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Celiac And Fabry Disease

angieInCA

By angieInCA
in Related Issues & Disorders

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angieInCA Apprentice
angieInCA
Posted

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.

  • 1 year later...
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Gluke Newbie
Gluke
Posted

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.

frieze Community Regular
frieze
Posted

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.

  • 3 months later...
jphermans Newbie
jphermans
Posted

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?

  • 2 years later...
SuBee Newbie
SuBee
Posted

I see this post is a few years old but thought I'd respond anyway.  I tested positive for celiac disease along with my mom in 2008.  Then in 2011 my two brothers, my mom and my daughter and I all tested positive for Fabry disease.  I guess we hit the genetic jackpot :).  My two brothers who are 51 and 48 both get the enzyme but neither my mom,  my daughter nor I do at this point and I am 50 my daughter is 19 and my mom is 67.   So I am gluten free and while I don't have burning pain in my hands or feet  I do have nerve pain in my low back and legs...whether that's due to Fabry or something else is anyone's guess.  

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