Well, I’m not sure where to begin. I have been meaning to start my own blog for years, but never got around to it. Until now, I never realized that I was never ready to start my own blog. I felt that I was the only person in the entire world going through what I was going through and that no one else would understand. When I researched about my symptoms, I felt like no one else had a story like I did, and I felt alone. After being diagnosed for almost six years now, and doing constant research, I have gained the confidence to finally start my own blog. I decided to do this for myself, as well as anyone who is personally suffering from this disease, knows someone who is suffering from the disease, or knows someone who may be suffering from this disease. My name is Danielle and I have Fructose Malabsorption.
My story begins when I was born in 1996. A few weeks after I was born, my parents realized that I might have some intestinal issues. After being brought to the doctor, I was diagnosed with IBS (or irritable bowel syndrome, aka constipation). Doctors recommended Miralax. Apparently, this is common in infants. Years went by and doctors continued to tell me that I had IBS and began putting me on more and more Miralax. Eventually, my x-rays got to the point where a “clean out” was necessary. This meant being put under, so the doctors could “clean out” my colon. After the “clean out,” I was placed in the hospital for several days with a tube in my nose and Golytely put through my tube. This was to help finish “cleaning me out.” This process happened about once each year… sometimes more, sometimes less.
Over the course of several years, I had more tests than I can even think of. Some of the tests I endured included (but not limited to): x-rays, CTs, MRIs, PET scans, colonoscopy’s, endoscopy’s, digital rectal exams, ultrasound (with sigmoidoscope), barium enema, blood tests, balloon expulsion test, manometry, hide scans, gastric emptying, and many more tests that I can’t even remember. Most tests were negative, but I was diagnosed with IBS (when I was an infant), as well as acid reflux. Every doctor I saw wanted to do the same tests that had already been done, and in the end, would come up with the same diagnosis (IBS) and send me home.
In high school, I began to get even more sick. The symptoms I was encountering included (but not limited to): severe headaches, constipation, severe stomach pain (to the point where I could not walk), rashes that would come and go, hives, weight loss (because my stomach hurt so bad that I refused to eat), tiredness (I could sleep for over 24 hours at a time), dizziness, muscle spasms, vomiting, and a rapid heartbeat (which I learned to be from excessive laxative use, because that’s what doctors were prescribing).
During the first 17 years of my life, a lot of these symptoms were normal for me because I had grown up with this pain. Doctors often didn’t know how I was walking around and how my pain was not as high as they would expect. After having test after test after test done, and getting more sick as time passed, I didn’t care what happened anymore. I had no idea what was happening to me. I was always told that it could be way worse (and that is definitely true), but I was also in so much uncontrolled pain, and had doctors telling myself and my parents that this must all be in my head and that I just had severe IBS, that eventually, I didn't care if I died. I realized that I could be at peace, but that ultimately, it was up to God to decide my future. I started praying that I either find an answer, or leave this world.
In December of 2012, during my Junior year of high school, I got sicker than I had ever been. I had been to the emergency room five times within 2 months and was down to weighing eighty pounds. After being given Vicodin and Oxycodone, I was told to follow up with my family doctor the next day. This went on and on. Finally, in March 2013, we decided to try to get into Mayo Clinic. This is not as easy as you may think. Doctors would not take on my case because of how many previous doctors I had seen and the years of unending tests that had been done. Finally, we were told someone had taken on my case (only after my mom had called the hospital dozens of times). When I showed up at Mayo Clinic in March, I was doubtful. I had shown up at hospital after hospital trying to find an answer before. How was this trip going to be any different? I thought that I would meet with a doctor, he’d have to read through my chart right in front of me, he’d prescribe pain medicine, and I’d be sent home, yet again. That was not the case. I showed up to an adult gastroenterologists office, and he had read my entire chart. He had some ideas of what could be wrong, and he had a plan. The doctor told us that if there was not a diagnosis by the end of the week, we would be staying until there was an answer.
On day two of being at Mayo Clinic, I had a Hydrogen Breath test done. This is a test where you breathe into a machine to get a baseline result, then you drink a cup of fructose and continuously breathe into the machine every 30 minutes for 2 hours. As soon as I drank the cup of fructose, I began getting sick. It was the same feeling I had been feeling for the past few months. Finally, I was hopeful. My mom and I got a call from the doctor that night. The diagnosis was Fructose Malabsorption. My prayers were finally answered. I was so grateful that someone finally had a diagnosis, but I also had no idea what this meant. Years later, I finally have some answers.
Fructose Malabsorption is a condition where your intestines have a hard time digesting sugars due to a lack of enzymes made by the liver. With fructose malabsorption, each person is different. This is not a black and white diagnosis. For example, let’s say we have someone who does not have fructose malabsorption. They will be able to eat sugar, but only up until a certain point. If that person were to eat a bag full of sugar within a few hours, they would feel some of the same symptoms as I would. (I don’t recommend trying that because there are a lot of health risks with that). Each person has their own limit on how much sugar they are able to digest in a certain timeframe and for people with fructose malabsorption, it takes a long time to digest even a little bit of sugar.
At first I was told that I needed to stay away from sugar for a minimum of six months, and then I would be able to start introducing food. A few days later, we got a call from the doctor that my results were looked at by another doctor, and the recommendation was to stay away from sugar for a minimum of two years. My recommendation had changed because of the amount of fructose that was not digested by my intestines. The doctors wanted to make sure that everything got digested before I started trying new foods.
I have now been diagnosed with Fructose Malabsorption for almost six years and I am feeling better than I have ever felt. I am twenty-two years old and currently in college to get my Associates degree in Nuclear Medicine Technology, as well as getting a Bachelors of Science in Diagnostic Medical Imaging and Treatment.
On 12/02/2016, I tried a new dietary supplement called FructosAid88. This supplement is suppose to act as a catalyst to speed up the process of converting fructose to glucose in the small intestine. I decided to try a pear as the first food because the average pear has about 4.9 grams of glucose and 11.1 grams of fructose. I am only able to digest foods that have equal amounts of fructose and glucose, or more glucose than fructose. I took one pill and then ate an entire pear, without getting sick. In the coming weeks, I will be trying this supplement with not only high fructose foods, but also high fructan, monosaccharide, disaccharide, carageenan, etc foods. I will keep you updated on how this goes.
I would like to take a moment to explain that even if you have symptoms, I strongly encourage you to ask your doctor about fructose malabsorption and the hydrogen breath test to diagnose it. If your doctor does not "believe" that fructose malabsorption is a real disease (trust me, I've heard of doctors saying this to patients) - FIND ANOTHER DOCTOR! Mayo Clinic in Rochester Minnesota knows about this disease, and believes it is a real disease. Please do not try altering your diet to things that I can eat without a diagnosis, because it could cause you to become very sick if you do not have this disease. Out of all my research over the years, I have found that people with fructose malabsorption don’t necessarily need fruits, vegetables, breads, etc in their diet. People with this disease are born not needing these foods, but for people without the disease, their body needs a variety of fruits, vegetables, breads, etc. Please only strictly follow my diet if you have a positive hydrogen breath test for fructose malabsorption. Also know, that even if I don’t get sick from certain foods, it is possible for someone else with fructose malabsorption to possibly get sick from it, and vice versa.
I would be glad to answer any questions via e-mail at [email protected]. I will also be posting recipes, lists of sugars I can and cannot have, foods that I can and cannot have, and anything else that may be useful, or that people may request.
If you or anyone you know is planning a conference to talk about Fructose Malabsorption, whether it be for the community, doctors, etc, and are looking for someone to tell their story, I would absolutely love to speak. I love telling my story and I want to get the word out about this disease. I have heard of doctors telling families that they don't believe this is a real disease, but I am living proof that it is. I am also willing to try almost anything to allow me to eat more. Don't hesitate to contact me about new experimental studies, or about inquiries to talk about my story at a conference.
Thank you for reading, and I hope to hear from some of you (:
My story begins when I was born in 1996. A few weeks after I was born, my parents realized that I might have some intestinal issues. After being brought to the doctor, I was diagnosed with IBS (or irritable bowel syndrome, aka constipation). Doctors recommended Miralax. Apparently, this is common in infants. Years went by and doctors continued to tell me that I had IBS and began putting me on more and more Miralax. Eventually, my x-rays got to the point where a “clean out” was necessary. This meant being put under, so the doctors could “clean out” my colon. After the “clean out,” I was placed in the hospital for several days with a tube in my nose and Golytely put through my tube. This was to help finish “cleaning me out.” This process happened about once each year… sometimes more, sometimes less.
Over the course of several years, I had more tests than I can even think of. Some of the tests I endured included (but not limited to): x-rays, CTs, MRIs, PET scans, colonoscopy’s, endoscopy’s, digital rectal exams, ultrasound (with sigmoidoscope), barium enema, blood tests, balloon expulsion test, manometry, hide scans, gastric emptying, and many more tests that I can’t even remember. Most tests were negative, but I was diagnosed with IBS (when I was an infant), as well as acid reflux. Every doctor I saw wanted to do the same tests that had already been done, and in the end, would come up with the same diagnosis (IBS) and send me home.
In high school, I began to get even more sick. The symptoms I was encountering included (but not limited to): severe headaches, constipation, severe stomach pain (to the point where I could not walk), rashes that would come and go, hives, weight loss (because my stomach hurt so bad that I refused to eat), tiredness (I could sleep for over 24 hours at a time), dizziness, muscle spasms, vomiting, and a rapid heartbeat (which I learned to be from excessive laxative use, because that’s what doctors were prescribing).
During the first 17 years of my life, a lot of these symptoms were normal for me because I had grown up with this pain. Doctors often didn’t know how I was walking around and how my pain was not as high as they would expect. After having test after test after test done, and getting more sick as time passed, I didn’t care what happened anymore. I had no idea what was happening to me. I was always told that it could be way worse (and that is definitely true), but I was also in so much uncontrolled pain, and had doctors telling myself and my parents that this must all be in my head and that I just had severe IBS, that eventually, I didn't care if I died. I realized that I could be at peace, but that ultimately, it was up to God to decide my future. I started praying that I either find an answer, or leave this world.
In December of 2012, during my Junior year of high school, I got sicker than I had ever been. I had been to the emergency room five times within 2 months and was down to weighing eighty pounds. After being given Vicodin and Oxycodone, I was told to follow up with my family doctor the next day. This went on and on. Finally, in March 2013, we decided to try to get into Mayo Clinic. This is not as easy as you may think. Doctors would not take on my case because of how many previous doctors I had seen and the years of unending tests that had been done. Finally, we were told someone had taken on my case (only after my mom had called the hospital dozens of times). When I showed up at Mayo Clinic in March, I was doubtful. I had shown up at hospital after hospital trying to find an answer before. How was this trip going to be any different? I thought that I would meet with a doctor, he’d have to read through my chart right in front of me, he’d prescribe pain medicine, and I’d be sent home, yet again. That was not the case. I showed up to an adult gastroenterologists office, and he had read my entire chart. He had some ideas of what could be wrong, and he had a plan. The doctor told us that if there was not a diagnosis by the end of the week, we would be staying until there was an answer.
On day two of being at Mayo Clinic, I had a Hydrogen Breath test done. This is a test where you breathe into a machine to get a baseline result, then you drink a cup of fructose and continuously breathe into the machine every 30 minutes for 2 hours. As soon as I drank the cup of fructose, I began getting sick. It was the same feeling I had been feeling for the past few months. Finally, I was hopeful. My mom and I got a call from the doctor that night. The diagnosis was Fructose Malabsorption. My prayers were finally answered. I was so grateful that someone finally had a diagnosis, but I also had no idea what this meant. Years later, I finally have some answers.
Fructose Malabsorption is a condition where your intestines have a hard time digesting sugars due to a lack of enzymes made by the liver. With fructose malabsorption, each person is different. This is not a black and white diagnosis. For example, let’s say we have someone who does not have fructose malabsorption. They will be able to eat sugar, but only up until a certain point. If that person were to eat a bag full of sugar within a few hours, they would feel some of the same symptoms as I would. (I don’t recommend trying that because there are a lot of health risks with that). Each person has their own limit on how much sugar they are able to digest in a certain timeframe and for people with fructose malabsorption, it takes a long time to digest even a little bit of sugar.
At first I was told that I needed to stay away from sugar for a minimum of six months, and then I would be able to start introducing food. A few days later, we got a call from the doctor that my results were looked at by another doctor, and the recommendation was to stay away from sugar for a minimum of two years. My recommendation had changed because of the amount of fructose that was not digested by my intestines. The doctors wanted to make sure that everything got digested before I started trying new foods.
I have now been diagnosed with Fructose Malabsorption for almost six years and I am feeling better than I have ever felt. I am twenty-two years old and currently in college to get my Associates degree in Nuclear Medicine Technology, as well as getting a Bachelors of Science in Diagnostic Medical Imaging and Treatment.
On 12/02/2016, I tried a new dietary supplement called FructosAid88. This supplement is suppose to act as a catalyst to speed up the process of converting fructose to glucose in the small intestine. I decided to try a pear as the first food because the average pear has about 4.9 grams of glucose and 11.1 grams of fructose. I am only able to digest foods that have equal amounts of fructose and glucose, or more glucose than fructose. I took one pill and then ate an entire pear, without getting sick. In the coming weeks, I will be trying this supplement with not only high fructose foods, but also high fructan, monosaccharide, disaccharide, carageenan, etc foods. I will keep you updated on how this goes.
I would like to take a moment to explain that even if you have symptoms, I strongly encourage you to ask your doctor about fructose malabsorption and the hydrogen breath test to diagnose it. If your doctor does not "believe" that fructose malabsorption is a real disease (trust me, I've heard of doctors saying this to patients) - FIND ANOTHER DOCTOR! Mayo Clinic in Rochester Minnesota knows about this disease, and believes it is a real disease. Please do not try altering your diet to things that I can eat without a diagnosis, because it could cause you to become very sick if you do not have this disease. Out of all my research over the years, I have found that people with fructose malabsorption don’t necessarily need fruits, vegetables, breads, etc in their diet. People with this disease are born not needing these foods, but for people without the disease, their body needs a variety of fruits, vegetables, breads, etc. Please only strictly follow my diet if you have a positive hydrogen breath test for fructose malabsorption. Also know, that even if I don’t get sick from certain foods, it is possible for someone else with fructose malabsorption to possibly get sick from it, and vice versa.
I would be glad to answer any questions via e-mail at [email protected]. I will also be posting recipes, lists of sugars I can and cannot have, foods that I can and cannot have, and anything else that may be useful, or that people may request.
If you or anyone you know is planning a conference to talk about Fructose Malabsorption, whether it be for the community, doctors, etc, and are looking for someone to tell their story, I would absolutely love to speak. I love telling my story and I want to get the word out about this disease. I have heard of doctors telling families that they don't believe this is a real disease, but I am living proof that it is. I am also willing to try almost anything to allow me to eat more. Don't hesitate to contact me about new experimental studies, or about inquiries to talk about my story at a conference.
Thank you for reading, and I hope to hear from some of you (: