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Post by Sm on Jan 8, 2012 14:00:51 GMT -5
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Post by charlie on Jan 9, 2012 13:24:57 GMT -5
I wasn't going to comment on this website to start with as I wanted to see how it panned out. I assume Sm Guest you are the author and this is the second time you have used this board to promote the site so I will now comment. I will be polite though as I am the admin of the malabsorption board that you have very kindly linked to - the bright one that needs sunglasses!!!! I have toned the background down a bit now!!!!
I do have a few concerns about the information on the board and do wonder if it is based on personal experience or information gleaned from research. Whilst it is great to get more information out there about rare conditions like HFI it is important it is accurate, especially on a website such as dietanddisease as it is not a chatboard like this one therefore people assume the information is 100% accurate. On proboards and chat sites people know to treat all info with care.
My main concern is the fructan issue, what is this info based on, as far as I am aware white grains are OK for HFI, not for malabsorption and lets face it the diet is limited enough don't limit it further unecessarily. I tried it with Megs for a while and it makes the diet damn near impossible. Also most are ok with dairy and lactose sugars. The egg information has come to this board via nutriiton data which states there is a small amount of fructose in eggs and certainly various people on here do struggle with eggs in various different quantities and designs.
Don't know what other folks think, but at least it sends folk here for more info and that has got to be good, as long as they really do have HFI and not just clutching at hypoglycemic straws!!
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Post by colormist on Jan 10, 2012 11:15:49 GMT -5
I also went through and read the articles about HFI. I'm also confused as to what the author's credentials are, exactly. I'm not sure if they are a dietician, HFIer, geneticist, or combination.
Much of the articles seem to contradict itself. On one line it seems to suggest only eating meat and the next mentions rice muffins. I've never heard of rice muffins. I'm very curious as to what they are and how one goes about making them. The articles also say eggs contain fructose, then suggests eating them.
I do like the food diary idea. I've never kept one myself, but I'm well old enough to know what is passably safe and what's a trigger.
I dunno. It seems more to say what not to do and doesn't give a lot of examples of what to do. I know saying what to do is very risky and I tend to shy away from giving specific examples in my blog as well, but it seems the audience you're targeting is, well, the people on this board. And nothing you seem to be saying is very supportive. It's all very scolding and negative. I just can't take the word of some stranger without a bit of credibility to back it up. I was told by my geneticist that I already knew more than anybody he could refer me to. I tend to agree with him given the information I've found online.
Of course, if there was such credibility then I'd be more likely to take the information provided to heart.
On another note, with the huge list of side effects listed on that blog, I wonder if protein deposits (the floaty things you see in your vision that live in your eyes) are a side effect from HFI. My optician said I had a lot of them (they're always there, at least three or more at any given time).
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Post by tikitavi on Jan 10, 2012 15:17:23 GMT -5
I agree with Charlie, I think white grains are OK, aren't they? I don't have problems as long as the amount is moderate. I do have problems with gluten intolerance but I take an enzyme for that and I'm fine. I agree that there's no reason to limit the menu more than necessary! But if people are having issues, then of course it should be investigated. Even refined white flour does contain 100mg fructose per 100g according to the Fineli database. And I DO feel it when I have too much.
Colormist, funny you mentioned protein deposits! I just had the weirdest eye problem the other day, there was this "glob" in the very center of my field of vision, and it was flickering! I was really worried! My husband looked it up and said sometimes the vitreous humor gets "clogged" (especially with "age" - ouch! I'm only 40!!), and that rolling your eyes can help. And sure enough, I rolled my eyes and it went away! Crazy stuff!
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Post by ukbill on Jan 15, 2012 19:11:25 GMT -5
Tikitavi I have been wondering about the level of Fructose you say is in Wheat flour.. according to Nutrition Facts nutritiondata.self.com/facts/cereal-grains-and-pasta/5745/2There is only 0.3g (300 mg) per 100g of sugars in White milled wheat flour. This is not broken down into which sugars because at this level detection of particular carbohydrates one from another is impossible with current technology. I cannot take much in the way of whole meal flour because of the high digestible fibre level (also there is Fructose in it from the wheat germ). However I have not had a problem with white wheat flour particularly if its made into bread where the yeast should have a good go at eating anything that looks like a sugar molecule first before going after the starches. It might be worth checking the recorded levels of sugars in none Gluten flours (like rice and spelt) and seeing if its still the Gluten or it is the sugar that's getting at you My eyes go "off" sometimes I have put it down to changes in the amount of moisture in my eyes as my sensitivity changes so dose the osmotic pressure in my eyes / body. I luckily do not really need glasses yet except to see very small writing. Buying them is a nightmare because I go in for an eye test one day they make the glasses next week I go in to collect them and my eyes have changed and they are either far to strong or have no effect at all! Recently found Poundland (a shop where everything is priced at £1) were selling reading glasses I bought 3 pair one of each strength.. sorted now and for £3! result!
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Post by ukbill on Jan 15, 2012 22:43:42 GMT -5
Just had a look at the web site and its really not good! On the page headed "HFI: Putting It Into Perspective" Its so wrong and frightening for people who may be unduly scared of statements like " HFI is a serious and fatal disease " No its NOT! Serious Yes if not controlled but Fatal NO! Not unless you are force fed the wrong foods by someone like a misinformed parent with a child. This statement is wrong also "With HFI, there is only one food that does not contain any of the sugars you cannot digest: meat (not processed). " That is just very wrong! "Tolerance Level This comes from the medical condition Fructose Malabsorption. " What the hell? ? Just how can you mix up two totally different conditions one genetic one not together is beyond me! One one page you state "Fructose Malabsorption should not be confused with Hereditary Fructose Intolerance " Yet do this yourself all over the place! Sm if you read this please PLEASE pull down your site until you have really totally re-written your HFI site, I really hope the rest of your site is an awful lot better than this part!. It is really just WRONG potentially dangerously Wrong!
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Post by ukbill on Jan 15, 2012 22:55:06 GMT -5
This has to be a spoof site look at the following part of the site "Tea or Coffee? Ah the morning fix – caffeine! HFI patients have reported when they drink tea they “jump” into severe hypoglycemia (within minutes). They are right – tea is a big no-no for HFI. Think of tea as “liquid fructose” even if you drink it black. That’s because the endosperm in tea gets developed (during growth) – and that endosperm is a simple carbohydrate (fructose or glucose). This means all teas – it doesn’t matter what kind it is or how pretty the box is – is a no-no. " Just how wrong is this? ? Tea is a leaf's taken from the Camilla bush, there is no endosperm in a leaf its part of a seed like wheat, and oh yes Coffee!
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Post by sm on Jan 16, 2012 3:59:12 GMT -5
Whoa, hello people, this is Sarosh. I forgot my password so I am using my initials (sm) as the board will not let me use my name as a guest. I came across this site and was horrified as the contents are potentially dangerous and posted it to get your comments. And I have posted it once not twice and no I am not the author.
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Post by tikitavi on Jan 16, 2012 7:31:23 GMT -5
UKBill, here's where I got my info on the fructose in white flour: www.fineli.fi/food.php?foodid=124&lang=enWheat flour for yeast bread sucrose 0.3g fructose 0.1g For comparison, here is the info from Health Canada: webprod3.hc-sc.gc.ca/cnf-fce/report-rapport.do?lang=engGrains, wheat flour, white, bread flour Fructose 0.03g Sucrose 0.24g So it seems that there is some discrepancy, but all of them do report that white flour does contain some sucrose and fructose. Since I proof my yeast for homemade bread on the flour only, using no sugar at all, that further makes me think that there is some sugar inherent in the flour for the yeast to feed on. At any rate, I try to keep my intake of flour down to a moderate level. P.S. Fineli database does show rice flour contains some sugars too: www.fineli.fi/food.php?foodid=182&lang=ensucrose 0.3g fructose <0.1g
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Post by ukbill on Jan 16, 2012 11:19:48 GMT -5
Sorry Sarosh!..
Humble apologise,
Yes that site is so bad It could be a spoof site,. one in very bad taste however!
I have posted on the site to tell them how dangerous they are. I think a message to wordpress threatening them with legal action should anyone believe anything on that site and cause damage to an HFi as a result might do the trick and get it pulled down.
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Post by ukbill on Jan 16, 2012 11:21:12 GMT -5
tikitavi I will take a look when I have 5 min,, thanks for info
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Post by charlie on Jan 16, 2012 14:47:45 GMT -5
apologies, Sarosh, yes have met you before and know you are very sensible, Next time maybe comment eg what do folk think, it did sound like you were directing us for info. Unfortunately the owner of the site plugged it a couple of weeks ago with some very wrong info too on glycogen storage as a guest, just thought she was using different names to plug it again.
we must find a way of sending a message of concern, I'll se about posting a comment. I have noticed they have changed it slightly with a few disclaimers, maybe they read our concerns. It just goes to show how easy misinformation can be put on the web and people probably believe it.
If I had come across it years ago when we first started diagnosing Meg I would probably have started planning her funeral!!!!
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Post by charlie on Jan 16, 2012 17:47:58 GMT -5
Don't know who said what, or who read what but it looks like HFI is no longer featured on this site now. Just went on to read all that bumph she had on hypoglycemia to start analysising it, as I have no life and time on my hands tonight and sod all on telly, and couldn't find all the stuff that was there. Lets hope they are more accurate on Alzeimhers, thats another topic that should be handled properly!!! ?
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Post by ukbill on Jan 16, 2012 20:26:50 GMT -5
RESULT!
Its been removed form facebook as well.
PHEW! thank goodness for that!
One person had "liked" it on facebook I sent a message saying not to trust the info and to come to this site if they needed info on HFI so I hope the damage it could have done may be reversed.
Pity I should have copied the site for future information as to just how dangerous info on the internet can be.
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Post by ukbill on Jan 16, 2012 20:32:07 GMT -5
Okay I crowed too soon.. Found this on the site.. "In-Born Errors Hereditary Fructose Intolerance has been moved to a private location for current customers only. However, please choose one of the links below if you need help for HFI, Fructose Malabsorption, Glycogen Storage Disease (GSD) and Congenital Sucrase Isomaltase Deficiency (CSID): HFI: Parents may find support here: The Madisons Foundation NORD Rare Disease Support Community MUMS National Parent to Parent Network Hereditary Fructose Intolerance Discussion Board" Just what on that site was worth keeping? Anyway the site makes great claims to be free information and not to be providing the information for profit.. "customers" = cash am I right or am I right? Anyone with a few min to spare care to check the three links above our one to this site please? In case they have information on HFI or links to incorrect info as well.
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Post by Sm on Jan 17, 2012 10:09:40 GMT -5
I am sorry as well, should have put it in context.
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Post by colormist on Jan 17, 2012 11:26:40 GMT -5
Sarosh, I thought your ID was = Sm(all) Guest and just a generic name for a non-login.
And now we know it's you, so we will put away our pitchforks. Thanks for the heads-up on the article and for letting us know Sm = Sarosh.
Really, really, really sad article. There's so much misinformation out there. I would like to know who the author was, though. Especially since they claim to know so much.
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Post by buddhasbelly on Jan 31, 2012 19:12:55 GMT -5
I have had a few times, that I didn't see anything anymore for a couple of minutes up to half an hour, or - more often - that part of my eye couldn't see. Always tought it was something strange about me, but do I understand correctly that this too can be caused by HFI? Or are least, more people with HFI have this? UK Bill, measuring glasses also was a lóng process for me, my eyes differ much too depending on when they are measured. It did help me though when I finally got glasses! My headaches almost disappeared! Variable eye sight can be caused by vitamine B12 deficiency, did you know that? My fluctuations have declined much since I am on B12 injections. Although I don't want to be one of those people force talk you into more supplements ;-) You seem to be doing fine with your Pound Store!
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Post by ukbill on Feb 12, 2012 18:43:28 GMT -5
Poundland ?? That's just me being a skinflint.. Deep pockets and short arms. ;D Not sure about eyes yes mine do change from time to time. Gradually they are getting worse but then I am not doing too badly. I do not need glasses for normal reading but these days do for the small print (ie ingredients on tins and packets in the supermarket) Everyone in my family has glasses.. I do not.. strange but true. I have always put it down to osmotic pressure being effected. Some days I can drink water (or tea) for England. Then two days later I am pee'ing for England and wonder if the ocean rising is my fault! I do not know the reason for this likewise why do I get hypoglycaemic when thirsty? You may be right about B12. I am currently trying to ensure I eat at least one meal a week of Liver (chicken, pigs or lambs) to boost the vitamin levels I am taking in. I have not thought to watch and see if my eyes are more stable or not. Occasionally I take a strong B vitamin complex tablet, it contains B12. But I have not noticed a specific change in my eyes afterwards.. energy levels increased yes.. After reading one posting about magnesium I went and bought some expensive magnesium mineral tablets. I took one.. and was very odd for days afterwards.. I just felt my whole system was screwed up, I did not know if I was hungry or not for example and had very odd drinking demands.. (suddenly getting very thirsty) So I have not taken a second tablet. One expensive packet heading for the bin. (OK its my Scottish ancestry all right, I cannot help not wanting to waste money.. please don't go on about it tee hee )
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