WARNING: the foods we cook for Abby are safe for her, but not necessarily for everyone. Please confirm any ingredients are safe for you before using in your diet. Food Allergies can kill and the best policy is complete avoidance. Read this post for more info.

Friday, June 28, 2013

Sugar is NOT Evil- Why we Gladly Add Sugar to Abby's Diet

What do baby formula,supplemental formula,IV's,and breast milk all have in common?


Did you know that when breast feeding the first bit of breast milk that comes first with each feed is highest in sugar? Then after that is released the higher fat and higher calorie milk is released. The amount of sugar released changes frequently. Recent research indicates that the high sugar content in breast milk actually encourages the right flora in the babies digestive tract.

Sugar in breast milk helps baby

Sugars that occur naturally in breast milk reduce the number of harmful bugs in a baby's stomach, a meeting of experts will hear today.

Tests using an infant formula containing a mixture of the compounds were found to dramatically lower levels of bacteria such as E.coli.

At the same time the sugars - called oligosaccharides - increased the number of friendly bacteria.

They also made the environment in babies' bowels more acidic, which suits "good" bugs but is unhealthy for "bad" bugs.

Natasha Bye, head of scientific affairs at Milupa, the company making the infant formula, said: "In terms of providing a protective line of defence, this is very exciting for us. We have achieved a selective increase of good bacteria and a decrease of the nasty ones."

A total of 90 infants took part in the study conducted in Holland and Germany. One group of babies were fed infant formula containing the "prebiotic" oligosaccharide mixture. The other received a standard preparation.

Later tests showed that between 2.5% and 3% of the gut bacteria carried by the second group were harmful. But in the "prebiotic" group harmful bugs only made up 0.5% of their bacteria.

The research was led by Dr Gunter Boehm at the laboratories of Milupa's Dutch parent company, Numicho, in Friedrichsdorf, Germany, His findings will be presented and discussed at meeting of nutritionists at the British Medical Association in London today.

Prebiotics are so-called because they feed probiotics, the friendly bacteria. Ms Bye said: "Its been known for some time that breast-fed babies have more friendly bacteria in their guts than bottle-fed babies, but we are only now finding out why.

"Oligosaccharides are a kind of carbohydrate, but one that can't be digested by the body. They stay intact until they reach your colon where they are used as food for these friendly bacteria.

"We decided to focus on oligosaccharides because breast milk contains them in large amounts. Along with protein, oligosaccharides are the third biggest component in breast milk.

Did you know your brain needs simple carbs?

How about IV hydration solutions? Yep, they put sugar in that too.

From Austinicc.edu ;

Indications. Dextrose fluids provide calories for energy, sparing body protein and preventing ketosis, which occurs when the body burns fat. They also make it easier for potassium to move from the extracellular to the intracellular compartment. Dextrose fluids flush the kidneys with water, helping them excrete solutes, and improve liver function (glucose is stored in the liver as glycogen).

Concentrations of [D.sub.2.5]W and [D.sub.5]W are used to treat a dehydrated patient and to decrease sodium and potassium levels; they're also suitable diluents for many medications. More concentrated (hypertonic) fluids such as [D.sub.10]W are used to correct hypoglycemia. [D.sub.20]W and [D.sub.50]W with electrolytes can provide long-term nutrition as a part of total parenteral nutrition.

From ehow;

Kinds of Dextrose IV Fluids
By Amber D. Walker, eHow Contributor , last updated June 12, 2013

Kinds of Dextrose IV Fluids
Not all IV fluids are the same. There are three basic major categories, based on which ingredient is the key component: sodium, dextrose and multiple electrolytes. Within each, there are other numerous kinds of IV fluids. Choosing the right category, and then the right type within that, can be a matter of life and death. Not all dextrose IVs can be used for every situation. Some are more suited than others, depending on the problem and the patient. Have a question? Get an answer from a Medical Professional now!
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Sugar Water
Dextrose is another name for glucose, a type of sugar; dextrose IVs are sometimes referred to as “sugar water." There are some drawbacks. Prolonged use of sugar water can cause high blood sugar (hyperglycemia). Watch blood glucose levels carefully when using dextrose IVs, especially if the patient is diabetic.

Dextrose IVs contain combinations of dextrose and water, in differing concentrations. Dextrose 2.5%, or D2.5W, is a dextrose IV that contains 2.5 grams of dextrose per 100 ml of water. D2.5W is used to dilute other IV solutions or to supply the patient with water and calories.

Dextrose 5%, also called D5W, can also be used to hydrate the patient or to dilute other IVs and medications. D5W also keeps the body from using up protein and muscle mass by giving it carbohydrates and can decrease sodium and potassium levels. D5W quickly becomes hypotonic, having a lower salt concentration than the blood or other cells in the body, and hence is not used for resuscitation like some other solutions with similar chemical makeup, such as normal saline. It is used as source of free water and to prevent cell dehydration.

D10W and D20W
Dextrose 10% is a more concentrated form of dextrose IV fluid. It’s usually used to counterattack hypoglycemia. D20W can also provide more nutrition to the patient in the long term.

Along with dextrose 20%, it is used for more long-term IVs since it can provide more nutrition to the body. But dextrose IVs used for too long can result in a number of negative side effects. Any dextrose IV therapy can cause hypokalemia (a drop in potassium levels) and hyponatremia, a condition in which there is not enough sodium in the body outside of the cells. This is a very serious condition that can lead to brain damage and death.

Okay so lets take a look at a supplemental formula. Many many Mito patients are prescribed supplemental formula's. Two "common" ones are Neocate and Elecare Jr.

Lets take a look first at the nutritional label of Elecare Jr vanilla:

EleCare® Jr

Nutritionally Complete Amino Acid-Based Medical Food
EleCare Jr is a nutritionally complete amino-acid based medical food for children age 1 year and older who cannot tolerate intact or hydrolyzed protein.
EleCare Jr is for children age 1 year and older and is available in Unflavored or Vanilla
Use under medical supervision.

Vanilla Powder

EleCare Jr Vanilla Powder Institutional / 14.1-oz (400-g) Can / 6 ct

Serving Size: 100 g Powder

Amount Per Serving % DV % RDI
Nutrient Data
Volume, mL:
Protein Equivalent, g: 14.3
Fat, g: 22.7
Carbohydrate, g: 49.3
Linoleic Acid, mg: 3939
Osmolality, mOsm/kg H2O:
Calories: 469
Vitamin A, IU: 1280
Vitamin A, mcg RE: 384
Vitamin D, IU: 281
Vitamin D, mcg: 7.0
Vitamin E, IU: 9.71
Vitamin K, mcg: 60
Thiamin (Vitamin B1), mcg: 985
Riboflavin (Vitamin B2), mcg: 495
Vitamin B6, mcg: 393
Vitamin B12, mcg: 2.0
Niacin, mcg: 7878
Folic Acid (Folacin), mcg: 139
Pantothenic Acid, mcg: 1974
Biotin, mcg: 19.9
Vitamin C (Ascorbic Acid), mg: 42.5
Choline, mg: 140
Inositol, mg: 23.6
Calcium, mg: 543
Phosphorus, mg: 395
Magnesium, mg: 74
Iron, mg: 8.3
Zinc, mg: 5.4
Manganese, mcg: 601
Copper, mcg: 601
Iodine, mcg: 41.6
Selenium, mcg: 12.5
Chromium, mcg: 10.9
Molybdenum, mcg: 12.3
Sodium, mg: 212
Sodium, mEq: 9.2
Potassium, mg: 706
Potassium, mEq: 18.0
Chloride, mg: 281
Chloride, mEq: 7.9

Serving Size: 1 L (prepared at 30 Cal/fl oz)*

Amount Per Serving % DV % RDI
Nutrient Data
Volume, mL: 1000
Protein Equivalent, g: 31
Fat, g: 49.1
Carbohydrate, g: 106.7
Linoleic Acid, mg: 8520
Osmolality, mOsm/kg H2O: 590
Calories: 1014
Vitamin A, IU: 2769
Vitamin A, mcg RE: 830
Vitamin D, IU: 608
Vitamin D, mcg: 15.2
Vitamin E, IU: 21
Vitamin K, mcg: 130
Thiamin (Vitamin B1), mcg: 2130
Riboflavin (Vitamin B2), mcg: 1070
Vitamin B6, mcg: 850
Vitamin B12, mcg: 4.3
Niacin, mcg: 17040
Folic Acid (Folacin), mcg: 300
Pantothenic Acid, mcg: 4270
Biotin, mcg: 43
Vitamin C (Ascorbic Acid), mg: 92
Choline, mg: 303
Inositol, mg: 51
Calcium, mg: 1174
Phosphorus, mg: 854
Magnesium, mg: 160
Iron, mg: 18
Zinc, mg: 11.7
Manganese, mcg: 1300
Copper, mcg: 1300
Iodine, mcg: 90
Selenium, mcg: 27
Chromium, mcg: 23.5
Molybdenum, mcg: 26.5
Sodium, mg: 459
Sodium, mEq: 20.0
Potassium, mg: 1526
Potassium, mEq: 39.0
Chloride, mg: 608
Chloride, mEq: 17.0
* Nutrient values are applicable when prepared as directed.

Note- it only says "carbohydrates" and doesn't provide "sugar" like most over the counter "food" is required to- so let's look at the

Vanilla Powder

EleCare Jr Vanilla Powder Institutional / 14.1-oz (400-g) Can / 6 ct

Corn Syrup Solids (54%), High Oleic Safflower Oil (9%), Medium-Chain Triglycerides (8%), Soy Oil (7%), L-Glutamine (2%). Less than 2% of the Following: L-Asparagine, L-Leucine, DATEM, L-Lysine Acetate, L-Valine, Calcium Phosphate, L-Isoleucine, Artificial Flavor, Potassium Phosphate, L-Arginine, L-Phenylalanine, L-Tyrosine, Potassium Citrate, Sodium Citrate, L-Threonine, L-Proline, L-Serine, L-Alanine, Magnesium Chloride, Glycine, L-Histidine, L-Methionine, Ascorbic Acid, Calcium Carbonate, L-Cystine Dihydrochloride, L-Tryptophan, Magnesium Phosphate, Choline Chloride, Aspartame, m-Inositol, Acesulfame K, Ferrous Sulfate, Taurine, Ascorbyl Palmitate, Zinc Sulfate, dl-Alpha-Tocopheryl Acetate, Sucralose, L-Carnitine, Niacinamide, Salt, Calcium Pantothenate, Manganese Sulfate, Thiamine Chloride Hydrochloride, Cupric Sulfate, Vitamin A Palmitate, Riboflavin, Pyridoxine Hydrochloride, Folic Acid, Beta-Carotene, Biotin, Phylloquinone, Chromium Chloride, Potassium Iodide, Sodium Selenate, Sodium Molybdate, Vitamin D3, and Cyanocobalamin.
Phenylketonurics: Contains phenylalanine.

WOW WOW WOW did you read the FIRST INgredient?!??!?!? 54 percent CORN SYRUP SOLIDS

More sugar in that then most IV's. More sugar in that then baby formula. More sugar in that then Breast Milk-

So, I went looking for nutritional recommendations on various Mito Disese advocacy pages- I found this on the MitoAction website:

General Guidelines

4-6 small meals a day

include complex carbohydrate and protein at each meal

maintain a healthy weight

eliminate empty calories

avoid fasting (including avoiding liquids for many hours)

have a bedtime snack that includes both a complex carbohydrate and a protein

Did you catch that? It mentions COMPLEX CARBS but doesn't recommend simple carbs. It also recommends avoiding "empty calories." Aren't corn syrup solids "empty calories?" or labeled as such in our culture? What gives?

Hummmmm - since a huge part of the Mito Population either depends on supplemental formula's or supplements with both regular food and liquid nutrition, and they are up to 54 percent corn syrups(Simple carbs) this is puzzling.

Why 54 percent sugar for those dependent on supplementals for calories or digestion, but complex for general guidelines? In the general "healthy" population with no metabolic, mitochondrial or other GI interfering disease process this is very good advice, but how well does it apply to a population that often has very disabled digestive abilities? I am sure for some it is great advice, but for quite a few they are receiving very different ingredients in their supplements. Knowing your body, and why a Dr. prescribes certain types of nutrition is essential, and that includes the amount of simple carbs being recommended and why.

Now from the Franklin Institute:

Nourish - Carbohydrates Fuel Your Brain
Glucose is the form of sugar that travels in your bloodstream to fuel the mitochondrial furnaces responsible for your brain power. Glucose is the only fuel normally used by brain cells. Because neurons cannot store glucose, they depend on the bloodstream to deliver a constant supply of this precious fuel.

Okay, have you followed this? Sugar has been deemed evil. It isn't. As a matter of fact, our mitochondria need it, and sugar is the fuel for the brain. The clip above goes as far as describing Glucose(sugar)as a "Precious Fuel"

Granted, a healthy person with a healthy GI tract and a normal amount of energy can digest carbs and their body easily can convert calories to the necessary amount of simple carbs for body and brain health.

However, what happens when you don't have the energy to digest properly? Or what happens if your digestive tract is unable to process certain foods?

The GI Dr. that we loved said, "use it or lose it." He told Abby even if it hurts you must keep eating "real foods." Cook them, puree them, find the foods that hurt the least and keep eating.

When we found the depletion our major goal has been to protect Abby's brain. Her body clearly has been trying hard.

Abby when tired doesn't digest. It just passes through or just sits and ferments. I figured they prescribe supplemental formula's because they are easier to digest. I also then found that the Elecare Jr was 54 percent corn sugars. Of course then I knew already that the brain is dependent on simple carbs(aka sugar/glucose) to function. When Abby was a baby and it was an epic battle to keep her nursing, I remember the lactation consult explaining to me that the "fore milk" was higher in sugar, and that the longer Abby nursed the more fat and protein she would get.. that got me thinking, if our bodies produce sugar to begin with for babies delicate digestion, stands to reason there is a biological reason for it. Then after talking with so many Mito patients who described how terrific they felt after IV hydration and knowing it was full of sugar, I started thinking. In my family, the go to food when sick isn't soup, it is sugar. My Gram feed me liquid jello(when it was just real sugar not sugar-free) in a bottle. We crave sugar on white bread, or candy... My gram did, my Mom did, and I do. Why is it?

Because sugar is easier for our body to use. It gives us a quick pick me up.

We have found that when Abby is tuckered if we give her simple carbohydrates first, about 15-45 minutes before proteins she tends to digest much better. Just sugar and she crashes. Just complex carbs and proteins and she crashes because her body thinks it is more work then it is worth to digest it. If I give her a bit of quick "energy" in a zap of sugar, her gut seems to be more willing to make the effort to digest.

So for Abby sugar is far from evil. It has prevented her from gut shutdown. It has prevented her from major burnouts or crashes.

Is this why supplemental formula's are loaded up with sugar too?

High fiber foods and raw foods Abby avoids. Cooking,freezing, canning foods actually helps break them down, and for Abby's tired GI tract processing/cooking foods start the breakdown process for her. Last month the Food Network magazine published that canned or jared salsa actually provided more nutrition then fresh uncooked. For some foods even for healthy people,our bodies are more able to absorb nutrition when some of the processing is done before it hits our digestive tract.

Nutrition is incredibly complex. Each of us will have very individual needs. Some with health issues thrive on a grain-free diet. Some do best with a sugar-free diet. Some need a high protein diet. There are some patients who need very very individualized diets due to inabilities to process various enzymes.

But let us not demonize "sugar." When used appropriately, it has allowed Abby to continue eating and digesting normally without any medical intervention. Surely she isn't the only one,(54 percent corn syrup solids in one of the most popular prescribed supplemental formulas) and her brain and gut thank us daily for the sugar.

Our brain MUST have glucose to function.. if the body is too tired to convert what we eat into those simple carbs, what will happen?

Sugar is not evil. At least not for Abby. Once we integrated sugar at the right times for Abby, her nutritional balance improved remarkably. With sugar, she can digest efficiently with more ease.

Always talk with a Dr. before making diet changes. This is just our experience with Abby and what allows her to avoid medical interventions.

In my house, in moderation, sugar is essential. It is in medical foods, IV's, formula's, and breast milk. Not a "bad" food. Just a food you need to understand when and how it can serve a positive purpose.


Mary Berger said...

I just found this blog page and feel your very informative and pose really good questions and will be promoting it on my websites...as I too am an adult who just turned 33 but since I have been a adolescent have had numerous diseases mostly neurological and gastrointestinal. I also just looked into Mito myself some as I believe I have a form of it and now I just wait to see a qualified physician..and I know having a diagnosis will not make things really better but it will allow me to be able to tell certain physicians that all this is NOT JUST IN MY HEAD.

Diane said...

So glad you found me! Having a diagnosis is better. It will help you find Drs who are able to help you. I find it alarming how many Drs these day blame the patient instead of help the patient. Time is money is the trend. It makes me more grateful for the few great Drs we have found. I find it alarming that so many young women are ignored, treated badly, passed along or blamed for their health issues. The sooner you know the enemy, the sooner you can find the best and most appropriate care. MitoAction has a list of Specialists that are familiar with Mito and they are great about doing their best to help out the patients. More then 2 body systems involved and unexplained? Think Mito. Big Hugs!

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