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Post by pulsari on Jul 30, 2008 7:06:19 GMT -5
Hi All,
I am a 27yr Old woman from Australia. I highly suspect that I suffer from HFI as I have never been able to eat anything sweet in taste as I do not like it and just throw up if I do happen to digest.
I am reading through the forums here in amazement and a little excitment to see that I am not the only one who suffers these type of symptoms as well.
I am very scared of blood tests so would be reluctant to get a DNA test if this is what it involves... However, just to help with my 'self diagnosis' can anyone please confirm that they actually do not like the taste of sugar as opposed to getting sick after ingesting foods containing fructose?
Thank you Thank you
pulsari
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Post by julienc on Jul 30, 2008 10:04:27 GMT -5
Welcome Pulsari!!! I was in your exact same shoes a little over a year ago when I discovered that HFI even existed. I am the same way. Over the years I had come to dislike sweet things so much that I forgot that those foods actually made me sick. I would still try to eat some things - mainly tomatoes, tart berries, etc - nothing in large enough quantities to make me really sick, but I did have tummy problems for years and just figured I had IBS. I had the occasional overdose which led to vomiting, but in those rare instances I chalked it up to food poisoning. In hindsight I wonder how it never clicked for me. Especially since my brother is the same way. I went ahead and did the DNA testing last July to confirm for peace of mind. It wasn't bad - just a blood draw, and then they sent it off to a lab. (Much easier than the former method of a liver biopsy  ) For me it was so validating to have a diagnosis after living my whole life as the weirdo who didn't eat sweets. I'm also relieved to have it for medical reasons in case someone ever tried to prescribe or give me something that contained fructose. Alas, lots for you to think about. So glad you found this group. I remember the day I stumbled on this forum - I was almost giddy reading about others who had such similar experiences. Do you have any siblings or others in your family who exhibit the same eating habits? |
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Post by colormist on Jul 30, 2008 11:25:39 GMT -5
Pixy stix was the dead giveaway for me. I couldn't stand eating sugar, hated candy bars. I always wanted to fit in, so I'd always try to eat them and would always regret it later. Then, trying to self diagnose online, I came across HFI & DFI. When I read a forum about HFI and how giddy people were over their love of pixy stix, I knew I had found my diagnosis. I do still have a desire to eat sweet things, but I never enjoy it. I try to eat sugar-free (aspertame-sweetened) things, (which are safe for HFI) but I can't tolerate it. My body insists that all sweet things that aren't dextrose are evil.  Welcome to the group. We all like sharing our new discoveries, recipes, and experiences with food.  |
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Post by sarahk on Jul 30, 2008 16:36:27 GMT -5
hi and welcome.
Mike here-we have been super busy latetly and no time to post.
Sarah does not only dislike the taste of sweet things, the smell bothers her--if she bakes cookies or something sweet (for others) she goes outside and she can't stand being inside a Cold Stone (ice cream chain) for more than a minute.
Pulsari-where in Australia do you live? I use to live in Sydney/Rose Bay-in 1988
Interesting-another female in her 20s with HFI--Pulsari--aside from yourself, Colomist, Julie, Regina, and my wife Sarah are all females between 26-32 years old. Miguel is a 28 yr. old male.
Do you have any Eastern European or Scandanavian family history?
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Post by pulsari on Jul 31, 2008 3:06:12 GMT -5
Hi All,
Thank you so much for all your replies. I too have spent my whole life being told how 'wierd' I am and having doctors not believe me! hence the reason I gave up trying to get a medical diagnosis many years ago...
My situation is that even as a baby (according to my mum) I would always spit out anything sweet such as stewed apples or honey dipped dummies... for my entire life till now I have found it easiest to tell people I am 'sugar intolerant' and it turns out I probably was not far off!
Julienc: I also thought I must just have IBS which is what I googled last night initially which led me this site (with much joy!) My mum did not eat sweets when she was younger but apart from that I think I am the only one in my family that I know of like this...Do you know what type of specialist I need to contact to ge the DNA test?
Sarah aka Mike - I live in Melbourne (and was only 7 in 1988 so dont think we would have met when you were here lol). As for background I have Slovenian grandfather and Scottish on other side....
I am the same as other people here in that I also do not 'like' the taste of anything sweet and can tell as soon as I smell something whether I can eat it or not.
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Post by julienc on Jul 31, 2008 6:49:02 GMT -5
It amazes me how similar all of our experiences are, yet we are all scattered around the world.
My mom said the same thing - my brother and I both as babies would spit out all the sweet foods and refused to eat it. Fortunately she never forced anything on us.
As for the testing...I started with a GI doc at our local hospital (Gastrointestinal), which probably wasn't the best choice, but it got my foot in the door. The GI doc was able to check out my liver and such, but I had to see a Geneticist to get the DNA testing. The GI agreed to give me the referral, but he REALLY did not think I had HFI. So, ideally I would've just gone straight to the Geneticist, but our system is a little odd with referrals and such.
I know some here have just had their regular doctor mail a blood sample to Dr. Tolan at Boston University (Fred posted the link earlier in this thread). There are instructions on the site for how to do that.
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Post by sarahk on Jul 31, 2008 12:31:21 GMT -5
Mike: Pulsari--I was only 10 in 1988-we may have run into each other–were you at World Expo ‘88 in Brisbane, or the Sydney Harbor for the bicentennial celebration? I loved Australia, aside from the beaches and the paradise settings, I was really into Zink sunblock, Neighbors with Kylie M. and Jason Donavin, and the tv show Ridgey-Didge. My parents moved us back to the US after about 7 months. Haha-look at what I found: www.youtube.com/watch?v=eqZaDEuVtSAI gotta ask: Can you eat Vegemite After college (2001) Sarah went on a Contiki tour (to Europe) full of Aussies–one of the girls on the trip did vegemite ads or commercials when she was a kid. Sarah can’t recall if she can eat it or not Sarah had a really hard time getting a diagnosis–the doctors sent her parents to a psychiatrist-believing they were just weird/crazy over-protective parents–they hard the same lines most others heard: “I’ve been doing this job for XX years and have never seen a case of HFI, she probably has something else.... I asked about your nationality b/c I think a few others mentioned eastern European backgrounds–Sarah has grandparents from Poland and Austria–not too far from Slovenia-especially how often people moved villages between WWI and WWII. I recall reading that HFI was a bit more prevalent in the Scandinavian countries–smaller gene pool I guess. |
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Post by billiejh on Jul 31, 2008 21:11:16 GMT -5
Hi all, we too are being told that our daughter can't possibly have HFI, it's so rare, that it must be DFI, so we are going to push for DNA test, as we really want to know. If I read it correctly, the DNA testing is about 70% certain, so does that mean that 30% of people would not test positive, and have different mutations that aren't identified yet? That's what scares me, because it could come out negative, but someone could still have it? Is that correct? I've read about other tests, breath test or intravenous sugar test, has anyone else had either of these? Would they be of any use?
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Post by Tammy on Jul 31, 2008 22:47:48 GMT -5
Hi Billie,
You are right in that someone could test negative and still have HFI. My daughter was Diagnosed back before the DNA test was available. She had an open liver biopsy, which is indisputable. She has HFI - no question. After the age of the internet, I discovered Dr. Tulan. He requested a blood sample from her for his research. She tested negative, which puts her in the 80% that has a different mutation than the majority.
Even with that possibilty, It's still the best place to start.
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Post by pulsari on Aug 1, 2008 5:42:32 GMT -5
Yes! I can eat vegemite - which is good seeing as no honey, jam or any other spread...
How do other's go with Alcohol - I can drink a limited amount of premium beers but am always majorly sick and almost always throw up the next day... Any other suggestions from anyone??
Or do I just accept that I will be a teetotaller?
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Post by colormist on Aug 1, 2008 8:44:05 GMT -5
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Post by sarahk on Aug 1, 2008 11:02:34 GMT -5
Mike: Sarah drank an entire Rolling Rock LIGHT yesterday-without any problems. If she drinks a regular Rolling Rock, Corona, or St. Pauli Girl-she only drinks about half a bottle or less. Light beers are always better for her, as are wheat beers. With wine, the higher the alcohol content the better-as alcohol ferments, it "eats up" the residual sugars-so higher alcohol dry wines are best--btw--Austarlia and NZ has produced some really nice wines the past couple of years--just as good if not better than the SF Napa Valley and French wines. Sarah really liked Yellow Tail wine Pulsari--we may need to clarify what you consider "a limited amount" of beer. My family is from Russia, and I always thought Russians were big drinkers....until I partied with Australians Sarah has some great stories of the Aussies drinking on Contiki-you guys definetley have a different standard than here in the US Are two Foster Beers a limited amount? |
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Post by ukbill on Aug 19, 2008 18:34:14 GMT -5
Hi Pulsari welcome to the Forum I believe the dislike for the taste of anything sweet is an essential skill that is learned from an early age providing no dextrose or sweet things are given that will confuse the child's taste buds. The ability to detect "hidden" sugar in foods particularly refined sugar is essential for good health. I get "saved" by this at least once every single week. I am now 52 and other than problems with digestion caused by HFI, when I push my limits a little, I feel fine, better these days than ever before since I have continued refining my diet. I can eat Vegemite and the inferior UK brand called Marmite (made from Yeast extract) I certainly cannot stand the smell of sweet cooking. A trip to Cadburys World (a chocolate factory) nearly has me throwing up, just as a result of the smell. I can vouch for the injection of intravenous Fructose as being dangerous .. its even worse when they get the decimal place wrong and inject 150 grams instead of 15 grams. It took me 6 to 12 months to recover! The Doctors then wanted to do a Liver Biopsy which I refused because A/. I was not in a fit state anyway and B/ I thought they had botched up badly enough not to trust them again. It was quite interesting to see doctors panicking and asking me what they can do as I lost all vision and passed out! Not an experience I would recommend to anyone! Mike, Russians drink Vodka mostly, which made (usually) from distilled beer (barley / wheat). But being very inventive when it comes to alcohol they seem to distill anything that they can brew! I am thought to have some Eastern European ancestry but it would have to be well over 200 years ago as we can trace my family back to the 1780's Unless one of my more recent ancestors had some fun on the side However simply by being British I / we will naturally have a mix of blood lines from all over Europe and beyond. 1500bc ie 3500 years ago the Celts (Welsh / Cornish / Scottish and Irish) Were in Prague 1200 miles away! So the races we think of as "British" are from all over the place, and melted together by time. I can drink Beers made from Barley and Wheat but not Maize beers (Fosters and most American and UK mass produced beers) that seem to be made from Corn called sweet corn or Barley / Corn mixes. Corn of course is what they make Fructose syrup from! I cannot drink Wine no matter how dry it is. I do not get a sugar / FHI reaction so much as an instant hangover and a gross feeling of being unwell (well part FHI then). In the Information I was given in 1981 (when I was diagnosed) included a note about a French lady who lived to be 85 if I remember it right. She was first diagnosed in 1949 when she was already in her 70's. The reason the Doctors became interested in her was that she still had ALL her own teeth at 70+ years old... which was unheard of in those days and not common now either. The only fillings I have area as a result of cracking Hazelnuts in my back teeth.. one was harder than my tooth..  At the Time of my Diagnoses in 1981 I was the 7th known case in Europe. I hope this helps.. You are not alone anymore.. great feeling yes? |
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) For me it was so validating to have a diagnosis after living my whole life as the weirdo who didn't eat sweets. I'm also relieved to have it for medical reasons in case someone ever tried to prescribe or give me something that contained fructose. Alas, lots for you to think about.
