Ok this is a brief timeline from when my health problems began up until now. I’d like to know your thoughts on how much you think homozygous MTHFR could be playing a part here, despite my unusual tolerance of folic acid…
2003+ - IBS symptoms, possibly triggered by taking the combined pill (to help with excruciating period pain which I was told was normal)
2006 - Diagnosed with CFS after bad EBV infection
2009 - positive blood test for coeliac disease, but negative biopsy
2011 - ‘IBS’ symptoms worsened to the point of demanding a GI referral- coeliac bloods raised again and positive biopsy this time. Colonoscopy also showed ulcerations; finally diagnosed with Crohn’s and coeliac disease. Ultrasound investigations into abdominal pain incidentally found ovarian endometrioma so my horrific period pains could finally be explained by endometriosis. Also diagnosed with folate deficiency, prescribed 5mg of folic acid- did some research and found about MTHFR, decided not to take it. Prescribed mesalazine which damn near killed me (all the symptoms of salicylism), metronidazole did nothing but make me sick as a dog.
2012 – Prescribed prednisolone, felt 100% human again for the first time in years! Sleeping like a baby, brain fog lifted, creativity and memories came flooding back. Tapered off and began paleo diet- anything to avoid azathioprine. Maintained about 75% wellness on paleo, Crohn’s symptoms completely controlled but only if I was so strict that I could barely eat anything- lost too much weight, sick of meat.
2013 – Sick of struggling (and starving), prescribed Elemental E028 diet. Felt about 90% well.
2014-16 – Mainly paleo + rice but relaxed and included conventional gluten free food items for convenience, maybe one meal per day. Brief periods of feeling like I’m improving, then everything crashes down around me again, usually (but not always) precipitated by a virus or extreme stress/pressure. Journal-keeping like a boss, no obvious causation when I experience improvements. React to stress with ‘adrenal’ type symptoms.
Also been taking LDN from 2013 onwards. I’m not sure how much it does, but I know that I get some weird old anxiety symptoms come back if I skip it for a while, and it seems to hold off ‘full blown flare’ so I’m happy to stick with it for the foreseeable.
----
Recently I started to get worse again and really unable to handle stress, bad adrenal symptoms (insomnia, sweats/shivers/chills, very weak and shaky worse in the mornings) looking back through my diary I realised that I’d not taken my weekly dose of Country Life Active B12 Dibencozide sublingual (200 mcg Folic Acid 200 mcg + 3000 mcg adenosylcobalamin) for over 4 weeks. Now I can’t remember how I came to compromise on the folic acid content, but I think whatever research I’d done at the time suggested that AdoCbl was by far the best form to take, and I couldn’t find another in my price range which I trusted to be gluten free.
I have also had folic acid in the Elemental E028 drinks in the past which would have been giving me daily dosages of 334 mcg Folacin (I think this is basic synthetic folic acid?) + 8 mcg cyanocobalamin, spaced out across 8 cartons of formula. I felt wonderful on the drinks, almost 100%, they really gave me my life back for a while.
Yasko methylation panel results:
SHMT / C1420T -/- G
AHCY / 1 +/- Hetero
AHCY / 2 +/- Hetero
AHCY / 19 +/- Hetero
MTHFR / C677T +/+ T
MTHFR / A1298C -/- A
MTHFR / 3 -/- C
MTR / A2756G +/- Hetero
MTRR / A66G +/- Hetero
MTRR / H595Y -/- C
MTRR / K350A +/- Hetero
MTRR / R415T -/- C
MTRR / S257T -/- T
MTRR / 11 +/- Hetero
BHMT / 1 -/- A
BHMT / 2 +/- Hetero
BHMT / 4 +/- Hetero
BHMT / 8 +/- Hetero
CBS / C699T -/- C
CBS / A360A -/- C
CBS / N212N -/- C
COMT / V158M -/- G
COMT / H62H -/- C
COMT / 61 -/- G
SUOX / S370S -/- C
VDR / Taq1 -/- C
VDR / Fok1 +/- Hetero
MAO A / R297R +/- Hetero
NOS / D298E +/+ T
ACAT / 1-02 -/- G
So does anyone know how I could be homozygous C677T, but able to feel better (or even well, in the case of the elemental diet) when consuming folic acid?! All thoughts very much appreciated, and thank you for reading if you got this far!
2003+ - IBS symptoms, possibly triggered by taking the combined pill (to help with excruciating period pain which I was told was normal)
2006 - Diagnosed with CFS after bad EBV infection
2009 - positive blood test for coeliac disease, but negative biopsy
2011 - ‘IBS’ symptoms worsened to the point of demanding a GI referral- coeliac bloods raised again and positive biopsy this time. Colonoscopy also showed ulcerations; finally diagnosed with Crohn’s and coeliac disease. Ultrasound investigations into abdominal pain incidentally found ovarian endometrioma so my horrific period pains could finally be explained by endometriosis. Also diagnosed with folate deficiency, prescribed 5mg of folic acid- did some research and found about MTHFR, decided not to take it. Prescribed mesalazine which damn near killed me (all the symptoms of salicylism), metronidazole did nothing but make me sick as a dog.
2012 – Prescribed prednisolone, felt 100% human again for the first time in years! Sleeping like a baby, brain fog lifted, creativity and memories came flooding back. Tapered off and began paleo diet- anything to avoid azathioprine. Maintained about 75% wellness on paleo, Crohn’s symptoms completely controlled but only if I was so strict that I could barely eat anything- lost too much weight, sick of meat.
2013 – Sick of struggling (and starving), prescribed Elemental E028 diet. Felt about 90% well.
2014-16 – Mainly paleo + rice but relaxed and included conventional gluten free food items for convenience, maybe one meal per day. Brief periods of feeling like I’m improving, then everything crashes down around me again, usually (but not always) precipitated by a virus or extreme stress/pressure. Journal-keeping like a boss, no obvious causation when I experience improvements. React to stress with ‘adrenal’ type symptoms.
Also been taking LDN from 2013 onwards. I’m not sure how much it does, but I know that I get some weird old anxiety symptoms come back if I skip it for a while, and it seems to hold off ‘full blown flare’ so I’m happy to stick with it for the foreseeable.
----
Recently I started to get worse again and really unable to handle stress, bad adrenal symptoms (insomnia, sweats/shivers/chills, very weak and shaky worse in the mornings) looking back through my diary I realised that I’d not taken my weekly dose of Country Life Active B12 Dibencozide sublingual (200 mcg Folic Acid 200 mcg + 3000 mcg adenosylcobalamin) for over 4 weeks. Now I can’t remember how I came to compromise on the folic acid content, but I think whatever research I’d done at the time suggested that AdoCbl was by far the best form to take, and I couldn’t find another in my price range which I trusted to be gluten free.
I have also had folic acid in the Elemental E028 drinks in the past which would have been giving me daily dosages of 334 mcg Folacin (I think this is basic synthetic folic acid?) + 8 mcg cyanocobalamin, spaced out across 8 cartons of formula. I felt wonderful on the drinks, almost 100%, they really gave me my life back for a while.
Yasko methylation panel results:
SHMT / C1420T -/- G
AHCY / 1 +/- Hetero
AHCY / 2 +/- Hetero
AHCY / 19 +/- Hetero
MTHFR / C677T +/+ T
MTHFR / A1298C -/- A
MTHFR / 3 -/- C
MTR / A2756G +/- Hetero
MTRR / A66G +/- Hetero
MTRR / H595Y -/- C
MTRR / K350A +/- Hetero
MTRR / R415T -/- C
MTRR / S257T -/- T
MTRR / 11 +/- Hetero
BHMT / 1 -/- A
BHMT / 2 +/- Hetero
BHMT / 4 +/- Hetero
BHMT / 8 +/- Hetero
CBS / C699T -/- C
CBS / A360A -/- C
CBS / N212N -/- C
COMT / V158M -/- G
COMT / H62H -/- C
COMT / 61 -/- G
SUOX / S370S -/- C
VDR / Taq1 -/- C
VDR / Fok1 +/- Hetero
MAO A / R297R +/- Hetero
NOS / D298E +/+ T
ACAT / 1-02 -/- G
So does anyone know how I could be homozygous C677T, but able to feel better (or even well, in the case of the elemental diet) when consuming folic acid?! All thoughts very much appreciated, and thank you for reading if you got this far!