6. Nutrition



  • Medium Chain Triglycerides (MCT) Oil
  • Supplemental Feedings — Commercial
  • Supplemental Feedings — Home-made
  • Tube Feeding
    • Why Use an N-G Tube? (11/97)
    • Day or Night Feeding?
    • Are Enzymes Needed?
  • Complete Elemental Formulas
  • Vitamin Supplements
  • Strong Bones and Milk — Pro and Con
  • Are Soy Products Dangerous? (9/97)

Commercial enzyme supplements (e.g., Creon, Pancrease, Cotazym) allow the use of regular diets. – Oral supplements (home-made and commercial) are now used by some – Medium Chain Triglycerides (MCT) Oil is an easy to digest fat which is added to food – In extreme cases, naso-gastric feeding (tube in the nose to the stomach), or a gastrostomy (tube to the stomach) or jeujostomy (tube to the jejunum), or even IV supplementation can be used to boost caloric intake. – A healthy diet is important in preventing the need for the supplementation. – increased calories needed by PWCF – CAUTION: nutritional supplements can increase the work load of digestive organs therefore always consult a doctor before using nutritional supple

Medium Chain Triglycerides (MCT) Oil

Due to their greater solubility in water, MCTs can be absorbed in the presence of minimal pancreatic enzymes and in the absence of bile salts. The product is alive and well and is made by Mead Johnson (makers of Sustacal, Boost, etc.). Medium Chain Triglycerides are not metabolized by the lymphatic system, they are metabolized through the blood stream in the liver (portal system). They do not form triglycerides. MCT oil is a usable supplement for fat malabsorption of any etiology. It is expensive and should be used upon the advice of a physician or dietitian by PWCF.

I too, read about the MCT oil and decided it was worth a try. I purchased some at our local health food store for $12.95/16 oz. My child (16 yrs. old) has already gone through one bottle (1-2 tbs. per day) and recorded his first weight gain (3 lbs.) in nearly one year! (He is 5′ 10″ at last measuring – and has been that for a year too.) Anyway, we’re not sure if this weight gain is entirely due to the oil or not – but he requested we buy a second bottle. I do seem to notice that his muscles don’t appear as thin – but then he has been hefting my eensy 3.3 lb. princess dumbbells : ) We’ll see what happens after using the weight/bench press Santa brought him.

(My child) takes the MCT Oil straight – tastes like orange medicine. He tried putting it in juice and on ice-cream. Since it’s only 1-2 tbs. he just gulps it now – but at a time when he will be eating something that requires a Pancrease cap. We noted a big weight gain (7.5 lbs.) in about 5-6 weeks – it took him nearly 32 oz. of MCT Oil to achieve this (he’s a high metabolizer-type!)

Supplemental Feedings — Commercial

Super Weight Gain made by Naturade Products, Inc., Paramount, CA 90723 is a “chocolate shake” drink I bought at a local health food store. It is a high-cal, hi protein, no fat drink. It costs $12 a can, which lasts about 5 days. One serving, (4 cups), mixed with non-fat milk has 1200 calories, 70 grams of protein, 214 grams of carbohydrates and less than one gram of fat!!! It tastes pretty nasty, but the picture of a guy flexing his pecs on the container spurs (my child) on to drinking it.

Scandishakes work, but they’re a pain because you have to mix them. Check out PulmoCare or Ensure Plus. They both come in 8 oz. cans (pre-mixed). Some prefer PulmoCare Vanilla and Peanut Butter Scandibar (Scandibar is also from Scandipharm). On 3/25/95 the Company displayed a new packet form of the mix. Already measured and ready to mix, just add to milk. There also is a drink mix called Calories-Plus that can even be mixed in water.

(My child) really likes drinking Ensure, Ensure Plus and Pediasure but the fat just goes through him. So out of frustration I called Mead Johnson, thinking that if anyone made a dietary supplement they would, (they were also easier to get in touch with than our clinic dietitian). The person I spoke to at Mead Johnson told me about two products: one called Lipisorb – and one called Portagen. They are made with MCT Oil (Medium Chain Triglyceride) which is something that our clinic has always pushed because it is absorbed so much better that other fats (vegetable or corn oil). The fat content of these products are made up of 75% – 85% MCT Oil. Well, further in my search I also found a product called Nutren made by the Nestle & Baxter Company that also is made with MCT Oil.

I did get in touch with our clinic dietitian and ask her about these products and she recommended them highly. My next question was why she had not suggested them in years past when I was complaining about the fat not being absorbed – her answer – I don’t know. My head almost exploded at that point. I have found that all of the above mentioned products can be bought over the counter. You may have to have your pharmacist special order these items because they are not really big sellers like Ensure. So far I have found that Nutren costs the least – approx $1.00 a can. My (child) has tried all of the products and likes them all the same.

Boost – by Mead Johnson. 8oz can cost approx $1.00/can. 240kcal, 4g Fat, 40g Carbs, 10g Protein. Our Wal-Mart and Walgreens carries it. Taste better than Ensure, not as thick. Some have questioned whether this is a well balanced supplement; check with your nutritionist or doctor.

Nutra-Shake – by Nutra Balance Products, P.O. Box 39077, Indianapolis, IN 46239, (317) 353-2268. 4oz carton (looks like a tiny milk carton). A package of 6 is under $4.00. 200kcal, 6g Fat, 31g Carbs, 6g Protein. Krogers carries this in the dairy section (I found it next to the frozen juices). Comes frozen and can be thawed in about 30 minutes out on counter or a few seconds in the microwave. It is made with whole milk. Nutra Shake is a blue and white carton, make sure you don’t get the red and white carton called Renal Shake (it is for renal patients).

Wal-Mart also sells a “generic” equivalent to Ensure and Ensure Plus called Equate and Equate Plus. The cost is about $26.00 a case for the Equate Plus as compared to $36.00 a case for the Ensure Plus.

We also had our pharmacy order a powdered mix product by Mead Johnson that contains MCT oil – it’s called Lipisorb. It’s vanilla flavored and you mix it with water to make a “shake”. (My child) said it tastes “nasty,” but he stirs some of the powder into instant pudding mix, shakes it up and eats the pudding. With tax it cost about $29. It has 240 cal., 8.4 g. protein, and 11.5 g fat when mixed according to directions.

Supplemental Feedings — Home-made

(also see Appendix E, Recipes)

MCT Oil is the only nutrition supplement I use (excluding vitamins). It is an easily digestible fat, which makes it easy for us PWCF to get it into our system. I usually add it to other foods. My favorite is a quick and easy “milkshake” which goes like this:

Take 1 package (small) of your favorite instant pudding mix. Add 1 cup of instant nonfat dry milk. Add 4 cups of milk (and some ice cubes if you have them). Add 1-2 tablespoons of MCT Oil. Blend it for a few minutes, and then chug.

I drink these all the time, but I’ve been trying to cut down since I have gained 50 pounds in the span of about two years, and now have something approximating a small spare tire around my tummy. My fiancee calls it my “insurance policy”, in case things aren’t so good in the future. But I have hints of a double chin, and I don’t want that to grow too large!

I won’t guarantee that MCT Oil is solely responsible. I actually think it was more my living a regular life, eating lots and eating healthily, and most of all getting almost 10 hours of sleep a night. That plus I have moderate-light CF. But I sure know that when my CF was worse (in college) the MCT Oil milkshakes probably helped keep me out of the hospital.

Tube Feeding

Why Use an N-G Tube? (11/97)

There have been numerous studies done which have demonstrated that the amount of resting energy expended by those with CF exceeds that of those without lung disease. The reasoning follows that even ‘at rest’ increased energy must be used to breath with damaged or infected lungs. This increase in energy comes from the body’s store of nutrients. When failure to thrive becomes an issue usually pancreatic enzymes levels are checked and may be increased if appropriate. A high fat diet is recommended, along with lots of smaller meals throughout the day rather than three big ones, and scads of high caloric snacks. When all else fails, supplemental feeding is ordered. This is usually night feeding with a high protein, high caloric formula (there are many so if the first one presecribed doesn’t do the trick try another). The night feeds provide ‘extra’ nutrients for the body. Also, the formulas are specific to a known number of health problems and formulated to be easy to digest even for those with pancreatic insufficiency.

Day or Night Feeding?

I think a danger of tube feeding young children during the day is it reduces or eliminates the need to and desire to eat in a regular pattern. I would guess (your child) probably feels no desire to eat, and with a full tummy of formula during the day, he is likely just not hungry. I think that tube feeding and eating should be kept entirely separate whenever possible. For P/CWCF, tube feeding is usually considered supplemental, at least ideally, and should be used as such. Perhaps, if you were to run his tube feeds overnight, and gradually encourage him to eat meals throughout the day, the trend would take hold. Maybe if you were to expect him to sit at the table and serve him foods he likes with the family (knowing you can fall back on the nighttime feeds for caloric nutrition), then eventually you could transition him back into more normal eating patterns.

Also, I can’t imagine having to mess with tube feeding 6 times a day. Nighttime feeds are wonderful, and just fit into daily routine with almost no effect! If you decide to switch to nighttime supplemental feeding with an elemental formula, it’d likely also make upcoming schooling and social adventures much easier and more practical for both you and him. From what I understand from your post, the main reason he was started in daytime feeds was because of the enzyme issues with night feeds. Yep, if you were to try to run Pediasure through a tube at night, it would be a greasy disaster, however, I’m wondering if his nutritionist is aware of the pre-digested formulas used by many P/CWCF. If his tummy isn’t full of formula during the day, hopefully he will start feeling the need to eat during the day, if for no other reason at first than the fact that everyone else around him is. I hope these ideas help — there not founded on much more than intuitive knowledge, but I am happy to talk more about my personal experiences, and would also be happy to send you the nutritional labels from my Peptamen and Vital.

Are Enzymes Needed?

Peptamen is a totally elemental, pre-digested formula, so in theory no supplemental enzymes are necessary. Most PWCF I know use either Peptamen, Peradive (SP?), or Vital as formula, as these are all elemental. I take enzymes before bed, and again if I happen to wake up, but other than that don’t worry too much about it. Pediasure, Ensure, Isocal, Pulmocare etc., all have fat in them, and are not designed for CF digestive issues. I occasionally bolus a can of Ensure or a carnation, but have to take enzymes like anything else with fat. I am surprised and curious about why he is not on a formula that is more kind to a CF tummy. And Yikes — 6 feedings/day!!!

Complete Elemental Formulas

The fat source is primarily Medium-Chain Triglycerides. MCT is simply a different form of fat, that is absorbable by people with CF pancreatic disease. So by using Peptamen, Vital, Peradive (sp?) etc… you are getting ample amounts of fat, but in a digestible form. Even with enzymes, I imagine that a certain amount of milk based fats like those in Ensure etc. are malabsorbed. I’m not sure what flavors Peptamen comes in (I’ve used Strawberry and Vanilla), but its drinkable and can be supplied by a homecare company.

I’ve got a can of Peptamen in front of me: 70%fat is from MCT oil — the “friendly” (digestible) fat for P/CWCF. So, 6cans/24hrs. gives 100% USRDA of basically everything. So, if you were to give him 6 cans overnight (10 hrs at rate 150 cc/hr) he would get 100% USRDA (for an adult, so you could probably go with 5 cans) even if he didn’t eat anything else all day. Here’s what the label says: “Peptamen Complete Elemental Diet is a flavored, ready-to-use peptide-based diet for tube or oral use. Peptamen is specifically formulated for easy digestion and absorption by patients with impaired gastrointestinal function. Approximately 70% of the fat source consists of medium-chain triglycerides (MCT). Typical osmolality is 380MOsm/kg water. Peptamen elemental diet contains 3.0 g/L of glutamine and 3.8 g/L of glutamic acid. Volume to meet 100% USRDA is 1500 ml (6cans).”

Vital is similar to this, except it is a powder so you could adjust the volume dilutions as you like. The phone number for Clintec (who makes Peptamen and Peradive) is 1 800-422-ASK2.

Vitamin Supplements

ADEKs. An ADEK is a vitamin pill with vitamins A, D, E, and K (the fat soluble vitamins, which are difficult for the CF patient to absorb) made by Scandipharm formulated in a water soluble form which bypasses the fat absorption process.

Strong Bones and Milk — Pro and Con

Pro: With my two gals, 3 yrs, we don’t avoid milk for two reasons. 1. CALORIES!!! (half & half, extra rich milk) 2. CALCIUM!! CFers (especially girls) have a high risk for osteoporosis and it is critical to develop as much bone density as possible from early on. In a study conducted at Stanford University, it was determined that 18 year old CFers had the same osteoporosis affects as the average 70 year old. Very serious stuff when you consider how easy it would be to crack a rib while coughing.

Con: I avoid it — Mom noticed extra mucus production with milk when I was just a toddler, and haven’t had any ever since. She was also looking for this because my sister has a milk allergy, and becomes really junky (all ends!) with it. But, I take calcium citrate and calcium phosphate supplements. Before I started the supplements I had several broken ribs and a kidney stone (from too little calcium and not enough enzymes). However, I’ve had no further problems now that I’m on supplements.

Are Soy Products Dangerous? (9/97)

by Charlotte Gerson

A considerable percentage of the world’s population is undernourished or outright starving. For many years, proteins, preferably from animal sources, have been considered to be the best and most acceptable source of nutrients. However, we also know that it takes some 16 pounds of grains, fed to cows, to produce one pound of meat. In his book Diet for a New America, author John Robbins points out that we could easily feed the whole world if everyone were to become vegetarian. This is an unlikely scenario in the affluent Western world. So, in order to try to feed the hungry, we are always looking for new sources of “good” protein.

Much attention has been focused on the soy bean, a widely grown legume that fulfills both the requirement for a high protein food and a widely publicized health advantage: it is low in fat and devoid of cholesterol! This should make it an ideal food, but is it safe?

An extensive discussion on the subject written by Sally W. Fallon, M.A., and Mary G. Enig, Ph.D. appeared in the May 1966 edition of Newlife magazine. Since we have often been asked by a number of our Gerson Healing Newsletter readers why Dr. Gerson prohibited soy products, we should like to report on this thoroughly researched material.

The authors trace the origin of the soy bean to the Orient, where it was apparently used during the Chou Dynasty (1134-246 BCE) as a crop rotation material, for its capacity of fixing nitrogen in the soil. Soy products did not serve as food until fermentation techniques were developed. When a method was developed to make soy into a curd by precipitating it with calcium sulfate or magnesium sulfate, the use of soy products started to spread. Fermented soy products, such as miso and tamari sauce, are apparently less harmful than the precipitated ones, such as tofu or bean curd. But tofu accounts for about 90% of the processed soybeans in Asia today, say the authors. It seems that bean curds as a source of protein did not come into use until about 700 A.D.

Fallon and Enig state that the “Chinese did not eat the soybean as they did other legumes, such as lentils, because the soybean contains large quantities of a number of harmful substances.” Did the Chinese know this? Perhaps they did, possibly they observed that disease symptoms appeared after eating tofu or other cooked soy products. Among the harmful substances, the authors name “potent enzyme inhibitors, which block the action of trypsin and other enzymes needed for protein digestion.” Apparently, cooking does not deactivate these enzyme inhibitors, and they can produce serious digestive problems such as reduced protein digestion, chronic deficiencies in amino acid uptake, enlargement of the pancreas (in animals) and cancer. Soy products also contain another chemical, hemaglutinin which promotes clumping of red blood cells. These clumped red cells are unable to fully take up oxygen and carry it in the blood stream to all tissues. Hemaglutinin has also been observed to act as a growth depressant. Fermentation deactivates these enzyme inhibitors, or at least reduces the amounts present.

Soybeans are also high in phytic acids which is present in the bran of hulls of all seeds. This material blocks the uptake of essential minerals in the intestinal tract, including such important ones as calcium, magnesium, iron and especially zinc. Again, only the process of fermentation will significantly reduce the phytate content of soy products. Soybeans have a higher content of phytates than any other legumes, making them of questionable safety and nutritional value.

Bearing the above in mind, the authors feel that soy products consumed with meat have a reduced mineral blocking effect; however they warn particularly that vegetarians who eat tofu with the idea that it may act as a protein substitute, risk severe mineral deficiencies. They also feel that most people appreciate the problems of calcium, magnesium and iron deficiencies, but that zinc deficiency produces some especially serious problems: zinc is needed for optimal development and function of the brain and nervous system, aside from its role in the immune system.

The Profit Motive.

The average American has not adopted soy products (tofu, tempeh, miso) as a principal food. Soy sauce may be the exception to this rule, even though soy oil is also quite widely used. About 140 billion pounds of soy beans per year are grown in the US since the end of W.W.II, and the industry is looking for new markets. At this time, the major use for the bean is animal feed, and soy oil is used for hydrogenated fats, margarine and shortening. New soy products are being marketed to the growing “health product” consumers: soy milk, soy baby formula, soy yogurt, soy ice cream, soy cheese, soy flour for baking, and soy protein as a meat substitute for the vegetarians.

During the production of soy milk, in order to remove as much of the trypsin inhibitor as possible, the pur‚ed beans are soaked in an alkaline solution, then heated to about 115§ C. in a pressure cooker. Unfortunately, even though most (but not all) of the antinutrients are destroyed, this processing also denatures the proteins, so the remaining soy protein is very difficult to digest. The phytate content remains in soy milk to block the uptake of essential minerals. Worse, the alkaline soaking solution produces a carcinogen, lysinealine, and reduces the cystine (an amino acid) content in the soybean. Without cystine, the protein complex is virtually useless unless the diet is fortified with meat, eggs or dairy products, an unlikely situation for vegetarians.

These problems arising from soy production are not mentioned on labels, and the public is not aware of them.”Soy based infant formulas, along with trypsin inhibitors, contain a high phytate level. Use of soy formula has caused zinc deficiency in infants. Aluminum content of soy formula is ten times greater than milk-based formula and 100 times greater than unprocessed milk.” While soy milk is tried on infants with milk allergies, allergy to soy products is almost as common. The lack of cholesterol in soy infant formula could inhibit brain development since cholesterol is essential for the brain and nervous system. Chemical additives to soy based foods further add to the problems.

Soy products are widely distributed in third world countries, presumably to overcome a protein deficiency in the diets of starving people. They are also used extensively in school lunch programs, commercial baked goods, diet beverages and fast food products. New publicity promotes soy products for their “cancer preventing properties”. While traditionally fermented soy products may contain a cancer preventing chemical, these are contained in an altered state in non-fermented soy products and have no anti-carcinogenic effect. On the contrary, it has been suggested that the rapid increase of liver and pancreatic cancer in Africa is due to the increased use of soy products.”…to remove oil from the soy bean, particularly high pressures and temperatures are required, since this is an unusually difficult process. Furthermore, hexane or other solvents are always used to extract oil from soy beans, and traces remain in the commercial product. But the high temperatures destroy some of the possible beneficial fatty acid fractions of the soy oil: the Omega-3’s, which are especially susceptible to rancidity when subjected to high pressures and temperatures.”

“Claims that the fermented soy products can be relied on as a source of B12 have not been supported by scientific research.” Nor do they supply the essential fat soluble vitamins D and A, needed for the absorption of all minerals. Unfortunately, soy products increase the requirements for vitamin B12 and D.

The authors summarize all the above, and possible arguments that soy products have been used for many centuries in the Orient, as follows: “traditional fermented soy products have a long history of use that is generally beneficial when combined with other elements of the Oriental diet including rice, sea foods, fish broth and fermented vegetables. Precipitated (Western) soy products can cause serious problems, especially when they form the major source of protein in the diet.” ——————————————————————–


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