Multiple intolerances and methylation and Linda's good news

Linda in BC · Post by **Linda in BC** » Tue Jul 05, 2016 10:37 pm

I have wanted to come on here for a while now to give an update of good stuff that has been happening with me. I’m finally seeing improvement in my MC! I owe so much to the people here and although I haven’t been on here for the last 4 years answering posts and giving hope as so many dedicated souls have continued to do (bless you and yes, I am feeling a lot of guilt), I do know I have a moral obligation to share any big news I have learned in my journey toward health. Hence this post.
A little background for those who have joined the forum since I had to stop following or posting because I got overwhelmed in my life. I was diagnosed with MC (lymphocytic) in 1997 and have been trying to find some way to improve my condition for the past 18 years. I was one of those unfortunate ones for whom going gluten and dairy free made no appreciable difference. The list of foods that bothered me was far longer than the one of foods I could eat, but still I was always sick no matter what I ate or didn’t, it seemed. Entocort worked for me, and I thank my lucky stars that I found out about it from this site, and about going gluten free, because I think I would have gone mad otherwise, but I really didn’t want to have to use Entocort for the rest of my life. So I have kept looking, experimenting, reading, and trying different things… a lot of different things…  . About a year ago I decided to have my genetic profile done with 23 and Me to see if there was some genetic cause. I found out that I have genetic anomalies on a gene called MTHFR, and other genes that interfere with ability to process B vitamins, folate, and sulphur, and also an inherited condition called Ehlers Danlos Syndrome.

The Ehlers Danlos has given me poor quality collagen throughout my body including the lining of my intestines, and there is research that theorizes that there is strong link between ED and colitis. The MTHFR and other “methylation” problems, as they are called, it seems are what has caused me to have this auto immune disorder MC and multiple food intolerances. I say this because I have been going to a naturopath for the past 14 months, who has slowly introduced my body to forms of the B vitamins that I can actually process, as well as things to help my body detoxify itself, and lo and behold I don’t have D anymore all the time! I actually have “normans” most of the time unless I eat something I shouldn’t. And I am slowly being able to reintroduce some foods that I thought I would never be able to eat again. It has taken almost a year and a lot of expensive supplements but it is working, and I feel great.
A super huge SULPHER intolerance was actually my biggest issue and I had no clue. It was the reason why I was still sick despite cutting out gluten and dairy. It turns out sulphur Is in a lot of foods that I thought I could eat… nuts, seeds, brassicas, legumes, fruit dried (with sulphates), onions, garlic, (and supplements like MSM and NAC) ….and many I knew I couldn’t eat but had no idea why… eggs, peas, peanuts, lettuce, milk, asparagus, dairy products, tahini… It was the missing link and once I figured out what all those foods that made me sick had in common, it made so much sense. It only took me 18 years to figure it out! Hopefully someone may read this and be saved a lot of suffering.

The last time I was on the forum I saw a few posts about methylation so I figured others, like me, have found this information too. So maybe everyone already knows about it but I felt I had to share what has been working for me, and encourage you, if you do find out you have MTHFR, COMT, VDRTaq, MTRR, CBS, etc. mutations (these are all ones I have) to seek out a health practitioner who knows about this stuff and start to get those methylation pathways moving. It might be the answer for you as it was for me. At about 6 months I got really discouraged because I wasn’t seeing any improvement and all it seems I did was take supplements all day long. But about a month and half later I had my first normal poop and have seen really fast improvement since then. I was ready to give up but I am sure glad I didn’t. I had told myself I would give it a year and it took about 8 months. So hang in there, and best of luck to everyone on their healing journey.

Martha · Post by **Martha** » Wed Jul 06, 2016 5:58 am

Dear Linda,

How nice to hear from you again. Wow, you sure have been going through a lot, and good for you for keeping on a search to find what was wrong and what works for healing for you.

Yes, quite a few people on the forum not are investigating methylation issues.

I haven't heard of a sulpher intolerance before. How did you discover that? Is there a test for it, or was it more a case of looking at all the things that seemed to cause trouble and seeing what they had in common?

Anyway, welcome back, and thanks for sharing your good news!

Love,
Martha

Post by **tex** » Wed Jul 06, 2016 9:04 am

Hello Linda,

It's good to see a post from you again, especially with such a great update. Yes, methylation issues seem to be rather common among MC patients. For some of us it's not a major problem, but for others, treating it seems to provide major benefits. And I have a hunch that you are quite correct that those of us who don't seem to respond well to diet changes, probably have methylation issues that are preventing remission.

We definitely need more research and more doctors who are knowledgeable and qualified to treat methylation problems. There seem to be a lot of trial and error treatments available at this point.

Thank you for sharing your good news and all the helpful information. I hope that you continue to feel better and better.

Tex

Erica P-G · Post by **Erica P-G** » Wed Jul 06, 2016 3:42 pm

Hi Linda,
Good to hear your story, incredible life you are living and learning. I have done the 23andMe and learned I don't have MTHFR but I do have all the other methylation genes you have mentioned, I am taking L-Ornithine to help release Ammonia build up due to eating alot of protein, plus having to double my VitD dose to 10,000 because my VDRtaq gene doesn't get it where it needs to be very well. So yes, I have been studying Methyl issues, and have learned a great deal!

Thanks for such an inspiring post!
Erica

Marcia K · Post by **Marcia K** » Wed Jul 06, 2016 8:24 pm

Hi, Linda. Thanks for sharing your story! My great-niece had stomach issues and we thought she had C.D. but she was recently diagnosed with a sulphur intolerance as well. I had never heard of it before. I'm glad that you're doing so well!

Linda in BC · Post by **Linda in BC** » Thu Jul 07, 2016 1:03 am

Thanks for the welcome back everyone. Martha, how I found out about the sulphur was a gradual and indirect process. I was seeing a woman for BIE treatments ( Bioenergetics.. if you want to check it out here is a link http://vancouvernutritionist.com/bie-allergies/ ) for about 3 months and although my seasonal and chemical allergies showed some improvement, the treatments made me quite a bit sicker every time in terms of the colitis/D. The woman was talking to the Dr. who trained her about me and when she told him all the foods I was intolerant of, he said it sounded like I had an issue with sulphur. It made sense that sulphur might be my problem because I can't take sulfa drugs either (I got something called Stephen Johnson's syndrome from them .. it can be quite serious) although they say a sulfa allergy and sulphur intolerance are not necessarily related. So I started reading about sulphur intolerance and found info on it together with a lot of info about MTHFR. Apparently it's unwise for people who have issues with sulphur to try to treat the MTHFR without first getting their sulphur intolerance under control. They can get much sicker when they start taking the B vitamins. From there I decided to get the genetic testing done to see if I also had MTHFR mutations, and also cut out all sulphurous foods that I was still eating like nuts, beans and brassicas, onions and garlic. That really left me only about 10 foods that I could eat but I saw a lot of improvement just from doing that. Then I took my genetic results to my naturopath and asked her if she could help me deal with the MTHFR. The rest is history :-)

Erica, I have seen L-Ornithine mentioned somewhere in my reading. Is ammonia build-up the same as homocysteine buildup? Methylation is so very complicated and as I first read about it, I thought "I can't do this on my own" so that's why I asked the naturopath to treat me. When I first started taking the tiny doses of different B vitamins she prescribed, I had huge reactions (heart racing, palpitations, edgy, etc.) and she knew right away what to suggest that I take with them (COQ10) and it fixed the problem immediately. So glad I had someone to guide me through this. I can't imagine doing it on my own.

Marcia, do you know who diagnosed your neice's sulphur intolerance? I can't imagine it was a regular doctor!
Linda

Gabes-Apg · Post by **Gabes-Apg** » Thu Jul 07, 2016 1:20 am

Linda,
thanks for the update!

It has take me about 2 years of focussed supp protocol to correct my methylation issues.
it is still ongoing for me as I struggle with B6 deficiency and zinc deficiency (due to Pyrolle issues. )

you may be interested in an article that was posted recently.
it states that food intolerance's/allergies may be because of a excess toxins in the body.
as you know a healthy methylation cycle is key for a detoxing to occur properly

it is a bit long but may be of interest
http://qz.com/689806/a-controversial-th ... allergies/

Linda in BC · Post by **Linda in BC** » Fri Jul 08, 2016 10:21 am

I believe that, Gabes. Every once in a while I get a nasty headache for no apparent reason that lasts from 12 to24 hours and then just disappears. I had one last night. It was gone when I woke up, and I just said to my husband this morning that I think they are from detoxing. I know my naturopath had me on something called Unda drops for the first few months to help my liver deal with the detoxing. Thanks for the article. I look forward to reading it.