Testing, Testing, 1, 2, 3......

Testing and doctors. These have become 2 of my least favorite things. My GI doc started to become less than sympathetic with me.  I think he was frustrated that I was having these "issues" and tests were coming back normal. He told me he didn't know what to do except treat the symptoms.  Great! Not. I saw a new primary care physician who referred my to a new allergist. A well known allergist. I was excited at the prospect of well known allergist reviewing my case.

On the day of my appointment, I was scared and excited. He walked in and told me that he would be able to help me and asked me to share my story. He sat and listened. Actually listened to me. When I was done, he looked at me and said "I think I know what is wrong and you will be able to add more foods back into your diet. No one is allergic to that many foods. Something else is going on." Tears came to my eyes.  A glimmer of hope, so exciting! He thought I had eosinophilic gastroenteritis. Basically, my eosinophils were high and  I having an allergic sensitivity in my gut. The thing is, all of intestinal biopsies came back, you guessed it, normal. The biopsies would need to have eosinophils in them to have this disease.  I found this out later.

So with this "good" news of me having this disease, the allergist wanted to do more tests to rule out other issues. He sent me for an EKG, blood work, chest x-ray, and a CT. Before I even got home from the CT, the allergist called me to tell me that the CT showed blood clots in all of the major arteries in my abdomen and that I needed to have a MRI in 2 days. What? Blood clots? Major arteries? Was I going to die? Holy crap! I am too young to have this. Who was going to be the mom for my son and the wife for my husband? Those 2 days were stressful to say the least.

I went in for the MRI which is an experience in itself. I am claustrophobic, so medication was welcomed, and I was calm and peaceful going into the MRI. Using breathing and guided imagery also helped. So after sleeping well through the night from the drugs, I got the results. Good news - there are no clots. They misread the CT. Oh, good! BUT, there is a spot on your liver and we are not sure what it is. Huh? Being in the medical field and working with oncologists, my mind goes to cancer. Because I knew an oncologist he took my case and MRI to a group meeting. This only took a good month or so to happen. Another long time of stress and wondering if I was going to die. The meeting of the minds included liver specialists, GI specialists, oncology specialist, radiology specialists, see the pattern. A whole lot of "specialists" looked at my case and determined it was just scar tissue. Ok.... from what? Answer: who knows. Plan: another MRI in a couple of months. I am becoming an insurance companies nightmare.

The follow-up MRI was fine. No change, of course. So, I was told again, they didn't know what to do. I was to keep taking the prednisone that I had been on and they referred me to Mayo for more specialists to look at my case. Short story: food intolerances and IBS. Plan: deal with it and if the pain doesn't go away, come back for more tests! Ugh!!!

My life was on a roller coaster as it was and those couple of months with labs and MRIs and CT scans just added to the nauseating ride. At this point, I am sure I was depressed at some level. I was feeling better being on the prednisone, but prednisone has such horrible side effects that all I wanted  was to get off it. But how? I had so much pain when I tried to ween down the dose. So many normal test results. What was I suppose to do? I guess live with it. Right?

In the beginning

Today I woke up to the sound of birds chirping, the sun rising and warming the earth, and a feeling of peace and happiness inside me. Four years ago, my mornings were quite different. I usually awoke many times during the night. Not from restless sleep or a dream I was having or because my son needed me. I woke up because I was having severe abdominal pain. It felt like my insides were tying themselves into the tightest knots they could. I knew that I was going to be in for a day of unpleasantness. My mind would start running through the previous day wondering what I had eaten. Why was I in so much pain? Why was I getting sick. I'm not talking about a few extra visits to the bathroom. I'm talking about 24 or more hours of constant pain and running. I would get so dehydrated because I could not keep anything in. I was scared and tired. I started with my primary care physician, as most of us would. He thought it was either my gallbladder or gluten intolerance. So here started my journey of doctor visits and tests.

The tests started with checking out my gallbladder - normal. Checking my labs - normal. Then checking my colon from top to bottom - normal. No celiac or anything abnormal. Great! Right? Not so much. After taking gluten out of my diet, I felt better, but not great. I was still spending way more time in the bathroom and curled up in pain than I wanted to. On top of all of this, my weight was dropping. Every "sick" episode decreased my weight by 5 - 10 pounds. As I would start to gain it back, the next episode would hit. My lowest weight was 40 pounds less than where I started. I am 5' 5" and weighed 97 pounds. That was in January of this year. Here I was in my early 30's with a beautiful family. My son is amazing and growing up. My husband is so supportive and loving. We love to be outside and explore the world together. Unfortunately, I was missing out on life.

The next step is what has caused the most issues in my life to this day. Because the tests were all normal, my doctor suggested that I see an allergist because he thought I might have food allergies. I went in for skin testing and guess what..... I was allergic to a ton of foods! The test said I was allergic to soy, wheat, barley, buckwheat, peanuts, tomato, peas, carrots, celery, and more. My head started spinning and the tears welled up in my eyes. I looked at the allergist and asked, "What am I suppose to eat?" His response was, "None of those foods unless you want to get sick. You'll have to trial them and see which ones make you the sickest." Well, if he had been in my shoes the year prior and had spent more time in the bathroom than enjoying life, I wonder if he would have been more compassionate. After that appointment, my mental state went from somewhat healthy to extremely unhealthy. I was so scared of getting sick again that my mind went off the deep end. I became extremely scared of germs and food. Scared of germs? Ok, maybe that could be a little normal, but scared of food? My diet became rice, corn, a few meats, broccoli, and tapioca based items. Guess what happened? My pain started to go away. This made my brain think that I was on the right track, but is this the way to health? Not eating a variety of foods? And I was still not feeling well all the time and suffering from abdominal pain. In fact, 2 years into this saga, I was so sick that I ended up passing out and getting an ambulance ride to the hospital. This only made my fear worse. So what was next?