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Lactose Intolerance

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from Dale, Mom to Katy, age 14, CVID

Sue - yes, lactose intolerance can " just start " . I think Katy's was probably

kicked in by a giardia infection. But she went from being an athelete who

drank 4-6 glasses of milk a day - to not being able to tolerate lactose in

any form. A one-week test may or may not be sufficient. We saw a lot of

improvement after being off the major lactose products for one month, but

didn't find relief until we went totally off (that means everything

containing lactose - breads, cereals, cookies, lots of soups, salad

dressings, candies, etc.). I'm not trying to scare you. I remember when

they first told Katy to go off milk for one month - we felt we couldn't do

it. But at the end of the first month, we were willing to continue because

she felt so much better.

What I've learned so far: Somebody correct me if this is wrong!

Lactose is apparently produced in the lining of the intestines. With CVID,

many people have a chronic irritation in the lining of the intestines at all

times - preventing the production of lactose. Katy also has trouble with

fructose - but the enzyme is present -- it's just that with the lining always

irritated, the fructase doesn't work well.

Most people who are lactose intolerant can use a milk product called Lactaid

100 Milk that tastes just fine. And some can use the Lactaid 100 enzyme

supplement so that they can continue to enjoy lactose loaded stuff. For,

Katy, it still has too much lactose for her system. So we use substitutes.

Lactose intolerance does a lot of things in the system. It often causes

cramping, bloating, gassiness, vomiting and diarrhea which you would expect.

But it also causes fatigue and headaches.

Some tricks for those who are totally lactose intolerance:

READ EVERY LABEL EVERY TIME - products sometimes change their

ingredients without warning you.

Sour dough bread is usually safe

Some other breads are okay but you have to work to find them

Plain bagels

Keep looking -- there are hamburger and hot dog buns without lactose

Mocha Mix ice cream - in a wide variety of flavors

Rice Dream ice cream

Rice Dream Milk in vanila, or chocolate, - be sure and get enriched

Dark Chocolate

Read the label carefully to find semi-sweet chocolate chips without milk --

they are

usually the cheaper (store brand) ones.

Jiffy corn bread and muffin mixes are usually okay - just make with Rice milk

Pancake mixes are usually okay - just make with Rice milk

Nucoa margarine has no milk and cooks well

There are rice cheeses and soy cheeses that are passable

Hersheys Syrup is milk free - but their dark chocolate bar is NOT

French fries at Burger King are safe - but Mcs and many others dip

their

fries in milk before frying!

Soft Batch Chocolate chip cookies are safe - no lactose

Hagaan Das - chocolate sorbets are safe (read the label carefully)

Things you wouldn't expect to have milk that do

Top Ramen Noodles

All cream soups and most others

some tomato sauces & pizza sauces

most salad dressings

croutons

Spaghetti sauces

All Chef-boy-R-dee products

Most pizza places are willing to make a pizza without cheese!

Hopefully, your little ones will just have a milk lactose problem which can

easily be controlled with some enzyme tablets. But, first the diagnosis!

Stop as much of the milk products as you can so that you can get a clear

picture.

The other thing I learned is to not try substitutes too soon. In other

words, if he has to go off milk, let him go off milk for several weeks before

introducing Rice milk. Katy rejected every substitute until she had

forgotten what the real thing tastes like!

Now, she's pretty comfortable with her substitutes.

Also, if you decide it is milk. You'll need to talk with your doctor about

replacing calcium. We use Tums because it is easiest on the stomach.

But to answer your question - yes, you can suddenly develop lactose

intolerance. In fact, for your information, all of us are moving toward

lactose intolerance - lactose production decreases with age - so any of us

could develop it at any time! Because of that, there are a lot of

substitute products available.

Hope this helps and doesn't overwhelm. And hopefully, your little one will

be feeling better soon.

Katy has stabilized quite a bit by removing all lactose and most fructose

from her diet. She also has trouble digesting fat. But now that she's

stable and not having diarrhea constantly - it's taken us 2 years to

stabilize, we want to try to introduce those low level lactoses and see if

she can tolerate them. We also want to re-try the Lactaid 100 supplements.

Maybe, maybe, maybe....

In His service,

Dale

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