My Path to Diagnosis: Fructose Malabsorption Disorder

For the last five years or so, I have been dealing with chronic stomach pain, which until recently, was undiagnosed.

At first, I was told "drink more water." That didn't seem to help. I was told "eat more fiber." That didn't help. One doctor frowned, and told me that if my boyfriend loved me, he would wait (although I was 26 at this point, and in a monogamous relationship). He sent me to a gynecologist to get tested for STDs, have a Pap Smear, and an ultrasound. Everything came back normal. I decided to sign up for Carelink. The doctor ran a blood test, checked for diabetes and whatever else, and everything came back normal. She told me to "drink more water," and also to "eat more fiber." I did, but still, my stomach hurt.

My allergies were spawn of the devil. I took Claritin D every day, and blamed it for my insomnia- but I had to have it, or my headache was out of this world. None of the many nasal sprays they gave me seemed to help. It seemed that the more my allergies bothered me, the more my stomach hurt. It hurt to sit for too long. It hurt if I ate. It hurt if I didn't eat. It ALWAYS hurt. It became my norm. I was always distended. I began to have acid reflux. GERD. Ear pain (which I now know can be caused by severe acid reflux). I tried Ranitidine, Prilosec, Prevacid, Nexium... nothing helped. 

I had a Celiac Screen. I tested negative. They did an abdominal ultrasound, and the medical student raved about how wonderful my organs were, how easy it was to get a good picture. She wished she could practice on me all the time. Everything was normal. The doctor recommended I see a gastroenterologist, but I didn't think I could afford it without insurance.

So I didn't go.

The Celiac screen got me thinking about food, though. I noticed that I was starting to get strange sickening smells in my nose around certain foods- I would always describe it as "rotten fruit and sawdust." No one else could smell these smells. Popcorn, our all-time family favorite, began to taste TERRIBLE. The smell made me sick. Chocolate smelled terrible. CHOCOLATE! The former best smell in the world! I couldn't drink Big Red without the smell. A friend sent me an article on the horrors of corn, and so I tried to pay close attention. The next time I had corn... there was the smell! My Mom sent home a turkey casserole made with corn tortillas... it was AWFUL! It stank. The smell was on my breath all the time. It was the same smell as my fecal matter. I was disgusted, scared, confused. My stomach hurt all the time. I stopped eating anything with corn in it. I knew it made me sick.

I thought that maybe that was it- corn was the answer- but the pain didn't go away.

We went on vacation, and on our road trip, I had what I though was an allergic reaction to something in the New Mexico air- since it started with a slightly stuffy nose. The stuffy nose quickly turned to the inability to get a deep breath. I started hyperventilating, and snot and tears poured from my face. I couldn't breathe. My hands tingled. My nose tingled. Luckily, I had packed some Benadryl along with other "just in case" medicines- and my husband tore through the bags to get me some. After laying on my back for awhile, and taking deep breaths, I began to normalize.

All through our trip, I laughed and joked that I was allergic to New Mexico, but when I had another attack on our way back into Texas, I began to wonder if I really was!

My stomach still hurt. My body was tired, but my mind was racing all the time. I worked a lot, did a lot of photoshoots, but it was so exhausting to pretend to feel good, when my stomach was in so much pain. My poor family suffered. I kept up appearance while working, and came home deflated and irritable. I was moody. I was impatient. I didn't sleep. Many times my stomach was so distended I had to unbutton my pants. I often looked as though I was four months pregnant. I never wanted to leave the house, because it was so much more comfortable to stay in my pajamas all day. I changed into them right away, every time I stepped foot into my home. When I did go out, I wore T-shirts, and didn't bother with makeup- because I was all bloated and ugly, anyway. Once, I told my Mom that I wanted to sit around the house all day without having to do anything, even take a shower or wash my hair. She said, "That's for depressed people," and I laughed and said I was joking. But I wasn't. My husband and I rarely had sex, because of the extreme pain it caused, and this was causing me a lot of guilt and anxiety (although he was quite understanding).

When I had another another attack after eating at a restaurant, I realized that each of the other two episodes also happened almost immediately after eating. I assumed I must have eaten some sort of corn. I though that maybe I was allergic to nuts, because I had almonds at or near two of the meals, and some fried food that could possibly have been cooked in peanut oil for the third. I popped some Benadryl, but I was scared, so this time I had my husband drive me to the hospital. The E.R. doctor told me I was having anxiety attacks, and prescribed me Xanax and said to take it three times a day. Of course, I didn't. I knew better. I KNEW that somehow, food was causing these attacks- but I didn't know what, or why. I experienced a few more attacks. I developed a light rash on my neck and chest, and when I had these attacks, the rash was angry. Avoiding corn, I created a frittata one night, with eggs, broccoli, cauliflower, red pepper, spinach (all healthy choices, right?), and had a severe attack, which in addition to the other symptoms caused my whole body to go cold, and my entire leg to feel like it had a "charlie horse" and jump around.

I was getting kind of scared, by this point. I was a google monster! I suspected pylori, candida overgrowth, diabetes, and a few other things, and considered getting my own tests done... but where do you start? Around this time I also began to discuss my symptoms with a friend, who I knew had a strict diet. She told me she couldn't eat gluten, and the sugar that comes from fruit. She described her symptoms before she was tested, and how she was finally diagnosed with fructose malabsorption through the "breath test" her GI gave her. I thought to myself "I have that!"I also thought that this breath test didn't sound nearly as daunting as an endoscopy, or one of those other scary procedures that my brain associated with the GI doctor.

 I decided to look one up. It didn't matter the cost. My symptoms were starting to freak me out, the pain was becoming unbearable, and maybe, just maybe, it was something as simple as this malabsorption thing.

So, I went to the GI. I drank a cup of fructose. The nurse informed me I might have diarrhea, and/or stomach pain. She said I'd blow into a tube every 30 minutes for up to three hours, or until I blew a 75 or higher (for a positive diagnosis). I went back to the waiting room, and very quickly had to run to the bathroom. I broke out in a bright red rash on my neck and chest. It felt like an elephant was sitting on me. When the nurse got me from the waiting room, so I could blow my first breath (not including the control), she exclaimed that she had never seen anyone break out in a rash before, that it was weird. Then, when I blew a 108 on the first breath, she said "That's because you're WAAAAAAAAAY positive!" Pause. "Hold on." She left the room and shut the door.

I was diagnosed with fructose malabsorption February 7th, 2013. I was also diagnosed with bacterial overgrowth a few days later (which I took some hard-core antibiotics for!) I was happy to know the cause of all of my discomfort. It was good to have a name for it. I was thankful that it wasn't something that could kill me. If my friend could live with it, then so could I! I was feeling very positive. Even when the nurse showed me the list of foods I could not have, I felt ok. I could do this. I could manage this. Dare I say I even had "fun" the first time I went shopping for new foods? I was learning to read labels. I was excited to cook at home, more.

 But, as religiously as I tried to follow the diet, I had another attack. My stomach kept hurting (keeps hurting!). Unfortunately, some days I feel worse than I did before. Some days I feel better! But many days, I feel worse. As with anything, there is a learning curve, and I'm trying my best to be patient. I saw a nutritionist, who definitely gave me some helpful information, but it seems that I am more sensitive to many things than other "fructmals" are. I am having to branch out on my own to figure this out. As I look for recipes and foods that I don't react to, I come up depressingly empty-handed.

But this is just the beginning of my journey! Sure, it's not a bowl of peaches, but it is what it is, right? And I have to deal with it, so I will. I have faith that one day I won't miss my old friend, Fructose. I have faith that one day I'll be a pro at all of this. I'll know what to eat, and what not to eat. I'll be a great cook, and share my recipes! I have faith that one day, Ill be able to eat out or go on vacation without fear, or have a drink with my friends, and not pay dearly for it.

I have faith that I will be a healthier, happier person.

Have faith with me.