My Story

My Story

My big question and the question I get all the time from family, friends and followers is:
What Caused my body after 30 years to trigger my Celiac Disease?
 
I ate pizza, drank beer, indulged in many a wheat item for most of my life and felt just fine… Until one day I didn’t.  That day turned into weeks and eventually into years, 7 years to be exact. I felt powerless to what was happening inside and outside of my body and I felt like I was losing control. The symptoms would come and go, confusing doctors across the board on what the cause was; so time and time again I misdiagnosed.

My Symptoms

Vertigo was the first and by far the worst symptom to hit me, never a day went by that I was not dizzy; I learned to get use to it. But, lucky me, that wasn’t all I was inflicted with, I was also ingratiated with: incessant bad moods (waking up angry and going to bed angry), migraines, brain fog, stomach aches, bloody stool, bloating, cold sores, general nausea, hand tremors, lack of balance, numbness in hands and feet, poor blood circulation, restless leg syndrome, serious depression, and severe lethargy.

For a while, I actually thought I had the sleeping disorder Narcolepsy, but that wasn’t the case either. I detoxed with cleanses, thought I had mercury poisoning, I even starved myself for a bit because I felt better with no food.

Celiac Disease triggered other issues as well like: thinning hair, anemia, malabsorption of vitamins, general body aches and weakened tooth enamel. As time passed the symptoms progressed and got worse, yet the diagnosis was still a big question mark. I was accused of making it all up and told to see a psychiatrist for mental instability. I definitely felt mentally unstable, frustrated and generally pissed off.

Slowly over time I retreated to the comforts of my home and became a hermit. I was known as the chronic canceler because the sickness would come on so suddenly that I would have to break plans at the drop of a hat. I withdrew from family, friends stopped calling and soon it was just me, alone and I preferred it that way. I didn’t have to explain to anyone or pretend to feel ok with a fake smile.

Due to extended periods of time where I wasn’t able to work, I went through my savings several times. I hated the lonely, bitter person I had become and depression started to consume every piece of me. I would be immobile for days, sometimes weeks and by the last two years before diagnosis, it turned into months.

I knew I could not live like this for the rest of my life and the people who were supposed to help me called me crazy, so I retreated into myself and into the bubble of a life I had created. My quality of life had so seriously diminished, I constantly had thoughts of suicide. If I was not such a strong woman, I probably would not still be here today. Which is truly sad to think about, knowing what I know now, that giving up gluten was the simple solution to solve it all.

My Diagnosis

Finally, in November of 2010, a friend of mine invited me to do a focus group for a diet called, 7 Days to Slimdown. This was a food-based diet where the company cooked and delivered healthy meals for 7 days and I had to participate in a spin class every morning. I had no idea how I was going to get up to exercise, when I could barely motivate myself to shower.

Within a few days I had already started to see an improvement. By the end of the seven days, not only did I feel like a new person, I felt stronger than I had in years. For the first time win as long as I could remember, there was no nausea or vertigo or fatigue. I was thoroughly confused on why I was no longer sick.

On the last day of the focus group I was talking to another participant about all the medical problems I had endured up until that point and how baffled I was about my life completely changing in one week. She listened patiently and then said, “you should look into getting tested for Celiac Disease.” My response, ‘For what? What the heck is Celiac Disease?’

For the next week I scanned the internet and read everything I could on gluten-free and Celiac disease. The more I read, the more I realized I had finally figured out what was wrong with me. I went back to the doctor who called me ‘crazy’ and told him to test me… now! Apparently, this time around my feisty nature kept him tight lipped and he took a blood test, which then lead him to taking a biopsy to be sure. Everything came back pointing to Celiac Disease.

I could not believe it, after seven years I had finally figured out what the hell was wrong with me and it was a casual conversation with a stranger that had lead me finally in the right direction. The first thing I did was go to Vegas for the weekend and celebrate. I looked great, I felt amazing and I finally was back in charge of my life. I was better than I had been in years and was ready to live life again on my terms.

GlutenFree isn’t Easy

Going gluten free isn’t as easy as deciding to start eating gluten free food, especially if it is not a choice but a necessity. Living a gluten free lifestyle takes research, constant awareness, and patience. The villi in my intestines had been compromised and malabsorption of integral vitamins and minerals had occurred.
Just because I switched to a gluten free diet, does not mean that all of a sudden I was cured; a huge mistake easily made. I now had a compromised intestine and needed to heal it.

I at first didn’t realize that the supplements and probiotics I was taking were not being absorbed and even though I was feeling generally better, my body was still sick. My first six months I had to get vitamin B & multi-vitamin packed shots in my butt to make sure they were being absorbed. I also purchased liquid vitamins from Whole Foods that I could drop under my tongue for instant absorption. The shots and liquid turned out to be the best options for my body getting healthy quicker.

The first year after diagnosis and going gluten free was by far the hardest. I made mistake after mistake, eating things I assumed were gluten free but were not, like: soy sauce, licorice, french-fries and Bloody Mary mix on football Sundays. I wasn’t tediously reading every label ALL the time or asking enough of the right questions like I should have been, but I didn’t know and the learning curve was huge.

It seemed no matter how much I educated myself on the do’s & do not’s of living a celiac lifestyle, the effects of cross contamination or reading labels, I was still getting sick. That is when I learned that wheat gluten was in more things than I had even imagined,such as, the coating in my multi-vitamin and the main ingredient in my lip balm.

One of the hardest and most frustrating parts about having Celiac Disease and being gluten-free is continuing to get ‘glutened’ after the fact.  Which within the first five minutes looks like this:

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vs what I normally look like

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In the beginning I weaned myself off of sugar, dairy and oats and tried to stay on a whole fresh food diet for the first 3-6 months to help my body and intestines heal. I also started on a really good probiotic to bring the good bacteria into my gut to promote healing. I’d heard from others that after going GF they couldn’t eat dairy anymore or oats or certain GF grains; there was no way I could live without cheese, please don’t make me give up cheese. Giving it all up for a few months instead of the rest of my life was definitely worth it. Little by little I introduced it all back and haven’t had a problem.

I think the weaning process in the beginning is extremely important to not only heal the body, but also to not create any more intolerances with the intestine at such a fragile state. I was already living strictly gluten free, so why not take the extra few precautions and clean the body thoroughly.

Today

Today I’m healthy, happy and here to pass on all the information I can about living Gluten Free & being Celiac-Safe. There is ‘hidden wheat’ in more products than we realize and the battle is an uphill one. Once in awhile I still get ‘glutened’ by something that claims to be gluten free, on social occasions or by trusting in people who are preparing my food to understand the complexities of cross contamination. I can never expect anyone with celiac disease to understand it.

People ask me, how do you stay so thin? Well, while everyone is eating whatever they like, I’m the one in the corner eating from the veggie tray, the only gluten free food available that is generally safe. No matter what people say, eating gluten free is not a fad for those who need it, trust me, it is real and the only way to treat Celiac Disease. Which I am grateful for, that there is a way to treat this autoimmune disease.

Getting back to the original question though… the jury is still out on that and may be for a long while. Maybe my Celiac was triggered in 2003 after a bad E Coli infestation while I was living in Guatemala. My intestines had shut down for two weeks, losing 13 pounds in 6 days. I was sick for about a year after and somewhere along the way Celiac disease reared its ugly head.  

Living in a Gluten Free World

People with Celiac disease still cannot eat, in what is becoming, a gluten free world, without the fear of getting sick… how is that for irony?! I am making it my goal to change that. If a company or restaurant is going to offer a gluten free product, then they need to be responsible if that product makes people or their customers sick.

Many Companies and Restaurants are jumping on the gluten free bandwagon, though the FDA can hold companies at least somewhat responsible, that is not the case with restaurants. There is no one monitoring for safety, there are no regulations set up for kitchens (for front of the house or back), for education about cross contamination, what gluten is, the ingredients that may contain gluten or how gluten free food needs to be prepared.

We have come a long way since I was diagnosed in 2010, but the uphill battle is far from over. I will not stop fighting until Celiacs’ can safely eat the food that is being created for them. Change starts one person at a time and that person is me spreading the message. I am a gluten free pioneer and I am willing to fight for our health.

7 Comments - Write a Comment

  1. THANK YOU SO MUCH FOR POSTING THIS! You made me feel like there was someone else in this world that has felt the same way I have!!! I got my gallbladder removed and a few years later I was diagnosed with Celiac Disease. It has been a learning curve, a change in life and lifestyle but I am finally on the right track.

    Reply
  2. Wow has celiac disease come a long way, sick for almost 20 years, with every diagnosis you could imagine, took me to almost dead before they figured it out. With a complete cross country move and a new doctor who LISTENED to all my symptoms, finally figured it out! All the doctors I saw in Toronto don’t know what day it is, never mind what an illness is.

    Glad it is such a new healthy “diet phase” for so many people as it has brought on such an influx of real food!!

    Reply
  3. Wow has celiac disease come a long way, sick for almost 20 years, with every diagnosis you could imagine, took me to almost dead before they figured it out. With a complete cross country move and a new doctor who LISTENED to all my symptoms, finally figured it out! All the doctors I saw in Toronto don’t know what day it is, never mind what an illness is.

    Glad it is such a new healthy “diet phase” for so many people as it has brought on such an influx of real food!!

    Reply
  4. Our products actually have consistently tested negative and below detection (<4ppm). I know I can't handle much more than that! I only eat at my own home or cafe, and anytime I go out to eat elsewhere it is cross contamination or very high ppm!
    Hope to meet you next time you are in town!
    .

    Reply
    1. That’s the problem with 20ppm. Then add extra for cross contamination and how many products you have in a day.

      Reply
  5. Great story, your story sounds just like mine.

    It took me 21 years to get diagnosed and that was in the late 80’s and I have many autoimmune complications. I cannot eat anywhere except at my own restaurant or home due to cross contamination. I am Celiac and have food allergies and many cross reactions to other GF grains. I think if a restaurant is going to offer GF, the whole restaurant should be GF. My restaurant is completely GF and Certified GF by CSA to 5ppm. One Dish Cuisine Cafe, Deli & Bakery, Ellicott City, MD…please stop in the next time you are in Baltimore!

    Reply
    1. Ooh I wish I wish I would have found you before I left. Definitely next time on east coast. Restaurants need to be certified for sure if they are going to be able to offer GF, with knowledge & education behind it. Our GF products need to be 5ppm or under as well! No 20ppm crap!

      Reply

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