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issie

B-1-----Dysautonomia, Autism, Mito, Miagraines, Issues With Wheat,milk,sugar - Problems With Glutamates - Heavy Metals --Epigenetics

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This article has so much information in it. Interesting that they have found epigenetics to be at play here with this family. Problems with autism, dysautonomia, mitochondrial dysfunction, issues with glutamate, heavy metals, autoimmune dysfunction and so many more things. Also, connection thought to be from vaccines. This family found that diet changes and supplemental B-1 was very helpful.

I found it interesting that things got worse when they consumed dairy, wheat and sugar ---as these increase the need for B1. Many of us have found that limiting or eliminating these things have helped us. I know when I added Benfotiamine I noticed that I started to feel better and have hardly any cravings for sugar.

This is a thought provoking article. . . . .

http://www.hindawi.c...rt/2011/129795/

Issie

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Issie,

I've read that a GF and CF diet limits inflammation and as a added bonus, those with antibodies to folate receptors (somewhat common with chronic illness per Dr Kendal Stewart who links it to many neuroimmune disorders, way beyond Autism.) have to cut out casein. Can't find the source article right now, but here are a few links on the topic. The risk factor is highest in those who were NOT breastfed as a baby, as they tend to have these antibodies. Dr Quatros is credited with the original scientific work. Dr Stewart tests folate in blood to ascertain liklihood of these antibodies to folate receptors.

Lyn

http://www.mombu.com/medicine/medicine/t-folic-acid-receptor-autoantibodies-vitamin-d3-and-milk-consumption-in-autoimmune-disease-autoimmune-diet-cancer-estrogen-5916411-last.html

http://questioning-answers.blogspot.com/2012/01/dont-panic-folate-receptor.html

http://www.thestaracademy.co.za/wp-content/uploads/2011/03/cfa-and-autism-rossignol-quatros.pdf

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I'm a little surprised that this hasn't gotten more response. Anyone tried more B1 to see if it makes a big difference? If you look up the symptoms of B1 deficiency - it is so close to what we deal with with POTS. There has been another thread a few years ago about someone finding that thiamine made a big difference with their POTS.

Issie

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That's interesting Anna. I wonder if that would be the cause of other issues with assimilatins of other B vitamins too. I know, the doc. that I'm seeing with the vegan diet test you for B12 and Vit D. These are two things he has you supplement. But, I'm also supplementing B1 and was before I saw him. I find that it gives me more energy. Not until I got my 23&me test results and realized that I could have enough circulating B12 in my blood but not be getting the benefit from it --because of the issues with methylation pathways - did I start supplementing with the methyl form of B12. I couldn't take the other kind ---it made me sick. But, am okay with the methyl form of B12.

Issie

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Hi issie,

I tried the active form of thiamine for about 3 months earlier this year but didn't notice anything. I'm not sure what I'd be looking

for tho. My oi has responded to taking mc meds but it's not consistent. Meaning I can stand or sit without feeling the

urge to lay down for hours at a time. I did one pmttt and passed too. This is the first treatment I've tried that stopped my oi. I have angioedema, internal which is why I didn't recognize my pain was from swelling, so it's a given that mc meds would help.

Most of my symptoms, except oi, fatigue and pem

were alleviated by changing my diet to gfcfsf, chemical free. Then the paleo diet helped me with what I call pre-seizure

feelings. I get shakey like I do from hypoglycemia but eating won't resolve it. Klonopin or eating and laying down

with my eyes closed in silence for usually an hour will.

I just tried eating some "gf" processed foods again recently and again feel like I'm on the verge of

a seizure. I had a two hour seizure last year but mostly I get mild petite mals frequently throughout the day.

I'm super sensitive to gluten, had ataxia for 16 1/2 years, so I suspect this is behind my grain (gluten cc?) / seizure connection. Either that or my hyperinsulinemia. Or both ..

I had a positive response, improved muscle weakness, to adenosyl cobolamin but that's it for b's. My b12 was low normal after

I started walking normally. So b12 didn't seem to be involved.

Tc .. D

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Doozly,

Do you know anything about testing for these folate autoantibodies? I would be bold enough to ask my PCP to order these tests if it is something on Labcorp's list.

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Sue, finding out if you have mutations in MTHFR genes can help determine if you are deficient in folate. The idea is that the body doesn't process it properly and it take the methyl type of folate for your body to break it down properly - if there is a mutation in the MTHFR gene.

Issie

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Issie,

I know that I am compound heterozygous for the MTHFR genes, so have an issue with folate to begin with. Maybe I am not understanding, but Doozly is talking about autoantibodies to folate receptors in the brain. I was wondering if there was a test for that problem. I see in some of the studies it shows up as autoantibodies to receptors and/or blockers.

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I'm almost fully vegan these days and have never felt better as far as diet related symptoms. If I do ever eat eggs or dairy which is rare I want to vomit and my heart rate goes up, I think diet Is a lot more important than people expect.

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I'm almost fully vegan these days and have never felt better as far as diet related symptoms. If I do ever eat eggs or dairy which is rare I want to vomit and my heart rate goes up, I think diet Is a lot more important than people expect.

Yes, I agree. I've been totally vegan for a full month now.

Issie

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Sue,

Sorry it has taken me a while to get back on this forum. Dr Kendal Stewart mentioned that the test for these antibodies to folate receptors is very expensive, so he starts with folate testing and uses the patient history to determine if these autoantibodies are at play. If you watch Kendal Stewart's You Tube videos, there are 5 of them in 15 minute increments of a talk he gave last year in Charlotte, NC on MTHFR and methylation issues and neuroimmune disorders, you will hear his comments on these autoantibodies.

Lyn

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