✨ The 16 Year Journey No Celiac Should Ever Go Through ✨



💁🏼‍♀️I generally talk about my kids journey with Celiac Disease 99% of the time... after all, as a mom, naturally the focus turns to them, right?


🌺But, today I speak out in hopes to help even one of you out there with your journey. Hoping that my 16 years of suffering, countless doctor visits, treatments, medications and even a career change will help raise awareness and even lessen the time of someone else to get diagnosed correctly. 


👇🏼By the end of this podcast episode, I think you will agree with my doctor that I am officially- unofficially diagnosed with Celiac Disease!


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Show Notes:


I have always had stomach issues, so much so that I thought that was normal. At age 21 came down with chronic migraines. I was throwing up and passing out daily.


No doctor knew what was wrong. Chiropractors, neurologist, acupuncture, injections, medications, you name it… I tried it… with no success. I mean don’t get me wrong, I would feel real good after having morphine given to me at the er through iv.


But honestly I was miserable. I was serving a volunteer mission for my church at the time. I actually had a tough time… here I was serving others around me, doing good in the world and yet I was so sick. 


I ended up coming home early from my 18 month mission. Just feeling sorry for myself every day as I laid in bed wishing and praying and pleading for the pain to go away. I was so loopy… I was becoming a vegetable from all of the medications I was taking.


I decided one day that I was going to stop taking every medication that the doctors had prescribed. I decided every day that I was just going to do one thing a day… that I would reach out to someone I loved or that I had been thinking about. Either through a card or through text and if they were close enough, I would stop by to visit them. Once I decided that I wasn’t going to focus on me every minute of each day… my life started changing… changing for the better. I wanted to be my best self… and I knew that I had to step up my game if I wanted to achieve any goals that I had for my life. 


Prior to my mission, I was a Dental Assistant. I loved my job, I worked for the best dentist and I was on track schooling wise to be a dental hygienist. Well, after returning home from my mission and trying to go back to work as a dental assistant I quickly realized that was definitely not the career that my body could handle.


I couldn’t do bright lights, and the position on my head and neck was excruciating to suffer through with my migraines. Literally the pain and blurred vision, never got relieved. So after a few days working in this condition, I knew I needed to switch careers. One of my co workers that I love dearly … told me, you know what I think would be an incredible career?


To be an Ultrasound Technologist. The minute she told me that, I was thinking YES that seems like a dream. To be in a dark room all day… yes please! Any of you Migraine sufferers out there can appreciate a dark room like no other. 


As I was trying to figure what my new life looked like, I was also being bounced around from doctor to doctor with yet more uncertainty that I had walking in. I saw chiropractors, neurologist, pain management specialist, I went through seminars, injections in my skull, in my shoulder, and yet still nothing was helping me long term.


Maybe a few days of relief, but then right back to the horrible pain that would literally lay me flat on my back and frustrated with myself and the world. 


I learned a huge life lesson, that doctors are only ‘practicing medicine’ no 2 people on this earth are a like. They try to see the problem and then think back on schooling, training or experience to treat and help patients.


If they hadn’t seen a case just like mine and had a success story, how would they know how to help me. So I tried to remember that as I went from doctor to doctor trying find a helpful solution.


So I did switch my career dreams of being a dental hygienist to doing ultrasounds in a dark room. 


I tried to eat healthy. Several people told me that I should go gluten free, but I really didn’t even know what that meant. I ‘tried’ a few times and failed miserably. I would eliminate breads and pasta for a few days and the migraine didn’t go away so I decided that wasn’t my answer.


I didn’t need to go gluten free. Mostly because it seemed like a daunting task, even though deep inside I felt that I really should be gluten free. 


Ultimately, I tried for years to be careful in what activities I did. I wouldn’t play sports. I would work out without exerting too much effort in fear of really making things worse. The sauna seemed to help.


I had to learn consequences, for example, if I went to Disneyland, and not even go on the rides but just walking around in a large loud crowd for a day … that would send me to my bed for at least a week.


Not an ideal lifestyle for a someone in their early 20’s. I mean aren’t those supposed to be the best years of your life?


I managed and tolerated and even accepted my new. 


Years passed and I loved doing ultrasounds and especially loved it when I started working for an OB/GYN and was scanning babies. I felt that I was fulfilling my calling in life. To this day, I am so grateful for my job, and though it was not my first career choice, I am so grateful I was led to it… 


I got married and started having children. Now this was though. Managing work, pregnancies, newborns, and of course migraines. It was not easy. It was very hard for me to even hold my babies. The pain in my shoulders and neck would send me to my bed crying so many days.


I began getting regular injections to help dull the pain. 

Chanelle was my 3rd child and she was tiny from birth. 5 lbs is not very big. And when the nurses handed her to me for the first time, I thought for sure she was just a doll… she seemed too little to be real!


But she was a dream and we loved her so much. As she got older… she didn’t grow at a fast speed at all. If I was ever concerned the doctors would reassure me that she was just a petite girl. She always had a hard time going to the bathroom, but then again so did I so I figured well, she is following in my footsteps, small and with stomach issues.


It wasn’t until one day she was out jumping on our trampoline with my other kids and I hear the loudest scream. Chanelle came running in and was carrying her whole ponytail in her hand. It fell out from the scalp. I started crying with her. Every emotion… I thought one of my other kids had pulled it out. Then looking at her scalp, I thought maybe ring worm or even alopecia.


I decided something was a miss. so I took her to the doctors. They examined her and ruled out ring worm and alopecia. For the next two weeks her hair fell out in huge clusters, leaving not too much left on her head. As we went from specialist to specialist trying to find the cause, the doctors thought it was cancer, leukemia, kidney failure…


Each result would come back as negative. I mentioned to the doctor a few times that my brother and niece had celiac disease, but they were convinced that was not her issue. After all, hair loss isn’t a common known symptom for celiac disease and for sure she would experiencing diarrhea, not constipation. 


After so many tests and blood drawls with no answers and Chanelle even began throwing up after meals. I demanded that they test her for celiac disease.


Finally, They did! and it is no surprise to you all listening today that her numbers were off the charts and she was officially diagnosed with celiac disease after her endoscopic biopsy. 


This process took us about 5 months  from the time she lost her first clump of hair on the trampoline.  There were countless doctor visits, co payments and quite the emotional roller coaster thinking of the possibilities.  


She silently and internally suffered for most of her little life. It wasn’t until the obvious hair loss that anyone took me seriously or that I even demanded we get answers.

 

Once Chanelle was diagnosed, I decided that it was a perfect time for me to go gluten free with her. Since I had always thought that would help me. I didn’t consider it would be the culprit and the cure.


But I thought, this would be a good thing to ensure my Chanelle was safe and that I would hopefully feel better in the process. 


So that is when I started my long over due gluten free journey too. For about a year I was about 95% gluten free. I knew it was helping me.  It wasn’t immediate at all…. But slowly I started feeling better. Not as sluggish and my migraines were substantially better. I was so happy with this choice.


I don’t know if you are like me but I tend to forget things. Like, I wasn’t that sick, or migraines aren’t that bad, and even started to doubt my years of suffering. I think as women we were given that gift from God the gift of forgetfulness, so that we would have more than one child.


Seriously, I believe it. So anyways… my journey when I would periodically have gluten by choice or now if I am gluten still to this day… I get left shoulder pain within about 5 minutes and followed by a horrific migraine that lasts a few days. Needless to say the memory of all of my suffering years comes back with a vengeance. 


After one year of being gluten free, I decided that I should get officially diagnosed. So I went in to be tested. Now I didn’t fully understand what I needed to do to get diagnosed other than blood work and the endoscopic biopsy.


This is one huge reason I speak out on this ALL the time. The doctor told me that I needed to eat gluten everyday for 6 weeks and then I would get the biopsy. Well, that lasted all of one time of eating gluten. I was sooo sick, I decided this was the worst idea ever. But I still wanted to get the biopsy done, so I did and of course it came back inconclusive. As I have been gluten free for an entire year. 


I know that I am the carrier of the gene, I was extremely sick for over 15 years and now that I am gluten free, my symptoms and migraines have minimized and I think it is safe to say that I am a high functioning gluten free mom. 


My current doctor is a great listener and she added to my medical chart that I do have Celiac disease. With all of my history and all that I have endured… it is safe to say that I have celiac disease. Is it an official diagnosis, No, and that is why I claim to be officially- unofficially diagnosed!


Looking back…What I would have done differently? I would have demanded that the doctors tested Chanelle for celiac disease the first time I suspected it. I was already doing vials of blood, why not this panel too? And once Chanelle was diagnosed- I should have got tested before I went Gf.


Celiac disease affects 1% of healthy, average Americans. That means at least 3 million people in our country are living with celiac disease—97% of them are undiagnosed. University of Chicago…


‘6-10 years is the average time a person waits to be correctly diagnosed. 

5-22% of people with celiac disease have an immediate family member (first degree relative) who also has celiac disease.


The celiac disease diagnosis rate may reach 50-60% by 2019, thanks to efforts to raise public awareness of celiac disease. (Source: Datamonitor Group, 2009)

Gluten-free sales reached more than $2.6 billion by the end of 2010 and are now expected to exceed more than $5 billion by 2015.’ 

-BeyondCeliac.org

The effects of gluten Vary in every celiac. That is what makes it so tricky to diagnose. If you suspect that you or someone you love has celiac disease… I highly recommend you see a doctor and encourage them to test you. For more info on how to get tested for celiac disease listen to Podcast #2 How to get diagnosed with celiac disease.


But ultimately, 

You have to want it. And you have to want it bad. 

Just wanting to feel better isn’t enough. You have to want to help your body heal more than that chocolate cake, more than Costco pizza. Every Single Time. You need to choose YOU!


What gets you so pumped for life. Sheri and her Wednesday night soccer keeps them up at night. What keeps you up at night. What gets you so excited you can’t sleep? Find your why.

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