I have a few theories…infertility treatments, extreme incessant stress, loss, trauma…?
With hindsight being 20/20, I am able to see that things started changing around 2010. It was also the first year I had undergone infertility treatments—treatments that lasted for nearly a decade.
It wasn’t overnight, my body started rejecting things very slowly; first…it was dairy. I would get terrible stomach aches and loads of gas and bloating after eating anything with cheese or milk. I was so uncomfortable I had to use a heating pad to just help alleviate the pain and pressure in my gut. I became extremely constipated and had to use all sorts of fiber supplements, even then, I was barely able to go to the bathroom at all.
When I started putting 2 and 2 together, I started to see that the culprits were milk and cheese and anything that derived from them. Which, by the way, was so extremely strange, as I had ingested dairy products my entire life without an issue; I LOVE cereal—any cereal—and cold milk…YUM! When I finally gave dairy up for good, I felt SO much better. The bloating, pain, pressure and gas stopped. The thing is the stomach symptoms stopped, but the constipation continued. I tried everything. At that point, I chalked it up to the hormones.
Moving on to 2012 as the infertility treatments continued, along came with them extreme stress, loss and emotional trauma. My marriage was very troubled, and I had lots of stress with my job—I was a teacher in a public school system near my home. I felt like I was taking double punches from all sides of my life.
Then, in 2014 we bought a new home, but weren’t able to move in right away because of renovations. While we renovated our new home, we lived in my in-law's basement. All the while, still dealing with infertility treatments, an unstable relationship and the loss of my precious Yorkie, my soulmate, Chloe. Chloe died on the very day we were to spend our first night in our new house; after that, things really began to change. About 6 months after I stopped eating dairy products, I started noticing every time I ate any sort of breaded item there was swelling in my hands, arms and legs. At first, it was slight, I thought it had been from where I had worked out hard that day—I work out about 4-5 times per week, but then after about a year of swelling off and on, pretty inconsistently the swelling continued to get worse, that’s when I started a food journal—you may think, wow, a year, why didn’t I think of a food journal earlier? With all of the hormones I was taking, surgeries I had and pregnancy losses, moving and renovations, I didn’t know if it was hormonally based or stress. My body was doing all sorts of unfamiliar things during that time. When I finally started the food journal, sure enough, it was every time I had items that contained wheat. This was also about the time when gluten was becoming the devil, so with all that I had read about gluten, I decided to go gluten free. It worked for a bit, but after going gluten free for a few months my body started to react to rice. So…I gave up rice. Then, a few months later the same thing happened when I ate oats, and then, about a year later, it was corn. Over a period of a year and a half I had lost all grains.
Another year had gone by, now it’s 2016, and I was doing fine being grain free. The Paleo diet became popular, and it made it easier for me to find things to eat. Although…I did have to relearn how to cook, as I was raised in a southern home and my family had always used left over cooking grease, cream, butter and grains, to cook anything. It was tough, but once I knew what to look out for and how things worked together, it was doable. With all the changes I had made I thought I had solved my issues, and I resigned to the fact that I would just have to be grain free for the rest of my life.
Then, in 2018 things took a deep dive. We had completed our infertility treatments, we were working on our relationship, and I was trying to get my life back in order. I had lost so much of myself with the infertility experience that I was very depressed and emotionally overwhelmed with life. It almost seemed like my body was rejecting me. It was a constant fight. I NEVER felt good. I was in pain all-day-every-day, I realized when I started getting some eye rolls and some dismissals from others, I had begun to share too much about feeling badly all the time and I started to sound to others like a hypochondriac. What did I do? I started to keep things to myself. That was when I took a nosedive into research. I was no stranger to it, I had spent years researching infertility to help my doctors know better how to help me, so I took it upon myself to figure out why my body was rejecting foods and what was causing the crazy, seemingly, unrelated symptoms. It was actually the thing I turned to for guidance and support, since I couldn’t talk to anyone else about what was going on—I felt like I was all alone. I was the only one with these symptoms, I didn’t know anyone who had the same issues as me, I even searched the internet for someone, anyone to help me, anyone to relate to, and even though I found some gleamer of hope with the medical journals and research I was obsessively reading all hours of the day and night, it was very hard for me to get anyone to listen to me. Doctors were just not open to the idea of what I knew was wrong with me.
I was trying my best to save myself, if no one was going to believe me or be able to help, I had no other choice than to educate myself to heal myself. I read everything I could, and one thing would lead me to the next. I went to doctor after doctor until I could find someone who knew what I was talking about. I was determined to heal myself and get my life back.
My outgoing personality had begun to disappear, at least what was left of it after all I had been through with the infertility treatments. It was so tough to enjoy a night out with my husband. I began to make excuses for not being able to go out with my friends. I just felt so exhausted and weak all the time. I did wonder if it was just my being so depressed that I was feeling all the loss and trauma from the past many years in my body. Again, I kept it to myself and tried to work through my feelings alone. The pain just kept getting worse, one day I was just not able to get out of bed and get moving. I started to wonder if I had an ulcer or something. My whole gut region was tender, felt inflamed and I still I was barely able to eliminate my bowels. I made a doctors appoint with my general practitioner (GP), during my visit he asked me a few questions, I filled him in on what had been going on and without even touching my stomach to feel for anything, I was told that I was depressed, and he gave me an antidepressant. Although I knew I was feeling low, I knew it was much more than that. I refused to take the meds and promptly changed doctors. This is where the cascade into hell began. I made appointment after appointment trying to get help and I was either given an excuse as to why I was making up the pain or I was given antacids to help with “gas”.
Finally, after beginning to lose more foods, fruits and vegetables, preservatives, and spices I got an appointment with a gastroenterologist that knew just what to do. So now, in 2018, I was told the truth. The GI doctor looked me straight in the face after I had told him what had been happening to me over the last several years and he said, “I don’t even know where to start. Would you be willing to go to the Cleveland Clinic where they have GI doctors that specialize in this sort of thing?” I emphatically answered, “YES!”
So here we are the end of 2018, I finally got an appointment with the Cleveland Clinic, a progressive research hospital located in Cleveland, Ohio, about 6 hours from my home, for August of 2019.
I had already lost 20 lbs. off my 140 lbs. femininely muscular, 5’7” frame. I was barely able to eat anything at this point. It was as if I was losing foods, I could previously tolerate, every day. I was down to 5 foods I had to rotate every 48 hours to give my body a chance to let any sort of irritation it might create toward them subside so I would be less likely to lose those foods, too.
None of my friends or family could understand what was happening. I felt like a burden, every meal I had out or with family and friends had to revolve around me, and many got irritated by the whole thing. There was always eye rolling or frustrated responses from those I ate with, waiters and restaurant managers. I tried to make things as easy as I could. I would call ahead to restaurants and talk to the chef to order my meal ahead of the gathering. I would eat before I went out or take my own food to a party. It was so embarrassing, depriving, burdensome, and frustrating. I was very scared; my mind would often think of different scenarios and how I could avoid them or what the outcome would be if I had to take something or accidentally ate something I wasn’t supposed to have. I often thought about what would happen if I couldn’t eat food anymore. I was becoming “allergic” to all foods I ate. Would I have to go on a feeding tube, and if I did, could I even have the mixture? So, one day, I looked it up and there was rice in the feeding tube mixture, so I wasn’t even going to be able to have that. I started to worry about ever getting hurt or needing medical attention because I was “allergic” to so many ingredients in meds and vitamins I had to stop taking anything and everything. I was even having issues with my thyroid medication.
My hair started falling out, the brain fog was really troublesome—I had a problem recalling simple vocabulary. My energy levels were nonexistent. It wore me out just to talk to people. My heart palpitations became so severe that they would take my breath away, the joint pain in my knees and elbows became so extreme that I didn’t know if I could continue to exercise and the pain in my abdomen was constant and only worsened when I ate anything. One night, the heart palpitations were so strong that they woke me up from sleep. I didn’t want to wake my husband, so I got up and went to the couch. I was scared and tried to breathe and calm myself. They subsided, thankfully! I was scared I would have to go to the hospital, and they wouldn’t be able to do anything for me because of my “allergies”. As soon as the Cleveland Clinic opened that next day, I called the office where I had the appointment and told them I was terrified with my experience from the night before and I wanted to move my appointment up. Now, the problem was…it was April 2019, we had just moved…again—our house sold unexpectedly, and we had to live in a rental while we built our new home—I know, right?!? Along with that, Covid happened, and we had been in lockdown for just about a week and half. All non-essential medical care was suspended, but when I told them of the night I had, I had a new appointment for the first of May!
At the Cleveland Clinic, I finally received the care I felt I needed. I had an appointment with the GI doctor, and after he heard my story, he put his hands on my hands and told me, “I believe you.” I instantly burst into tears. I had been trying to get someone to believe me and no one, not even my family, friends, or even my husband really believed me. The doctor sat there with me, and he just let me cry. I know he knew that I needed to release it all. He was so kind. After I got myself together, he told me that he had only seen “this” one other time, but if I was willing to work with him, he would do all he could to help me. Of course, I said yes. At that moment he sprang into action. He called a nutritionist in to help me come up with meals and snacks I could eat to help me bring more nutrients into my body—I was extremely malnourished because I wasn’t able to eat enough of what my body needed. Bless her heart, she tried, but I was so limited, even she didn’t know what to do. Then, he called in his nurse and got all my blood work taken care of while I was there. Before I left, I had an appointment for an endoscopy and a biopsy of my intestines to see what was happening.
Fast forward to the results. My gut was “tattered”. I had major inflammation, nodes and scaring, and he concluded that I had permeable intestines (leaky gut in layman’s terms). Although, conventional medicine doesn’t recognize leaky gut, permeable intestines mean the same thing. Leaky gut is when the lining of the intestines has become weak and has allowed food particles to seep out into the bloodstream. When this happens, your body sees foods as foreign, so it will create antibodies toward these foods. Just like it creates antibodies towards viruses and colds. With the leaky gut, my body saw the foods as something it needed to fight off. The way to overcome this is to heal the gut and heal the gut lining. I felt major vindication. The look on my husband’s face was partly, compassion and partly shame. I think he felt really bad for not really supporting me before. After that, everything began to change. From there, the LONG roller coaster to healing began.
In 2020, I went to a few doctors for a major histamine intolerance issue. All they wanted to do was throw drugs at it, and while they worked for a little bit, my body quickly built a tolerance to them and only needed more to help with the symptoms. I stopped taking all the medications they recommended and went back to researching. It seemed that when I was able to heal one issue, it led me to another issue in my body that needed healing. What I thought was just leaky gut, was actually layers of issues that lead to the final breakdown of my gut and body.
It wasn’t until I met Debra in 2018 that I found someone who had the same kind of experiences. In many ways she was my earth angel. She pointed me to her functional medicine practitioner and the rest is history. What I dealt with for 11 years, I was able to have answers for AND steps towards healing in only a few months. While I still had to take things a bit further on my own and find the answers even the functional medicine doctor didn’t understand, I finally started, again, to reintroduce foods slowly and over the last two years, I would say I have gotten back to where I was with the initial loss of foods. Where I am ONLY sensitive to grains, dairy, and some nuts, but I have high hopes that I will soon be able to get those back, as well. There is a new procedure I am going to try and if it works like it is supposed to, I will have all my foods back! STAY TUNED!!
Today, I have gotten back to a healthy weight, able to enjoy social outings, restaurants and traveling again. I still have to plan ahead, but it has now become a part of my life. I still worry about contamination or infecting myself, but I take every precaution. I have learned so very much because of the issues I have had, it has definitely been an evolution, that overall, I feel has been for the better. I, now, live a life free of toxins and preservatives. I eat as clean as anyone I know, (besides Debra), because now I have to by default. But I feel great, I feel stronger and healthier now than I have ever before. Because I’m the one doing the cooking, my husband lives a very clean and healthy life, as well.
Would I change the way things have turned out for me? I don’t know. If I have the opportunity to get back the foods I’ve lost, I don’t think I would change too much about the way I have become accustomed to eating. I like the way I feel, and I like that I don’t have to worry about diseases that have been linked to all the toxins in our foods. I can now almost see it as—a blessing.
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