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Leigh's Syndrome And Gluten?
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 Does anyone know someone who has this rare neurological disorder? I have a brother who has leigh's syndrome and am trying to see if there could be a possible link to celiac or gluten intolerance. I recently discovered that I have a strong intolerance, haven't been tested yet, but my health has tremendously improved since removing gluten. My family history is full of symptoms like type 1 diabetes, infertility, arthritis, dental issues, obesity/overweight, acne, poor vision, and more. No one has ever thought of getting checked and most don't even know what gluten is. I'm the first to go gluten free and research the subject.

 

 My brother got the chickenpox virus when he was a year old and that is what set off his Leigh's Syndrome.  For years they weren't sure exactly what was wrong with him. The doctors thought he would only live to 10. He is 30 now, but extremely dibelitated in a wheel chair.  I've read a lot on how a Gluten Intolerance can cause neurological disorders and am wondering if that could be related to something like Leigh's? It's one of those rare diseases that is linked to genes and mitochondrial disease, which in turn has been linked to food intolerance.

 

 

Any help would be appreciated.

 

Thanks,

Brandon

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Do you know the genes associated with Leigh's syndrome?

 

I am a firm believer that a gluten free diet helps many auto-immune issues.  I have seen a dramatic change in a long term MS patient who went gluten, dairy free and cut sugar.l

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Do you know the genes associated with Leigh's syndrome?

 

I am a firm believer that a gluten free diet helps many auto-immune issues.  I have seen a dramatic change in a long term MS patient who went gluten, dairy free and cut sugar.l

 

I found this: The specific mtDNA defect that is thought to be responsible for some

cases of Leigh syndrome, mtDNA nt 8993, is associated with the ATPase 6 gene.

An affected mother passes it along to all of her children, but only the

daughters will pass the mutation onto the next generation.

 

And this: The usual form of Leigh syndrome is inherited as an autosomal recessive genetic trait. It has been linked to a genetic defect in one of two genes known as E2 and E3, which cause either a deficiency of the enzyme pyruvate dehydrogenase, or an abnormality in other enzymes that make pyruvate dehydrogenase work

 

The problem is he's been on a feeding tube for many years and I'm trying to find out what is in his liquid food.

 

Thanks!

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There are other's on the board that are much better at understanding and interpreting genetics.

 

Those are not the usual genetic tests looked at for Celiac.  Primary Celiac genes are DQ2 and DQ8.  (That is really basic, just as an example, many more genes are looked at.)

 

One of the first things that comes to my mind is Pernicious anemia.  The gut lining lacks the intrinsic factor to absorb and process vitamin B12.  B12 defiency is linked to nuerological damage.

Non Celiac Gluten Intolerance is your key word for further research.  Testing for Celiac is negative, but yet gluten is damaging (in more of a nuerological way) is just starting to be recognized by the medical community.

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    • I havent used it, not much of a baker tbh, but this one looks good: http://alittleinsanity.com/gluten-free-pie-crust-recipe/
    • As you say, there's no test, it's diagnosed by exclusion, so there's no metrics to check to assess compliance other than anecdotal response to symptoms. Conversely, I've not seen anything that says that NCGI can resolved or be cured either.  This paper gives a good summation.  Basically, there's not much research period! That is changing though, I think there's research underway which could help give answers.
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    • I see no one has responded to your query.  Unfortunately I have yet to try making a pie crust.  It was something I never mastered before going gluten free.  Have you looked on Pinterest?  You might find something there.
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