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12-23-2014, 09:35 AM   #61
xeridea
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Genomics will help unlock variations in disease and help bring about custom tailored treatments for patients. You may be able to find out what susceptibilities you have to particular antigens and your doctor will be able to prescribe mediation to knock those out of your system. And ultimately they may be able to identify and fix the specific mutations that underlie the disease for each individual. Targeted therapy is much preferred to systemic approaches being used now. The patient populations that are willing to participate in these studies will see the greatest near- and long-term benefits.
01-24-2015, 08:02 AM   #62
malorymug
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Ya'd think it was Christmas with how excited I am to pour over this 23andme.com data. Results are in!
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Mom to: 15 year old boy
Crohn's in stomach, small intestine, large intestine, and perianal disease
Diagnosed April 2014, at age 13

Currently taking:
Remicade 10mg/kg every 6 wks
Methotrexate 7.5 mg/wk
Cipro
Augmentin
Miralax

previous meds:
6mp 50mg
Flagyl
Cipro
Prednisone 30 mg
01-24-2015, 08:27 AM   #63
nogutsnoglory
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Haha I was so excited when I got my results. It proved really helpful for me too. I had no idea I had the MTHFR genetic mutation.
01-24-2015, 09:48 AM   #64
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Wish I could do this but apparently Maryland isn't allowing its residents to do so at the moment....from the 23andMe website FAQ:

The 23andMe Personal Genome Service is not available in the state of Maryland due to state-specific clinical laboratory testing statutes in place there. If you reside in Maryland we ask that you please not proceed with ordering or circumventing the law by ordering to another state. Unfortunately we can't provide a timeline as to when our services will be made available to Maryland residents. We'll provide further updates on our website as more information becomes available. We hope to make our services available to the residents of Maryland in the future.
01-24-2015, 09:55 AM   #65
malorymug
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Wish I could do this but apparently Maryland isn't allowing its residents to do so at the moment....from the 23andMe website FAQ:

The 23andMe Personal Genome Service is not available in the state of Maryland due to state-specific clinical laboratory testing statutes in place there. If you reside in Maryland we ask that you please not proceed with ordering or circumventing the law by ordering to another state. Unfortunately we can't provide a timeline as to when our services will be made available to Maryland residents. We'll provide further updates on our website as more information becomes available. We hope to make our services available to the residents of Maryland in the future.
That is crazy! Seems like there should be an exception for studies like this one. It would sure be tempting to temporary become a resident of another state.

Also, I would let my representative know this law has an unintended consequences of limiting IBD genetic research.
01-27-2015, 10:50 PM   #66
apl2018
 
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very cool. as a former researcher, current medical student who plans to go into academic medicine im proud to do this
01-30-2015, 05:18 PM   #67
nogutsnoglory
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The initiative update is that they are almost halfway there in terms of their recruitment. They still need to reach 10,000 people to be able to conduct viable research on IBD and genetics.

If you haven't signed up, please consider doing so!
01-31-2015, 11:16 PM   #68
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wish they would open up the health results like it once was. Thanks FDA
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Diagnosed June 2012 at 24
Had one resection of 10 cm Dec 2013

Current meds:
Humira

Previous meds:
Prednisone, Budesonide, Lialda

Other:
Omega Red Fish Oil
Centrum Multivitamin
2000mg vitamin D
Gluten free and dairy free diet
No overly spicy food or acidic food or vegetables unless steamed - a boring, bland diet... where a will personally come out and ask if I am sure I don't want all the sides and sauce that make the dish good to begin with
01-31-2015, 11:53 PM   #69
nogutsnoglory
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They are working on it. They recently got Canada to allow health info again. I think Europe allows it. They are working with the FDA to gain permission.
02-01-2015, 06:48 AM   #70
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That is crazy! Seems like there should be an exception for studies like this one. It would sure be tempting to temporary become a resident of another state.

Also, I would let my representative know this law has an unintended consequences of limiting IBD genetic research.

Thank you for the great idea - I actually sent a message to both of my state senators this morning relaying this concern. Who knows if they will do anything about it...but at least I put it out there!
02-01-2015, 08:42 AM   #71
nogutsnoglory
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Thank you for the great idea - I actually sent a message to both of my state senators this morning relaying this concern. Who knows if they will do anything about it...but at least I put it out there!
If it's a state law you are more apt to send it to your assemblyman and state senator not the 2 senators who vote for Maryland on a national level but the ones focused solely on state politics.
02-05-2015, 10:42 AM   #72
CrohnsChicago
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Related to the DNA testing, more specifically the neanderthal percentage reporting...I thought this was a pretty interesting article:

Neanderthals suffered from psoriasis too: DNA study suggests ancient human cousins suffered from 'modern' diseases

Geneticists from the University at Buffalo studied ancient human DNA
They found genetic faults in the Neanderthal genome that cause psoriasis
Their DNA also had errors thought to cause Crohn's Disease in humans
Scientists believe the two diseases may have originated in a common ancestor of Neanderthals and modern humans over a million years ago


Read more: http://www.dailymail.co.uk/sciencete...#ixzz3QsyZSBdr
Follow us: @MailOnline on Twitter | DailyMail on Facebook
__________________
Crohn's-Colitis May 2012
Current Meds:
6-MP (100mg) / Asacol (4800mg)
Past Meds:
Prednisone/ Entocort / Flagyl
Current Supplements:
B12 Shot (1cc/mo) / Multivitamin / Vitamin D (1000iu) / Calcium (1200mg) / Omega 3 Fish Oil (4800mg)
Additional Info:
Anemia/Borderline Anemia - whole life
Generalized Anxiety Disorder - 2009 (Cognitive Behavioral Therapy, mindfulness meditation)

02-22-2015, 09:46 PM   #73
lookame
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I signed up. I'm the only one in my family to have crohns or UC so it'll be interesting to see the results.
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Diagnosis: Confused officially diagnosed in 2010

Bloodwork is indeterminate IBD, biopsies are crohns positive, symptoms and visually it's UC

Current meds-
Prednisone, humira, 6mp, and lialda
awaiting surgical consult

Mom of Little Z
eosinophilic esophagitis 5/2015
03-29-2015, 07:37 PM   #74
lookame
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So my base genetic whatever came back and I'm confused by it but from what I understand...I have the MTHFR C677T and MTHFR A1298C mutations(in the +/-) and I guess the VDR Bms mutation (+/+)...a lot to do with vitamin b12, folate, and vitamin D...
03-29-2015, 08:55 PM   #75
Catherine
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lookame

I am looking at getting my younger daughter tested for MTHFR.

Do you know whether you have single mutation or double mutation of C677T and A1298C?

Do you take folic acid? Or have foods supplemented with folic acid?

The research is just beginning on MTHFR.
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Catherine
Mother of Sarah dx aged 16, Jan 2012
DX - CD 1/12, asthma
Small bowel to small bowel fistula

Meds: ), azathioprine 200mg, Mesalazine 1.2g x 2, seretide 250 x 2 (asthma), ventolin (as needed)

Currently no supplements.

Has previously taken Multi B, Caltrate, B12 & Iron

Prednisolone (from 30 mg 01/02/2012 to 17/06/2012, 30mg 24/10/12-28/12/12, 50mg 24/1/13-27/4/13)
03-29-2015, 09:02 PM   #76
lookame
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They are the single mutations. I haven't supplimented withings folic acid unless I was pregnant but I think I may start adding in a suppliment.

I inputted in promethese.com and it's pretty interesting seeing what I'm at a higher risk for (it also tells you basically what you look like-in my case blue eyes, straight hair, small breasts lol) things I'm at highest risk for are crohns disease, psoriasis, heart disease, diabetes, anxiety disorders, pre eclampsia, testicular/breast (and some other) cancers, macular degeneration. A lot of it could have been duduced by my relatives history but since I'm the only one with ibd in my family its very interesting seeing that I was very much at a higher risk (I think it said 2-4x higher)
03-29-2015, 09:10 PM   #77
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So my base genetic whatever came back and I'm confused by it but from what I understand...I have the MTHFR C677T and MTHFR A1298C mutations(in the +/-) and I guess the VDR Bms mutation (+/+)...a lot to do with vitamin b12, folate, and vitamin D...
We've done the 23andMe test for my son who has Crohn's and he also has the same C677T and A1298C MTHFR mutations, along with rs1544410(A;A) VDR SNP.

I wonder how prevalent these mutations are with Crohn's patients, since MTHFR seems like an important upstream player in the innate immune system's mechanism for clearing pathogens?

This is something I had looked into a few weeks back and posted in the Parents of Kids with IBD subforum:

L-methylfolate (what MTHFR produces from dietary folate) is used in the cystein cycle to form methionine, which in turn is used to synthesize glutathione. Glutathione is a strong anti-oxidant enzyme in the body that scavenges toxins and heavy metals, getting rid of them. It also is used to make tetrahydrobiopterin. Now this is where things start getting interesting. Tetrahydropiopterin is one of the necessary co-factors for the production of nitric oxide (NO) by various nitric oxide synthases. One of these is the induced nitric oxide synthase (iNOS or NOS2), which is activated by immune system signaling to produce large quantities of NO during oxidative stress (inflammation), and infers macrophages with cytostatic and cytotoxic activity against viruses, bacteria, fungi, protozoa, helmiths and cancer cells. Sounds like this is how macrophages kill off the intruder.
03-30-2015, 01:23 AM   #78
Catherine
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They are the single mutations. I haven't supplimented withings folic acid unless I was pregnant but I think I may start adding in a suppliment.

I inputted in promethese.com and it's pretty interesting seeing what I'm at a higher risk for (it also tells you basically what you look like-in my case blue eyes, straight hair, small breasts lol) things I'm at highest risk for are crohns disease, psoriasis, heart disease, diabetes, anxiety disorders, pre eclampsia, testicular/breast (and some other) cancers, macular degeneration. A lot of it could have been duduced by my relatives history but since I'm the only one with ibd in my family its very interesting seeing that I was very much at a higher risk (I think it said 2-4x higher)
I am way out, my reading saying to stay away from folic acid. You need to use the activity form. Can't remember the name a the moment.
03-30-2015, 05:37 AM   #79
lookame
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I think in my case the suppliments that may be benificial would be b12 or vitamin d, though I don't know if I'm actually deficient in either so it may or may not be worth it. I'll do some digging...
03-30-2015, 10:23 AM   #80
Crohnick
 
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L-Methylfolate is the active form. You can get low dose over the counter or higher doses as prescription.

This is how I understand the pathway:

Folic Acid (typical vitamin B9 form) --> Dihydrofolate (dietary form) --> Tetrahydrofolate --> 5,10 Methylene Tetrahydrofolate -(*)-> L-Methylfolate.

(*) is where the MTHFR (Methyl TetraHydroFolate Reductase) gene comes into play to convert it to its final usable form.
03-31-2015, 10:20 AM   #81
SupportiveMom
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The GEM project () expanded to the US and 23andMe is now contributing to this fantastic research. Since the highest risks of IBD are in North America, UK & Australia it is so important to get many participants from across the regions.

For those in the UK you can participate too. Check out details here: http://www.gemproject.ca/2015/gem-pr...m-has-started/

Sorry, no sight to Netherlands yet from what I have found.
__________________
Mom of 16 yr. girl w/Indeter.Colitis Sep. 2012(age 11) Nov.2012 Crohn's Sep. 2014 Crohn's Colitis, UC Nov 2015, Crohn's Feb. 2016

Ileostomy surgery July 2015

Current Meds: None!
Previous Meds: Humira, Remicade, Methotrexate, Cipro, Flagyl, Zofran, Cortifoam, 5-ASA suppository, Questran, Mezavant, EEN (Peptamen Jr. 1.5) by NG tube, Antibiotic Cocktail (Vancomycin, Metronidazole & Doxycycline), Simponi, Prevacid, Imuran, prednisone
ibdsupportivmom.wordpress.com ☆
05-20-2015, 08:08 PM   #82
nogutsnoglory
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Hey guys just got an email update from 23&me. 5,000 have enrolled, they are halfway to their goal.

They now will enroll existing 23&me customers as well. I think a few of you couldn't enroll because you had this problem. Now you can!
02-02-2016, 10:55 PM   #83
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Hi,

Does anyone know if this study is still recruiting volunteers? For those who were accepted, did you get an email right away about them mailing you a kit or did it take a day or two?

The original link no longer works but I was able to find a sign up page when I googled 23andMe & IBD. I was able to sign up (on behalf of my daughter), and they asked me to verify my email address (which I did), but I haven't received an email confirming they are sending us a kit.

Not sure if that's because the study is closed or they want to check with her dr. first to confirm dx.

Thanks for your help!
S
02-03-2016, 07:45 AM   #84
Eridon2002
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They email you when the kit is mailed out. I just signed up and received my kit last week. I think it took a couple days for the first email.
02-04-2016, 11:04 AM   #85
Sophs mom
 
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Thanks Eridon2002. Just received the confirmation email this morning
01-15-2017, 07:52 PM   #86
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FYI Just tried and it says :
Thank you to all community members who made this IBD research possible.
Enrollment for this current IBD study is now closed. We are busy analyzing data to better understand genetics and IBD. Stay tuned for updates on our findings.
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