for the gluten-free world! Dow has gone gluten-free and has come out with a new vegetable cellulose based food product that closely mimics the texture of gluten in baked goods. It’s plant based and could really bring some new fresh tastes to our plates! Who needs gluten anyway?

I say way to go Dow, and way to go Dad for giving me the heads up awhile back. Since he works for Dow, he navigated me towards the website about the beta product a few months ago. I’m so glad it’s finally hitting the gluten-free community soon! Check out the gluten-free goodness! (I did notice they got some of the gluten intolerance vs. celiac disease facts a little wrong as far as numbers and explanations between the two different reactions go. Celiac is about 1 in 110 these days and gluten intolerance is about 1 in 10 last I read).

What do you think? Will you be trying products containing the new “gluten” replacement? Let me know!

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Monday

June 2012

Thank you, Dad

Sophie, my dad’s other little girl.

In celebrating my wonderful father today on Father’s day, I’d like to share the story of how I came to be diagnosed with Celiac Disease/gluten intolerance, and how my father ultimately found my diagnosis.

Three and a half years ago, my family and I were trying desperately to figure out why my health was in shambles. I wasn’t digesting correctly, was losing weight with no explanation, and had severe depression and anxiety. I felt sick all over and knew something was very wrong with my body. I visited doctors who took one look at me and told me I was simply “overworking” myself as a college student or cracked it all up to IBS and threw depression medication at me. I knew deep down that they were only treating symptoms and feared we would never find the root cause.

One weekend, I was having an especially hard time. I drove home from college and just being around my parents again was comforting, though the health problems persisted. I remember feeling so defeated as I sat cross legged on the carpet with my dad and our two puppies. He listened to everything I had to say about what I’d been going through and made me feel safe, as he always had done. He told me to stay strong, keep my faith, and that we would find what was going on.

The next morning I woke up feeling fairly better than I had been and was in good spirits. I bounced upstairs and found my dad in the kitchen, the smell of fresh brewed coffee filling the room. We talked and he made me a hearty breakfast–a delicious ham and cheese filled omelet–while he taught me about how to make sure the eggs don’t stick and how to season for great flavor. After eating the omelet, I felt fantastic. For once, I felt my stomach wasn’t too bloated to eat any more. My dad made me some toast since I was feeling alright.

About 5 minutes after eating the toast, I began to feel the anxiety creep over my body again as my stomach started to ache. My dad watched me transform from being happy and energetic to scared and sick all over again. We couldn’t figure out what we had done wrong. Soon after, he talked with his doctor about his worries and talked about how I used to have a problem with wheat when I was a baby. The doctor had said that I would outgrow the issue, despite the rashes and irritation that plagued me. He wondered if I had never outgrown the issue, especially after the recent toast issue.

I ended up going on a gluten elimination diet for an extended time after the doctor mention that I might have Celiac disease. After a while, I was told to put gluten back in my diet to test for a reaction. I had been feeling amazing since cutting it out and was reluctant to try it again. I loaded up on a glutenous pizza and beer binge to test, which proved to be an absolute terrible idea the next day. I had a classic Celiac reaction and really didn’t feel like getting out of bed at all. I was diagnosed soon after and made a full recovery.

My father and mother have always done everything they could to try and find the root cause of my health issues, and I am forever grateful for their love, support and persistence with everything that I’ve gone through. Thank you Dad, for helping me better myself and save my health in the process. I’m happy, gluten free, and 350% better than I was before thanks to you. Thank you Mom, for going out the same day we found out the issue and helping me find all the food I could eat. You’ve made me the woman I am today, and there are no words I can say to express how much I love you both. I can’t ask for better parents and wish I could be home for Father’s day, and that I could’ve also been home for Mother’s day. My dad is traveling today, and I’m wishing him a very safe and happy trip. I’ll be thinking of him the whole time.

Have a blessed Father’s Day and don’t forget to say I love you.

~~~~~~~~~~~~~~~~~~~~

Sunday

April 2012

May is Celiac Disease Awareness Month!

(statistics from NFCA & CDF)

As of this past February, I have been Gluten free for 3 years. I can’t put into words how dramatically my life has changed as a result of getting on the right diet to treat my reactions. My life has more clarity, I am properly digesting food and am no longer malnourished due to malabsorption of nutrients. Switching to a Gluten free diet has definitely been a blessing for me.

The bad thing about all of this is that my diagnosis took about 20 years. During that time, I was increasingly and increasingly plagued by various health issues including ADHD, nervous system disorders, forgetfulness, malabsorption, unexplained weight loss, indigestion, depression and anxiety. After about 2 weeks on the Gluten Free diet, all of my symptoms completely reversed. On an older episode of the Hold the Gluten podcast (by the brilliant Maureen Stanley), it was said that the average time for a diagnosis of Celiac Disease was 10 years. Spreading awareness will help decrease that ridiculously high diagnosis time and will help the search for a cure. This May, being Celiac Awareness month, let’s spread the word like wildfire.

For more information regarding the importance of a Gluten free diet, symptoms of Celiac Disease/gluten intolerance, going gluten-free and getting a diagnosis, see a few of my previous posts: Importance of Gluten-Free, Symptoms, and Basics of Diagnosis.

Some great additional resources:

Have you been diagnosed with Celiac Disease or Gluten Intolerance?

Share your story here!

Thriving happily without gluten, soy, peanuts, and legumes.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Thursday

January 2012

Series: Going Gluten-free Part 1: Symptoms

http://www.dreamstime.com/green-wheat-ear-on-a-field-imagefree3264459

The first step in diagnosis is listening to your body.

About three years ago, I was in rough shape. I had an avalanche of symptoms, but no doctor was able to pinpoint the source of my suffering for quite some time. After getting down to about 94 pounds, my diagnosis finally came after I did an elimination diet and brought the findings to my doctor (who was little to no help after giving my official diagnosis). Having gone through this journey of healing, I can tell you firsthand how important getting a diagnosis is. If it feels like World War 3 just broke out in your stomach and you’re dealing with slews of other seemingly unexplainable symptoms, you might be Gluten Intolerant or have Celiac Disease.

Gluten is the protein found in wheat, barley, rye, and usually oats due to cross contamination in the farming fields. When someone who has Celiac Disease ingests even the smallest amount of gluten, mayhem occurs and the body responds by attacking itself with an auto-immune response. Gluten wipes out the villi in the small intestine creating lots of problems for adequate digestion, absorption, and balance of flora in the gut. Gluten has even been shown to affect the skin, brain, cardiovascular system, and nervous system. Below are the most common symptoms I have seen regarding gluten intolerance and CD.

I’m sad to say that I’ve correctly told 6 acquaintances I was sure they had Celiac Disease or Gluten Intolerance before a medical professional did. Though it is getting better, the average amount of time it takes for a correct diagnosis is about 10 years. Mine was 20 years. If you think you have Celiac Disease or Gluten Intolerance, don’t be discouraged if a doctor is unwilling to test you for it. Keep looking until you find a doctor with knowledge on the subject and start keeping a food diary. As much as I don’t like the idea of self diagnosis having had to do it twice for myself (life threatening soy allergy and celiac disease/gluten intolerance) sometimes it is a necessary measure as the medical community is falling short in these areas. For a list of diseases and conditions associated with Celiac Disease and Gluten Intolerance, click here. A;so see my Resources page for more links and information.

When dealing with symptoms, attitude is key. Remember that the pain is temporary and you will get better. There are tons of great gluten-free foods out there for the picking and eating. The hardest part is behind you. I’ll be shouting out my favorite gluten-free products in the next post along with how to get through the diagnosis.

What do you think? Have you experienced any of the above symptoms? Do you have a diagnosis story? Share it below! I’d love to hear from you. Also feel free to send me an email at sprinklesandallergies@gmail.com

(I am not a medical professional and this is not medical advice. Please consult with your health care professional to determine what is the best course of action for you. And of course, listen to your body!)