Finally, A Diagnosis.

The pain was excruciating. I had been doubled over and in tears for hours. It wasn’t unusual – I knew from years of experience that within a few hours, or possibly a few days, it would be over. What made it different this time was that I wasn’t alone for the first time since moving out on my own. My fiance at the time was with me and he had said he had never witnessed anyone in so much pain. He started to panic when after several hours I wasn’t getting any better. I was used to it so I didn’t panic but I could see the worry on his face every time he came in to check on me. Finally, after six hours of watching me suffer, he demanded that I go to the emergency room. I knew better – because I knew they couldn’t help me. I’d been there before. I’ve been seeing doctors for my stomach troubles for years… but his panic made me think that maybe it really was bad  – maybe there really was something wrong with me – but for so many years so many doctors had been telling me that there wasn’t. They said it was depression. It was anxiety. It was undiagnosable. Untreatable. All in my head. Stress. Maybe this time would be different.

Maybe this time would be different.

We waited in the cold, stale waiting room for what felt like an eternity. I would have preferred to be at home in bed because over the years I found that I could lay on my stomach, tuck my knees up into my gut and push really hard and that made it hurt a little less. But I had a glimmer of hope – my mom tried so hard but she was never able to get the doctors to help me – and I certainly wasn’t able to either but maybe this time they would listen because my fiance wasn’t one to back down. Finally, we were called back into a room. Immediately they hooked me up to an IV because I was severely dehydrated. They drew blood. I had an MRI. I was feeling more hopeful as time passed. They tested me for upper GI issues as a teenager but since then, this was the most serious anyone in medicine had taken me. I could feel the hope building up – but I tried to suppress it because I knew what was most likely coming next. Finally, after hours of testing, waiting, unbearable pain, and pure exhaustion, the doctor came into the room. He looked me straight in the eyes, with such a serious look that I thought the absolute worst news was coming next – was I dying? Did I have cancer? Were my insides exploding? Did we wait too long?

As a child, my mom always said that I had a nervous stomach and I expressed my emotions physically. Worried? Stomach ache. Scared? Stomach ache. Stressed? Stomach ache. Couldn’t sleep at night? …. You get the idea. I was always missing school because my tummy hurt. Honestly, I don’t remember the pain ever being “that bad” as a child so when doctors told my mom that my tummy aches were nothing to worry about – we believed them. As a teenager, I started working at a child care center so I was catching every illness out there, especially strep. I think I was on antibiotics more than I wasn’t during my 16th year. The added stresses of having more responsibilities, homework, and being sick all the time made my stomach issues increasingly get worse. When I was about sixteen one doctor finally took my mom seriously enough to send me to a gastroenterologist and he wanted to do an upper GI scan. All I remember was drinking something that tastes like a combination of pepto bismol and chalk, and wondering if something was seriously wrong with me. I don’t know if that doctor ever called my mom with a diagnosis but I think it was soon after that when my mom wanted me to start seeing a therapist for anxiety and depression. She was rightfully worried and no one seemed to have any answers for us. Was I anxious and depressed? I didn’t know, I was a teenager. I had friends and was involved – but maybe. Honestly, looking back I still don’t know. I do know that the therapist was not helpful at all though. 

As I remembered back to all of the doctors I had seen over my childhood and teenage years, I started at the emergency room doctor anticipating his answer, fear began to take over every cell in my body. I was finally going to have answers to what was wrong with me. Did I really want to know?

And then he said these words:  “You are full of sh!t,” and then he and my fiancé started laughing.

Have you ever had one of those dreams where people are laughing and pointing at you and it won’t stop? I don’t think they were actually laughing and pointing but that’s how it felt and how I remember it. My heart sank. Any hope that I had to find the answers completely left my body.  The doctor pulled out the MRI image and showed my fiance – not me – how my intestines were full and explained to him that I was just constipated. He told my fiance to take me home and give me some prune juice and I’ll feel better in no time. We went home and before I drank any prune juice I went to the bathroom. I was not constipated and I was still in pain for the next twenty-four hours.

I continued to live with the pain. After getting married my husband never took my pain seriously and would jokingly say every time the pain returned that I must be “full of sh!t again” I started to doubt myself and my sanity. I was put on antidepressants until I decided to start trying to conceive to see if it helped eliminate the pain. It didn’t. During my first pregnancy, I gained over 75 pounds. I had very little energy and the birth took everything out of me. After a 72-hour labor – yes, 72 hours – I ended up getting really sick. I spiked a fever of over 105 within hours of having my baby and was diagnosed with a rare blood infection. The doctors had no idea how I got it but assumed that I must have had a urinary tract infection that got into my blood during the transition phase of giving birth. I was in the hospital for a week getting intravenous antibiotics. I had to go home with a PICC line and continued to get intravenous antibiotics for a couple of weeks.  

After having my daughter, my health appeared to finally be getting better. I still got stomach aches but I was used to those. I started losing my pregnancy weight quite rapidly; I gave all the credit to breastfeeding. Then I started losing my hair. I had always heard about postpartum hair loss so I didn’t become concerned until it started coming out in large clumps. I called my doctor and was asked to come in to be checked. My doctor was thrilled about how much weight I had lost, praised me on how well I was doing and said that the hair loss was totally normal. She asked me if I was depressed because my skin was dull and my eyes had dark circles. I told her I didn’t think I was – I was happy with my life with my baby girl – my marriage was tough but I didn’t think I was depressed.

I was losing my hair in clumps

Soon after my daughter’s first birthday I went in for my annual check-up and told my doctor that I was still losing my hair in clumps and I was starting to have panic attacks. My heart would begin to race for no reason at all, even if I was just laying on the floor with my daughter. She told me that the hair loss was just my hormones and recommended that I get on anti-anxiety medication for panic attacks. I went to a different doctor for my annual well-woman check-up and when the doctor felt my throat she asked me if I had ever had my thyroid checked. I asked her what a thyroid was. She giggled and said – it’s nothing to worry about. It is just a gland in my throat that felt a little swollen. I remembered having swollen lymph nodes in my throat all the time as a teenager so I wasn’t concerned about it.

She ordered tests for me and called a week later and said she was referring me to an endocrinologist because my thyroid was off. I had no idea what that meant. When I went to the endocrinologist I was surprised to meet him in his office, not in an exam room. He had my chart in front of him and said that I had hyperthyroidism and he wanted to have a scan done of my thyroid to make sure I didn’t have thyroid cancer. I asked him what the chances were that I had cancer – I’m not sure what his answer was but I remember being frustrated with him because he didn’t answer the few questions I knew to ask and he didn’t even do an examination. He said he was putting me on medication for my thyroid and beta-blockers to help with my heart palpitations. I asked him if I still needed to take my medication for anxiety and he told me I shouldn’t stop taking it. I don’t remember how long I had to take beta-blockers for but I do remember how horrible they made me feel. My hair became a completely different texture – I had had the same hairstylist for years and she was shocked not only by the amount of hair I was losing, how thin my hair had become but also how brittle my hair had become. My nails started breaking and my skin was so dull and sunken in that I would look in the mirror and think to myself that I looked much, much older than I was. I did not have thyroid cancer, and the next time I had an appointment I mentioned to my doctor how I was feeling the and he said that I didn’t need the beta-blockers anymore but diagnosed me with Graves disease and said that I would be on medication for the rest of my life and I needed to schedule a time to come in to have it my thyroid killed with radioactive iodine. I was still breastfeeding at the time so I asked him if I could put off having that procedure done and he said it was okay but needed to be taken care of as soon as possible. 

It never felt “right” with me to have my thyroid killed – I knew nothing about it or what it did – but I KNEW that killing it off was not right for me. The medication I took kept my thyroid blood test regulated but I never felt good. I was still rapidly losing weight, losing my hair, my skin was dull, my nails were brittle, and then my teeth started to break. I have been blessed my entire life to have had dental insurance and have gotten my teeth cleaned every six months my whole life with a couple of exceptions. I had very few cavities – why on earth were my teeth breaking? No one knew.

Why on earth were my teeth breaking? No one knew

Almost five years later I had my second daughter. After having her, I started to feel like I was losing my mind and I started gaining weight rapidly. I had read about postpartum depression – I didn’t know if I had it but I knew something was seriously wrong with me so I called my doctor when my daughter was about 6 months old to be seen. She referred me to a psychiatrist – who put me on a cocktail of multiple antidepressants and anti-anxiety medications. I became numb. All of my emotions were completely suppressed. The psychiatrist tested me for every mental illness you could possibly think of. He landed on bipolar. I believed him for about 24 hours and then realized that yes, something was seriously wrong with me, but I knew that I did not have bipolar syndrome.

I refused to see him anymore and weaned myself off of all of the medications he had me taking. I started digging and found a doctor who I thought might be able to help me. The first time I met him I knew I liked him. He sat with me for over an hour actually listening to me. He ran a few tests and agreed that there was something wrong and it wasn’t mental and although my thyroid numbers were off – he didn’t think that was the issue either. Even though for years I had been pressured to kill my thyroid, he agreed that if my gut was telling me not to kill it, we shouldn’t. Finally, a doctor who was on my side.

My marriage was very stressful. It wasn’t good for me physically or mentally. After ten years of marriage, two years after my youngest daughter was born, we divorced. About a year before my divorce, my family was hit with severe trauma. The added stress of the bad marriage, the even worse divorce, and the trauma all added to my health problems. I was exhausted beyond words. Physically & emotionally spent. After my divorce, my daughters and I lived with my parents for a year and a half. During that time I was either working, taking care of my daughters or sleeping. Every time I would go in to see my doctor he would prescribe a higher dose of vitamin D and give me B12 intravenously. I think I was about 38 years old when he wanted to pull some routine tests because he could see my health declining and no matter what I tried, I was unable to lose weight or feel decent – let alone good. He did a full routine panel – his routine panel was different than most doctors – he checked for things most doctors didn’t.  Finally. A diagnosis.

Finally. A diagnosis.

Celiac Disease.

Just typing those words makes me breathe a huge sigh of relief. Sadly, that’s not the end of the story though. He referred me to a nutritionist who only told me to stop eating gluten. This was in the mid- 2000’s – and I had never even heard of gluten. After having a biopsy, I found that the villi inside my intestines, designed to hold onto nutrients from the foods we eat, were mostly gone. I was severely malnourished.

After seeing the nutritionist, I went home and started digging – my Google searches included terms such as “what is gluten,” “gluten-free diet,” “how to eat gluten-free.” And that was when I found another nutritionist who taught classes on starting a gluten-free lifestyle. She taught me what to eat, how to shop, what foods contain gluten, what hidden gluten was, and all about cross-contamination. And that is where I learned that if you have any autoimmune disease you should not eat gluten, and Celiac disease is usually the catalyst that leads to multiple autoimmune diseases – many people who have celiac disease have at least one other autoimmune disease, sometimes multiple and often times they go years and years with a new autoimmune diagnosis before anyone catches celiac. It had been almost 10 years since my diagnosis of Graves disease and a lifetime of pain, misdiagnoses, doctors not listening, and literally laughing at me and telling me that I was full of sh!t.

Sometimes I wonder what would have been different had I been diagnosed as a child with Celiac but as I sit here and reflect on my journey, I can see God’s hand in it the entire time. First, I am not sure I would have taken the diagnosis seriously, especially as a teenager who lived on mac and cheese and pizza, and I probably would have eaten gluten knowing I shouldn’t. But instead, I was diagnosed when there was nothing else for me to cling to except the hope of healing. Once I was diagnosed, that was when I started arming myself with knowledge, learning all that I could about my body, advocating for myself and my family, and learning how to heal my body from the inside out. It has been a very long, very challenging journey, but it brought me right here, right now. Right where I need to be so that I can help others as a health coach. I learned from my experience to advocate for myself and my family, and the dire needs to listen to my body and to be heard.

Friend, you are your best advocate. You know your body better than anyone – even the experts. And you deserve to be heard. Your story matters. Your health matters. You matter.

I would love to partner with you to help you find answers if you’re still searching or just listen and guide you. Whatever you need, I am here to help.

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