Ice Cream Solution:

Here is a solution for families who want to stop for an ice cream treat at a fast food restaurant. Some families have found these places very accommodating when they ask for a non-dairy creamer cone for their child with MSUD. Dairy Queen and others will often use their pressurized whipped topping to fill a cone. They may even put sprinkles on it. Some places may use real whipped cream which is higher in leucine. Food Values of Portions Commonly Used gives these values:

Pressurized whipped cream:
1 T. = 9 mg leucine or 0.1 gm protein, cup = 72 mg leucine or 0.8 gm protein

Non-dairy whipped topping, pressurized:
1 T. = 4 mg leucine or 0 gm protein, cup = 32 mg leucine or 0.3 gm protein

Add 30 mg leucine for a regular cone. Waffle cones have 90 mg leucine, and sugar cones are the highest with 1 gm leucine.

NEW - Uncle Henry's Low Protein Pretzels:

At Symposium '98, the children loved Uncle Henry's low protein pretzels. These great, special Pennsylvania Dutch pretzels are stone-hearth baked, hand twisted, regular-sized pretzels. Mrs. Glen (Brenda) Wenger, the mother of two girls with MSUD, developed the recipe and worked long and hard to help the company start making the low protein pretzels.

Since all the equipment has to be thoroughly cleaned to run a batch of these pretzels, they are made only when orders total 100 lbs. You may have to wait a week or two for your order to be filled, but then they are always shipped fresh. The demand has increased considerably since the pretzels were mentioned in the PKU News and many persons with PKU are ordering them by the case. So they are being made more frequently. Leucine is 12 mg/oz. and protein is .13 g/oz. Each pretzel weighs about 18 gm or a little more than , oz.

Delicious regular pretzels are also available. If you order enough pretzels to fill a case, you can reduce the shipping costs. It pays to fill out your order with regular pretzels if you just want to order a few low protein pretzels to try. Expect some breakage in shipment. The low protein pretzels break easily because they do not contain gluten.

The cost of low protein pretzels (prices subject to change):

8 oz. bag is $1.85 9 (8 oz.) bags/case is $16.65.
11 oz. bag is $2.20 6 (11 oz.) bags/case is $13.20.
2 lb. bag is $6.20 2 (2 lb.) bags/case is $12.40.

Shipping costs $5.00 to $6.25 depending on the order and destination. If order is only 1 or 2 bags, shipping cost is $7.50. For orders outside the continental U. S., call the office number below. Order forms available: Uncle Henry's Pretzel Bakery, P.O. Box 219, Bowmansville, PA 17507

Phone: 717-445-4690 Fax: 717-445-8334
E-mail: This email address is being protected from spambots. You need JavaScript enabled to view it.
Web site:

Hints From Mothers:

Brenda Wenger's girls love the low protein pretzels dipped in salsa. Some of the children like them stewed in water or in a non-dairy creamer. Makes a good after-school snack.

Ruth Leid wrote of several products she uses and really likes for her son with MSUD. "I'm glad you found that Rice Dream. We use the vanilla-flavored and put a small amount of cream or coffee creamer in it - then it's as white as our milk." She wonders if others know that Lipton Recipe Secrets Onion Soup mix makes a good flavor when added to other foods. The Major Chicken Style Soup Base is another almost free protein source of flavoring. Her son calls Tomato Bisque soup mixed with heavy cream or coffee-creamer his "best soup."

Elsie Newswanger likes the oatburger recipe that was printed in the Spring 1995 issue of the Newsletter. She made the oatburger into meat balls, browned them in butter, and then made gravy with the drippings. The recipe also made good Sloppy Joes. Elsie loves to cook, but her son with MSUD doesn't readily like new things, so the rest of the family enjoys them. Her son's favorite meal is potato, made any way, lots of low protein noodles, and a vegetable. His favorite vegetables are corn and peas, very high protein vegetables. He knows he can have only one teaspoon, so he scatters them over everything on his plate to make it look like more! Elsie uses the low protein noodle recipe in the Spring/Summer 1996 issue of the Newsletter. Using a cheap source of wheat starch available in Pennsylvania, many of the families make their own noodles cutting the cost considerably. Elsie uses chopped low protein macaroni in place of eggs to make "egg salad" for her son's school sandwiches.

International Food Bank:

National Food is a nonprofit food bank serving persons with inherited metabolic diseases in Canada. It provides a variety of formulas and low protein foods from many suppliers in the U.S. and Europe. The products have been approved by dietitians and doctors and are distributed directly to hospitals and clinics, which serve as distribution agents for families.

As a result of many requests, National Food has set up the International Food Bank on the Internet as a distribution center for special formulas and foods. Products include those from Mead Johnson, SHS (Scientific Hospital Supply), Ross Products and Applied Nutrition (formerly FoodTek). For those who cannot locate some of the special foods in their country, check out their Web site: If you don't find what you are looking for, write to the Food Bank and they may be able to help. They welcome suggestions and comments. E-mail: This email address is being protected from spambots. You need JavaScript enabled to view it.


The MSUD Family Support Group is currently funding several research projects and we are proactively looking for researchers interested in developing new treatments or finding a cure for MSUD. Significant funding is necessary if we are to accomplish this goal.
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