I thought I read somewhere on here milk was not good for someone with HD. Does anyone have any information on this? He really doesnt care for milk anyway, but he likes ice cream and other milk products. Right now I am just learning, so if anyone has information, please let me know.

Paula

There really isn't a credible recommendation against milk. Years ago when HD research was in its infancy and no one knew about CAG repeats, scientists were trying to figure out why there was such a vast difference in age of onset. Families were given long questionnaires to fill out about their loved one's health habits. People who drank milk tended to have earlier onset.

Was that a real finding? No reason to think so. The gold standard for statistical significance is that there has to be a less than one in twenty chance that your findings aren't a statistical coincidence but 'real.' Okay, let's say I gave everyone here who has HD a questionnaire and also asked them age of onset. Let's say I ask them forty questions like, "What is your favorite color" and "How many letters are in your first name," things that are absolutely irrelevent to age of onset. Two of them out of the 40 questions would be statistically significant but still mean nothing.

Marsha,

Thank you for this information. I will put the question about milk to rest, unless other studies indicate something else.

Paula

Paula
When our family first started symptoms, we were told that the only reason for the milk problem, was because it caused mucous, and strangulation. otherwise it was ok.

Hi Paula

The only "warnings" on milk I give people is for the later stages of HD when someone might be having problems aspirating food or liquid. My daughter Kelly LOVED milk and we went through gallons of it a week. The first time she got aspirated pneumonia I was advised to stop giving her milk products due to the high bacterial level in milk. If any is aspirated into the lungs, the chances for aspirated pneumonia are very high!

I had to substitute powdered milk in things that Kelly loved, like shakes etc., but it's not as tasty as whole milk!

I understand now there is a whole milk that isn't pasteurized therefore has less bacteria? I don't know the details LOL but can find out from my niece if you're interested [or maybe someone else knows what I'm talking about]. She will only give her 1.5 year old this type of whole milk.

Love
Jean


Jean E. Miller
HD Patient Outreach
HDSA HD CoE at USF~Tampa, FL.
Email: jemiller@tampabay.rr.com
HD Links: [get-me.to]

Hi,
I lived on a dairy run for 10 years.
The point to pasteurization is to remove the bacteria from the milk without boiling it which would remove the nutrients. the milk is then packaged in sterile containers. By drinking unpasterized milk, you are setting yourself up for all the nasty diseaases like tuberculoisis. In Ontario it is illegal to drink un pasteuirized milk. The only way you get it is if your neighbours have a dairy barn, or straight from the cow. As a doctor's daughter, my children were not allowed to drink unpasteruized milk, pasteurization of the milk supply was a great step forward in public health.
There is a lunatic fringe of farmers who are informing ont. parliament that pasteurization should only be one choice, and a small group of exotic products made with unpasterized milk which are thus illegal, but some of the dairy people want to make them anyway.

Dusty

Marsha - ?

Cows milk is one food suspected of hastening HD onset. Cow's milk is not only very low in EPA, it robs the body of EPA. EPA is the essential fat that treats HD.

The bacteria in the one of the cow's four stomachs destroys EPA. Horses have one stomach. Mare's milk fat has a whopping 38% EPA. Fermented mare's milk (koumiss) powered the exploits od Gengis Khan.

All milk contains opiates that may addict some adults. This is the 'Failure to Wean' syndrome that usually results in affected bovines being shot. For humans so affected you will noticed their defects of logic and their addictive behavior if you suggest they give up cow's milk.

The immune modulating factors in milk are disease factors. I suspect the opiates and the immune factors in animal milk could accelerate HD in a fundamental way. Why take a chance when equally delicious alternatives to cow's are just as available?--Jerry 14Jan2001

Also:

For my parting shots ... avoid milk.(ref) I know it is only one study. It was done by exceptionally well qualified researchers. For now the best evidence is that milk accelerates HD onset. Maybe it is the saturated fats or the casein proteins used to make furniture glue. No one knows and another study is unlikely. The effect of calpain on cell damage is worsened by casein, found in cow's milk, and lessened by soy, found in soy milk. Don't eat too much. Gaining too much weight will accelerate HD. HD mice on a slightly calorie restricted diet do much beter.(ref)

It is my hope that someday all IT15s will have the benefits of a good diet.

Source: Jerry Lampson HDL 22-Feb-2002


Will

WILL<

I am wondering, what about other products made with milk. How about cheese? Yogurt?

Paula

Will, I just don't find Jerry's evidence persuasive.

Here's the study abstract. It was done in 1987 and published the Journal of Neurological Sciences

Fifty-one families of patients affected with Huntington's chorea were interviewed with respect to age at onset, symptoms at onset and course of the disease. The interview further comprised questions pertinent to line of transmission, socio-economic status, housing, previous illnesses and pregnancy and stillbirth. Since the study was set up as a fishing expedition detailed quantitative information was gathered on many life-style factors including eating, drinking and smoking habits. In adult age onset cases earlier age at onset correlated with lower rate of progression. Line of transmission was of no influence on age at onset in cases with onset above 20 years. No statistically significant relationship was found between any factor studied and age at onset, except for the intake of milk. Higher previous milk intake was associated with earlier ages at onset. This finding is critically discussed. No difference was found between the respective ages at onset of conduct disorders and affective disorders. This suggests that they are both associated with the Huntington gene.

When you go on a "fishing expedition" and correlate a number of variables with what you are studying, 5 percent of those variables will be statistically significant and completely meaningless.

Thanks, Marsha. I've never been a milk drinker, so it's a moot point with me. I did add Soy Milk to my daily supplements just because it's good stuff. I take it after my morning run with a couple scoops of Ovaltine as a recovery drink.

Paula - if there's no proven danger with cow's milk, then other dairy products would be OK. Remember I'm not a milk expert. Chocolate and are my specialties.

WB

I only drink milk a couple times a month, because i think it makes my symptoms much worse, agitation and insomnia, but i enjoy a glass now and then. The excess calcium does me in, same as i cant take calcium supplements. Calcium is bad for hd, or so ive heard, maybe? lol oh well



Edited 2 time(s). Last edit at 01/30/2007 11:32PM by Barb.

ooops



Edited 1 time(s). Last edit at 01/30/2007 11:33PM by Barb.

[www.notmilk.com]

For anyone interested in reading some of the negative theories about cow?s milk, check out this site. I did a search for Huntington?s disease at the site and did not get any results. There was a study of a neurological disorder that improved when milk was taken off the diet.

The milk of cows is not the same as human milk, and I have to wonder about it in my own diet. I don?t seem to handle it well. But then, I am not a cow (and anyone who calls me one is in big trouble!!!) I, like Will, enjoy a replacement for milk. I like rice milk. Maggie

I think the milk probably has minimal effect on HD on and minimal effect on people in general in a negative way. It has been studied up one side and down the other. Dusty is completely right about pasteurization. Considering the breadth of milk consumption world wide it is really hard to make a claim it is somehow toxic. In the US it is one of the few foods we use daily for calcium. Considering a pHD will take some, to many, falls in the future I would consider milk to be pHD friendly. Also vitamin A and D are supplemented through milk. While sunlight will provide vitamin D a pHD can be more house bound than even the average person. Also vitamin D is suspected in helping alleviate SADD. Depression can be an HD problem as well so helping to alleviate SADD might not be a bad idea. Whole milk can provide additional calories when additional calories are required... skim milk if a calorie restricted diet is called for or if fat in milk is a concern. I wouldn't worry about milk at all... there is just no evidence to that says to steer clear of it for HD. If is disagrees with you like it does Maggie or other lactose intolerant folks there are some alternatives which are pretty good. Fortunately I have never had to test rice or soy milk myself.... I think I might replace milk with say...beer?

Hmm, Eric, I hate to start this all over again, but whats SADD?

Geeze. Milk would have wiped out the world population if it was bad. Some people have some intolerance that makes them flatulate a lot if they drink too much.

I spit out any milk that isn't the HIGH fat kind. I can't imagine why somebody would want to squeeze soy enough to make a "milk". Why would anybody actually drink "rice milk"? The only "rice milk" I ever drank was called "sake" and it was a definate health hazard

When people have trouble eating because they choke, gag, and cannot get enough calories, what does it matter?

Milk does a body good. Don't let the animal activists who honor cows above people fool you.

Yeah for sure i dont drink soy, never never never. I like milk, i just dont drink it by the gallon. But some people dont and thats good too. Gee, we must all be bored if milk is the least of our worries lol
PS oh yes Elizabeth SADD, winter depression.



Edited 1 time(s). Last edit at 01/31/2007 12:07PM by Barb.

Milk is a staple at our house! When my pHD MIL lived with us, my husband made her shakes with not just whole milk, but whole milk with extra cream added back in from the dairy store! She loved his shakes because they had that milk, ice cream and some fruit, and they were a great way to sneak in lots of calories with some protein powder mixed in. With 5 people in this house at risk (4 of them teens), they drink milk literally by the gallon.....several a week! (wish I could make one of those colorful smiley faces like the rest of you guys do :-).

Like this Laura lol

Laura, take away the hyphen and the period from your smiley face, and you will have one just like this