Post by ruby on Feb 17, 2020 11:20:11 GMT -5
Hi, everyone.
I’m trying to figure out whether or not I might have HFI, and if I should try to get a formal diagnosis or not. I am also wondering if my dad and brother may have HFI as well. Here is my story:
I ate fructose containing foods my whole life. I never liked really sweet foods (like desserts), but I always enjoyed fruit.
I’ve suffered from many health problems daily since childhood, but no doctors have ever formally diagnosed me with any conditions other than IBS, asthma, food allergies (some of them anaphylaxis), environmental allergies, chronic sinusitis, and parasitic infections.
My general health got unbearably bad once I reached college age. I had hypoglycemia crashes 5-10 times a day and would often lose consciousnesses in public. I had extremely low blood pressure all of the time, and major electrolyte imbalances that landed me in the hospital ER a bunch of times. I was always so bloated that I looked pregnant, and suffered from severe constipation. I started getting panic attacks multiple times a day and thought I was losing my mind. I couldn’t walk up a flight of stairs because my muscles were so weak. I went to doctors but they said nothing was wrong with me, so I lived like this for 10 more years until my late 20s. I am amazed that I was able to hold down jobs, because I often passed out at work and was almost completely dysfunctional most of the time when I was awake.
In my late 20s I tried new diets. Paleo, keto, SCD, low FODMAP, etc. None of them helped. I tried an elimination diet using the recommended options which included carrots, which didn’t help either. However, I decided to try an elimination diet again just using chicken and rice, and like magic about 70% of these horrible symptoms cleared within a couple of days. I felt like a whole new person. I painstakingly added foods back in one by one over many months, and found that the only foods I could tolerate were white rice, white potatoes, meat, eggs, seafood, salt, and oil. Absolutely no fruits, veggies, or grains other than this. I have stuck to this diet for 5 years, despite the protests from friends, family, and health professionals, and I have lived a somewhat functional life. I still have many challenging health issues and always feel on the brink of falling back into the depths of health hell if I do the smallest thing wrong, but at least I can now think clearly, function well at my job, and structure my life in a way that supports my health better than I did in my earlier adult years.
I noticed that my preferred diet does seem to eliminate all high fructose foods, so I figured I probably had “fructose malabsorption” along with my many other food and environmental allergies and intolerances. I came across HFI once years ago, but dismissed it because I had not “died as a child” as the description suggested I would have had I gone undiagnosed. However, I just did an Ancestry DNA test for other health reasons last month, and saw that I got this on the test: rs370793608(A;A). It says “hereditary fructose intolerance”. However, I looked it up on SNPedia and saw that they note this is a “miscall in Ancestry v2c and v2d data”. I am new to genetics and have no idea what any of this means.
However, I read up on HFI and I did see essentially all of the symptoms in myself other than vomiting. I noticed that HFI can cause metabolic disturbances like lactic acidema and hypermagnesemia. That rang a bell for me, as I have extreme exercise intolerance and also very bad reactions to higher elevation where the oxygen thins out (I live at sea level). I also never understood why I had such scary reactions to magnesium supplementation. I took one magnesium pill to try out in my early 20s and went into a 48 hour coma almost immediately after. I tried one application of magnesium oil a few years later and the same thing happened. Doctors could never tell me why, but hypermagnesemia due to HFI would make sense.
Then I started thinking about my dad and my brother. They both have all kinds of health problems that aren’t easy to figure out by the traditional doctor route. My dad’s liver failed (cirrhosis) in his early 40s, when I was a young child, and he had to get a life saving liver transplant. He didnt drink alcohol. The doctors told him it was likely because his mom passed on Hepatitis B to him at birth. However, his two siblings don’t seem to have liver problems, and they are all in their 70s now. And my mom never caught Hep B from my dad, which I found strange. My dad definitely has hypoglycemia every day but is in total denial about it. He stubbornly eats tons of fruit—loves fruit and always has. Particularly obsessed with the fruits highest in fructose, strangely. But at his age with his long list of health problems, the hypoglycemia is probably the least of his concerns. Whenever I complain about my physical suffering and reactions to food, he tells me some version of “everyone feels like that, so get over it.” He is the biggest critic of my strict diet.
My younger brother’s general health has been getting worse and worse over the years. He definitely has hypoglycemia every day, and a bunch of other worsening problems, not dissimilar to my own. He has never tried any special diets. Last spring he started getting tonic clonic seizures seemingly out of nowhere. I was there to witness the first one, and it happened right in the middle of eating a hamburger. It was a 10 minute seizure and terrifying to watch. After we brought him home from the hospital he had another one. He was diagnosed with epilepsy shortly after, despite the tests not showing any epileptic activity. They diagnosed him based on the nature of his seizures. I had this gut feeling that the seizures were related to food intolerances, but was told that isn’t possible. However, I see on the HFI descriptions that HFI can result in epilepsy if left untreated. I am wondering if this is my brother’s case. We did the 23andMe DNA test for him, but didn’t see the same gene as I have. However, we are totally new to genetics and have no idea how to investigate what is in his raw data. We are going to try a fructose free elimination diet this week to see if it helps, because he still feels like he is on the brink of a seizure and/or a panic attack much of the time despite being on anti-seizure medication.
Anyway, that was a long story. I am so happy to have this forum where I can read about your experiences. The big question on my mind is whether or not to work with doctors on this HFI question. I distrust them greatly, as everything they have ever suggested in the past has made me worse.
Thanks for reading. Please let me know if you have any thoughts!
I’m trying to figure out whether or not I might have HFI, and if I should try to get a formal diagnosis or not. I am also wondering if my dad and brother may have HFI as well. Here is my story:
I ate fructose containing foods my whole life. I never liked really sweet foods (like desserts), but I always enjoyed fruit.
I’ve suffered from many health problems daily since childhood, but no doctors have ever formally diagnosed me with any conditions other than IBS, asthma, food allergies (some of them anaphylaxis), environmental allergies, chronic sinusitis, and parasitic infections.
My general health got unbearably bad once I reached college age. I had hypoglycemia crashes 5-10 times a day and would often lose consciousnesses in public. I had extremely low blood pressure all of the time, and major electrolyte imbalances that landed me in the hospital ER a bunch of times. I was always so bloated that I looked pregnant, and suffered from severe constipation. I started getting panic attacks multiple times a day and thought I was losing my mind. I couldn’t walk up a flight of stairs because my muscles were so weak. I went to doctors but they said nothing was wrong with me, so I lived like this for 10 more years until my late 20s. I am amazed that I was able to hold down jobs, because I often passed out at work and was almost completely dysfunctional most of the time when I was awake.
In my late 20s I tried new diets. Paleo, keto, SCD, low FODMAP, etc. None of them helped. I tried an elimination diet using the recommended options which included carrots, which didn’t help either. However, I decided to try an elimination diet again just using chicken and rice, and like magic about 70% of these horrible symptoms cleared within a couple of days. I felt like a whole new person. I painstakingly added foods back in one by one over many months, and found that the only foods I could tolerate were white rice, white potatoes, meat, eggs, seafood, salt, and oil. Absolutely no fruits, veggies, or grains other than this. I have stuck to this diet for 5 years, despite the protests from friends, family, and health professionals, and I have lived a somewhat functional life. I still have many challenging health issues and always feel on the brink of falling back into the depths of health hell if I do the smallest thing wrong, but at least I can now think clearly, function well at my job, and structure my life in a way that supports my health better than I did in my earlier adult years.
I noticed that my preferred diet does seem to eliminate all high fructose foods, so I figured I probably had “fructose malabsorption” along with my many other food and environmental allergies and intolerances. I came across HFI once years ago, but dismissed it because I had not “died as a child” as the description suggested I would have had I gone undiagnosed. However, I just did an Ancestry DNA test for other health reasons last month, and saw that I got this on the test: rs370793608(A;A). It says “hereditary fructose intolerance”. However, I looked it up on SNPedia and saw that they note this is a “miscall in Ancestry v2c and v2d data”. I am new to genetics and have no idea what any of this means.
However, I read up on HFI and I did see essentially all of the symptoms in myself other than vomiting. I noticed that HFI can cause metabolic disturbances like lactic acidema and hypermagnesemia. That rang a bell for me, as I have extreme exercise intolerance and also very bad reactions to higher elevation where the oxygen thins out (I live at sea level). I also never understood why I had such scary reactions to magnesium supplementation. I took one magnesium pill to try out in my early 20s and went into a 48 hour coma almost immediately after. I tried one application of magnesium oil a few years later and the same thing happened. Doctors could never tell me why, but hypermagnesemia due to HFI would make sense.
Then I started thinking about my dad and my brother. They both have all kinds of health problems that aren’t easy to figure out by the traditional doctor route. My dad’s liver failed (cirrhosis) in his early 40s, when I was a young child, and he had to get a life saving liver transplant. He didnt drink alcohol. The doctors told him it was likely because his mom passed on Hepatitis B to him at birth. However, his two siblings don’t seem to have liver problems, and they are all in their 70s now. And my mom never caught Hep B from my dad, which I found strange. My dad definitely has hypoglycemia every day but is in total denial about it. He stubbornly eats tons of fruit—loves fruit and always has. Particularly obsessed with the fruits highest in fructose, strangely. But at his age with his long list of health problems, the hypoglycemia is probably the least of his concerns. Whenever I complain about my physical suffering and reactions to food, he tells me some version of “everyone feels like that, so get over it.” He is the biggest critic of my strict diet.
My younger brother’s general health has been getting worse and worse over the years. He definitely has hypoglycemia every day, and a bunch of other worsening problems, not dissimilar to my own. He has never tried any special diets. Last spring he started getting tonic clonic seizures seemingly out of nowhere. I was there to witness the first one, and it happened right in the middle of eating a hamburger. It was a 10 minute seizure and terrifying to watch. After we brought him home from the hospital he had another one. He was diagnosed with epilepsy shortly after, despite the tests not showing any epileptic activity. They diagnosed him based on the nature of his seizures. I had this gut feeling that the seizures were related to food intolerances, but was told that isn’t possible. However, I see on the HFI descriptions that HFI can result in epilepsy if left untreated. I am wondering if this is my brother’s case. We did the 23andMe DNA test for him, but didn’t see the same gene as I have. However, we are totally new to genetics and have no idea how to investigate what is in his raw data. We are going to try a fructose free elimination diet this week to see if it helps, because he still feels like he is on the brink of a seizure and/or a panic attack much of the time despite being on anti-seizure medication.
Anyway, that was a long story. I am so happy to have this forum where I can read about your experiences. The big question on my mind is whether or not to work with doctors on this HFI question. I distrust them greatly, as everything they have ever suggested in the past has made me worse.
Thanks for reading. Please let me know if you have any thoughts!
My son has HFI, So while I cant comment by personal experience, there are many people on this board that can. The fact that you have done well on the fructose free diet is very encouraging. There are a lot of resources on here for foods. It can help with the not so obvious fructose containing foods. If you feel better on that diet then stick to it. The history about your father and his liver is surprising and does make me think that you shouldn't rule out the possibility of HFI.