Health - My Health Story (& Why I Gave Up Gluten & Dairy For Good)

Most people are very private when it comes to their personal life. I am when it comes to many things, especially when it's chatting face to face with someone I have just met. However, writing is my therapy, and I'm an open book in that regard. While I often times have trouble speaking my truth to someone, it's quite the opposite when it comes to putting it down on paper or on the computer screen. I believe it's fair to say my (and my family's) health story is truly uncommon and worth sharing, even if to only help me continue to process it all.

Let's begin with my relationship with food. For those of you that do know me, you'll agree that for the 32 years of my life I've lived so far, I've always been the first one to pick up the junk food  and eat as much as I wanted without gaining a single pound. "Look at you, you can eat anything you want and you stay skinny like that, you make me sick." or, "You need to eat a cheeseburger!" they would tell me, as if that was the magic to me putting weight on. Well, I did eat them, and I loved them, along with every other carb out there. Maybe a little too much. If someone asked me what my last meal would be if I knew I was going to die, without hesitation I would always answer spaghetti. Even to this day, my answer will always be spaghetti. Nothing fancy, just plain noodles with a basic marinara sauce would be my first choice. I could eat it every single day and never get tired of it. A close second to that would be pizza, or ironically a cheeseburger. Something about the combination of bread, tomatoes and cheese just made my taste buds so happy. Whenever I craved anything, it was usually that or other gluten and dairy (and chemical) filled foods. I think as a child growing up in the 80's and 90's, processed foods were becoming very popular, convenient, and affordable at that time for our parents. It was the life of Chef Boyardee, Pop-Tarts, Dunkaroos, Lunchables, Hostess snacks, Kid Cuisine, Pizza Rolls, Bagel Bites, I could go on and on.  If it was fast food, it was even better. The 2 cheeseburger meal from McDonald's with sweet and sour sauce and a sweet tea (#11 please)? It was all I ever wanted! I've never really been a huge meat eater, though, with the exception of plain meat that goes in or on bread. I also had it real bad for any type of cheese. It didn't matter what form it was in, either. If cheese was in the name, chances are I would eat it and enjoy it. Cottage, string, cream, crumbles, curds, boards, you get the point. Give me allllll of it. Whenever I ordered a sandwich, burger or sub somewhere, I'd always make sure I had cheese added to it. Provolone was my favorite for sub sandwiches, Muenster was my favorite for grilled cheeses, and American or Sharp was my favorite for burgers. I had preferences, people.  I'd also make sure my refrigerator was stocked with things like sour cream, yogurt, and shredded cheese for recipes...I was eating dairy pretty much every single day.

Now that you know about my lifelong relationship with food, as far as my history of health is concerned, I could write a novel on that alone. My parents actually gave birth to a son a few years before me, and he ended up having Polycystic Kidney Disease and passed away the night they brought him home from the hospital. When I was born, I appeared to be the true picture of health and everything was great. The only thing I did was constantly ask them to carry me whenever we were walking somewhere, because I was so tired. This obviously became frustrating once I reached a certain age/weight, but at the time it seemed like I was just a lazy kid. When I turned 5, my parents had another child. Sean, my younger brother,  was also born with Polycystic Kidney Disease. Unlike their first born, the doctors were able to keep Sean stable on dialysis this time until it was safe enough to do a transplant. My mom ended up donating one of her own kidneys to him when he was 2 years old. Our childhood was unique. With his medical condition, the hospital was practically our second home. My parents tried to keep me from it as much as possible by having my grandparents take care of me a lot of the time, but I'm no stranger to the place. We had machines in our home, nurses and therapists in our home, I had to wear a mask around him, and if he so much as threw up, it was to the hospital we went. 


While this is a lot for an adult to deal with, as a child it truly shaped who I have become in regards to my anxiety and panic disorder. I developed and live with severe Hypochondria, but what we went through as a family was very real, and very scary. Growing up, I had stomach aches nightly from stress and worry. I was unable to sleep until I took a dose of Maalox, and slept on the floor in my parent's bedroom with the television on to lull me to sleep.  I had learned from Sean's condition that something as simple as throwing up was a very serious thing that needed immediate medical attention. I figured if my stomach was upset, it would be bad for me, too. Of course now I understand that isn't how it works, but that doesn't stop my mind from it's instant reaction due to this type of exposure. When I reached 4th grade,  I was at a routine cheerleading physical when a heart murmur was found. They said I could not attend any more practices or events until I was seen and cleared by my pediatrician. Sure enough, our family doctor confirmed I did have a murmur, and that it did not sound like the innocent type that most outgrow. She believed it sounded very abnormal and sent me to a local pediatric cardiologist. Once there, I had tests run and a genetic abnormality was found called Atrial Septal Defect that caused a hole in the wall between my top two chambers. The defect was quite large, found to be the source of my fatigue, and a shock to the doctors how I hadn't succumbed to it by this point. I was immediately scheduled for open heart surgery at Duke University to repair the defect. Can you imagine what this did to my 4th grade already fragile psyche? I was scared to death. I had to get taken out of school to have this procedure done and it was one of the most terrifying times of my life. Not only was I old enough to understand the severity due to being around the hospital so much as a child, but this time it was happening to me. What if something went wrong? What if they couldn't fix me? What if I'd never be able to go back home to school and see my friends again? What if I died? 


Once I recovered from this, I had yearly follow ups until I was 18 years old with my cardiologist who would check to make sure everything was still okay. At that final visit, I was cleared for life unless I felt any reason to see an adult cardiologist. I was relieved to be given the okay, but continued to have generalized anxiety and by my second year of college the panic attacks started. At first they were right before class was about to start. I would just be getting parked and ready to get out of my car, and the wave of uneasiness would start to flood over my body. My heart would beat a million miles a minute as if it were going to burst out of my chest, my breaths would get shorter, my hands would go numb, and I would start to hyperventilate. Why is this happening to me? What am I afraid of? My stomach would start knotting up and I began to sweat and cry. I couldn't be seen like this. I can't concentrate like this. I'm just going to have to skip classes for the day and try again tomorrow. This happened way too many times before I realized that these panic attacks were not only getting in the way of my daily life, but also caused lasting physical symptoms. I would get severe gastrointestinal upset that would stay with me for quite some time after the episodes as well. It was seriously affecting me and my relationships. I went back to my cardiologist and told her what was going on. After listening to me and running some tests, she found that I had Mitral Valve Prolapse and explained that my palpitations and other symptoms were possibly contributing to or alternatively caused by these panic attacks. She prescribed a Beta Blocker to help with the irregular heartbeats and again reassured me that my heart was fine, even with this common abnormality. There was only one problem, I had Hypochondria, so knowing that I had any type of abnormality made me feel sure that something would go wrong at any minute. For this reason I never exercised too much, thinking it would ultimately kill me. Despite not taking care of myself physically due to overwhelming fear, I continued to eat the way I always had. Mainly because I wasn't gaining weight so it couldn't have been doing me any harm, right? Time goes on and eventually I stopped taking the Beta Blockers. I thought I was getting better. The panic attacks seemed to disappear once the trigger was gone, and other than my typical worry about my health every now and then I thought I was doing okay. The next thing I knew, my period cramps and bleeding were becoming debilitating. Now I was missing work for that time of the month because I couldn't walk without having to slump over my stomach in excruciating pain. It eventually got to the point where I had to see the OB/GYN for some help. I was told that I had Dysmenorrhea likely secondary to Endometriosis. I was told to take 800mg of Ibuprofen as needed and sent on my way. Great, another thing to add to my list of worries. A few years later, on top of these severely painful cramps, I started having more unexplained symptoms. An odd rash on my torso, blood in my stool, unregulated menses, bleeding any time I exercised, joint and back pain, the list goes on. I went to the doctor who ran multiple tests including food allergy, thyroid screen, fecal, etc. and found that one of my hormones were elevated and sent me to another OB/GYN. This time I was diagnosed with Polycystic Ovarian Syndrome. Is this starting to sound like a broken record yet? I was prescribed a low dose of birth control to manage this syndrome and the associated symptoms that went with it. Once I'm on the birth control, it's like the painful period never happened. It's regulated, I have a very light flow that only lasts for a few days, and the only reason I know it's coming is because of where I'm at in the pack. No more cramps, at all. So maybe that's all I will have to deal with. I'll just take this daily and everything will be fine, you know, aside from my other issues.  

In August of last year, I developed acute back pain to the point of not being able to move at all. I went to see my Chiropractor who agreed I was too painful to adjust, and took some radiographs. He felt that one of my disc spaces appeared slightly narrowed, and that I should see the spine specialists for an exam and possibly an MRI. I went straight there that day where the doctor ordered a stat MRI and I was then diagnosed with an annular tear of my L5 and was prescribed muscle relaxers and physical therapy. By December,  the odd symptoms started happening again. The unexplained rashes, the blood in my stool, and now flushing of my face daily on my cheeks, nose, forehead and chin along with progressing muscle/joint pain, difficulty getting up from seated or low position and pain going up stairs. Was this just my "normal"? 

It was December 26th, 2017 and I was at work. My face began to feel hot out of nowhere. Like an uncomfortable and radiating burning sensation. I placed my hands on my cheeks and jaw line and felt tiny welts all over. They weren't itchy at all, just extremely hot. What is happening? I put a dampened paper towel on my face to try and cool it off, but it just kept getting more flushed. I took an antihistamine, but there was no improvement. I went to bed that evening, and when I awoke the next morning my face was completely swollen. I looked nothing like myself, and it was so uncomfortable. I went straight to the doctor that morning, who after speaking with her about my extensive past, we decided to run an auto-antibody test, one that is commonly used to help diagnose Lupus. I was put on Prednisone for the inflammation and swelling, Hydroxyzine in case there was an allergy component, and an antibiotic to rule out possible staph infection on my skin. It took a few days for the swelling to go completely down, and I was left with a face full of flaking skin. My blood test results were in, and it was Positive (abnormal) for auto-antibodies. With the ratio and pattern that it came back as (1:160 nucleolar) I was told this was not concerning for Lupus and we should run another test to check for other possible autoimmune disorders. That test came back negative/normal. I wasn't comfortable with that answer. I needed to know what was going on. Maybe it was my Hypochondria talking to me, but I just am not okay with these symptoms and no idea of what is causing them. I made an appointment with an Allergy specialist who tested me for all environmental allergies. Absolutely nothing. He explained the non-itchy flushing was not an allergic reaction and was concerned about the combination of that with the other symptoms and referred me to a Rheumatologist. While waiting for this visit, it was February 26th, exactly 2 months to the date of the first hot welt/swelling incident, and it happened a second time. This time it was much worse. My tongue felt swollen, and the welts went all the way down my chest and onto my ears. I wrote my primary doctor who gave me another round of Prednisone. 

                               

When I had my Rheum visit in the beginning of March, she did a number of tests that also came back with mostly normal results. The only thing abnormal that she explained was protein and blood in my urine. We did a follow up urine test which came back, of course, normal. Was it a coincidence that this happened the same day two months apart? Both times were right at the start of my cycle, which I found interesting. 

This is when I decided to pick myself up by my bootstraps as they say, and do something on my own. On March 5th, 2018, I began a strict Elimination Diet. There seems to be so much inflammation happening in my body, this was the only thing I could think of to change that was in my control. I followed Whole30 while also cutting out Nightshades (tomatoes, white potatoes, peppers, eggplant, and more) in a desperate attempt to reset my body and everything that's been going wrong. After just a week, I noticed some improvement in my muscle and joint pain. After a couple of weeks, the daily flushing in my face started to improve as well as I was noticing decreased stress/anxiety. Nothing was totally cured, but it was helping, and that was a start! After a month passed, I had a food & beverage media event to attend that I had been extremely excited about for a long time, and what a perfect time to reintroduce some of the things I had eliminated, to see how I would fare. WORST STOMACH ACHE EVER within 4 hours. Was it that it was too greasy or rich for my stomach after a month of eating so clean? Was it the gluten? Was it the dairy? It was such a localized stabbing pain in one spot that left me feeling nauseas and kept me on the toilet for hours. I assumed it was the gluten and said "No more of that, ever!" So the following evening I somehow managed to get back an appetite before another event. This time it was actually a gluten free event, yay! I felt like I was in the clear, so I ate some gluten free dishes that had a small amount of dairy in them. WORST STOMACH ACHE EVER, AGAIN. So was it just the dairy? Was it either? Was it both? I don't want to find out, so I'm giving them both up for good. Luckily, I've been able to add back in Nightshades without any issues, but I've been sticking to strictly gluten/dairy free, as well as soy and refined sugars. My alcohol consumption is almost nothing now, besides an occasional glass of wine. I'm finding even some alcohol I should be able to have will still upset my stomach. Last week, I had that "WORST STOMACH ACHE EVER" without eating any gluten or dairy that I was aware of, and it lasted almost 48 hours. I wasn't able to eat anything for over 24 hours, and when I wasn't laying down trying to will it away, I was on the toilet. This was very concerning, so back to the doctor I went. 

She tested me for H. Pylori, a common stomach lining infection that can be treated with antibiotics just to rule that out. It was negative. After looking at me and speaking with me, she showed great concern for my GI symptoms and significant weight loss. Even with the diet change, I'm now down to just over 100 pounds, which is even less than what's considered the "low" weight for my height. She has me scheduled for a full GI workup, including a full abdominal ultrasound, endoscopy and colonoscopy. While I'm waiting for my ultrasound appointment this week, as I write this on Monday, April 23rd, guess what happened? It's been 2 months since the last welts/swelling incident. Today is 3 days earlier than normal, but I'm starting my cycle this week and my face broke out in the hot welts again last night and this morning. I did not get the swelling yet as I had the past two times, but I'm holding my breath on that one. 

If you can believe it, there are still many things I've left out in this blog post about abnormalities with my health. I told you I could write a novel. Unfortunately, I don't have an answer yet to the progression of things and what has been going on the past few months, but I truly believe that cutting out gluten and dairy has helped me in so many other ways. Just doing daily tasks like bending down to put the harnesses on my dogs and walking them up and down the staircase to go outside isn't as taxing as before. I'm able to move much more freely and without as much pain. It has also improved my mental health, specifically my anxiety and severity of hypochondria. I know they can come at any time, but I haven't had a panic attack since eliminating them, and I'm learning to take this health journey one step at a time instead of worrying about what hasn't happened yet. I'm doing everything the doctors are recommending, and I'm advocating for myself and asking for tests and appointments on my own terms as well when I want more answers. Changing my diet so dramatically has been a big adjustment for me, but something I feel is more important than anything right now. There are so many temptations every day in our world we live in, but knowing the physical repercussions of those choices weighs far heavier on me than the temptation itself. It has completely altered my relationship with food in a positive way. No matter what I am diagnosed with next (if anything) I will continue making this choice for myself. 

Have you ever had to make a drastic diet change for health reasons, or just simply because you knew it was healthier for you? Do you have experience with eliminating gluten and/or dairy after a lifetime of consumption? I'd love for you to share your stories, insight, or tips in the comments! If you don't feel comfortable sharing publicly, feel free to send me an email so we can support one another! 


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