Hi there! I’m Fallon and this is my blog. A few fun facts about me: I love music, art, fashion, design, photography, animals, the outdoors, travel and of course my family and friends. I have a border collie named Romeo and he is the happiest dog ever!

I am so lucky to have been raised with an appreciation for art, thanks to Brad Clark- Distinguished artist, talented painter, and loving father. He raised me to be happy, healthy and to value life. His support has gotten me through the toughest of times and for that he deserves the world.

♥

Below is my short story with celiac disease:

Fact: Celiac Disease is one of the most common chronic health disorders in western countries, and is also one of the most under-diagnosed, affecting over 3 million Americans.

Introduction

Living with celiac disease stirs a lot of questions from everyone I associate with. My family, friends, peers, colleges, all ask me the same types of questions. Usually it’s about which foods I have to avoid, and which foods I can eat. However, I do get the bigger questions asking me about what it is I go through. Often times it’s tough to find the short version of my story. I think I am a bit sensitive to talking about it because I don’t like that kind of attention.

I have been able to overcome so much on my own and never placed my issues on a pedestal. I like to focus my energy on how to overcome and move on. With that said I would like to share with you my journey with celiac disease and how it has effected my life so that you may be able to relate with it. I have learned from this experience and I am moving forward with the knowledge and strength that I have acquired.

My Story Begins

I began noticing symptoms while I was in my sophomore year of high school. I was complaining of multiple symptoms such as stomach aches, burning, indigestion, severe pain, headaches, migraines, light sensitivity, fatigue, and I had trouble concentrating in class. I went to the doctor and he was concerned that I had developed an ulcer due to stress. The results came back completely normal and healthy, so without even considering other options he diagnosed me with acid reflux which he then prescribed medication for.

I was a very physically active teen. I was on the dance team as well as track and field. However, I began to put on a little weight, about 5 pounds, which was only noticeable on my stomach and my face looked really puffy and swollen. I was so concerned because I didn’t understand why I was chubby-looking all of a sudden. That’s when I started keeping track of what I ate. At this time, I ate pretty much whatever I wanted, as most teens do, but I was smart about making healthy choices. I remember feeling like I was always hungry. My family and friends started making comments about my stomach being bloated. But I couldn’t figure it out.

I went off to college and kept up the fitness, however I was still experiencing the same symptoms. I didn’t have access to a lot of healthy food. I went to college in Hawaii, so it was usually either left over food from a luau or the pizza place across the street! I began just eating what I could when I could. I put on a little more weight, which I considered my freshman fifteen. I have a really small frame, so every pound I gained made a noticeable difference (to me), and really hurt my self-esteem. This is when I started gaining an interest in cooking. I used to call home and asked my mom for recipes and I’d spend time trying to figure out what felt right to eat. All of this focus, upset, confusion, worry, and physical pain took away from my focus with school and I became less interested.

The following year, I pretty much gave up on food. I needed a break from the pain so I ended up drinking a ton of liquids more frequently, and relied heavily on caffeine to keep me going. I snacked on healthy fruits and vegetables, and became an excellent grazer. I stopped eating bread randomly and noticed that in doing so I had lost all of the bloating, puffiness, and weight in no time. I then thought that carbohydrates were the enemy due to all of the progress I had made by eliminating them from my diet. For the first time in my life I had stopped working out because I didn’t have enough energy.

It’s interesting to me as I look back on this time in my life. I somehow naturally avoided bread, which turned out to be causing all of my symptoms. I was always craving apples, which help with digestion. I always loved mint, which is also great for digestion. I also craved fish, which is loaded in omega-3′s to help nourish our brains. With the huge change in eating habits my body was craving nutrients.

Here Come the Cravings

There weren’t too many options for me at this time, especially since I wasn’t eating carbohydrates, and didn’t eat out because I was a broke student. Staying away from some foods eventually left my body malnourished. This gave me severe cravings and occasionally I would cave. This was at a time when gluten-free wasn’t such a wide-spread topic. I never thought about food allergies before, so it never crossed my mind that I would have something like that. I was always told I was perfectly healthy.

All I knew was this: Food hurts and not to eat it often. I kept this routine up for a few years, in which time my weight fluctuated up and down between 15 pounds. Multiple unfortunate events occurred throughout this stage of my life which caused me a great deal of sadness and stress. This is when I started noticing a symptom with anxiety, which later I would find out is a trigger for celiac disease. I was fatigued, I was pale, and I was really underweight. I ate small snacks because that seemed to be all my stomach could handle.

“Celiac disease is a genetic disease that runs in families. A person can have the disease and not know it until it is triggered by severe stress, pregnancy, surgery, physical injury, infection, or childbirth. -essentiahealth.org

Doctors Visits

I sought help from the doctor, and he had me in his office about 3 times a week for a few about six months to do blood tests. The only thing he concluded from those tests were that I was slightly anemic and to eat more foods containing iron. He advised that I drop out of school and try to get better. Not once in any of those blood tests did they check for food allergies! I was throwing money down the drain and racking up huge medical bills, (which didn’t help with getting me through school either.)

This was when I went to see an acupuncturist. The first initial consult with him was a huge eye opener. He asked me a ton of questions that no one had ever asked me before. Some of them I didn’t even know how they pertained to anything I was dealing with, however I trusted that he knew what he was doing. I was so relieved to be trying something new. I was really up for anything at this point!

By the end of the consult he had written about three pages full of symptoms I had. I never knew that most of what was on there was even an issue! I think it’s because I never knew what normal felt like. All I knew is what I felt like, which is naturally what I thought normal was. It was from that experienc that I began keeping an eye out for my health better and started asking different questions. This is when I found out about wheat allergies.

Going Gluten-Free

After realizing that gluten may just be the problem, I began introducing food back into my routine on a more regular basis. However, by this time I had already damaged my insides so much from all of the stress and abnormal dieting that regular meals and portions were unbearable. Not to mention the damage gluten had already done on my intestines my entire life. Eating was extremely difficult for me physically. I would eat what I could but it still seemed too small of a portion that I would try to get down at one time. I then tried to push it a little bit by eating a bit more because I wanted to train my system to eat normal amounts of food again.

It just made me sick because the food wouldn’t digest. Acid would build in my throat and I had distension and severe pain. It didn’t matter if it was healthy and gluten free, my insides had taken a beating and they were not happy. It was so bad that after a few hours of waiting for the pain to ease and food to digest I would have the urge to vomit. Simply by leaning over the toilet, and without any force, food would just run out of me as if it had been sitting in my throat the whole time.

I told the doctor about this and he said it was a normal side effect of indigestion. He said I was too stressed out and to start exercising again and hopefully that would alleviate the stress. I did what he told me to, and I started to workout more. However, my workouts had to be first thing in the morning before I had any food otherwise there would be no way I could bounce around like that with food in me.

Gluten Cycles

“There are cycles that are associated with gluten itself and the entire process of going gluten-free. It starts out by eliminating all gluten from your diet. This is not easy to keep up as you begin to feel the withdrawal symptoms associated with the detoxification from 
gluten…” -Excerpt taken from the article, “Withdrawal Symptoms Associates with the Addictive Nature of Gluten”

I kept up that routine for awhile and it was great. Unfortunately, I was still not able to stomach a meal, so I just went back to grazing. I tried to compensate my lack of nutrients by taking vitamins but it would make me sick to take them without enough food in my stomach. I avoided gluten, ate healthy. The problem was that I was still having those cravings due to not eating enough and malnutrition. At times I felt deprived so I would overeat or cave and eat something with gluten. It was beginning to be a really horrific cycle. It’s at this point that I almost completely gave up.

When people with celiac disease eat foods containing gluten, their immune system responds by damaging the finger-like villi of the small intestine which are responsible for absorbing the nutrients from your food during digestion. This interferes with absorption of nutrients from food into the bloodstream which can lead to malnourishment. This can negatively effect potentially every organ of your body including the brain and cause a multitude of symptoms. I held on a few more years but the malnutrition started to creep up on me and all of a sudden I became depressed.

Sadness Stepped In

I used to write about it in a journal. I remember asking “why” a lot. “Why am I sad? Why am I so troubled? Why am I in so much pain?” It was hard for me to have any sort of consistency in my life. Whether that be socially, a job, school, I was just done. I just wanted to be happy and healthy again. I just wanted to have a normal life!

I felt like a slave to something in my life, and I didn’t even know what it was. I felt helpless and alone because no one understood. How could they when I didn’t even understand? I gave up on doctors because I felt like I was getting the run-around. I was so frustrated and so worn out. I felt ugly because when I did eat gluten it would make me noticeably puffy. Another symptom I began to notice was that my teeth were losing enamel.

“According to a reference book, ‘up to 89%’ of people with celiac disease exhibit enamel problems” -HealthNowMedical

I tried to find consistency and happiness through any outlet I could whether it be working out, friends, or a job. I wanted to mask the unhappy feelings and be happy. It felt good for awhile but once something really stressful would hit I would inevitably cave. That old sadness I had felt would set in again and the gluten-cycle would ensue.

“Gluten has such a powerful effect on your brain, that it actually releases a drug-like exorphin to your brain that urges you to want to pig out and crave exactly the foods that you are trying to avoid.” -Excerpt taken from the article “How Does Gluten Effect Your Weight”

Celiac Disease 

It’s within this time that I researched celiac disease. CD is called a multisystem disorder meaning it affects multiple systems that make up the body. I was confident I had it due to the many random symptoms I had that aligned perfectly with the disease. I say “random” because it is so interesting how all of my symptoms correlated that I didn’t think would. Another symptom that I found to correlate is hair pulling, which I had ever since I was a child. I also began getting a rash called dermatitis herpetiformis, also know as the “gluten rash” or “celiac disease rash” because it occurs in conjunction with celiac disease. I did some thorough research and was able to clearly diagnose myself, as all of the symptoms matched exactly.

I had performed multiple studies on myself, to make sure I was correct. I would go off gluten for a few months and back on. Each time I had gluten, the rash would appear almost immediately. If I went off of it, it never came. I called my brother, who suffers from it as well, and he clarified that it was indeed DH. This was a huge wake up call to me that I needed to be more careful with what I ate.

Be Your Own Healthcare Advocate

I showed the doctor the rash, and he was pretty rude in the way he went about wanting to diagnose it. He is the kind of doctor that is not as familiar with CD, and would much rather base a diagnosis on what he knows and feels comfortable with rather than do the research as I did. And he certainly didn’t want to hear a diagnosis from me! He insisted on testing for herpes. Apparently this is a pretty common misdiagnosis, so beware!

I had more blood tests done. Several times, they never even did the full blood panel. You have to ask for it yourself! They never insisted that I be tested for allergies, they never went into detail about any of my symptoms, and never got back to me with results. One doctor’s office even said… “you carry the celiac gene, but it’s not turned on. I’m not sure what the doctor means by that but I can find out.” They seemed to be treating my condition as if it were a joke!

I knew that CD was genetic, and all that call meant to me was that I did in fact carry the gene. I figured out just by narrowing it down, that what the doctor meant by “it wasn’t tuned on” was that because the time I was tested I had been on a gluten-free diet, so it wasn’t showing in my blood. That doctors visit in and of itself is a long irritating story, so I’ll just move on.

Pit-Falls

I took a desk job, and that turned out to be awful to my health. I sat at a desk all day, which made me too tired and fatigued to do much once I got home. My headaches worsened from light sensitivity, (we all know how hospital lights are) I had extremely poor digestion again from not being able to workout because of being so fatigued. The lack of exercise brought on some weight gain again and myriad of other reoccurring symptoms, plus a few new ones. I was getting worse.

I started taking a tremendous amount of vitamins as a part of my daily routine to try and make up for the malnourishment. The only way I could handle taking the vitamins were if I took them with food. I tried to eat normal balanced meals on a regular basis, and as a result I had pain associated with poor digestion, and I was in bad shape physically. I felt like I had no out. If I ate food, I’d have to unbutton my pants at my desk because the bloating was so bad. I had acid going up my throat, and by the time I got home all I wanted to do was lay down.

Often times I wouldn’t digest my meals for a couple of days.The food I was eating would just pile up inside of me on top of the food that was still undigested in there. I’d go to work each day feeling awful and huge. I tried to flush it out with water and tea, but nothing would happen. I tried different types of over the counter medicine and supplements to try and help, but it only gave me occasional relief as my body would become immune to them.

Conclusion

So here I am now, hopeful to finally get a hold of this disease. I am documenting this journey to hopefully reach out to those fellow sufferers and gain whatever advice I can as well. Its not easy to deal with, and so far I’m taking it day by day. With regular exercise and a consistent, healthy, well-balanced gluten-free diet, I will then rid my body of symptoms for good, however I am still trying to pin-point exactly what a gluten-free diet really is. For now I am avoiding all grains and dairy, as I do have lactose intolerance as well. Often with celiac disease, the two go hand-in-hand.

I’d like to cure most of my symptoms this year by consistently sticking to a gluten free diet…without any pit-falls. This is not going to be easy, as I have tried before. There are so many cycles that I’ve experienced, as I have previously mentioned, that seem so impossible to break. Many people have told me that once they have remained on a gluten-free diet, they no longer experience the symptoms related with CD. I am hoping that with time that will be my experience as well.

I hope that by reading my story, you will be able to relate with it, or at least assess your own symptoms so you too can get tested. I would love to hear your feedback and your own personal stories, so please feel free to share! Please keep in mind that the stories we share on this site are very sensitive and deserve respect. You may write anonymously if you choose, as your information is private and will not be solicited. The comment box automatically asks for you to enter an email address, however it will not be shown.

Thank you so much for reading my story, following my site, and for your overall support!

Lots of love,

XOXOX Fallon

 

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