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Celiac And Fabry Disease


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3 replies to this topic

#1 angieInCA

 
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Posted 15 October 2011 - 12:06 PM

My sister and nephew were recently diagnosed with Fabry Disease. They were both tested for celiac some time ago and the results were negative but they were eating gluten light at the time. I will be tested for Fabry disease on Monday.

My sister and nephew has the same intestinal issues as a celiac and feel better when they are gluten free. We believe they are gluten intollerent and maybe have Celiac Disease.

My real question is has anybody seen or read about or have Fabry Disease in conjunction with Celiac Disease?
We have been researching but haven't found anything that really relates the two.

Any info would be appreciated.
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Transplanted Southerner in Sunny So.Cal.
Misdiagnosed 47 years
Diagnosed Gluten Intollerent Aug. 22. '08
Blood Tests Weak Positive to Negative probably due to low Gluten intake for 8 weeks before testing.
Opted not to have Biopsy.
Positive DH testing Oct. 30,'08
Gluten free since Oct. 28, '08

Diagnosed with Fibromyalgia May 10,'13


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#2 Gluke

 
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Posted 25 May 2013 - 10:16 AM

Hi,

 

I came across your post after a google search for "Gluten Fabry's Disease" and saw you (kinda unsurprisingly) didn't have any responses in the last several months, so I figured I'd throw in my two cents.

 

I have not been diagnosed with Celiac disease, but I was diagnosed with Fabry's just about 10 years ago. Fabry's is very idiosyncratic in terms of who gets which symptoms and how bad. Unlike many Fabbers I had no issues with upper GI problems but I would guess anecdotally that my neuropathic pain symptoms are worse than most (early childhood onset and requiring a high doses of drugs to keep manageable). I had had near constant lower GI problems, but those have practically been eliminated with enzyme replacement therapy (Fabrazyme).

 

So why am I here?

 

Several weeks ago I went off gluten as a shot-in-the-dark way of seeing if I could control some eczema. Well, control my eczema it didn't, but by neuropathic Fabry's pain has been cut in half! I have been in much less pain and have been much more mobile than I can recall being in years. I therefore suspect some latent gluten sensitivity impacted some of the Fabry's neuropathy, or that the Fabry's neuropathy itself is gluten sensitive.

 

I hope you're doing well. Good luck on your personal health journey.


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#3 frieze

 
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Posted 27 May 2013 - 06:32 AM

My sister and nephew were recently diagnosed with Fabry Disease. They were both tested for celiac some time ago and the results were negative but they were eating gluten light at the time. I will be tested for Fabry disease on Monday.

My sister and nephew has the same intestinal issues as a celiac and feel better when they are gluten free. We believe they are gluten intollerent and maybe have Celiac Disease.

My real question is has anybody seen or read about or have Fabry Disease in conjunction with Celiac Disease?
We have been researching but haven't found anything that really relates the two.

Any info would be appreciated.

it would seem that your nephew's father needs testing as well, if he is living.


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#4 jphermans@onsbrabantnet.nl

 
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Posted 10 September 2013 - 11:22 PM

Hi,

 

I came across your post after a google search for "Gluten Fabry's Disease" and saw you (kinda unsurprisingly) didn't have any responses in the last several months, so I figured I'd throw in my two cents.

 

I have not been diagnosed with Celiac disease, but I was diagnosed with Fabry's just about 10 years ago. Fabry's is very idiosyncratic in terms of who gets which symptoms and how bad. Unlike many Fabbers I had no issues with upper GI problems but I would guess anecdotally that my neuropathic pain symptoms are worse than most (early childhood onset and requiring a high doses of drugs to keep manageable). I had had near constant lower GI problems, but those have practically been eliminated with enzyme replacement therapy (Fabrazyme).

 

So why am I here?

 

Several weeks ago I went off gluten as a shot-in-the-dark way of seeing if I could control some eczema. Well, control my eczema it didn't, but by neuropathic Fabry's pain has been cut in half! I have been in much less pain and have been much more mobile than I can recall being in years. I therefore suspect some latent gluten sensitivity impacted some of the Fabry's neuropathy, or that the Fabry's neuropathy itself is gluten sensitive.

 

I hope you're doing well. Good luck on your personal health journey.

Hello,

 

The way I understand it is as follows:

People with Fabry have a partial or total lack of an enzyme: alfa-GAL. This enzyme in its turn, activates the production of another enzyme: DPP-IV. DPP-IV breaks down (gluten) exorfins.

 

I hope this helps?


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