GAPS/SCD or vegan on methylation protocol

[Astrid]

I'm new her and I'm a little bit confuses about diet. I had a flare up of CFS/MCS after a year of vegan raw food. The scd diet did some healing but the GAPSdiet did allot of healing. After two years of SCD and one and a half year of GAPS I reached a plateau where no more healing accursed. I think I'm healed for 70% on the diet only.
At the same tome I still have allot off problems that I like to leave behind me also. I've read the book of Martin Pall and most of his supplements give me a set back. So while on the diet I used no supplements except from vitK, god liver oil and Vit D3.
Because I want to heal the last part of my CFS and not fall back again I start studying MRHFR. I did a test at 23andme to find out I have several Methylation blocks in my genes. What I did read on the hearthfixer site is that he recommends a vegan diet. My experience with that is not so good, so I hesitate to go on that pad again. Important seem to be how much sulphate you excrete in you urine. You can measure that with sticks that people in the US can buy on de dramyyakso.com. I live in the Netherlands and cant find a supplier here. Anyone knows where to buy these. Here is my 23andme profile. I only put the mutations in.

CBS A360A +/-
CBS C699T +/-
COMT H62H -/+
COMT V158M +/-
MAO A R297R +/+
MTHFR C677T -/+
MTHFR A1298C -/+
MTRR A66G -/+
MTRR-11 A664A +/+
VDR BSM/TAG +/-
BHMT-04 N/A +/+

 

[dannybex]

Hi Astrid,

I can't help you with the genetics (hopefully Rich can stop by), but in my opinion, if I were you, I would stay far away from a vegan diet. That's surprising that the doctor on the heartfixer site recommends it, especially since it's almost impossible to get any b12 by eating vegan.

Vegan can be "good" for a brief period because it tends to be a "cleansing" diet. But it's not a "building" diet -- which is what we need. Your experience of doing better with the other diets suggests you should not go back to vegan.

Best,

Dan

 

[Astrid]

Thanks Dan

This doctor James Roberts recommend a vegan diet for CBS mutations because CBS initiates the trans-sulfuration pathway, converting homocysteine in to cystathionine and its downstream metabolites. The C699T and (to a somewhat lesser extent) A360A defects are associated with CBS up regulation. Homozygotes (+/+) will be more severely affected than will be individuals heterozygous (+/-) for a CBS abnormality. James Roberts treat CBS ( +) individuals with dietary animal protein and sulfate restriction and supplements designed to neutralize ammonia and speed up clearance of sulfite/sulfate. (Molybdenum and yuccaroot). I'm heterozygous for both so less severe effected. But I know I cannot tolerate NAC, MSM, en sulfercontaining drugs like dmsa, garlic, coffee, whey protein and sulfites. So there seem to be something in it. And I have a history with very severe mercurypoisening.
But when you go to the vegan version of his diet you seem to be getting allot of nuts and soya. I don't feel good on that.
When you have urine sulphate sticks you can measure how much animal protein you can take. Here in the Netherlands I cannot find these sticks. But you can get sulphate measurement stick for aquaria. I hope you can use those for urine to.
On the GAPSdiet you eat allot of animalprotien, bud you can cut it back by eating more animalfat and cocos- and oliveoil without leaving the diet pronciples. I'm just looking for the best option to start with without making me more sick.

Astrid

 

[dannybex]

Okay, I guess that makes a little sense. However plant foods contain a lot of sulfur as well. I think Rich slightly disgrees with the protein restriction issue, but for some it may indeed be critical and helpful to reduce protein, at least at first.

I had the opportunity to consult with a doc for free who is highly knowledgeable about the CBS issues, but haven't been able to follow up due to finances -- i.e., zero finances. I feel bad because she put in a lot of work and time trying to help me, but now I feel like I can't ask for any more help without paying her regular (and well deserved) fees.

I have the CBS A360A +/+. Unfortunately I haven't been able to tolerate the extra fat that I need -- especially olive or coconut oils, specifically because they're both very high in salicylates. argh...

 

[Lynn_M]

Dannybex,
I have a friend I'm trying to help with CFS. She also is CBS A360A +/+. Where did you find out about the salicylate problems with that mutation? Could you confirm for me that GG is the mutation?

 

[dannybex]

Hi Lynn,

I'm not sure there is a direct connection between the CBS mutation and salicylates -- there very well may be -- often people on the autism spectrum have both issues. It's just so difficult to keep all the pieces of the puzzle straight, especially w/brain fog issues. Angela, a.k.a. "Greenshots" here on the forums, is the go-to genius regarding the CBS issue...hopefully she'll see this and can comment.

GG -- I'm not sure what you mean by that?

 

[Lynn_M]

Dannybex,
Since you mentioned your CBS A360A+/+, and then said you couldn't tolerate the extra fat you need, esp. olive and coconut oil, because they're both very high in salicylates, I thought there was a link between CBS A360A+/+ and salicylate intolerance. Guess that was an incorrect assumption on my part.

My question about GG is that my friend's 23andMe results said she is GG for her CBS A360A alleles. I saw a reference somewhere that said CC is the wild-type variant, but I wasn't sure I was interpreting that correctly, so I was asking if GG is the +/+ mutation.

My friend is heterozygous for A1298C and, if I'm interpreting correctly, homozygous for CBS A360A +/+ and CBS C699T +/+. I'm trying to find out information about the impact of those mutations, and particularly if they would account for her intolerance of methylcobalamin.

 

[dannybex]

Hi Lynn,

Thanks for the explanation re the GG thing.

You're very kind to be helping your friend -- it is indeed so complex and complicated. The practitioner that I had a consult with back in February (that Greenshots recommended) suggested to me that more of the supplement issues tend to come from the b12 rather than the folates...but of course that could vary depending on other genetics. She also stresses the need to start 'with crumbs'.

I had tons of overstimulation/anxiety/almost suicidal late 2010 -- finally simmering down somewhat by July 2011, but the "doc" I was seeing then greatly overprescribed all sorts of b12 and folates -- and, in hindsight, I was eating a LOT of high-salicylate foods at the time, which definitely didn't help at all.

Best of luck.