Yes PK, I typed that in haste, it is probably more the CFS people who are suggesting supplements that may be risky for IBD. I came across a guy on the Phoenix Rising the other night saying his friend with Crohns should take Amylopectin - that is a substance used to induce colitis in animal studies, he couldn't really have given his friend worse advice (incidentally, from my reading around it, now I understand why corn seems to go down badly for me, some corn very high in it, possibly also why grain free SCD helps people when gut very inflamed).
CM - you won't get the health reports now if you do 23andme but it is not as unclear as you think on how you view it for those of us that got in on time. Although I think a lot of people don't read it properly so understand things wrong, but they do explain about
how they come to their "average stats" for a health concern versus your personal risk. They say how many studies the predictions are based on and give it star ratings - so the more studies and evidence there is, the higher the star rating. They also say when they are basing things on their own survey collections (which of course can't be said to be at all reliable, I am sure people try to be honest but those surveys can be hard to answer accurately)
You may have read about
their Parkinson's research and the controversy over patenting versus free knowledge for all
www.genomicslawreport.com/index.php/2012/06/01/patenting-and-personal-genomics-23andme-receives-its-first-patent-and-plenty-of-questions/Then they also gave in the health information your drug response profile. Now we know as UC people that this stuff is real - such as people who cannot take Imuran because they have no production of TPMT enzyme.
I've put this in various posts before but it was very validating for me to see the drug response report. For instance, when I was hospitalised in late 2008 with an unidentified virus and in a low level flare, they insisted on pumping me with Warfarin (Coumadin) because protocol is that UC people at high risk of blood clots have risk elevated when confined to bed so must be given Warfarin. I had an awful reaction and passed so much blood. They put me down as making a fuss and it all in my mind - so my 23andme report comes back 5 years later with "increased Coumadin sensitivity, start on lower doses"
The biggest risk my report shows is heart risk and DVT. My clotting factors have always been high on tests (fibrinogen and D-Dimer get tested here if you are considered a blood clot risk), now of course our old friend MTHFR c677t and homocysteine are implicated in that too. So it was no surprise to me to see that. I also came back as being a caffeine slow metaboliser, which means a stronger reaction to caffeine. Now I have always known that a cup of coffee sends me running to the bathroom or caffeine at night interferes with sleeping - so just interesting to find that there are enzymes involved and it is not just "all in my head".
Then to the question - it says I am at risk of X therefore I must "treat" it - yes, I agree with you that people jumping to conclusions on this. Just because you have a risk on a SNP it won't express necessarily as far as I understand. An example in my case might be hayfever, where it highlighted probability for me. I definitely did not suffer from it as a child/teen, it came around the age of 30. In my 20s I spent a lot of time living amongst
rt.com/news/pesky-poplar/ and, then I developed hayfever (panicked and thought I was getting UVeitis and consultant said, oh on, just hayfever) - so I believe my body was overstressed by it and the protective element in my body turned the response on. As far as I see it, all of these genetic changes happened to try to help our bodies deal with our environment. Thus, if you are living on a low protein diet for a few generations, makes sense that the body would try to change its processing of protein to deal with this (hence perhaps a factor in why high protein diets problematic for c677t homoz people), and then once it changes something it needs to try and regulate elsewhere - which takes us back to why supplementing one part of the cycle may well harm another part that was already trying to adjust to take care of the previous changes. This would link to me for why my B-supplements turned from helpful to poison, all good when I was a bit low, disaster when I came too high.
Ultimately, to me this links back to the epigenetics stuff and how, if the body and mind are not stressed by certain environmental and emotional factors, things will stay more in balance and less disease will happen. Environmental factors can be very obvious, such as asbestos for those with mesothelioma, or less obvious and harder to prove, such as exposure to all night electric light/melatonin disruption as a possibility to why shift workers had higher breast cancer incidence. Similarly, with emotions, we are built to deal with emotional stress but some types of stress threat seems to turn to ill health - hence the UCers who report flares at difficult emotional times.
So to, is it just money making? For some perhaps, for others no, but people do need to earn a living. I think people like the MTHFR.net guy are genuinely trying to manufacture supplements that would be more helpful to people with the problems but given their limited access to research and testing, yes, I would see it as a concern. Don't forget though that there has been awful heartbreak for women with multiple miscarriages and there seem to be those who are helped by some of the MTHFR protocols to full term pregnancy - that can only be a good thing surely?
I think those of us with chronic illness need to embrace outfits like 23andme and work to make them safe and keep those who would exploit it out. We have limped along with UC treatment for years, in 30 yrs of UC I am still getting the same old mesalazine and steroids with the option of going onto stronger drugs if they stop working with all their awful long term side-effects. They monitor some of my B vits and not the rest....I still feel angry about
that butyrate paper that was linked to the other night on the thread with the animation of butyrate working in the bowel. 20 years ago that research was out there! Yet only today do they have butyrate enemas in clinical trial and if it was not for a forum like this, none of us may have heard of butyrate, certainly nearly no one on a UK facebook colitis group I am on has heard of butyrate. Yet it makes so much sense that, if people's colon mucous integrity could be preserved earlier on, they may have more chance of avoiding the invasion of the bacteria that we now know from those 10,000 biopsy studies from Germany are dormant in our IBD colons and are activated and perhaps are why the immune system goes on a fight when the e coli etc are not seen at stool sample level or even in old style biopsy techniques.
Moreover, that paper said that the third line of trying to make butyrate for the colon, if it has not got RS nor glutamin, would be glucose. I've talked to several consultants about
their anecdotal evidence that young people in particular who present with IBD have really high sugar diets (and I was one of them back in the day). What a really helpful path of research it would be to look at what damage might be done by the colon trying to use all that glucose from sugary food to heal itself when there is no RS and glutamin around (I think no RS nor glutamin passed my lips as a mid teen apart from MSG)- but where is that research? It's people like us who could push for it and crowd fund it.
Hope that is not all too much of a rant to read. ....