Hi,

I'm at risk and haven't been tested, but that's an entire other discussion. I am becoming vegan, which is also an entire other discussion. My reason in posting though, is that I want to know if anyone with HD is vegan and what they do to keep it from interfering with their preventative measures.

I have read that low creatine, low B12, and deficiencies that fish oil prevent, are all things to worry about, both for people with HD, and for vegans. However, I have also read that there are benefits, like that coconut oil (I now consume way more coconut products than before I was vegan) and omega 3's (I consume a lot of avocados and hemp) are great for the brain, and also that not consuming dairy and harmful chemicals can help keep us sharp.

I think that if I take b12, fish oil (which I know isn't vegan but that's a small compromise I'm willing to make), and creatine, all which I was going to start taking as preventative measures for HD anyway, being vegan shouldn't be a problem, and if anything could help me keep my diet more healthy anyway. However, I figured I would ask on here, because for all I know, there could be some serious problem with this, like something else I'm missing where being vegan could actually cause my HD (if I have it) to progress more quickly, which would be terribly tragic.

Thoughts?

That's a good question that I don't know the answer to. It can be challenging for anyone going vegan to make sure they get proper nutrients. Maybe consult with a dietician

Chloe,

I don't have a specific answer for vegans. but here's an excellent piece by Dr. LaVonne on healthy lifestyles for HD.
[hddrugworks.org]

Will

Thanks for posting that Will. It's always a good quick read to make sure we are doing what we can. Keep guzzling coffee. . . etc


Chloe, What made you want to go vegan? We have gone in the opposite direction, eating whole foods, home cooked and not paying any attention to fats or calorie. We went Paleo for a few months and that progressed to all home cooked meals with no packaged foods and only quality grains. We have given up most oils for cooking and gone exclusively with coconut oil, animal fats and butter.

Incidentally, I lost weight and Laura did not gain.

Thanks,


Pete

Chloe,

Here's my current supplement regime: [www.hdlf.org] I'm gene positive with a low CAG of 40 and symptom free at age 67. I think these and my lifelong exercise routine (running) are helping keep the devil from my doorstep. I don't think any of these would be harmful for a gene negative person.

I recently switched my creatine to CON-CRET, a new chemical invention named creatine hydrochloride (HCL)L. It is a hydrochloride salt, which increases water solubility and thus bioavailabilty by magnitudes compared to monohydrate. It was patented in 2013 (US 8354450 B2).

I found two sources that I would recommend. It comes in a powder form and capsules. The economics below are for capsules.

1. Vitaminshoppe.com $29.99 for a bottle of 72 equals $.42 per day
2. Amazon,com $19.89 for the same bottle equals $.28 per day
3. The Amazon vendor is actually badasssupplements.com and on their website they charge $23.99 equals $.33 per day

I bought mine from Amazon and Badass (a great name) delivered promptly.

For comparison, a 1000 gram jug of monohydrate powder costs $40.00 and provides 200 5 gram doses at $.20 per day

Many people experience gastrointestinal problems (loose stuff) with creatine monohydrate. CON-CRET has completely eliminated those for me.

Will

Will,

Have you ever used COenzyme and if so, what a good quantity. I have been taking 600 a day and was interested in the Creatine, though I do have reflux problems.

I'm 42 count at 54 but the stress of work has been terrible and bringing on symptoms.

Mare,

I have never used CoQ10, just creatine. Part of that decision dates way back to Jerry Lampson, the founder of HD Lighthouse. He didn't think Q10 was effective and was against a clinical trial. The trial was funded and is underway. I've forgotten the name of the trial.

More recently, folks who understand the science have said both supplements work the same way for neuroprotection. So, I've stayed with creatine alone. It's also a cost issue for me. Q10 is pretty expensive compared to the other stuff I take.

The new CON-CRET creatine I mentioned in a previous post eliminated most of my gastrointestinal problems, so you might be able to tolerate it with reflux.

I have occasionally in life thought about something clever I should have said a day later. It happened with that post. I should have added that ancient Internet expression YMMV (YOUR MOVEMENTS MAY VARY).

Will

Thanks!!! I'm going to try that Con-crete