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Post by Findingnemo on Jan 30, 2017 22:44:32 GMT -5
Are glucose tablets safe for HFI? I'm in the USA.
Like the ones found in the diabetic section?
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Post by colormist on Jan 31, 2017 8:51:30 GMT -5
They usually have some added flavor to make them taste like something. That flavor is not safe. I would talk to the pharmacist to see if they know of any 100% pure medical grade glucose tablets that are unflavored.
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Post by rysmom14 on Jan 31, 2017 9:51:29 GMT -5
I have not found anything that is safe. I friend of mine is a type 1 diabetic and has looked into this is as well and she has never found anything without the flavor.
The glucose gel is the same. They all have the favoring. Maybe this is something that would have to be made special or compounded? We get Tylenol compounded to a liquid form for my son who is 3, since OTC childrens Tylenol have the flavor, so maybe the same idea can be taken with the glucose tabs or gel?
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Post by ukbill on Jan 31, 2017 10:05:10 GMT -5
Solid Glucose is almost always highly contaminated with Fructose.
The manufacture process for making it results in a product that legally can be sold as 100% pure yet is allowed to contain upto 40% "other sugars"
The Laws on food really need updating.. but then that might mean a company looses out on a fast Buck.. and that cannot ever be allowed can it?
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Post by Findingnemo on Jan 31, 2017 12:39:11 GMT -5
Thanks for your reply all. It's a hard rode...had a pretty bad crash and a very hard night last night as a result of taking these - hypos and the whole scene. Still not right today of course. I am expecting a call back from the genetics department this week to set an appt for HFI testing. I was screened over the phone by the gen dept last week and they told me it sounds like HFI and to not waiver on the diet. I didn't realize the mistake I was making until it was too late.
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Post by colormist on Jan 31, 2017 13:45:53 GMT -5
 I hope you feel better soon, Nemo. I do keep Smarties in my purse specifically for emergencies, but I always make sure to acquire real food within a half-hour of eating the smarties. It's still really hard to maintain a steady blood sugar level, particularly if you don't notice the creep. I was out for a hike with my friend. I brought snacks and water and smarties. We were walking on level ground and I felt fine. Then came the stairs. My friend tried to talk me out of it, but I had done the stairs before. I took my time, but the stairs took more energy than I expected. I started to black out and lose my vision. I was half-way through the stairs when I had to sit on the ground, drink water, eat a roll of smarties, and have some crackers. My vision went from a tiny pin-prick of light down a long tunnel to slowly back to normal. We sat there for an hour until I felt well enough to continue on up the stairs. Even then, we had to break a second time because I didn't want to push myself. I just kept thinking about how we didn't have cell reception and how would EMTs ever event get to me?? Next time I bring a proper lunch and make sure to eat BEFORE trying the stairs. Even on the diet these things happen. Keep food with you at all times. Make sure you eat every four hours--particularly if you are out and about. Please keep us posted! |
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Post by ukbill on Jan 31, 2017 13:53:21 GMT -5
I find a good large meal with lots of slow digesting meat in it the night before any heavy exercise really helps keep up the blood sugar level.
Colormist have you tried cornflour milk shakes before you go on a walk?
They boost your blood sugar level for about 8 hours and provide a constant supply of digesting glucose from the starch.
Not the nicest things to drink but more palatable if made with a 50 / 50 milk yogurt mix and can be flavoured with artificial fruit flavourings and colourings if thats your thing?
Essential if your going on long walks or working out hard.
Be aware always that converting body fat back into energy releases Fructose into the blood so be prepared for some fructose load from that.
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Post by Findingnemo on Jan 31, 2017 14:43:05 GMT -5
Colormist, I am much like you. I have had similar experiences with physical efforts, so I've trained myself to handle these situations better over the years (without ever hearing of HFI) but I was just unprepared this time around. So yesterday I ate 3 of those stupid tablets because I went too long without eating and didn't have food around me.
That vision loss is a little crazy, been there..done that.
I was able to find a really great Family Practice Doctor last week who sat with me and heard my story and I am very grateful for that and it gives me a little hope for a formal diagnosis.
Bill I agree with you on the slow digesting meat and keeping sugars steady. That makes a big impact. It allows me to sleep steady at night too when I don't mess up the diet.
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Post by antonia on Jan 31, 2017 15:50:01 GMT -5
There is no such thing as pharmaceutical grade dextrose in the US. Not even your pharmacy can buy it for you. I tried buying it from a laboratory supply store and was told it was not safe for food consumption. It is not produced following GMP,s, nor tested for food safety, they will not sell it to you if they know your intended use is for consumption.
Food safe dextrose derived from corn is known to be highly contaminated with fructose. I have found companies that sell dextrose powder derived from tapioca starch. I personally think this may be the safest form of dextrose available since tapioca starch is virtually fructose free as a starting substrate anyway. I keep a small, airtight container of tapioca dextrose in my purse for emergencies. (We also never leave the house without safe food, so I've never had to use it.) Even if you find candies or glucose tablets without natural colors or flavors (this gets more and more difficult, even Smarties and Pixie Sticks are made with natural colors and flavors now in the US), you don't know what kind of dextrose is being used to make them. But, you can bet that it is corn derived because this is the cheapest form available and is undoubtably what manufacturers will use.
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arjen
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Post by arjen on Feb 3, 2017 9:41:59 GMT -5
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Post by colormist on Feb 3, 2017 11:20:04 GMT -5
Hospitals also use pure glucose/dextrose in IVs and in medicines. So it exists, but we're just not sure how to access it. :\
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Post by tummyache on Feb 3, 2017 14:56:48 GMT -5
I have gotten where I carry a snack size bag of dry roasted sunflower seeds. I buy raw and roast myself or store bought ones usually have added sugar so be careful.
Besides oven roasting...I put them in a dry fry pan over medium heat -no oil added- stirring constantly until tanned, lightly salt, cool, then bag.
From:http://csidcares.org/treatment/food-composition-database/
Sunflower Seeds [Dry Roasted] Glucose[0.003] Fructose[0] Sucrose [2.5] per 100gr
I get nauseous on Smarties + I don't like the sweetness. A small handful or two of sunflower seeds will get me by in emergencies. I also carry a small bottle of water in my purse. Don't know how young a child this would work for though.
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Post by colormist on Feb 3, 2017 16:13:18 GMT -5
I think Oyster crackers might work? Is that small enough finger food? I've also thrown slim jims or string mozzarella cheese in my purse.  |
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arjen
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Post by arjen on Feb 4, 2017 8:08:53 GMT -5
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Post by antonia on Feb 4, 2017 16:13:37 GMT -5
I was excited to find a white rice cracker by Nabisco called Good Thins last week. They have different flavors but "The Rice One Simply Salt" only contains white rice flour, high oleic safflower oil and salt. Nice and packable safe carb source.
There is another rice cracker, black pepper flavor, in the same line that is not safe (for some reason they decided to add sugar and some other crud in that one). But there is a corn flavor that is safe (if you are okay with corn flour). It's a combo of corn and rice flours and tastes very much like corn nuts or Fritos.
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Post by ukbill on Feb 5, 2017 13:19:41 GMT -5
Ref:- Dextrose / Glucose in medical use in the USA and Frusano in Germany.
No its not safe at all.
An HFI lad who was used to eating Smarties (the small ones) was give a large bag of large Smarties by an Auntie.. he of course ate the lot and put himself in ICU.
48 hours of them giving him Glucose I.V's and they still could not stabilize his Blood sugar levels.
When his mother contacted me I told them to stop trying to "help" him because the Glucose / Dextrose was certainly contaminated.
2 hours after they stopped pumping rubbish into him he stabilized and in 4 hours was allowed home again.
So No its not safe and trying to balance your blood sugars with Glucose or Dextrose is really not a good idea.
Also I have spoken to the people (Frusano) who sell those supposedly Fructose free sweets in Germany.. they are made from Solid Glucose.. the sort that is legally upto 40% "other sugars" and still sold as 100% pure Glucose.
I asked them if they had checked their supplier for possible cross contamination in the packaging / manufacturing process and if the Glucose was tested and known to be 100% pure.. they suddenly stopped talking to me and refused to make any further contact.. so no its very unsafe stuff!
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Post by ukbill on Feb 5, 2017 13:21:35 GMT -5
By the way his mother still give him small Smarties and cannot understand why his liver is still bad and he has a fatty lump in it.. while insisting he is on a 100% Fructose free diet.. obviously not.
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arjen
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Post by arjen on Feb 6, 2017 9:19:39 GMT -5
> 48 hours of them giving him Glucose I.V's and they still could not stabilize his Blood sugar levels. So they were NOT giving him pure Glucose I.V.? My son was hospitalized at 5 months because of fainting, apparently after eating fruit. The hospital wanted us to repeat his 'normal' eating pattern, in which we just included some fruit in de morning. After some days he fainted again after eating fruit. The took blood samples, measured his blood glucose levels (2.4mmol/l, 43mg/dl) and started giving him Glucose IV. He was back in 5 minutes. They kept him some days on Glucose IV and his blood levels were fine. So Glucose IV CAN (and should) work. Glucose IV containing fructose is not normal, the doctor said. At least not here in the Netherlands... About Frusano: they have splitted the sugar section on the ingredients list into glucose, maltose, fructose, sacharose and lactose. For the Glucose powder: 91.1% glucose, 4.9% maltose, 0% fructose, 0% sacharose, 0% lactose. They are specialized in fructose free products, they DO measure AND mention fructose content of their products. They do warn for other glucose-sirups being not safe: www.frusano.com/en/lightbox.html?lcidart=85 Why not to trust them? If you feel dizzy because some food contained more sugar than you tought, you could compensate it with (safe) glucose tablets. What could go wrong if they are really 0% fructose? |
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Post by Findingnemo on Feb 6, 2017 20:31:53 GMT -5
The tablets I ate were definitely wrong and not safe. The ingredients werent as specific as we need. So I have started carrying crackers or little pieces of homemade flat bread. Much better choice!
Thanks for the Frusano lead!r
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Post by ukbill on Feb 8, 2017 5:56:59 GMT -5
Frusano is unlikely to be safe! The company selling them has them made for them and has no idea (and has not checked either) the source of the Glucose or purity used.
They are a nothing more than a marketing company jumping on a band wagon so to speak.
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I hope you feel better soon, Nemo. 
