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Rare Disease; Do you think it can be managed with Paleo?

Answered on August 19, 2014
Created November 12, 2011 at 9:04 AM

After my Father passed away, we asked for an autopsy report to determine what was wrong with him. We have since been informed that it was a very rare, incurable disease called Adult Poly Glucosan Body Disease; linked here http://ghr.nlm.nih.gov/condition/adult-polyglucosan-body-disease Do you thing a paleo diet would make an impact on disease progression? I don't understand much of what is written myself, but I do see a lot about glucose, sugar, glycogen... leading me to believe that is I reduce the sugar load, perhaps things could be managed? Again... I don't know much in this area.

3fc95bca9e723edfbbb72b172798ab49

(1354)

on April 13, 2013
at 01:25 AM

[meta] Simply responding to Travis' comment SHOULD leave him a colored envelope next to his name the next time he logs on, letting him know that someone responded to him.

F074daf8ee19a4c101c533b7fdab708a

(284)

on November 14, 2011
at 04:52 AM

Oh, I see. I sure wish there was a Doctor like you where I am... my Dad had every diagnosis you can think of at one point or another, they finally settled on a few all at once. I guess the one thing is, there is no cure, so I suppose that saves me the anger and regret that would have come with a different disease had it been treatable. Thanks again for taking the time to share your input.

Ed71ab1c75c6a9bd217a599db0a3e117

(25477)

on November 12, 2011
at 10:08 PM

Genetic testing is best but this disease clinically can look like ALS so people get a pretty extensive work up. That is how they wound up getting a nerve and muscle biopsy because the neurologist were trying to figure it out.

F074daf8ee19a4c101c533b7fdab708a

(284)

on November 12, 2011
at 05:24 PM

Oh wait... are these biopsies the only way of positively diagnosing? I am awaiting a call back from the genetic counselor, but was lead to believe that in order to confirm or deny it was just a blood test. I have heard that about the Eastern European Jews, but it must not be exclusive to that group as I read somewhere. My Dad was French Canadian and Dutch...

1a98a40ba8ffdc5aa28d1324d01c6c9f

(20378)

on November 12, 2011
at 05:23 PM

+1 I agree Nance !!!

96bf58d8c6bd492dc5b8ae46203fe247

(37227)

on November 12, 2011
at 05:15 PM

Quilt, you're the best! We need more people like you on this planet.

Ed71ab1c75c6a9bd217a599db0a3e117

(25477)

on November 12, 2011
at 03:56 PM

We have a lot of Eastern European Jews in our area and I think this is why I have. It appears to be tied to that cultural group

F074daf8ee19a4c101c533b7fdab708a

(284)

on November 12, 2011
at 03:50 PM

Well I have no idea how to remind you... but thanks for looking!

F074daf8ee19a4c101c533b7fdab708a

(284)

on November 12, 2011
at 03:49 PM

Wow! I am suprised that you have seen 2 cases considering how rare it is. I still don't quite understand much of what you said, but I will do some reading to see if I can figure it all out. I know one thing, I will do what I can to limit the affects, cause it ain't pretty. Thanks.

Medium avatar

(39831)

on November 12, 2011
at 09:36 AM

I'll do some research into this tomorrow and see if I can find something. Remind me if I forget.

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2 Answers

10
Ed71ab1c75c6a9bd217a599db0a3e117

(25477)

on November 12, 2011
at 03:36 PM

I have actually seen this disease twice in my career. I did sural nerve and gastocnemius biopsies for their diagnosis. It is a mixed Upper and lower motor neuron disease similar in presentation to ALS but not as severe. I would tell you to read my series on CTE and excitotoxins to get more insight on what you might consider to do to mitigate the symptoms of the disease. It is a genetic disease that is autosomal recessive disease. It usually causes a neurogenic bladder and major sexual functioning issues.

The neurologist on these cases had no answers for the patients but did tell both to eliminate all grains and all excitotoxins to limit the effects of the disease. I believe it effects a GBE1 gene. This is a glycogen branching enzyme gene that really ruins muscle and enteric plexi of nerves in the body.

The last guy I biopsied had a 12 can a day habit of diet coke. I told him I thought that was a real bad idea.

F074daf8ee19a4c101c533b7fdab708a

(284)

on November 12, 2011
at 05:24 PM

Oh wait... are these biopsies the only way of positively diagnosing? I am awaiting a call back from the genetic counselor, but was lead to believe that in order to confirm or deny it was just a blood test. I have heard that about the Eastern European Jews, but it must not be exclusive to that group as I read somewhere. My Dad was French Canadian and Dutch...

F074daf8ee19a4c101c533b7fdab708a

(284)

on November 12, 2011
at 03:49 PM

Wow! I am suprised that you have seen 2 cases considering how rare it is. I still don't quite understand much of what you said, but I will do some reading to see if I can figure it all out. I know one thing, I will do what I can to limit the affects, cause it ain't pretty. Thanks.

1a98a40ba8ffdc5aa28d1324d01c6c9f

(20378)

on November 12, 2011
at 05:23 PM

+1 I agree Nance !!!

96bf58d8c6bd492dc5b8ae46203fe247

(37227)

on November 12, 2011
at 05:15 PM

Quilt, you're the best! We need more people like you on this planet.

Ed71ab1c75c6a9bd217a599db0a3e117

(25477)

on November 12, 2011
at 03:56 PM

We have a lot of Eastern European Jews in our area and I think this is why I have. It appears to be tied to that cultural group

Ed71ab1c75c6a9bd217a599db0a3e117

(25477)

on November 12, 2011
at 10:08 PM

Genetic testing is best but this disease clinically can look like ALS so people get a pretty extensive work up. That is how they wound up getting a nerve and muscle biopsy because the neurologist were trying to figure it out.

F074daf8ee19a4c101c533b7fdab708a

(284)

on November 14, 2011
at 04:52 AM

Oh, I see. I sure wish there was a Doctor like you where I am... my Dad had every diagnosis you can think of at one point or another, they finally settled on a few all at once. I guess the one thing is, there is no cure, so I suppose that saves me the anger and regret that would have come with a different disease had it been treatable. Thanks again for taking the time to share your input.

1
6237d4291a84ff3350d7329eb2f89500

on April 13, 2013
at 12:23 AM

I've read that you dont necessarily have to have the GBE gene especially if your of Italian decent. I had a fresh muscle biopsy in detroit a few years ago in which the pathologist reported and confirmed I had Adult Polyglucosan Body disease. I even called him after to make sure he was positive about this diagnosis. There isn't a Doctor in my area who has a clue about this disease. I live everyday not knowing what's wrong with me.Is there any information out there from a Doctor who is willing to help me with my symptoms and support my physical and mental well being. Thank you for your time, Janet Harbey 196 High Meadow Dr. West Spring Field Ma. 01089 413-746-9270 [email protected]

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