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Posted 9/28/2015 6:50 PM (GMT 0)
I'm a participant in the 23andme IBD initiative. You get a free DNA test as part of the program. All you do is answer a number of surveys and you become part of a genetic testing program. This might led to answers about what cases these diseases and you might find out more about your ancestors as a side benefit. I have connected to several new relatives because of the program and I found out that I have 2.4% neanderthal DNA.

You have to be diagnosed with uc or crohns to participate in the program.

Here's the link, if you would like to participate:
https://www.23andme.com/ibd/
(attempted to make your link clickable, but apparently I'm having a stupid day. Sorry. JS)
Mike Whitehurst

Diagnosed with UC when I was about 40 - over 25 years ago
Severe allergic reaction to either dipentum or 6MP
Cannot tolerate oral asacol
Been on remicade since 2006[url]

Post Edited By Moderator (Judy2) : 9/30/2015 8:25:08 PM (GMT-6)

Posted 9/28/2015 7:07 PM (GMT 0)
Only for Americans right?
Posted 9/28/2015 7:19 PM (GMT 0)
That's correct. I forgot to add that.
Posted 9/28/2015 7:20 PM (GMT 0)
I just signed up recently. Yeah, still usa only.
Posted 9/28/2015 8:19 PM (GMT 0)
Correct me if Im wrong, but I think in Canada you can still get a report from them, rather than just the raw data?
Posted 9/28/2015 9:12 PM (GMT 0)
Just a heads up--if you are interested in doing this, DO NOT select "Indeterminate IBD" as your diagnosis. I've been diagnosed with Crohn's, UC, and Indeterminate IBD but have been treated by my last two GIs as if I have UC (and I think that is correct). But, for the sake of full transparency, I selected the Indeterminate option and was disqualified from the study. Bummer :(
Posted 9/28/2015 9:55 PM (GMT 0)
I've already done the 23andme test and am high % Neanderthal 2.9%. But since Neanderthals are generally North Euro I expect many with IBD might skew higher with this.

Will be interesting if they connect IBD to genetics.

I went to the link and they do accept people like me who've already been genome typed. However if I join the study I lose access to community forums (and they send me a $20 Amazon card). I'm not active in forums but wonder why I can't continue there. Have to think this over.

(corrected my Neanderthal % after I checked)

Post Edited (imagardener2) : 9/28/2015 5:34:56 PM (GMT-6)

Posted 9/28/2015 11:18 PM (GMT 0)

Mike_in_Georgia said...

Diagnosed with UC when I was about 40 - over 25 years ago
Severe allergic reaction to either dipentum or 6MP
Cannot tolerate oral asacol
Been on remicade since 2006


I did the 23andme test. I then used a 3rd party to break down the results. Low and behold it shows I too have allergy to 6MP. 6MP put me in the hospital for 5 days a few years ago. It could have been avoided with the results from this test.
Posted 9/28/2015 11:25 PM (GMT 0)

imagardener2 said...
I've already done the 23andme test and am high % Neanderthal 2.8% I think. But since Neanderthals are generally North Euro I expect many with IBD might skew higher with this.


My test showed high neanderthal also. "An estimated 3.1% of your DNA is from Neanderthals"


100% European,Northern European
97.5% British & Irish
0.3% Scandinavian
1.7% Broadly Northern European
0.5% Broadly European
Posted 9/29/2015 4:20 PM (GMT 0)
johnj,

Either 6mp or dipentum almost killed me. It had a tonic effect on my liver. I was out of work for almost 6 months. I went from 160 pounds to 125 pounds in about 2 weeks and was in intensive care for about 8 days. It was really bad, but that was 18 years ago and I'm doing pretty good on remicade, but I have to make a change to some other medication ue to finances. I meet with my doctor Friday to discuss my options. I'm hoping humira will give me the same or better results.
Posted 9/29/2015 4:47 PM (GMT 0)
I'm 2.7% Neanderthal and found out I would not react well to Remicade. Nice to know I guess. Imagardener that's strange since you're already a subscriber. $20 on Amazon is not much--how much did you pay to subscribe? ON the other hand it would be wonderful if you could contribute your genome data to this research. I wonder who's funding it. It's got to be one of the big Pharms.

Mike that's terrible that you are forced to try another drug due to insurance problems.
Posted 9/29/2015 5:07 PM (GMT 0)
I had mine done for this study as well. I am 2.5% Neanderthal, 99.9% European and 0.1% unassigned, and the bulk of my ancestry (85%) is British/Irish.
I took my raw data to have interpreted and it turns out I am not a candidate for Remicade as I have genes that increase the cancer risk, but I have a lot of "good" dna for 6MP.
What I would like to know is if/when they will be letting us know what they have gleaned from this study.
Posted 9/29/2015 6:27 PM (GMT 0)

Mike_in_Georgia said...
johnj,

Either 6mp or dipentum almost killed me. It had a tonic effect on my liver. I was out of work for almost 6 months. I went from 160 pounds to 125 pounds in about 2 weeks and was in intensive care for about 8 days. It was really bad, but that was 18 years ago and I'm doing pretty good on remicade, but I have to make a change to some other medication ue to finances. I meet with my doctor Friday to discuss my options. I'm hoping humira will give me the same or better results.


New dr put me on 6MP. Within days high fever/chills. Very bad stomach pains I advised Dr. that I thought it was the 6MP. He said no it isn't stay on it. Got so bad I went to emergency room. They admitted me. Fever went to 106. It would alternate from pouring sweat fever drenching sheets, to chills so bad I was pulling muscles in my back. Again I told the Dr treating me for UC(he was not part of hospital I was in) He again said stay on it it is something else. I took it upon myself to stop 6MP. Within 24 hours of stopping 6MP I started feeling normal. They were all stumped in hospital how it stopped. After 3 days of taking tests they found no cause. I told them I stopped taking the 6MP. They did some test determined I am allergic and kept me an additional 24 hours to make sure I was ok. Dr.s are arrogant and egomaniacal sometimes. I learned to advocate for myself.
As far as Remicade, I took that and it save me from surgery. I built up antibodies after about 3 years. I switched over to Humira. Been on Humira for about a year and I am doing excellent, and it is soooo much easier than Remicade.. Good luck to you.
Posted 9/30/2015 7:49 PM (GMT 0)
Johnj,

I had a similar experience with asacol. It was making me sick and the doctor kept telling me to stay the course. Like a knot-head, I stayed on it until I wound up in the hospital. Then I tried remicade, which saved me from having my colon removed. Like you I decided then that the doctor is not always right and that I should not keep taking something which is making me as sick or worse than the disease.

I am hoping to switch over to humira. I see the doctor tomorrow.
Posted 9/30/2015 7:57 PM (GMT 0)
Just a FWIW I find if I bunch some skin up between my thumb and finger on my front thigh and inject there, I feel almost nothing. If I don't bunch up enough and the needle goes to muscle is the only time I feel it. Once you do it COMMIT to it, do NOT back the needle off at all until the indicator shows(yellow window). It may seem like a lot but it is painless and simple. I never could get myself to inject in stomach area though. I was to scared.
Posted 9/30/2015 8:27 PM (GMT 0)
As mandated by the FDA, they don't give you a detailed report anymore, and you have to insert the raw data into a third party application. I thought it was a joke at first, but you barely get any information other than you are some % Neanderthal and some useless longitudinal data. Those paying money for it are getting gypped, and I would not recommend it to anyone. I'm not sure if this is how it works for those outside the USA, but the FDA runs things here and does not want the pharmaceutical model compromised in any way, shape or form.
Posted 9/30/2015 8:58 PM (GMT 0)
How does the data help you figure out what you are allergic to? That would be very valuable to me since nothing has worked so far and my GI keeps prescribing different drugs. Thanks!
Posted 10/1/2015 1:05 PM (GMT 0)
Unfortunately, I believe that is what all the doctors do when treating bowel diseases and all of the drugs are subject to have horrible side effects, but it is better than doing nothing.
Posted 10/1/2015 3:32 PM (GMT 0)
There was a review of sites that analyze dna and give health conditions and odds as a result. The big 3 were reviewed (including 24andme), for the same patient, and were given radically different odds of illness in each outfits report. The issue is that they do not sample enough of your dna to give accurate results and odds for complex diseases that may involve dozens, or hundreds of genetic markers. Assumptions are made, different vendors make different assumptions, etc. It'd be more expensive to analyze your dna thoroughly enough to produce consistent results among the various outfits. Reports were stopped as a result.

In the future I am sure a more thorough dna analysis will be cheaper and faster, and it'd be a heck of a lot more accurate.
Posted 10/1/2015 3:54 PM (GMT 0)
I did this last year and was underwhelmed. Didn't tell me any information besides that I have some Neanderthal in me. As if that matters at all! I already know where my family is from. Really told me nothing new. Where is everything sending the data they received? I didn't even receive data!
Posted 10/1/2015 4:37 PM (GMT 0)
Here's the article that I was referencing: www.nytimes.com/2013/12/31/science/i-had-my-dna-picture-taken-with-varying-results.html?_r=0
Posted 10/1/2015 8:54 PM (GMT 0)

iPoop said...
In the future I am sure a more thorough dna analysis will be cheaper and faster, and it'd be a heck of a lot more accurate.

Yes they should get more accurate with more input. My results were in the ballpark but for example they said I had higher chance of Crohn's and lower chance of UC. My diagnosis is UC but who can say for sure since even my GI's say "consistent with UC" on my scope data.

Report says I have higher chance of squamous skin cancer and yes I've had several surgeries for those and only one basal which is the commoner skin cancer. Report says I have higher chance of celiac and when I removed wheat from my diet my bleeding stopped (did this before getting test results). Celiac test said I was not celiac. I believe what my gut says.

Would I have paid $99 for dna test with getting health reports? No way. But I also don't read them as gospel,just things to watch out for.
Posted 10/1/2015 9:41 PM (GMT 0)

B_girl said...
I did this last year and was underwhelmed. Didn't tell me any information besides that I have some Neanderthal in me. As if that matters at all! I already know where my family is from. Really told me nothing new. Where is everything sending the data they received? I didn't even receive data!

If like me you received your 23andMe after 11/22/13 then we will not receive health-related results, only ancestry data. The FDA blocked 23andme from sending it out to us but 23andme says that this is only temporary. Sometime in the future we will receive health data from 23andme (I hope).

In the meantime you can have your data analyzed from at least two companies based outside of the U.S. For a $5.00 voluntary contribution both geneticgenie.org and promethease.com will read the raw DNA from your 23andme and give you detailed health-related data.
Posted 10/1/2015 10:08 PM (GMT 0)

Guardian7 said...
the FDA runs things here and does not want the pharmaceutical model compromised in any way, shape or form.

I am tending to agree with you on this. My girlfriend's 23andme results indicated severe genetic MTHFR dysfunction. After following thru with much research this was the key to finally resolving the severe chronic migraines she has suffered since she was 12 years old.

23andMe is a very competent company and I respect what they would have sent me. One of its founders is Anne Wojcicki who was married to Sergey Brin, the founder of Google. Despite all of his billions 23andme discovered that Sergey Brin was very susceptible to Parkinson's disease. Good information to know. I hope he is doing everything possible to avoid that fate, (like reading our threads about vitamin D lol).

Its health-related results explains why some of us are genetically compromised for metabolizing high histamine foods. And some of us on this forum have found it to be a useful tool in general. (I wish TheAnswersYouSeek aka Pathogenkiller would start posting here again).

TheAnswersYouSeek said...
23andme can give you more info. But plan on also getting homocysteine and ammonia blood tests to make sense if if you are having issues around any mutations. Organic acids test and urine amino acids tests can also be helpful as well as spectra cell. You can take a bunch of b12 and have high serum levels of b12 and folate, but if you don't have enough lithium (oat) and magnesium in your red blood cells (spectra cell) your body isn't using any of it because its not making it into the cell. However, then you kinda go down a test hole.. First step, 6 weeks on lmethyl and b12 then you can explore other issues. If you find you have homozygous CBS mutations you might alo want to address that concurrently by trialling diet mod/thiol restriction. Also, ndufs7/8, ATP and cox6 mutations need support with things like ubiquinol, b-2 ( bioactive form), b5(pantheoic acid), l carnitine..


Deltaforce said...
I am going through my 23andMe results and I have A1298C heterozygous mutation. Although that just means that the enzyme is working 70% of its activity...

Posted 10/2/2015 1:38 AM (GMT 0)
Which post-23andme analytical site have others used and recommend? Genetic genie? Pronethease ? Others?

Thanks.
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