lisa
Full Member
Posts: 215
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Post by lisa on Feb 7, 2007 22:49:17 GMT -5
I would like to know how people were diagnosed as having HFI, DFI or fructose malabsorption. Following are some examples (please correct if I've gotten your story wrong) Nathan was diagnosed with fructose malabsorption via a 3 hour fasting fructose tolerance test. It was a breathalizer test. Carrie's Ben was diagnosed with fructose malabsorption via the same breathalizer test. I remember Fred indicating that he had had a (fasting?) fructose tolerance test that was a blood test resulting in an HFI diagnosis. Regina had a liver biopsy for her HFI diagnosis. Tammy, did they do any other testing before that which hinted at FI? Anyone else want to volunteer their info? Thanks, Lisa
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Post by Tammy on Feb 8, 2007 0:16:51 GMT -5
Regina had many, many other tests first. They never had any ideas of any kind. All they knew was they needed to find out why her liver was so bad. Then they did a needle biopsy, which also told them absolutely nothing. I even have a copy of a letter one Dr sent to another Dr when they sent us to a different hosp for tests one time. The last statement was, "Thus, we are stumped".
The only thing they ever mentioned they were considering was Glycogen Storage Disease. Which is similar, but a different enzyme is involved. The needle biopsy is what ruled this out. Of course this was 20 yrs ago, so there was no internet or anything to look up what the treatment would have been. I had no idea what it was, other than the words. And they didn't really talk about it because they didn't know anyway. No mention of any kind of diet was ever mentioned.
A few months later a new, young Dr moved to our area from Boston. He told me later that he had seen one case of HFI, a person from Canada. (makes me wonder if it was Fred, huh?) This is the Dr that did the open liver biopsy, the sample was sent to Texas, and we got the result. Nothing was ever mentioned about it until the result came back. At that time, the Dr told me there was only 8 reported cases in North America. I can't verify that, but it was what I was told.
There is much more room for improvment in getting the docs of today to think about FI issues, but I think it's great that more and more of them do. 50 years ago, Regina would have just died from liver failure with no one knowing why. She ate everything, she didn't get sick back then, had no GI issues, she had no behavior problems, she was small, but always stayed on the very bottom of the charts. The only thing that kept the Drs looking was the liver.
The liver became an issue at 7 months. She was BF for 3 months, then put on a formula that, just by luck, happened to be safe for her anyway. But then comes apple sauce, etc. We got her DX at about 2 1/2.
So our story is a lot different from a lot of these kids today. I am very glad that at least some of these Dr's are thinking FI of any kind. Now we just need more of them to think of it. And I sure do have a lot of respect for Fred's mom figuring out Fred.... Tammy
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Post by colormist on Feb 8, 2007 10:18:34 GMT -5
I was diagnosed (by myself using the internet, but the doctor needed medical evidence) via blood sample/gene sequencing at the University of Michigan Genetics Department. (Very nice doctors)
I don't know the actual term for it. They took a blood sample and looked for the gene(s) to prove to me that I didn't have HFI (because I was oh-so-insistent that I DID have HFI). Needless to say, I was right and they wanted to learn more about me.
Afterwards they said they really couldn't do anything for me that I didn't already know, so I escaped unscathed.
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Post by sarahk on Feb 8, 2007 11:58:20 GMT -5
I was diagnosed at age 13 (1991) via DNA blood test at Oakland Children's Hospital-metabolic clinic, with Dr. Tolan's lab also involved. Needless to say, I was the first case in Oakland. The tests were done after my friend's mom, a nurse, read an article about an English man, who had many of the same symptoms I had--throwing up all the time, aversions to many foods... For years the doctors thought my parents were crazy, even sending them to a shrink.
On a separate note, I have my gestational diabetes tests this weekend--another HFI obstacle, as I can't drink the sugar solution normally given, I need a fasting lab.
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Post by carrie on Feb 8, 2007 13:35:38 GMT -5
Thanks, Lisa for posting this. Ben was diagnosed with fructose mal-absorption by the breath test. I am told perhaps it is severe since he vomits and since I need to restrict him to less than one gram per day of fructose. The only veggies he tolerates are the ones with about .3 grams. They can't explain the hypoglycemia because it is delayed a couple days after ingestion.
I know how to manage his diet...what to feed him, where to shop, etc. I just have this burning desire to seek further answers since the hypoglycemia can't be explained. His doctors say vomiting isn't normal with mal-absorption, but perhaps it would be in a severe case, and they have flat out said they just don't know because there isn't anything documented about severe mal-absorption. I have been told it can't be HFI since he had a + breath test, he would not have both. However, they also suggested I could have them re-do the breath test which I really don't want to do.
I guess my question is ---should I just give up and accept he does have a diagnosis for a problem with fructose. Is that enough to protect him for future illnesses/injuries/etc that require those more expensive fructose free medicines? Or do I keep pursuing further to rule out the more severe other types? If he does tolerate something like a bite of a banana or 1/2 small strawberry ....are those with more severe types of fructose intolerance (HFI) allowed that or is it supposed to be strictly avoided in fear of causing damage?
I am told to give him what he tolerates, no damage will be caused ...but then I just don't feel like we have a complete diagnosis yet. His doctors use words like 'perhaps it is this ...' or 'I am confused by this...' then they send us our merry way and say there is no reason for them to see us again because I seem to manage him just fine, including reviving him at home from an unresponsive state when his blood sugar levels are so low.
Meanwhile, I am confused and wondering what others would do. I guess it's the line between 'give him that bite of fruit if it's mal-absorption or avoid it always if it's HFI' Am I mistaken on that? His diet has pretty much been restricted since food was first introduced at 4-5 months of age, but there were a couple things he could tolerate one bite of for a day like the banana/strawberry....I'd love for him to have the nutrients in those bites every couple weeks or so, but worry it will cause damage or something. I believe perhaps we would have seen some sort of internal damage if I had fed him a normal infant/toddler diet. I feel like I am left on my own to determine what to do, I mean, I manage him well and so no one wants to see us outside my pediatrician so I keep pushing for other doctors to see us. We actually do have an appt with Dr. Korson in Boston in Sept. I feel crazy though going 7 hours away for an appt and would just like to know if others would be doing the same thing.
sorry this is lengthy. ...I'm just confused! thanks!! carrie
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Post by fred on Feb 8, 2007 21:40:19 GMT -5
Hi Folks
I think I have previously posted how I was diagnosed but here goes anyway.
I was diagnosed in 1965 at age 26 in the Clinical Investigation Unit at one of the five teaching hospitals in Toronto that are managed by appointees from the faculty of medicine at the University of Toronto. I was told I was the 28th reported case in the world. The first being reported in 1956.
I always like to tell this part, which is that I had a preliminary diagnosis by a Psychiatrist. I visited him only once because other doctors thought that was where I belonged. Thank goodness he was also an astute medical doctor first. It was he that directed me to the right people for the testing.
I underwent a series of tolerance tests one every other day. They were for Glucose, Galactose, Fructose and L-Lucine. I had to fast overnight and in the morning I was given a drink containing a specific amount of the sugar type dissolved in a liter of water. Blood and urine samples were taken every twenty minutes over the following five hours.
All of the tests except the Fructose were uneventful. The fructose however made me sick almost instantly and I remained that way for about two days. The results of the blood and urine tests showed what it was expected to show for what they then called Fructosemia. They were not happy with that however and decided to do it again. So, about two weeks later it was repeated only this time I had to go for psychological testing first and then a small bowel biopsy. I also had an EKG and an EEG.
Just before the second test, they did a liver biopsy by needle, wired me up for another EKG and EEG and then gave me the drink. It was the same routine with blood and urine collections every twenty minutes, the EKG and EEG recording my heart function and brain activity constantly and then three hours into the test they did another small bowel biopsy and another liver biopsy. All of this while I was throwing up and feeling like the end of the world was imminent. The test was terminated soon thereafter as I had gone cyanosis (blue) he gave me an injection of glucose (which didn't seem to do anything) and sent me back to my room. It took me nearly a week to get over that. What a tough day that was and I always tell everyone that the only thing that kept me from losing it altogether was the good looking nurse that was holding my hand throughout it all. hehehe
I don't know what all the blood and urine tests were but I do know that two of the blood tests were Blood Sugar and Plasma Glucose and two of the urine tests were for sugar and albumin.
I was told the test results made medical history. Tiny pieces of liver and small bowel were sent to Chicago, Los Angeles and Belgium for enzyme studies and some were also studied here in Toronto.
Then they started me on a fructose free diet.
After I was feeling a bit better, they gave me a paper and pencil and asked me to record the time and details when and if I was not feeling well. Unbeknown to me they were sneaking fructose into my diet in controlled amounts. They were able to get some idea of my tolerance from this and found that I only tolerated about 100 mg per day. (At that time I weighed only 120 lbs.)
Years later I underwent the DNA testing here in Ontario which supported the HFI diagnosis.
If I get very small amounts of sugar over a period of time, it makes me just feel chronically lousy. Large amounts, like one bite of banana would make me sick to my stomach and probably throw up. So, good nutrition has never been a priority with me. I haven't done to badly, I'm still around and I'm over 70. Just that fact alone should at least give all of you hope for the future.
I have to say though, I don't cheat with my diet. I'm sure that's how I got to be the age I am.
Fred
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Post by Tammy on Feb 9, 2007 2:58:40 GMT -5
Carrie, Those are very tough questions indeed. I would ask the Dr about if the malabsorption would be enough to prevent any questions from the insurance companys later.
I am a big believer in a true DX. Look at what Chelsea just went through. They almost cancelled the liver biopsy, and now she is eating all things fructose. So I don't think you are crazy to be driving 7 hours to be sure. I would do the same thing.
As for the bite of banana or strawberry.....Like Fred, a bite would be too much for Regina. Less than that will make her very sick. It's always 2 or 3 days later, and it will last anywhere from a couple of hours, to more than a week.
So what would I be doing? I would keep the apt in Sept in Boston, and in the mean time, I would do what the Docs here have told you and give him only what he tolerates. It's ok to question and keep looking for more answers, but it's also good to listen to what they tell you, as that is why you took him to them in the first place. Tammy
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Post by carrie on Feb 9, 2007 22:36:36 GMT -5
Fred, you are right. You are living proof one can have a long, healthy life on the diet. I took this nutrition class for health professionals when Ben was about 1 year old. (I'm a physical therapist) It was a very good, detailed class about everything nutrition-wise and all the 'fad' diets out there. During a break, I mentioned how my son did not tolerate fruits/veggies so I didn't serve them to him and then I got the 3rd degree lecture. She made me feel terrible about cutting those foods out of his diet, how there are so many things found naturally in fruits/veggies that cannot be substituted with a vitamin, etc etc. Her words have been burning in my ear for 3 years. I KNOW I am right to avoid everything I avoid .... but now and then I worry he is missing something .... this site is comforting because I see so many have been on this diet for years and they are all fine, and in fact things would be quite the opposite if they were NOT on this diet.
Tammy, thanks for your support. I think that is all I needed. I just start to feel more crazy when I see peoples reactions when I say we are going to Boston. But, I figure, who better to see than someone who specializes specifically in carbohydrate metabolism, and well..there is no one with that training around here. Perhaps our local specialists could have some guidance or something and we could have follow-up visits near home. I actually really like our local GI doctor and endocronologist, but right now they say Ben's problems were out of their scope of practice and wanted us to go to Philly or NYC. We chose Philly and just haven't gotten a true diagnosis yet being there, that I believe too that we should have.
So, then I was thinking about the strawberry/banana thing and decided who am I to decide what Ben DOES tolerate, especially if it is on the avoid list, you know? So, then I should not allow those little bites until he is really old enough to decide for himself. I know what he didnt' tolerate from the awful nights we had. However, we trialed all fruit/veggies before he was 9 months old ....he slept well the first night or 2 after having banana and the 3rd night was bad, so I blamed it on the 3rd day of food. BUT, it could have easily been a reaction involving the first couple nights also ....especially since I now see such delayed reactions with accidental overdoses of things. I don't know why it took so long for that to click, but it did and I feel better now! :-)
thanks again!! carrie
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Post by carrie on Feb 10, 2007 12:07:20 GMT -5
Hi Fred, I saw the links yesterday, but didn't have a chance to read thru them until today. They have good info ...thank you!! carrie
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Post by julienc on Aug 20, 2009 7:31:31 GMT -5
I always knew something was "wrong" with me and had adversions to sugar and sweet foods from birth. My brother was the same way, so I always figured there was some hereditary thing going on with us. My mom rarely pushed foods on us and for the most part catered to our dietary needs and wants, so we escaped childhood relatively unscathed. However, I had IBS symptoms my whole life to the point where I just told people I had IBS. We both ate pixie stix and smarties like crazy, so that really played with our heads. Why could we eat that junk food and not other sweets?? A close friend took a keen interest in my very peculiar dietary issues. She rattled off all kinds of foods, asking what I could or couldn't eat. I couldn't eat almost every single thing she mentioned. She finally looked at me and said "Don't you think that is STRANGE? " I laughed and said "Yes, of course, but I've always been this way and know no different!" I was 30 at the time. Her father is a very skilled pediatrician. She called him that night when she got home and told him about me. He immediately told her that he thought I had "fructose intolerance" and that it's a serious condition. I googled it, found Dr. Tolan's website, and knew immediately that was what I had. Finally got in with a GI doc at the local hospital (Duke). He thought I was a bit nuts, and I got the typical line "If you really had HFI then you would've been hospitalized as a baby." But the fact that my brother had the same symptoms intrigued him, and he referred me to a geneticist. They ran all kinds of tests, including the DNA test they sent to Baylor, and it came back positive.
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Post by sherri on Aug 20, 2009 21:49:30 GMT -5
Since i was a child I couldn't tolerate sweet stuff,fruit and veggies included. I was sent to all kinds of docs who said everything from no sweet taste buds to psychological to ibs . Whatever! If only someone would have listened.2 1/2 years ago I self diagnosed on the internet and then found a pediatric genetisist. She took me in and listened intently because she had never had an actual case. She sent me for the dna testing and there it was HFI! She soon after started seeing a new born with similar symptoms.She sent him as well and it confirmed HFI. So thru my experiences growing up we were able to give them some guidance and hope. He is thriving and doing well. My husband and children have been great! My six year old Savanna rubs my back or my head when I am not feeling well. She brings me potato chips and milk as well. My three year old son will bring me in his leftovers and tell me mommy I took all the sugar out just for you! Soooo Sweeet! To them I am not different as everyone else sees me, to them I am special! I am truely Blessed!
How is it that each of us can tolerate certain things and not others . I have looked at some of the recipes and want to vomit just looking at them. Like cakes and cookies? I cannot even stand the smell of sweet things. My mother used to burn vanilla candles that would send me into spinning ,mouthwatering nausea! Yuck! Veggies are not so good for me in any fashion. I get the shivers and make that face...yeah I bet you ALL know the one ,when you eat something that you shouldn't have! Peanut butter or nuts in general are out too!
I must just be super sensitive to certain things. Like I said it is all trial and error I guess.
Thanks again for welcoming me to the boards, it sure means alot to me to know I most certainly am not crazy!
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Post by charlie on Aug 21, 2009 8:41:42 GMT -5
Thanks Fred for directing us to this page, great help. I've pasted Megs history off another page to save typing it all again. Tammy I notice they thought glycogen storage for Regina, the energy swings and storage do seem to be a common factor.
I was lucky in a way that our GP had heard of it when she was a toddler and seeded it in my head as a possibility otherwise I may well have a much sicker child. Megs was a perfect baby although she had had to be rescusitated when born as there had been complications at the last minute. I breast fed until 4 months and things seemed fine, it was only when we started weaning the fun and games started. She was very resistant to alot of things and took days to get onto formula which I had to start as I was back to work and was drying up. It took 2 weeks at least to get her to have baby rice and fruit cubes which are the first things they tell you to try. She started projectile vomiting even during a meal, poos were vile, not sleeping, screaming at night in pain, bloating and her height centile dropped but not her weight. They started on the dairy first so changed to soya which of course made things worse. Then she was off dairy and wheat and still things carried on. she had flu after cold after stomach bug and dropped from the 92nd height centile when she was born to the 25th. Eventually the gp said it may be a sugar problem, the symptoms fitted sucrose or fructose but it was very rare and they rarely thrive!! But maybe worth looking into. I naturally don't have a sweet diet anyway so maybe I wasn't loading her as much as some may have done. Anyway we decided to do an elimination diet to detox and test her at the same time so we put her on chicken and rice for 4 days, she rice for breakfast, and chicken and rice for the other 2 meals. Amazingly she was quite happy and by day 4 looked better in her skin. Then we gradually every other day added in different things starting with proteins and I logged any changes. I seem to remember we did milk early on and that was OK. Anyway things went fine until I did carrot as the first vegetable and she started runny poos almost immediately and tummy ache, so I stopped those and did 4 days safe things again then tried another veg and the same thing happened. Repeated safe then tried a fruit and hey presto again reacted. Then tried sugar and oh boy the regret!! At that stage the gp referred her and they still insisted on testing her for celiac which was negative then decided it was a gastritis because of the screaming night pains so treated her for helicobacter pylori which cleared that but not the rest. The paed at that point was still adamant it wasnt HFI because "They assured me that she didn't have HFI becuase she would be dead if she did "........ I kept her off fructose but not veg at that point and symptoms improved but didn't stop. Of course at that stage I didn't realise how much fructose is in some veg as they kept saying that to me. At one stage she went back onto normal diet and all the symptoms started up again with terrible incontinence so I off my own back stopped all fructose but gave her some veg and things improved. At that point I started to jump up and down more and here we are now. I must say things only dramatically improved when I removed all veg as well. Thats when they did the breath test and oh oops it was very high.
Symptoms solved: chronic diarrhea, bloating, vomiting straight after or during meals.
Symptoms still to solve: lack of energy, inability to focus at school, blank episodes, night wetting excessively, poor sleep
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Post by sherri on Aug 21, 2009 9:56:54 GMT -5
My sleep is still very poor Charlie, for that is something that never went away. I still have days where I lack energy as well. I also recall school being difficult for me because I just didn't feel good and would stare blankly into space. I still find that happens to me today at age 36, its like I see the world going by and I don't know whether to jump in or stay on the sidelines. Sometimes you regret jumping into something and then not having the energy or patience to stay in the game!
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Post by meaniejean on Oct 10, 2009 20:44:21 GMT -5
Hi all.
Well, I had an oral fructose tolerance test done in September. I really felt like I didn't have any options left, so I decided to just get through it. We did it as a fructose hydrogen breath test and then added blood work to the order so that any oddities could be caught.
It was supposed to be done as 1g/kg body weight, but you can only give 25g fructose for a malabsorption test, so we went ahead with that amount. The HFI test would have required almost 60g - YIKES! Let me just say that in hindsight I am VERY glad we only used 25g.
The hydrogen breath test was VERY positive, so I at least have a DFI diagnosis. But it gets more interesting ...
My blood work also showed elevated AST (marker of liver damage) at the end of the four hours. My blood sugar went up a small amount during the test, but by the end it was lower than it had been at fasting and 15 minutes after the test it was 66 on my home monitor. My lactate level doubled, my phosphate dropped and my magnesium and uric acid both increased. Although these values were within the normal range, they all moved in a direction indicative of HFI or FDPase. I can only imagine what it would have showed with the 60g!
Two VERY disturbing results of the test: about 20 minutes after the end of the test I was eating a homemade dextrose cookie and it tasted like motor oil. I mean, my smell and taste suddenly were inundated with motor oil! And then it went back to normal after about a minute. A few minutes later I just started talking. I don't know exactly what I said or why, but my husband was a bit concerned. My mouth just opened and jibberish starting coming out. I have been trying to figure out what could have caused it, but the only thing I have come up with is a simple partial seizure originating in the temporal lobe. But, I would doubt it was a seizure because I was partially aware of what was going on. I continued to have a lot of blank moments during the following weeks and a ton of dizzy spells. I hate those!
Two days after the test I developed a small petechiae rash on my chest and bruises up and down my forearms - I am assuming this would be from altered clotting due to the liver damage.
All of the other usual symptoms developed. I really just started feeling like "myself" again the other day. The long term brain fog, irritability and fatigue were really the worst parts as far as recovery. The GI stuff resolved much quicker than the brain stuff.
So, now my docs know this is not all in my head - but, most importantly, I now understand that this is more serious than some malabsorption. Knowing that it is causing damage to my body ... well, lets just say that I'll be sticking to the diet with renewed vigor!
Again, I am a huge opponent of the breath test - and now a huge hypocrite as well ; ) Just counting my blessings that we used the 25g and not the 60g!!! Oh, my! And by the way, holding a cup of fructose in your hand and knowing that you have to drink it is enough to make a grown woman almost break down and cry. My hand did not want to bring that cup to my mouth.
I guess a positive breath test does not rule out a more serious condition of fructose metabolism ...
Best to you all!
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mazian
Junior Member
Mum of HFI daughter
Posts: 69
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Post by mazian on Nov 10, 2009 5:50:35 GMT -5
Hi everyone,
My daughter is still in the throws of diagnosis. We have had the fructose breath test (highest result they have ever had) and it took 5 lots of solution to get it down her throat. She was 18 mths and new better than us that she would have issues. She was sick for two weeks after the test. She has had multiple testings with ECG, MRI's, Lumbar punctures, glucose testing, and more.
It sounds a lot like many others here. We have currently undergone the IV fructose challenge, which was a challenge. She coped really well, but we are still seeing the results of it two days later. I wish that there was more info and acceptance from doctors.
It doesn't sound like anyone else has had a IV fructose test? I would be interested in knowing what others experienced. We haven't got our phosphate, magnesium and urate testing back, but her blood sugar decreased a small amount over the test. I don't think that she has it anywhere as bad as some.
Best of luck. It is nice to know that we are not alone.
Warmest wishes
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mazian
Junior Member
Mum of HFI daughter
Posts: 69
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Post by mazian on Nov 10, 2009 6:04:00 GMT -5
Oh I forgot. She has been fructose free for 12 months now with incredible improvement in her lifestyle. However, she has deteriated from very superior in her IQ to average. Has anyone else had a similar issue? They say that she is now stable, but will her IQ go back up to the very superior range? Please let me know if anyone else has heard of this.
Thanks - much appreciated.
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millan
Junior Member
Posts: 79
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Post by millan on Nov 12, 2009 5:31:56 GMT -5
I don't remember any of my diagnosis since I was so young. My mother have tried to describe it, but I don't have a lot of details, since that period of my life was very traumatic for her, so she's supressed a lot of memories. Anyway, I was (obviously) very sick as a child. I was born in the late '60s, and at that time, all the formulas and gruel had sugar in them. It didn't get any better when my parents tried to give me a lot of fruit and vegetables since I was ill and fruit is sooo good for you. I went in and out of hospitals. Nobody thought my parents were crazy, it was so obvious there was something very wrong with me, but no doctor could figure out what. My mom didn't exactly let it be, she demanded answers, pressed any doctor she could find, she took me from one hospital to another, and then yet another, when no-one could help us. Finally, when I was three years old, a doctor reading my papers said that this might be HFI. He'd just returned from a seminar in the U.S. where this was one topic that had been discussed. Lucky me, eh? So, rather similar to Fred, they gave me fructose and watched me crash. More or less. (But I don't think they gave me a drink, rather injected me with it.) We finally had a diagnosis, and mom got the list of acceptable food-stuff and took me home. Luckily, I have a very clever mom, she listened to me just as much as she went by that list, so some of the things that are on there that makes me feel sick, she never forced me to eat. I did get a genetic test when I was onlder, mostly because me and my doctor felt it would be interesting to see which of the mutations I had (I even made a project in biology about HFI and had myself as an example). ;D I'm not the very first diagnosed HFI in Sweden, but aren't sure how many known cases there had been here before mine. I have read a study on older cases, but most of them were self-diagnosed, i.e. they had simply not eaten fruit and vegetables that made them ill, and the ingredients were a bit "cleaner" before the '60s, so that was obviously easier to do.
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Post by ukbill on Mar 12, 2010 22:57:08 GMT -5
Millan Big Kiss for your Mum! She did exactly right! The lists of foods for HFI is just wrong! We should start a separate topic available to only HFI (sorry DFI but your diet is different.. ) so we can all discuss things we can eat in total confidence every day all day. Then work outwards from a confirmed list of good things to eat. I would start with Rice and pasta (egg or plain) tin'd fish (in spring water, brine and all oils except soya oil) eggs, cheese and steak (no sauce or flavouring). Mazian, feed her lots of fish and feed her brain with new experiences and ideas. Best of luck.. PS I'm researching the purity of Glucose / Dextrose it is not looking good far too much contamination or risk of contamination in the stuff so best avoid! If contaminated Glucose is ingested so long as the contamination level not too high I would not expect a reaction as the Glucose would mask the immediate Fructose effect, however the long term damage from the fructose breakdown products would slowly cause damage and a general feeling of being unwell which can be instantly improved upon by eating yes you guessed it more Glucose / Dextrose... Some of the stuff is only 60% Glucose the rest is "other sugars"! I know its subjective but everyone who reports to eating eats lots Glucose / Dextrose seems to have far worse health problems than those of us who dont.. Hence my research into Glucose / dextrose manufacturing. Keep smiling and talking we can and will get a better hold on this condition and by doing so improve every bodies health (particularly parents who are frantic about what to feed their child) regards Bill A.
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vicip
New Member
Posts: 9
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Post by vicip on Jul 22, 2010 9:54:23 GMT -5
Hello,
I'm a new member on here and just wanted to say hi
I live in Somerset, England and was diagnosed with HFI when i was 13, luckily my mum was very switched on and had already cut out fructose from most of my diet by a process of elimination by the time i was diagnosed.
I've been reading a lot of the topics and am suprised by what people can tolerate, personally i cannot have any berries,beans,nuts, soya, chocolate, wine etc which many people seem to be ok with but i am fine with tomatoes!
It's great to be able to read about other people's experiences and know they understand how you feel!
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vicip
New Member
Posts: 9
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Post by vicip on Jul 22, 2010 11:02:21 GMT -5
Hi Fred
Have also replied to your pm
I was diagnosed with the breath test - this was 20 years ago at Kings College Hospital, London and as far as i know the only way they tested back then in the uk.
I have had no support from doctors or the health service since i was 15 so rely on my own knowledge to keep myself healthy which is why i think this site is going to be a godsend!
Vici
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