Hello everyone,
I received my 23andme results 2 months ago and have tried to work out a treatment myself by reading posts in the forum, http://mthfrliving.com/ and on http://www.heartfixer.com/.
I have had some success:
Low sulfur/vegan diet:
=> ALAT/ASAT back to normal range of 30 U/l after being as high as around 300 U/l for 1.5 years on a high protein/SCD type diet for curing SIBO (which is now cured )[falling to an average of about 80 U/L and 120 U/L after quitting oral cromolyn sodium, which is a mast cell stabilizer to the surprise of my mastocytosis specialist who thought something "as harmless as cromolyn sodium could not raise liver transaminases...];
=>chronic gastritis that painfully persisted for years vanished;
=>food is finally digested in stool and uncontrolled scary weight loss (low point of 49.5 kg/176cm) with inability to gain weight despite eating up massive amounts has stopped (56kg without much effort);
=>waking up feeling completely hungover from intestinal gases has become a lot less severe;
=>MCS less severe
I also take molybdenum (100-200µg) whenever I do get bloating and a hungover feeling. Gases probably arise for the following reason: I have a severe gut dysbiosis, which 3 independent flora tests over the past 2.5 years have shown. Despite taking probiotics, the last one in February came out as NO(!) Lactobacilli, Bifido Bacteria and other good ones, normal-low candida, while HIGH Clostridium species(which live off protein which is probably why I suffer so much when ingesting protein/have had a protein aversion pretty much all my life without declaring is as a certain diet but just following my instincts before I got ill).
I am very excited about the fact that some symptoms have vanished/improved and would recommend for others to try it as I didn't even expect the results...
Before I received my results from geneticgenie, which are as follows:
COMT V158M (+/-)
COMT H62H (+/-)
[COMT P199P (-/-)]
VDR Bsm (+/-)
VDR Taq (+/-)
MAO A R297R (+/-)
[ACAT1-02 (-/-)]
[MTHFR C677T (-/-)]
MTHFR 03 P39P (+/-)
MTHFR A1298C (+/-)
**MTR A2756G (+/+)**
MTRR A66G (+/-)
[MTRR K350A (-/-)]
MTRR A664A (+/-)
BHMT-02 (+/-)
BHMT-08 (+/-)
[AHCY-01 and -19 (-/-)]
[CBS C699T (-/-)]
**CBS A360A (+/+)**
{0. I would LOVE for someone, who has a deeper understanding than me on the results, to comment on them/suggest a suitable methylation protocol for me by the way... Or recommend a knowledgeable health practitioner near Berlin, Germany.=P}
The reason I went for the low sulfur CBS protocol first is not only because I have **CBS A360A (+/+)**, which seems to be the less important CBS mutation and CBS C699T is (-/-) so should work, but also because I have severe Mast Cell Activation Syndrome (and cutaneous mastocytosis) and a lack in BH4 is apparently linked to mast cell degranulation
(http://mthfrliving.com/health-conditions/mast-cell-activation-disorder-histamine-intolerance/).
However, some things do puzzle me: After starting my protocol, my lab results changed quite dramatically {showing abnormal results only mainly}:
*BEFORE / AFTER ABOUT 2 MONTHS* [RANGE]
Erythrocytes 13.40 / 11.7- [12-16 g/dl]
Leucocytes 2.83- / 3.55- [3.98-10.04bc/nl]
*MCV 97.4+ /105.6+ [79.4-94.8 fl]
MCHC 32.6 / 29.5- [32.2-35.5 g/dl]
ASAT 55+ / 30 [10-35 U/l]
ALAT 103+ / 31 [10-35 U/l]
Creatinine 0,59 / 0,49- [0.5-0.9 mg/dl]
*Serotonin - / 264+ [40/200 µg/l] despite low tryptophan diet before
Vit B12 476 / 425 [191-663 pg/ml]
Methylmalonic acid 158++(pathologically high) [9-32 µg/l]
i.e. 1340 nmol/L [<243 nmol/L]
Active-B12 (Holotranscobalamin) >128+ (path. high) [0-50 pmol/l]
Some other typical results include:
Folic acid above measurable;
elevated basophils and eosinophils;
leucopenia;
normal ferritin but low coeruloplasmin;
low CRP;
high triglycerides;
low to low-normal FT3 and FT4; high normal-high TSH;
low-normal copper in serum;
low-normal 25 OH Vit D (substituted);
without substitution no estradiol, lh;
low testosterone;
normal blood histamine;
normal DAO;
very low B-lymphocytes (CD19)
1.) I thought that by
http://www.heartfixer.com/AMRI-Nutrigenomics.htm ,
"low BH4 [causing mast cell activation], leading to insufficient dopamine and serotonin production" but my serotonin is always high... though this is peripheral serotonin... does the source talk about brain serotonin only? Hm! I'm not usually the depressed type unless I'm heavily inflamed or have a really bad histamine reaction (which is also inflammation...)
2.) No matter how much I research, I do not get the fact that my Vit B12 always seems in normal range [or even slightly above maybe due to substitution at the time though], while my Methylmalonic acid 158++(pathologically high) value suggests immense B12 deficiency (having been a vegetarian/meat averse for all my life and having gastritis and bowel inflammation, this would make sense) while the Active-B12 (Holotranscobalamin) >128+ (path. high) value suggests no deficiency AT ALL! Apparently if creatinine is high, this can explain false values but it's absolutely not. But then MCV 105.6 suggests macrocytic anemia I guess?
So if anyone could give me an explanation of this/tell me whether I should supplement B12 and which kind, that'd be AMAZING!! (The endocrinologists don't comment on the results, sadly/tell me I have weird results but don't do anything about it...)
3.) I have tried taking pure encapsulations b-complex plus
http://www.pureencapsulations.com/b-complex-plus.html
which has l-methylfolate and methylcobalamine in it. However, I seem to be getting ADHD like symptoms and a huge urge to move (too much for my current strength) and mast cell activation when taking it. The symptoms increase the longer I take it but vanish after taking it for a little while.
I would love to hear any thoughts on this and suggestions on what to supplement instead. (I tried injecting B12 as cyanocobalamine some time ago which didn't seem to make much of a difference neither negatively or positively...)
4.) Should I avoid Methylfolate due to my Folate levels always being above measurable even without substitution? Do you have an explanation for this?
As you can see, I am very much stuck despite trying very had. My main symptoms are gastrointestinal (bloating linked with fatigue and muscle cramps/stiffness and difficulty to focus, constipation, sometimes diarrhea, inflammation/mucus when eating dairy, soy, medications, other stuff I cannot handle, difficulty ingesting proteins), mast cell degranulation/cutaneous mastocytosis (flush, edema, increase heart rate, coordination problems, brain fog, diarrhea, skin rash, headaches, mucus,...), MCS, fatigue, osteopenia, amenorrhea. It got really bad 3 years ago. I spent the most of 1.5 years in bed and inflamed. The only thing that helped for a little while back then was a course of Rifaximin, which made me feel amazing until I started "just eating whatever" like the doctors had recommended and the symptoms came back/got much worse after a course of then-prescribed Metronidazole.
Back on my legs now most days after figuring out a more suitable diet/dropping supplements/medication i cannot handle/taking it easy whenever I can/avoiding triggers and chemicals but I am still nowhere fit and would like to be able to have a job/good social life again etc. especially as I am only 26 years old.
I would REALLY appreciate ANY advice even to parts of my mystery and I am of course happy to help out where I can. Also, I have tons of results here so if you would need anything else to clarify my case, just let me know.
Thanks so so much for taking the time to read this!
Have a nice weekend!
I received my 23andme results 2 months ago and have tried to work out a treatment myself by reading posts in the forum, http://mthfrliving.com/ and on http://www.heartfixer.com/.
I have had some success:
Low sulfur/vegan diet:
=> ALAT/ASAT back to normal range of 30 U/l after being as high as around 300 U/l for 1.5 years on a high protein/SCD type diet for curing SIBO (which is now cured )[falling to an average of about 80 U/L and 120 U/L after quitting oral cromolyn sodium, which is a mast cell stabilizer to the surprise of my mastocytosis specialist who thought something "as harmless as cromolyn sodium could not raise liver transaminases...];
=>chronic gastritis that painfully persisted for years vanished;
=>food is finally digested in stool and uncontrolled scary weight loss (low point of 49.5 kg/176cm) with inability to gain weight despite eating up massive amounts has stopped (56kg without much effort);
=>waking up feeling completely hungover from intestinal gases has become a lot less severe;
=>MCS less severe
I also take molybdenum (100-200µg) whenever I do get bloating and a hungover feeling. Gases probably arise for the following reason: I have a severe gut dysbiosis, which 3 independent flora tests over the past 2.5 years have shown. Despite taking probiotics, the last one in February came out as NO(!) Lactobacilli, Bifido Bacteria and other good ones, normal-low candida, while HIGH Clostridium species(which live off protein which is probably why I suffer so much when ingesting protein/have had a protein aversion pretty much all my life without declaring is as a certain diet but just following my instincts before I got ill).
I am very excited about the fact that some symptoms have vanished/improved and would recommend for others to try it as I didn't even expect the results...
Before I received my results from geneticgenie, which are as follows:
COMT V158M (+/-)
COMT H62H (+/-)
[COMT P199P (-/-)]
VDR Bsm (+/-)
VDR Taq (+/-)
MAO A R297R (+/-)
[ACAT1-02 (-/-)]
[MTHFR C677T (-/-)]
MTHFR 03 P39P (+/-)
MTHFR A1298C (+/-)
**MTR A2756G (+/+)**
MTRR A66G (+/-)
[MTRR K350A (-/-)]
MTRR A664A (+/-)
BHMT-02 (+/-)
BHMT-08 (+/-)
[AHCY-01 and -19 (-/-)]
[CBS C699T (-/-)]
**CBS A360A (+/+)**
{0. I would LOVE for someone, who has a deeper understanding than me on the results, to comment on them/suggest a suitable methylation protocol for me by the way... Or recommend a knowledgeable health practitioner near Berlin, Germany.=P}
The reason I went for the low sulfur CBS protocol first is not only because I have **CBS A360A (+/+)**, which seems to be the less important CBS mutation and CBS C699T is (-/-) so should work, but also because I have severe Mast Cell Activation Syndrome (and cutaneous mastocytosis) and a lack in BH4 is apparently linked to mast cell degranulation
(http://mthfrliving.com/health-conditions/mast-cell-activation-disorder-histamine-intolerance/).
However, some things do puzzle me: After starting my protocol, my lab results changed quite dramatically {showing abnormal results only mainly}:
*BEFORE / AFTER ABOUT 2 MONTHS* [RANGE]
Erythrocytes 13.40 / 11.7- [12-16 g/dl]
Leucocytes 2.83- / 3.55- [3.98-10.04bc/nl]
*MCV 97.4+ /105.6+ [79.4-94.8 fl]
MCHC 32.6 / 29.5- [32.2-35.5 g/dl]
ASAT 55+ / 30 [10-35 U/l]
ALAT 103+ / 31 [10-35 U/l]
Creatinine 0,59 / 0,49- [0.5-0.9 mg/dl]
*Serotonin - / 264+ [40/200 µg/l] despite low tryptophan diet before
Vit B12 476 / 425 [191-663 pg/ml]
Methylmalonic acid 158++(pathologically high) [9-32 µg/l]
i.e. 1340 nmol/L [<243 nmol/L]
Active-B12 (Holotranscobalamin) >128+ (path. high) [0-50 pmol/l]
Some other typical results include:
Folic acid above measurable;
elevated basophils and eosinophils;
leucopenia;
normal ferritin but low coeruloplasmin;
low CRP;
high triglycerides;
low to low-normal FT3 and FT4; high normal-high TSH;
low-normal copper in serum;
low-normal 25 OH Vit D (substituted);
without substitution no estradiol, lh;
low testosterone;
normal blood histamine;
normal DAO;
very low B-lymphocytes (CD19)
1.) I thought that by
http://www.heartfixer.com/AMRI-Nutrigenomics.htm ,
"low BH4 [causing mast cell activation], leading to insufficient dopamine and serotonin production" but my serotonin is always high... though this is peripheral serotonin... does the source talk about brain serotonin only? Hm! I'm not usually the depressed type unless I'm heavily inflamed or have a really bad histamine reaction (which is also inflammation...)
2.) No matter how much I research, I do not get the fact that my Vit B12 always seems in normal range [or even slightly above maybe due to substitution at the time though], while my Methylmalonic acid 158++(pathologically high) value suggests immense B12 deficiency (having been a vegetarian/meat averse for all my life and having gastritis and bowel inflammation, this would make sense) while the Active-B12 (Holotranscobalamin) >128+ (path. high) value suggests no deficiency AT ALL! Apparently if creatinine is high, this can explain false values but it's absolutely not. But then MCV 105.6 suggests macrocytic anemia I guess?
So if anyone could give me an explanation of this/tell me whether I should supplement B12 and which kind, that'd be AMAZING!! (The endocrinologists don't comment on the results, sadly/tell me I have weird results but don't do anything about it...)
3.) I have tried taking pure encapsulations b-complex plus
http://www.pureencapsulations.com/b-complex-plus.html
which has l-methylfolate and methylcobalamine in it. However, I seem to be getting ADHD like symptoms and a huge urge to move (too much for my current strength) and mast cell activation when taking it. The symptoms increase the longer I take it but vanish after taking it for a little while.
I would love to hear any thoughts on this and suggestions on what to supplement instead. (I tried injecting B12 as cyanocobalamine some time ago which didn't seem to make much of a difference neither negatively or positively...)
4.) Should I avoid Methylfolate due to my Folate levels always being above measurable even without substitution? Do you have an explanation for this?
As you can see, I am very much stuck despite trying very had. My main symptoms are gastrointestinal (bloating linked with fatigue and muscle cramps/stiffness and difficulty to focus, constipation, sometimes diarrhea, inflammation/mucus when eating dairy, soy, medications, other stuff I cannot handle, difficulty ingesting proteins), mast cell degranulation/cutaneous mastocytosis (flush, edema, increase heart rate, coordination problems, brain fog, diarrhea, skin rash, headaches, mucus,...), MCS, fatigue, osteopenia, amenorrhea. It got really bad 3 years ago. I spent the most of 1.5 years in bed and inflamed. The only thing that helped for a little while back then was a course of Rifaximin, which made me feel amazing until I started "just eating whatever" like the doctors had recommended and the symptoms came back/got much worse after a course of then-prescribed Metronidazole.
Back on my legs now most days after figuring out a more suitable diet/dropping supplements/medication i cannot handle/taking it easy whenever I can/avoiding triggers and chemicals but I am still nowhere fit and would like to be able to have a job/good social life again etc. especially as I am only 26 years old.
I would REALLY appreciate ANY advice even to parts of my mystery and I am of course happy to help out where I can. Also, I have tons of results here so if you would need anything else to clarify my case, just let me know.
Thanks so so much for taking the time to read this!
Have a nice weekend!
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