Hello world. First of all if your reading this, I am so very thankful that you are taking the time to do so. My name is Holly. After starting a Gluten Free Facebook page which has grown to almost 1000 fans, I’ve decided to write out my whole story so people can understand more about what made me go on the road less traveled, a gluten free road.
Before I came out of my mom’s stomach, I was complicated. During her pregnancy, she had to be rushed by ambulance to Syracuse, NY because our blood did not like each other. When I was born I had to undergo an emergency blood transfusion. Little did I know then, my body was not done attacking itself.
I grew up in a very small town, which was close knit, with both a loving family and incredible friends. When I was between 4-8, I had one cute pot belly; which turned my belly button into an outtie button. I apparently loved to lift my shirt up to show people “my belly.” Skinny legs with my pudgy belly made me a perfect candidate for being piglet for halloween; it fit me and I loved whinnie the pooh. In retrospect, my cute pot belly was a sign of digestion issues. A light bulb went off in my head, when I worked with a little girl at a Children’s fitness center, who had a belly just like me when I was little. She was diagnosed with celiacs, and a month later, she looked like a different kid. Everyone was amazed and her mom said she even acted like a different person.
Growing up I probably “glutenized” myself and it was NOT my parents fault! I was one picky eater! I could have been the poster kid for kraft boxed macoroni and cheese. It was practically all I ate. Even for special occasions, my grandma always made sure it was on the table for me. However, on top of running around playing street cops with my friend Jaime, dancing to peter paul and mary, and being a crazy playful kid, I remember wondering why I had pain in my stomach, and my friends never mentioned it. There was one super bowl night, around the age of 8, that I specifically remember crying in the bathroom and then only eating grapes for dinner, because I couldnt stand the pain. I just wanted to enjoy the game with my family…well the commercials.
I’m in the blue, losing weight and not sure why
Throughout high school I was one active person, but I began loosing weight, more than just what living an active life would be. My field hockey couch even pulled me aside and asked if I was eating. People got worried about me and even were approaching my older sister, and asking if I had an eating disorder. I was eating like a horse, but not absorbing the nutrients. I remember running in field hockey and just trying to get through practice without having to lay down on the field and curl up in a ball. My stomach would make these weird gurgling noises running and sometimes my kilt would just fall off me and I would have to use a hair tie to bungie it up so it would stay on and other times I could barley button it because my stomach was so filled with air and distended/in spasm. Also I remember one day specifically, I was standing in choir practice. That morning, I had a giant price chopper wheat bagel after having a large bowl of spaghetti the night before. Normally I ate a yogurt with trail mix for breakfast. Standing there, I had the most intense stomach pain. Now most people would be able to just put up with it. However, my lovely body decides to have a vagal-venous response to pain, causing me to pass out in response to severe pain. This was my first experience with such a situation. I passed out, hit my head on a concrete wall and was taken by ambulance. This lead to test after test, from echocardigrams, an MRI of my brain, blood work, catscans, you name it…I went to many specialists. No one could figure it out. I also hardly got my period. I use to beg for cramps like my friends. I ended up going on birth control to help regulate me cycles. (Irregular periods and absent periods-are a sign of Celiacs). During this time period, I went on a schools trips and a cruise with my family. I remember running to the bathroom or staying in the bathroom crying during many of these “trips.” One day on the cruise boat, while my family went to the nightly show, I stayed in the state room, alternating running to the bathroom and curling up on the bed with big sweat pants on.
My feet starting to get dry and flaky, my toenails thick and brittle. I didnt want to wear sandals. I continued to have several syncope/passing out episodes due to pain in my stomach….after I passed out people would give me candy bars and fast sources of sugar because everyone thought it was low blood sugar. I stuffed my purse with granola bars (funny looking back on it now). My doctor thought low blood sugar was the culprit too, so I went through a month of pricking my finger and testing my sugar multiple times a day. It was normal. I was then seen by a gastrointestinal doctor who diagnosed me with IBS, and put me on an anti-spasmodic pill for my stomach. They also gave me an “emergency pill” that I could place under my tongue if I felt an episode. I was also diagnosed with heart burn/acid reflux (symptoms I did not have…but the doctor said my stomach was producing too much acid which was causing my stomach pain), so I was put on a drug that decreased stomach acid production. (Which after reading Paleo books was worse because with a gluten intolerance, I wasnt producing ENOUGH acid..thus worsening my own situation). Toward the end of graduate school, I started getting intense joint pain in my mid back. Had imaging done of my back and it was normal but I had slightly lower bone density in my back, compared to people my age. All my life I was a huge milk drinker. In highschool and college days I had 1-2 sometimes 3 yogurts a day, and was a health and exercise science major so knew the importance of taking vit D/calcium everyday…which i did. So how could this be? Again..a sign of celiacs..I wasn’t absorbing the calcium and vital nutrients. Lower bone density is linked to gluten intolerance.
Had enough of my story yet? There is more!! I felt at times I was living in a fog. I’d zone out sometimes and find it hard to focus/concentrate. Still suffering from stomach pain….which was getting worse and worse. On one night, with my now husband, we went to a fancy restaurant and I had a giant fried breaded chicken parm meal with bread and butter, croutons in my salad, and pasta, then we went to a bar and I had fruity malt beverages, I ended up passing out from the stomach pain (IN THE BATHROOM!) at a bar. People thought I was some girl who over did it on the alcohol. I was taken by ambulance to the hospital and they found out my gallbladder had stones and needed to come out. I underwent emergency surgery. The surgeon who does numerous gallbladder surgeries everyday, said that mine was the worst he had seen; just filled with stones so large and hard as a rock. Usually a person who needs there gallbladder out has the 4 F’s: Fat, Fertile, Forties, Female. It wasn’t me….But now it was another sign….gluten intolerance is linked to Gallbladder disease.
Life continued and I started feeling even more tired and had blood work done for my thyroid.. It came back that I had autoimmune thyroid disease and had to start taking synthetic thryoid hormones by medicine… Again treating my case with medicine for each condition. (Autoimmune thyroid disease is linked to gluten intolerance***) Also I went to my usual dentist check up…I was thinking in my head..finally a doctor that won’t find something!! (Since I’ve never had a cavity in my life). The dentist said my gums seemed all inflamed so I had to have a procedure done, and he said I had lines on the inside of my mouth, as well as some canker sores; he asked if I drank a lot of soda because it can make you prone to sores from the acidity, funny because I don’t drink soda. Looking on the list for Celiacs…inflamed gums and canker sores are also a sign. Also I continued to have dry flaky skin, (eczema/psoriasis like) on my feet. Another sign of Celiacs, which I will soon learn.
I had several more episodes, 3 of which involved going to the hospital because they were so severe. More ambulance rides from stomach pain. Other nights I spent scared to go out with friends because I didnt want to have a “stomach attack” and ruin the night. I thought after having my gallbladder out, the pain would have gone right away. I also was following a very low fat diet. Cereal and turkey sandwiches on whole wheat bread and 12 grain bread were my best friend. I finally just had enough with how my life was going and just wanted to feel better. I was sick of having my now husband and me, have to leave places early, and me crying in the car on the way home, with my feet up in the air on the dashboard, with my pants unbuckled because my stomach felt so distended (sorry if to much info!).
They say everything happens for a reason, even bad and frustrating incidents too; the ones people say that “break the camels back.” Still struggling, I had a doctor tell me my pain was all from stress and anxiety, and that it started in my head, which triggered my stomach pains. Perhaps anxiety medicine would help? The very next week I had a doctor tell me that he knew the answer, “he was a retired pilot and use to get the same pains because he swallowed to much air.” He said to not swallow as much. I am not kidding…..true doctor. This was the straw that made me click. I thought in my head…Enough with doctors. If doctors weren’t going to figure me out, I WAS GOING TO FIGURE IT OUT. Reading this, you might be thinking…wow that is a lot of stuff to have wrong with you…well I thought so to! With me being a very determined person, I knew within myself was the ability to seek the answers. I didn’t have the energy to tell one more doctor my story or to take one more medication to the pharmacy counter and deal with side effects; but i did have the energy to do my own self driven research. I went on good ol’ google and started searching and searching. With one click of a button I found my answers. I came across the symptoms for Celiacs:
CLASSIC SYMPTOMS MAY INCLUDE
- Abdominal cramping, intestinal gas (CHECK)
- Distention and bloating of the stomach (CHECK)
- Chronic diarrhea or constipation (or both) (CHECK)
- Dry, Flaky skin (CHECK)
- Steatorrhea (CHECK)
- Anemia – unexplained, due to folic acid, B12 or iron deficiency (or all) (fatigue, possibly?)
- Unexplained weight loss with large appetite or weight gain (CHECK)
- Osteopenia (CHECK), osteoporosis
- Bone or joint pain (CHECK)
- Fatigue, weakness and lack of energy (CHECK)
- Irregular or absent Menstrual cycles– (CHECK)
- Depression (not depressed, but living in a fog was draining)
- Mouth ulcers (CHECK)
- Hypothyroidism (CHECK)
- Delayed puberty (CHECK)
- Tingling or numbness in hands or feet (NO)
- Migraine headaches (NO)
SOME LONG-TERM CONDITIONS THAT CAN RESULT FROM UNTREATED CD
- Iron deficiency anemia
- Early onset osteoporosis or osteopenia (CHECK)
- Vitamin K deficiency associated with risk for hemorrhaging
- Vitamin and mineral deficiencies (CHECK)
- Central and peripheral nervous system disorders – usually due to unsuspected nutrient deficiencies
- Pancreatic insufficiency
- Intestinal lymphomas and other GI cancers (malignancies)
- Gall bladder malfunction (CHECK)
- Neurological manifestations
- Thyroid disease (CHECK)
“LIGHT BULB” TURNS ON in my head!!!!
Although I felt sad I had so many problems, in my head I felt relieved. Could all my problems be linked to ONE THING?? With some of the long term consequences I wanted to make sure that I got a handle on this. I went to my doctors and told her that I wanted blood work done for celiacs. Waiting for the results was hard because I was excited. I actually hoped it came back positive so that I knew what was going on inside my own body. Then I got the phone call and she said… it came back negative. No Celiacs. I was happy but crushed at the same time. How could this be? I had almost every single symptom…it was like the stars aligned on Google but not on my blood work lab sheet. That next week I then turned frustration into celebration. Maybe it was good news? Bagels, Cake, Grilled cheese with tomato soup and a cold winter day, I could still eat gluten!! That week I remember having pasta almost every night for dinner, and continued my Kashi and Total cereal in morning and my whole wheat wraps for lunch. That Friday, I was sitting in class and had the worst pains again…. I ended up trying to walk to the hallway to try to lay down… but ended up passing out; yup in front of my classmates. I went to an urgent care; they ended up doing a catscan with barium contrast and an ultrasound of my thoracic region. During the ultrasound the tech said…”man your intestines are all filled with air…I see that a lot with people who are gluten intolerant.” I told her about my story (A much abbreviated story)…and she said go with your gut, give up gluten. That woman may have saved my life. I listened to her. It didn’t matter what my blood tests said….Later I learned the only way you can really find out is through a biopsy of your intestines. Blood work is often only 50 percent accurate in detecting celiacs; and does not differentiate between gluten sensitivity, gluten intolerance, and Celiacs. Most commonly, blood tests for celiacs is a great diagnostic tool for the small percentage of people who have a severe allergic reaction immediately after consuming gluten, similar to a peanut allergy.
My Gluten Free Journey
In the first few weeks, I noticed my energy level changed. It was like my life was filled with joy from my friends and family, but I didn’t realize how much of “a foggy morning” lens I was looking through. It was like I could sing this driving in my car with a huge smile on my face:
I can see clearly now, the rain is gone,
I can see all obstacles in my way
Gone are the dark clouds that had me blind
It’s gonna be a bright (bright), bright (bright)
Sun-Shiny day. sky was clear.
I no longer had patterns of having to run to the bathroom after I ate. My wall missed my yoga: “feet up the wall” position, a position I did a lot when I had pain.
In about 2 months, my flaky dry skin and nails on my feet completely cleared up. My canker sores were gone. When I flossed, I was used to red, sometimes bleeding gums…that was gone too.
In about 6 months, my stomach didn’t feel distended all the time after I ate. I didnt have emergency “holly has to leave because of stomach pain” situations. When I ran or worked out, my stomach didn’t gurgle and make strange noises. Bet the people at the gym liked that too.
I can honestly say that becoming gluten free changed my life, and following my gut, led to a more happeir gut 🙂
I’ve been loving gluten free living and experimenting with recipes. I am now searching beyond a gluten free life, to discover new ways to improve my health such as Primal living, PALEO, autoimmune protocols, different combinations such as egg free/soy free/dairy free/nightshade free. This has become a hobby of mine. I have a huge interest in this and someday hope to combine it with my physical therapy knowledge to help patients in regards to both physical fitness/exercise and holistic nutrition/alternative medicine.
I still have some unanswered questions and even regrets. I wish I knew not to get my gallbladder out because it affects how I absorb nutrients in my future. I truly believe a gluten free life earlier on would have prevented this. One thing that did not disappear with a gluten free diet was my joint pain in my back. Perhaps its unrelated? But I believe that any inflammation in the body is not linked to “bad luck” but diet and nutrition. After a lot of research and reading Paleo books, I recently gave up dairy and nightshades ( linked to joint pain in some people). After a month of no dairy or nightshades, my mid back pain/rib pain went from a 8/10 to a 2/10, with somedays being 0/10. I’ll take it!
With gluten out of my life….I’ve found an energy and a passion for clean eating and cooking, playing in the kitchen with music and coconut flour and almond flour spilled all over…yes I’m a messy but I clean up 🙂
Sometimes I look at people and wonder what life would have been like if I had just been “normal.” Occasionally I get a tad bit jealous of people in the grocery store, with carts full of frosted flakes, cinnamon raisin bagels,, greek yogurt, and yes…kraft macaroni and cheese. Sometimes feeling the “WHY ME” feeling, after internally feeling like I have more problems then some 90 year olds. But I can honestly say that even with everything…I am the most luckiest girl in the world. I believe meeting my husband took all my good luck because somehow from all the fish in the sea…I found the best one in there. He has put up with my inner cavewoman and my 2 hour trips (slight exaggeration) to the grocery story. I am a wanderer, somtimes on a strategic mission with lists, sometimes a lost hunter without a compass, but no matter what I”m looking at every single nutrition label like it could be life or death for me. He has even tried gluten free pancakes at my in-laws; he’s a trooper for putting up with me, and a miracle for being my support system through this all.
Please, if your Gluten Free, Please feel free to share your story on my Facebook page @ Gluten Free Holly. If you have questions please reach out to me as well.
I believe all these health issues led me to the right road, the gluten free road, my road, and now life is about enjoying the view.