Set Your Body Free! Celiac Disease – The Battle Within Myself

 Way too much information will be happening in this post so, I am apologizing now! SORRY, but a little #sorrynotsorry !! Also, this will be a longer post…because I want to get it all in…I need to let people know this is real and not just an excuse or fad.


Celiac disease is a serious genetic autoimmune disorder where the ingestion of gluten leads to damage in the small intestine.  It is estimated to affect 1 in 100 people worldwide.  Two and one-half million Americans are undiagnosed and are at risk for long-term health complications.
https://celiac.org/celiac-disease/understanding-celiac-disease-2/what-is-celiac-disease/


MY BATTLE STORY

“It’s just a GI bug, it’ll pass, 24-48 hours,” I said to my fiance (who was at the time just my boyfriend).

48 hours had surpassed and I was still the size of an 6-month pregnant woman, burping like crazy, and using the bathroom constantly. I work in the medical field, so I am your worst type of patient. I will figure out what’s wrong, if anything. I mean seriously. I’m fine I kept telling myself, even though I knew something was wrong.

Well, about 2 weeks had passed and not one symptom had gotten any better. I gave in and went to the doctor, I discussed with her everything that was wrong and when I say everything…I kinda I went to town. I explained to her that for the first few days, my stool was a bright green color, aka…I thought it was a GI bug and I didn’t believe it was anything too concerning. Then, I told her I was overly bloated, felt constipated, but using the bathroom like crazy. I was burping and passing gas that was absolutely unlike anything I have ever let out of my body before. After those few days had passed my stool literally turned the color gray, like clay looking!? This is crazy I know, but it happened, unfortunately.

So, she then started to ask me a few questions and thought maybe I could have a bacteria called H.Pylori in my system. As we continued to talk, I told her I have a decent diet too. I mentioned this because I was concerned about the color of my stool. I kept telling her I had not had any broccoli or spinach to make this happen, I love it, but did NOT eat that much!

I informed her that when my family moved from NY to SC in 2004 we went into a health kick. We cut out all white, everything. No white bread, sugar, flour, etc. We switched over to whole wheat! We all became healthier and it was a good transition. However, my doctor said let’s check for one more thing…lets get a celiac panel.

Excuse me, but uhhh what’s that?! She explained to me that celiac disease is when our body can not break down gluten (wheat, rye, and barley). I agreed because I really didn’t think I had that.

WELL…come to find out, my blood test came back…my results were THROUGH THE ROOF. A normal range for one of the test I can remember (there are multiple since it is a panel) was 1-19. My result…74! 70 freaking 4! So, right away, she tells me I can get an endoscopy to fully check, but with my blood tests…it was a given since my antibodies even came up positive. I, however, got the endoscopy anyway, just to have a baseline if anything else was to ever happen and of course it confirmed with a biopsy, I had celiac. Luckily, there was not much damage.

I can remember being in shock, kind of frantically calling my boyfriend and my mom. I remember getting all choked up because I said, what the heck am I supposed to do!? The only solution for now, was a gluten free diet! WHAT CAN I EAT?! I’m Italian…EVERYTHING I eat is straight gluten!

At the time, I worked for a company which had multiple physician practices within it. This company was booked out every single day for an entire year for breakfast and lunch to be brought in from drug reps. AKA, a living hell for me.

Let me tell you, this was seriously like the 5 stages of grief but instead...

the 5 stages of gluten grief (actually it is a real thing lol)!

Stage 1: Denial

I seriously continued to tell myself I was fine. I’m okay. Celiac disease is a joke?! Seriously, my body isn’t attacking itself because of what I eat, that’s absurd!

Stage 2: Anger

Guys, I was pissed, I was so pissed I would cry. I would break down and ask, why me? I love food. I don’t know what to eat! I want that damn bagel. I want a freaking slice of pizza! How do not eat everything that everyone else is eating? How do I avoid people who are eating it right in front of me! UGH! Seriously, I was frustrated.

Stage 3: Bargaining

This is when I would continue eating this food and I initially was like OMG YES IT’S SO GOOD…even though I shouldn’t eat it. However, give it a little time and I felt like I would rather throw everything up just to feel better. I was at the point of “I’ll just have a bite, I’ll be fine! I’ll just take some digestive pills and feel better after.” WRONG. But, it happened over and over again.

Stage 4: Depression

I spiraled downward, farther and farther. I started gaining weight like crazy. I was not happy and no one understood. I didn’t care if I felt bad anymore. I ate more and more because I truly did not know how to deal with this without continuously feeling like a failure all the time. I literally believe I went through a phase of depression. I didn’t want to move off the couch and I would just eat what I felt like eating.

Stage 5: Acceptance

I hit a point in my life where it was time for big changes, I moved to North Carolina, I got a new job, new home, new friends. My fiance was doing a lot of work-ups at the time and was away for weeks at a time, then back for a few days. This is when I decided I couldn’t live like this anymore. I need to worry and care about me. I need to love myself again. I need to find this new me. I needed to create a lifestyle that I could live on my own and that I could continue when John would return. I have celiac disease and this will not be the end of me.

So, after serious research, I found that this is a genetic disease, that the symptoms range in every person. I learned what I could and could not eat. I am able to watch someone eat a piece of pizza, bagel, donut, etc and yeah I would love it, but it’s the fact of how terrible I would feel if I did eat it. I have found a new me, a new appreciation for my body, and a new self love.

My Childhood Past:

It seems so crazy, but I started to look back, like way back and I remember as a toddler sitting on the toilet as a kid, mom giving me hot tea, and I would cry. I couldn’t use the bathroom. I was constipated, all the time. Even as I got older, everyone has a different cycle, but mine was anywhere from 5-7 days before going to the bathroom.

I then remember stories of when I was a baby. Mom and Dad said I would projectile vomit across the room like I was an exorcist child or something.

I look back at pictures of me in elementary school with such dark circles under my eyes…we just said it was an Italian thing.

Throughout the beginning of college, I remember eating any and everything. I was hungry all the time, even after I had JUST ate. I said, well, I am playing softball and have a really high metabolism so I am just burning it off quickly.

As a college student…I would drink, guess who was a light weight and had a hard time handling her alcohol. Me.

I got to a phase, further in college, where I would barely eat anything…but it felt as I had ate a feast and it would sit in my stomach blowing me up like a balloon and felt as if it was sitting in my throat. I would make myself throw up when this happened, which wasn’t all the time, BUT I needed whatever was in my body, out.

I remember feeling like I have brain fog at times and just can’t think. In a daze almost. A weird feeling of just irritability, depression, and confusion.

Constantly tired, long lasting headaches, terrible sleep patterns…the list goes on and on. There are SO many things that I look back at and realize I was not and have not been in a healthy body all my life. I was sick and didn’t even know.

TODAY

It took a long time, a lot of struggle and frustration. There were even times (I say times because it was more than once that this was offered) when John would tell me, he would quit a bad habit of his, if I would quit eating gluten. I couldn’t even hold up my end of the bargain. It was like I was taking two steps forward and five steps back.

It was truly a time of change within me. To find that there is another way of living. To find that every small failure I had during this time was teaching me that I need to rid my body of this toxic food. I even read that there is such thing as a gluten detox and a gluten high! GUYS, what else do we detox from and get high from…drugs! I was a victim just like so many others.

WHAT YOU MAY NOT KNOW

Gluten has so many effects on our bodies that happen and we may not know it. What about long term, what if I continued to eat this, knowing or not knowing I had a disease. I read some of the scariest things ever…type 1 diabetes, thyroid disease, osteoporosis, malnutrition, cancer, infertility, depression/irritability, lactose intolerance, and trouble maintaining a healthy weight. I was reading a nightmare and I never want to live in a nightmare.

Since it is genetic…it worries me, I think it is from my Dads side of the family. Mom and Sister don’t seem to have any symptoms, but Dad and I are a lot alike. Dad has gone through times of being sick and wondering why he feels like crap. He talks about how bloated he is but says he barely ate anything that day. Dad even has a bulging disc and says when he stays off gluten he has no throbbing and no sharp pain. He has realized that the inflammation gluten causes inside our body makes life so much more complicated. I also have a family member on Dads side of the family who currently has cancer…it is currently being treated, but I personally think could have been caused from celiac disease or in general our corrupted food system today.

We are literally putting toxic food into our bodies and it is DESTROYING our insides!

DID YOU KNOW

  • Some people experience symptoms found in celiac disease, such as “foggy mind”, depression, ADHD-like behavior, abdominal pain, bloating, diarrhea, constipation, headaches, bone or joint pain, and chronic fatigue when they have gluten in their diet, yet do not test positive for celiac disease. The terms non-celiac gluten sensitivity (NCGS) and non-celiac wheat sensitivity (NCWS) are generally used to refer to this condition, when removing gluten from the diet resolves symptoms. https://celiac.org/celiac-disease/understanding-celiac-disease-2/non-celiac-gluten-sensitivity-2/
They don’t want to catch celiac! Just kidding, different doctors visit!

WHAT CAN YOU DO

Guys, I am not saying that everyone has celiac disease. I am simply saying, start looking at the food you are putting into your body. The food industry has corrupted us all and taken over our bodies. It is causing disease in all of us and whether we want to believe it or not, it’s happening.

Do you really know how your body feels at its full optimum wellness?! Probably not! Our bodies have so much potential with just giving it what it truly needs.

If you are having random symptoms, maybe they aren’t all separate issues. Maybe they are all linked to one thing. Food.

I encourage everyone to do some research, talk to your doctors, maybe try an elimination diet! Only you know your body and how it feels. I am here for ANY and ALL questions. No question is silly and I may not be a doctor, but I will give advice on whatever I can! I want to help people feel their absolute best from the inside out. When your inner-self feels good…everything else falls into place. It took me a long time to realize that, but it is true.

John has also agreed to help answer any questions coming from significant others that may be struggling to help their loved ones. 🙂

In one of my previous posts, Live A Life OF Purpose … I discuss not having one single purpose in life but, living a life OF purpose. I truly believe I was meant to go through these obstacles so that my life OF purpose can be to change lives. Not in one specific way but overall help individuals learn, grow, and become the best of who they truly can be.

*Stay tuned, I’ll be discussing my favorite products to help when I get “glutened”!*

As Always,

I LOVE DOING LIFE WITH YOU 

12 COMMENTS

  1. Maggie | 12th Mar 17

    I really appreciate how candid you were about this disease. A good friend of mine also suffers… I am so sorry you have to deal with this on a daily basis. Sending my love and support ❤

    • Samantha Santoro | 13th Mar 17

      Thank you so much Maggie! I wanted to let people know so that others can be aware!! Support for your friend as well!

  2. Allie | 13th Mar 17

    I just wrote ten pages and I think it disappeared.

  3. Allie | 13th Mar 17

    NOOOO IT DID. I knew I should have copied it before submitting

  4. Allie | 13th Mar 17

    Okay let me try again. I LOVE THIS POST. Well, I don’t love that you have celiac, but I love that you were so open about your experiences. I relate to this soooo much (as you know by my FB messages crying to you haha). Thank you for including the part about non-celiac sensitivity. There is nothing that makes me angrier than the people who share those articles that are like “there’s no such thing as gluten sensitivity / you’re all babies / GF is a fad.” If only they knew what it was like to deal with stabbing stomach pain and cramping, throwing up, terrible GI issues of all kinds, dizziness, brain fog, bloating (like seriously the 6 months pregnant thing..) WHY WOULDN’T I STOP EATING THAT FOOD?! I would never judge anyone for their food and diet choices. We know what’s best for our bodies, if we’re willing to listen and assess what we’re eating. (which reminds me, a girl I know recently who is a vegan posted one of those articles. Her logic against GF was that she doesn’t think it’s healthy to eliminate an entire food group. I found this extremely ironic as she has eliminated two major ones… hah – nothing against vegans at all – you do you – it just was a silly post and I had to share this with someone because her logic baffled me HAHA). I love all these cute photos of you and John. That’s really nice of him to offer to talk to anyone… I should prob make my husband talk to him because of all the crap I put him through being allergic / sensitive to so many foods and cross-contamination. haha. I also loved the part you wrote about the five stages. That was super interesting. I went cold turkey and felt so much better so fast, but had major bagel envy, especially when I saw people eating cheddar bagels yummm. Going to parties and events is really hard. But there’s nothing better than feeling healthy and “well” rather than chronically sick and tired and in pain. ANYWAY I’m sure you will help people consider their relationship with food and if it could be the reason for some health problems (:

    • Samantha Santoro | 13th Mar 17

      I don’t know where to even begin with you. Thank you so much for this. It really was a struggle for me. I wish I could have gone cold turkey, but it never seemed to happen that way. I don’t think I had the will power at the time. I also can not stand when people say its a fad and you don’t need to be gluten free. Those are the people who know nothing about the situation that we are in. Seems as the vegan post is much like that and thats so frustrating. BUT being healthy and well is seriously all that matters to me and honestly the wellness of others!! Thanks for being so supportive!

  5. Lauren Grace | 13th Mar 17

    I LOVE this post. THANK YOU for writing this!! My sister was recently diagnosed with Celiac and I know she has gone through so many of the same stages as you. I am going to send this article her way I know she would love to read it.

    • Samantha Santoro | 13th Mar 17

      I am SO glad you LOVE it! I’m sorry your sister was diagnosed with celiac! Guess some family relatives may have some GI issues as well! It’s crazy! It’s a struggle for sure and I know some people are able to transition easily, but seems like your sister and I are a lot alike! So glad you’re going to send this to her! Spread the knowledge! It’s all about awareness.

  6. carlie | 13th Mar 17

    Wow I loved this! I think people have such a hard time b/t Celiacs and people who are just “Gluten Free Intolerant” and because some people just prefer not to eat gluten, it gives those a bad name who actually have the disease and need to get it taken care of. Thanks for shedding some light on this.

    • Samantha Santoro | 13th Mar 17

      Thank you for understanding! It’s all about awareness and spreading the knowledge of this! It is real and sometimes insanely hard for us who have it!

  7. Liz Stephenson | 13th Mar 17

    Love the honesty behind this post! I never thought about how hard it could be.
    I’m glad you are doing better and held in there.

  8. Charlotte | 18th Mar 17

    Loved this post, thank you for sharing your story. I had no idea of the symptoms and struggle! I’ll definitely share this with my friends & family as I know a few who suffer with gluten intolerance

    Charlotte
    http://www.monnolife.com

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