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Hi, I am the mother of a 2 year old with failure to thrive. They suspect celiac or other diseases. I found he has this gene mutation and I believe I have it as well. I am totally new to this site and wish I had a docter to walk me through it and tell me which mutations are dangerous, but I am on a limited budget and have no idea what they would charge for advice... Any help appreciated.
- 10 years, 3 months ago
Mean I g the other 75% is environmental diet house chemicals from bedding new furniture deoderants hair sprays you name it. We are living in a toxic world and if your mutated and special we don't function the way we should and our body is compromised for invasion and illness
- 10 years, 3 months ago.
The genetics is only 25% of the problem if you want a good read get Dr Amy Myers book reversing auto immune disease most problems are due to Leakey gut ? Bad bacteria or foreign bugs can be causing this and need to be treated to fix the gut when it is leaky you don't absorb all the nutrients you need in foods good luck Palos on is also a good Google and read too.
- 10 years, 3 months ago.
Laura,
To answer your question about whether the 23 and Me test is a sufficient test for celiac disease, the answer is that I don't know. Unfortunately, 23 and ME gives explanations of only the genes to which you test either +- or ++ and not the --. And some positives are given no explanation. So, other than the Gluten Sensitivity panel, for which I was +- and for which no explanation was given, I don't know of other genes that can lead to celiac disease, but they may exist. I do know that I ran a simple blood test for celiac disease through my endocrinologist and it was covered by insurance. Keep in mind that gluten intolerance can express itself in many ways, not just digestively.
The recommendation below for Dr. Rodney Russell and his website www.overcomesicknessandisease.com seems to be a good site with simple explanations of methylation and what each gene does and what their deficiencies can cause. He also offers treatment videos. He does phone consultations for around $300 +. I would with this website. According to his site, he uses Neurobiologix videos and products, which are Dr. Kendall Stewart's products. Though I have been a patient ... More
- 10 years, 3 months ago.
I know I'm receiving this email due to my methylation mutations, but I believe this is due to a much larger genetic issue I have. Thru genealogy research on my family, I've discovered that my family probably suffers from FAMILIAL MEDITERRANEAN FEVER, one of 5-6 inherited periodic fever syndromes. I'm almost 70 yo and just finding out that my kids, grand kids and several other family members have suffered with this for years. My fathers side of the family traces back to Jewish heritage, where it is thought this began. My mother's family traces back to the Tennessee Valley and possible Melungeon heritage (also possible Middle Eastern ancestry). FMF looks like any and all inflammatory problems, celiac, irritable bowel, pleurisy, gall bladder, Lyme disease, arthritis, fibromyalgia and the list goes on and on, short stature and failure to thrive is even an issue. The primary treatment is colchicine, like for gout. It seems we have no turn off switch for inflammation. My family doesn't tolerate the medication ( multiple allergies and food sensitivities are also an issue) so we have gone the herbal/homeopathic route. To go along with this and really confuse the issue, I ... More
- 10 years, 3 months ago.
I would go to MTHFR.NET to research the site and hopefully find a doctor in your area.
- 10 years, 3 months ago.
Dr. Ben (www.mthfr.net) says that people with this genetic defect should stay off of both gluten and dairy. I too am heterozygus and have been on a grain free and dairy free diet after having a serious health collapse. (they are now saying that a truly gluten free diet is a grain free diet.) If you would like information on how to implement this with a child, here is a great resource: http://www.thepaleomom.com/paleo-for-kids
It is GREAT that you are getting help for your child at such a young age!!!! My prayers are with you. Take one baby step at a time and you will make a big difference in your child's life. BTW, your child most likely did get the gene from you. I know that when a person has Gluten Sensitivity Disorder, their direct blood relatives have a 70% chance of having that gene.
- 10 years, 3 months ago.
Wow, thanks everyone for the feedback. I will try to reply to each one of you but I can not tonight. I just wan tot say that Becki I did watch the healthy gut summit. I have been trying to go off gluten for months. recently we went back on and he seems to be ok with it. I want to know for sure he has a problem. Also he seems to have problems with MTHFR UO-2667 so thanks!I have read the book eat right for your type. thanks! DF-7509 thanks for the referal. I am an American living abroad posting on behalf of my son Isaiah. I am Laura actually! I am not sure if my insrance will cover things like that over here. FO-5650 Thanks for the fb group. I will look up that up. VZ-6625 it would be great to keep in touch with you about your sons progress in the failure to thrive!IF-2816 my sons dna reports said he had a problem with methylation. I have studied a lot about gluten problems but know nothing of methylation issues. Both of my boys have issues with amoeba. I have put them on natural herbs to ... More
- 10 years, 3 months ago.
My personal experience is that if you ask 3 doctors about the genetic mutations, you will get three different answers. I believe this area of epigenetics is still so new and the docs are still learning. Also, the way the different genes combine is so individual in each of us that we are not all the same when it comes to supplementation. What works for one person will send another into serious symptoms. I have had to find this out the hard way. I would highly recommend you find a doctor for a 2 year old and not try to treat on your own. I agree with the recommendations below for Dr. Ben Lynch, Dr. Amy Yasko and Dr. Kendall Stewart. I have worked with all of them and yet still have medical problems due to Lyme disease. So sometimes methylation is only a piece of the puzzle. I would recommend doing the test for celiac disease and possibly running a test offered by Cyrex Laboratories that will test foods that cross react with gluten. Meanwhile removing gluten and dairy from the child's diet may begin to give you an idea if that step helps to improve his/her health.
- 10 years, 3 months ago.
I can't post a link from this phone. The group is MTHFR A1298C Also, I am a certified health coach and LMT and I warn you to be cautious with these supplements because all genetics are interconnected. Professional input is recommended. I cannot take them even everyday. Definitely drop the gluten though.
- 10 years, 3 months ago.
Please be careful with methyl folate and methyl cobalamin. I went crazy taking 3 Thorne Methyl Guard Plus daily.....due to other deviations (COMT and CBS, MAO A andBHMT08) I was thrown into a suicidal anxiety reaction with no sleep.....I followed Dr Lynch's recommendations of taking Niacin, P5P and Hydroxycobalamin for the overmethylation they caused, and in 24 hours was back to normal....You can really mess with your nerves and anxiety levels if you get too cavalier with the methyl groups if you have COMT, CBS, MAO A and BHMT08 like me. I would say Dr Ben Lynch is the MTHFR guru. He seems to think 1298 hetero is not as serious as the 699....so we are lucky there.....good luck to you....Don't go all crazy doing stuff until you are well read....it's really a very individual situation to find your sweet spot....My mind is so much better taking the supplements Lynch recommends and I am very strict about my methyl group intake.....
- 10 years, 3 months ago.
Isaiah,
My family has at least 3 out of 7 members with confirmed cases of autoimmune. My daughter and I, after almost 6 years now, are finally beginning to have more good days. From all my research and what I have learned, if he has celiac you should remove all gluten from his diet. If it were me I would also remove ALL grains and dairy. Celiac is the only autoimmune they know for sure is triggered by gluten. Remove the gluten, all grains and dairy then work on healing his gut with probiotics and bone broth. There was an online Healthy Gut Summit that took place a month or so ago, it had a lot of info that I found helpful. I don't know if you can still purchase it but if you could I highly recommend it. I hope this helps.
*Becki
- 10 years, 3 months ago.
Also, I can't find that a1298c group. Could someone post a link?
- 10 years, 3 months ago.
Hi Isaiah,
I have this as well! I'm seeing a holistic practitioner, who is also a chiropractor, and he recommended the genetic testing as he suspected I wasn't methylating correctly. As I understand it (and I could be wrong!), this mutation impacts how well your cells detox. If they don't detox well, it could result in the expression of other nasty things I have in my genes (degenerative diseases, cancers, etc.). To fix this, he has me taking a high daily dose of 5-MTHF, a folate, that will improve the methylation process. He's doing this in conjunction with lots of other things, including having me on a very strict grain-free Paleo diet. I highly recommend calling some chiropractic or holistic practitioners in your area and seeing if any have a mind-body approach to treatment and if they have a history of recommending genetic testing for evaluation. Every body is different, so definitely make sure you have the recommendations you and your baby need specifically! I hope this helps!
-Diana
- 10 years, 3 months ago.
Another doc to consider that is fabulous with this stuff and quite affordable. He, too, is a functional medical practitioner and chiropractor that's had a lot of success. Dr. Rodney Russell at www.OvercomeSicknessAndDisease.com.
- 10 years, 3 months ago.
I'll have to look into that. My 5 year old has bowel issues, lactose problems, stomach pains etc. My 14 year old is a good weight but has severe stomach pains, bowl issues, and food aversion. I only know my endocrinologist is doing celiac disease testing and varies autoimmune testing. Thanks for the insight.
- 10 years, 3 months ago.
Failure to thrive may indicate a very different condition than methylation. I suggest that you join the group MTHFR A1298c and talk with Angela Knowles Griffiths who is trained as a functional medical practitioner and chiropractor. She is very up on these genetic problems as well as others. She has been finding babies and young children with parasites through the test from DRG labs. Parasites are hard to detect and this test is a DNA test. I strongly suggest you read posts on that site, read the files in that group and ask Angela how to proceed. I have a lot of intestinal issues, and require much more than just addressing this. Good luck!
- 10 years, 3 months ago.