I have a 6 year old son with CF. He is in good health with digestion being his main problem right now. He had pnemonia in the winter and was in the hospital for the first time. I have been researching gluconutrients. I've heard such wonderful things. Can someone give me any negatives on the products? Did you use the CF protocol? or just a few of their products? We are seriously considering using them so if anyone knows anything about them please help.
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gluconutrients
- Thread starter anonymous
- Start date
Please, please, please do not waste your money on "gluconutrients". They are essentially sugar pills, also known as placebos. I can find no reputable scientific studies to support the use of these products for any condition. Moreover, there's no theoretical reason why people could benefit from taking a sugar supplement. You and your child can make all the sugars your bodies needs from the carbohydrates found in plant foods. So eat your fruits and veggies and skip the expensive snake-oil remedies.
Bambi, PhD (biochemistry), MPH, and mom of a 16-yr-old w cf
Bambi, PhD (biochemistry), MPH, and mom of a 16-yr-old w cf
I think you mean glyconutrients. If so, do all you can. My 15 month old son was diagnosed with CF Dec 2005. I have had him on glyconutrients since in the womb ( i was taking them while pregnant). They are now teaching about glyconutrients in med schools. So they are not simply placebos, they are nutrients that the medical world is seeing as absolutely necessary. Contact an organization called manna relief. They are a little hard to get ahold of, but absolutely worth it. They can give you info on the products and on how to get the products at a discount. We basically received all the products that manna relief considers protocol for CF and then just gave him little by little. If his stools started getting bad, then we would back off. Some of the products do have fiber and such in it. So, that was my only concern. In regards to the ambrotose, there is no documented case of it have negative effects. So, my advice would be to do the protocol amount, right away.
hope this helps,
missa
hope this helps,
missa
If you do a Medline search for "glyconutrients", you get exactly three entries, which is phenomenally low (usually you get hundreds or thousands for any general topic). Moreover, two of these articles are more than five years old, considered outdated for scientific studies. So if, indeed, medical schools are teaching that there is some value to taking glyconutrient supplements (and I'd be very curious to know which ones are doing so), they are not basing it on evidence published in reputable, peer-reviewed journals. Moreover, when a supplement is advertised as being useful for as many different conditions as the glyconutrient people are claiming, that in itself is almost a surefire indicator that a scam is involved. I'd be happy to reconsider my position if someone can show me some adequately controlled studies in humans, but until then, I consider these products to be worse than useless.
Bambi
Bambi
If anybody out there has tried this stuff please reply witht the results because I have thought about trying the stuff myself. I almost had to take my first round of IV antibiotics and I have always had a problem gaining weight and I am looking to try something other than the conventional meds.
Dave 30 w/cf
Dave 30 w/cf
Hi Dave,
You can read about others' varied experiences with these products by doing searches on this site using key words "glyconutrients", "Mannatech", or "ambrotose". Please be aware, however, that the president of Mannatech (apparently the primary source of these products) has been sued more than once by state agencies for making fraudulent health claims, and that Mannatech information provided for stockholders indicates that the company doesn't know whether its products work, or even if they're safe. See http://www.ncahf.org/articles/j-n/mannatech.html for more details.
Bambi
You can read about others' varied experiences with these products by doing searches on this site using key words "glyconutrients", "Mannatech", or "ambrotose". Please be aware, however, that the president of Mannatech (apparently the primary source of these products) has been sued more than once by state agencies for making fraudulent health claims, and that Mannatech information provided for stockholders indicates that the company doesn't know whether its products work, or even if they're safe. See http://www.ncahf.org/articles/j-n/mannatech.html for more details.
Bambi
I weight train regularly and no matter how hard I lift I can't seem to gain more than 5 pounds. When I was a teenager I had gym memberships for about three years and lifted steady and still never really gained much weight. I took protein and/or weight gain shakes when I was going to the gym and none of the stuff that I tried worked. Now I workout at home, I have an exercise bike, Bowflex, free weights and hack squat/leg press machine. I take 2 Scandi Shakes a day and 2 boost a day an have been going that for 9 years and even with the weight training I haven't more than 5 pounds. My weight has fluctuated from 54 kg up to 58 kg, I have never broken 60 kg.
Dave 30 w/cf
Dave 30 w/cf
Dave, out of curiosity, do you keep count of the calories and protein you take in everyday? I know CF centers have always stated that paying attention to fat intake is very important. I am not saying that they are wrong, but medicine is not always correct. If you are interested, I can tell you what has worked for my husband. In his JR and SR year of HS, he was 6 foot and weighed about 130-140. The summer between HS and college, he worked out everyday and counted his calories and protein. He is now still 6ft but between 185-195lbs. If you are interested in what he does that works for him, let me know and I will post it here.
Julie (wife to Mark 24 w/CF)
Julie (wife to Mark 24 w/CF)
Here it goes, a lot of people don't agree, but I believe that my husband's results speak for themselves because he hasn't always been "heavy". In his JR and SR year of HS he was 6 foot and about 130-140 give or take some pounds.
Here's how he does his day. He eats every 2-3 hours. His daily goal is about 4000 calories, and 1.5 grams of protein per LEAN BODY MASS on days he lifts weights at the gym, .75-1.0 grams per LEAN BODY MASS. You figure lean body mass by taking a person's body fat percentage and multiplying it by their weight in pounds. For example, Mark is 12% body fat and weighs 195 right now, so I multiply .12 by 195 and get 23.4 Then I take that # (23.4) and subtract it from his weight in LBS. 195-23.4=171.6. So for mim 171.6 is his LEAN BODY MASS. On days he works out he sets his goal in the morning: 171.6x1.5=257.4 grams of protein. Now all that info I just gave you, put it in the back of your head, print it and put it somehwere for later.... once you son gets a little more weight/muscle.
To start out he should be eating about 115grams of protein daily, no more than he weighs right now because if he isn't eating that much currently, eating a signifigant amount more than usual can shock the kidneys and cause problems. So he may even want to do it gradually. Have him track what protein he is eating now and increas it by 10-20 grams a week. The same goes for calories, he shoud keep track of the calories he is eating now and increase gradually, at a rate of about 200 calories a week-a bit more if his body can handle it.
My husband pays ABSOLUTELY NO attention to his fat (or sodium) intake. So many CF clinics push fat, fat, fat intake, becuase CFers don't digest it well. That is true in-part, but CFers don't digest anything well, and protein and calories are more important to weight gain and muscle mass (which is muscle is clearly healthier than fat) than is fat. His CF dieticians caution him on not intaking a lot of fat, but he hasn't had a problem since he started doing it his own way.
He recently created an excel spreadsheet to log what he eats, and how many Protein Carbs and Fat the food item has. For example he will eat a chicken breast, so he will input 32, 0, 1.5 respectively. then the spreadsheet calculates the Calories. FYI- 1g protein=4 caloires; 1g carb=4 calories; 1g fat=10 calories. Then if he has rice with the meal, he will list that separately, then if he has an avacado (great source of fat, which equals calories too) so he can see where his protein fat calories and cars are coming from. I can email it to you if you like: division902@hotmail.com
He also drinks about 4-6 Boost plus shakes a day. He hates scandi shakes for two reasons: he says they taste pretty bad-and he's not really that picky, and they have MUCH less protein -I'll just get a can and a leaflte and give you the breakdown: Boost (same as ensure, jsut not name brand and a little bit cheaper) 360 calories, 130 calories from fat, 14g fat, total carbs 45g, protein 14g. Scandishake: 440 calories, 190 calories from fat, 57g of carbohydrates (more sugar than boost) and only 5 grams of protein. The scandishake does have more calories, but he finds he can make up those 100 calories elsewhere. The taste is just too bad for him, and he finds its easier to have a can he can take with him. He use to have 2-3 in his college bag, just in case he got hungry. We have a mini-cooler in the car that has about 6-7 of them so if he is hungry he just opens a can (or two). Quite frequently, insurance companies will cover these boost (or ensure, some like ensure better for flavor) shakes so if your son can stand them, it might be beneficial to look into. WE get an Rx of about 150-175 a month. If insurance doesn't cover them, maybe give it a month trial? It is 100% deductible for MEDICAL on your taxes (I can explain that too if you aren't aware of the CF food expenses being tax deductible).
He also does have his traditional shakes that he mixes up in the blender as well. There has been some controversy about this product because it has a diabetic warning on the side of it so if your son has sugar problems, I wouldn't recommend it because it has a LOT of carbs. But my husband gets 1/2 of his daily calorie intake from 2 BIG scoops of this stuff. It is called Serious Mass by optimum nutrition (you can google it, or MSN it and see a package and even review the protein/calorie intake per scoop). But that one is somewhat expensive (but I say, if it works and he uses it, it's worth it) and not all people like it, and some people have some sugar problems with it.
If you are interested in that excel spreadsheet, please email me. It will help your son see what he is taking in everyday and can help identify areas where he is lacking in his intake. Mark also lifts weights about 3 times a week (more during the summer). It can be very discouraging at first, especially if you are a smaller person who can't lift a lot, but you have to start somehwere. Now that Mark has signifigant and noticable muscle mass, he gets really pumped about working out. But the first year he was working out with weights, he was really frustrated. Luckly he foudn a really good, motivating workout partner who pushed him until he coulnd't go anymore.
Hope this helps a bit and email me if you want that spreadsheet.
Julie
Here's how he does his day. He eats every 2-3 hours. His daily goal is about 4000 calories, and 1.5 grams of protein per LEAN BODY MASS on days he lifts weights at the gym, .75-1.0 grams per LEAN BODY MASS. You figure lean body mass by taking a person's body fat percentage and multiplying it by their weight in pounds. For example, Mark is 12% body fat and weighs 195 right now, so I multiply .12 by 195 and get 23.4 Then I take that # (23.4) and subtract it from his weight in LBS. 195-23.4=171.6. So for mim 171.6 is his LEAN BODY MASS. On days he works out he sets his goal in the morning: 171.6x1.5=257.4 grams of protein. Now all that info I just gave you, put it in the back of your head, print it and put it somehwere for later.... once you son gets a little more weight/muscle.
To start out he should be eating about 115grams of protein daily, no more than he weighs right now because if he isn't eating that much currently, eating a signifigant amount more than usual can shock the kidneys and cause problems. So he may even want to do it gradually. Have him track what protein he is eating now and increas it by 10-20 grams a week. The same goes for calories, he shoud keep track of the calories he is eating now and increase gradually, at a rate of about 200 calories a week-a bit more if his body can handle it.
My husband pays ABSOLUTELY NO attention to his fat (or sodium) intake. So many CF clinics push fat, fat, fat intake, becuase CFers don't digest it well. That is true in-part, but CFers don't digest anything well, and protein and calories are more important to weight gain and muscle mass (which is muscle is clearly healthier than fat) than is fat. His CF dieticians caution him on not intaking a lot of fat, but he hasn't had a problem since he started doing it his own way.
He recently created an excel spreadsheet to log what he eats, and how many Protein Carbs and Fat the food item has. For example he will eat a chicken breast, so he will input 32, 0, 1.5 respectively. then the spreadsheet calculates the Calories. FYI- 1g protein=4 caloires; 1g carb=4 calories; 1g fat=10 calories. Then if he has rice with the meal, he will list that separately, then if he has an avacado (great source of fat, which equals calories too) so he can see where his protein fat calories and cars are coming from. I can email it to you if you like: division902@hotmail.com
He also drinks about 4-6 Boost plus shakes a day. He hates scandi shakes for two reasons: he says they taste pretty bad-and he's not really that picky, and they have MUCH less protein -I'll just get a can and a leaflte and give you the breakdown: Boost (same as ensure, jsut not name brand and a little bit cheaper) 360 calories, 130 calories from fat, 14g fat, total carbs 45g, protein 14g. Scandishake: 440 calories, 190 calories from fat, 57g of carbohydrates (more sugar than boost) and only 5 grams of protein. The scandishake does have more calories, but he finds he can make up those 100 calories elsewhere. The taste is just too bad for him, and he finds its easier to have a can he can take with him. He use to have 2-3 in his college bag, just in case he got hungry. We have a mini-cooler in the car that has about 6-7 of them so if he is hungry he just opens a can (or two). Quite frequently, insurance companies will cover these boost (or ensure, some like ensure better for flavor) shakes so if your son can stand them, it might be beneficial to look into. WE get an Rx of about 150-175 a month. If insurance doesn't cover them, maybe give it a month trial? It is 100% deductible for MEDICAL on your taxes (I can explain that too if you aren't aware of the CF food expenses being tax deductible).
He also does have his traditional shakes that he mixes up in the blender as well. There has been some controversy about this product because it has a diabetic warning on the side of it so if your son has sugar problems, I wouldn't recommend it because it has a LOT of carbs. But my husband gets 1/2 of his daily calorie intake from 2 BIG scoops of this stuff. It is called Serious Mass by optimum nutrition (you can google it, or MSN it and see a package and even review the protein/calorie intake per scoop). But that one is somewhat expensive (but I say, if it works and he uses it, it's worth it) and not all people like it, and some people have some sugar problems with it.
If you are interested in that excel spreadsheet, please email me. It will help your son see what he is taking in everyday and can help identify areas where he is lacking in his intake. Mark also lifts weights about 3 times a week (more during the summer). It can be very discouraging at first, especially if you are a smaller person who can't lift a lot, but you have to start somehwere. Now that Mark has signifigant and noticable muscle mass, he gets really pumped about working out. But the first year he was working out with weights, he was really frustrated. Luckly he foudn a really good, motivating workout partner who pushed him until he coulnd't go anymore.
Hope this helps a bit and email me if you want that spreadsheet.
Julie
CFHockeyMom
New member
Julie, tell me (us) more about CF food expenses being tax deductible.
I came across this forum quite by accident but thought I would take the time to post to it. Glyconutrients are not a pharmaceutical; they don't cure anything; they are not disease specific. Glyconutrients are a blend of 8 essential sugars the body needs for cellular communication and immune system support.
I don't have CF and don't know anyone who has CF. But consider that health begins at the cellular level; so does disease. The body repairs cells, removes dying cells and produces new cells daily. Stem cells begin in the bone marrow and the bone marrow is part of the body's immune system. These stem cells will go wherever they are needed within the body to become a part of that particular tissue/organ. To do this effectively, the body must communicate properly within through hormones, enzymes, neuotransmitters, etc.
The body depends on nutrition in order build really healthy cells and to function properly. Of these 8 sugars, only 2 (glucose and galactose) are found in the food we eat today. The other 6 are largely missing from our diets.
Those of us, no matter our health condition, have had positive health changes.
Please do your research about glyconutrients before you decide absolutely there is no merit in adding them to your diet.
Sincerely,
Shirley
I don't have CF and don't know anyone who has CF. But consider that health begins at the cellular level; so does disease. The body repairs cells, removes dying cells and produces new cells daily. Stem cells begin in the bone marrow and the bone marrow is part of the body's immune system. These stem cells will go wherever they are needed within the body to become a part of that particular tissue/organ. To do this effectively, the body must communicate properly within through hormones, enzymes, neuotransmitters, etc.
The body depends on nutrition in order build really healthy cells and to function properly. Of these 8 sugars, only 2 (glucose and galactose) are found in the food we eat today. The other 6 are largely missing from our diets.
Those of us, no matter our health condition, have had positive health changes.
Please do your research about glyconutrients before you decide absolutely there is no merit in adding them to your diet.
Sincerely,
Shirley
As I've indicated before, our bodies can easily convert the glucose from food into any other sugar needed for healthy functioning. The term "essential sugars" is inconsistent with standard biochemical usage. We refer to "essential amino acids" and "essential fatty acids" because these are substances that humans need and cannot make themselves. But if we're given glucose -- or even some breakdown products of glucose -- we can make every sugar variant our system requires.
There appears to be a major misconception circulating about the connection between the sugars we eat and the sugar-based compounds that operate in our cells. It is true that various types of sugar play a vital role in a wide range of biochemical functions. <u>That does not mean, however, that changing the sugars in our diets will in any way shift the balance of those functions, either within or between our cells.</u>
In fact, I have made a number of efforts to "do your research" on glyconutrients. Despite repeated searches of medical and scientific data bases, I have yet to find any credible evidence to support the use of glyconutrient supplements for any condition. What I have found is evidence is that at least some of the people promoting these products have a history of being cited for making fraudulent health claims. I believe Mannatech is currently being sued for claiming its supplements benefited a child with Tay-Sachs disease -- although the child in question died many years ago, shortly after getting the Mannatech product.
Bambi
There appears to be a major misconception circulating about the connection between the sugars we eat and the sugar-based compounds that operate in our cells. It is true that various types of sugar play a vital role in a wide range of biochemical functions. <u>That does not mean, however, that changing the sugars in our diets will in any way shift the balance of those functions, either within or between our cells.</u>
In fact, I have made a number of efforts to "do your research" on glyconutrients. Despite repeated searches of medical and scientific data bases, I have yet to find any credible evidence to support the use of glyconutrient supplements for any condition. What I have found is evidence is that at least some of the people promoting these products have a history of being cited for making fraudulent health claims. I believe Mannatech is currently being sued for claiming its supplements benefited a child with Tay-Sachs disease -- although the child in question died many years ago, shortly after getting the Mannatech product.
Bambi
There is an article entitled "Biological Activity of Eight Known Dietary Monosaccharides Required for Glycoprotein Synthesis and Cellular Recognition Processes" at Glycoscience.org website, that is very well referenced. It might help in your research. You appear to have some scientific background.
Sincerely,
Shirley
Sincerely,
Shirley
Do you wonder why I am replying twice to your post? It's because of compliance with Dietary Supplement Health & Education Act of 1994 (DSHEA). Before DSHEA, it was against the law for me to post in this forum what I have posted in the last couple of days.
To make sure that I am in compliance with DSHEA, I make sure I keep educational information separate from business information, even electronically. Therefore, I don't use the company name and it's brand-name products with the generic reference to the products in the same communication. Yes, it's a little awkward but it can be done with some thought.
As far as Mannatech, I read early on what Quackwatch had to say and read some other information as well, because of my own skepticism. Mannatech itself is doing all it can to be in compliance with federal laws (as well as laws of other countries that we do business in), and as far as I know there is nothing in the way of lawsuits against Mannatech Corporation.
When it comes to Independent Associates, it's unfortunate that some may overstep the line and make claims that are not true, either out of ignorance or for some other reason.
Just do keep in mind that this combination of sugars, which is Ambrotose, is food the body does need for optimal health. Ambrotose does not cure a disease, but gives the body what it needs to repair, restore, protect and defend itself. The body is magnificient in its ability to take care of itself if given the nutrition it needs.
Sincerely,
Shirley
PS: My husband and I have a website of information out on the internet with a lot of information. We don't aggressively promote it. I won't give you the name of it, but if you do a search, you probably will come across it, if you're at all interested. The reason I won't give it out is because about 5 years ago, when I first came across these products, I thought everyone would be excited to hear about them like I was. I also was new to the Internet and joined a couple of forums. I said what I wanted to say and was just so happy to do so; and was pretty much "run out of town on the rail." I was accused of selling and marketing. That still smarts.
To make sure that I am in compliance with DSHEA, I make sure I keep educational information separate from business information, even electronically. Therefore, I don't use the company name and it's brand-name products with the generic reference to the products in the same communication. Yes, it's a little awkward but it can be done with some thought.
As far as Mannatech, I read early on what Quackwatch had to say and read some other information as well, because of my own skepticism. Mannatech itself is doing all it can to be in compliance with federal laws (as well as laws of other countries that we do business in), and as far as I know there is nothing in the way of lawsuits against Mannatech Corporation.
When it comes to Independent Associates, it's unfortunate that some may overstep the line and make claims that are not true, either out of ignorance or for some other reason.
Just do keep in mind that this combination of sugars, which is Ambrotose, is food the body does need for optimal health. Ambrotose does not cure a disease, but gives the body what it needs to repair, restore, protect and defend itself. The body is magnificient in its ability to take care of itself if given the nutrition it needs.
Sincerely,
Shirley
PS: My husband and I have a website of information out on the internet with a lot of information. We don't aggressively promote it. I won't give you the name of it, but if you do a search, you probably will come across it, if you're at all interested. The reason I won't give it out is because about 5 years ago, when I first came across these products, I thought everyone would be excited to hear about them like I was. I also was new to the Internet and joined a couple of forums. I said what I wanted to say and was just so happy to do so; and was pretty much "run out of town on the rail." I was accused of selling and marketing. That still smarts.