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Fuchs' Dystrophy?

cyberprof

By cyberprof
in Related Issues & Disorders

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cyberprof Enthusiast
cyberprof
Posted

Anyone here also have Fuchs' dystrophy, also known as Fuchs' endothelial dystrophy? It's where the cornea of your eye starts to go bad, causing blindness if not surgically treated by replacing the cornea.

About 1% of the population has it and it's genetic. My dad and my sister have it and I was diagnosed with it last week.

  • 1 month later...
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sicl4015 Rookie
sicl4015
Posted

I do and found your question while hunting to see if there is a connection to Celiac Disease.

cyberprof Enthusiast
cyberprof
Posted
  • Author

I do and found your question while hunting to see if there is a connection to Celiac Disease.

So far, you and I are the only ones. I haven't found any link in medical journals but like other diseases related to celiac, there isn't much research because celiac is relatively rare and fuchs is more rare.

Have you had any cornea transplants?

MaryJones2 Enthusiast
MaryJones2
Posted

Several members of my family have it. I do not as of yet. I'm not sure if it's related to celiac or not. It's such a rare condition.

  • 2 months later...
smithgkm16 Newbie
smithgkm16
Posted

Yes I have celiac disease and Fuches Dystrophy. My father also had Fuches Dystrophy but not celiac disease as far as we knew. He had cornea replacements on both eyes and both were a great success. I have spoken to the surgeon about it because the FD prevents me from wearing contacts and from having laser surgery. My surgeon will not perform the surgery until the eye have deteriorated to a specific level due to the possibility of rejecting the implants. The surgeon did tell me that they are now doing research for growing a new cornea layer from one's own stem cell so maybe that will come available before we have to go blind and be eligible for the surgery.

I found this forum because I was searching for a correlation between celiac disease and FD. I have noticed that if I accidentally encounter gluten in my diet my eyes are always worse the next day. The specific issue that I have with them is that I don't seem to be able to stay focused when reading at work. I am constantly (and I mean constantly like every few seconds) adjusting my glasses thinking that they are not sitting on my face straight because I cannot stay focused. Has anyone else noticed an immediate connection between gluten consumption and their eyesight?

Thanks,

Gina

cyberprof Enthusiast
cyberprof
Posted
  • Author

Gina, welcome to the gluten-free forum! It's a good place for celiac info.

I have noticed that my eyes are good then bad then good again. I hadn't noticed any connection to gluten though but maybe I'll start a log.

I am very curious if there's a gluten/fuch's connection. My dad is the supposed link, as I think he probably has celiac or at least the gene but hasn't been tested.

From what i understand about Fuchs, it may be caused partially by inflamation, and as celiacs know, gluten causes an inflamatory reaction in people who are gluten-sensitive and/or celiac. Just another reason I wish I'd been diagnosed in my teens insted of my forties. (Vent! sorry)

  • 1 month later...
SueA Newbie
SueA
Posted

I have celiac and was just diagnosed with Fuch's as well. Since the cells degenerate, I was wondering if there was a connection as well.

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cyberprof Enthusiast
cyberprof
Posted
  • Author

I have celiac and was just diagnosed with Fuch's as well. Since the cells degenerate, I was wondering if there was a connection as well.

It's strange to be in too "rare" disease groups, isn't it? Makes me feel weird, somehow. And I thought I was adjusted to celiac but the Fuchs on top makes me sad.

SueA Newbie
SueA
Posted

It's strange to be in too "rare" disease groups, isn't it? Makes me feel weird, somehow. And I thought I was adjusted to celiac but the Fuchs on top makes me sad.

By todays's standards I wouldn't call them rare diseases and there are worse things to have. I was sad when I found out I had Fuchs but I'm living each day as best as I can until my days are done. Can't do anything but that. My husband is deaf so we will make a good pair!

cyberprof Enthusiast
cyberprof
Posted
  • Author

By todays's standards I wouldn't call them rare diseases and there are worse things to have. I was sad when I found out I had Fuchs but I'm living each day as best as I can until my days are done. Can't do anything but that. My husband is deaf so we will make a good pair!

Yes, true about the diseases, but I'm the primary breadwinner and my ability to earn a paycheck is dependent upon being able to see and healthy enough to work. I've got two kids in college, a boat-load of debt and I can't afford to be out of work or to retire. Nevermind the fact that I don't want to be eating gluten-free cat food when I'm 80 because I ran out of money. So I've got huge anxiety about my eyesight. I'm more used to celiac, but it is a drain of energy, checking on gluten-free food eating out, extra time shopping and cooking.

And then we have an elderly relative in a nursing home...have you been to one? It's like a gluten purgatory. All they serve are sandwiches, hamburgers, pancakes. Where am I gonna live? Pretty scary.

Sorry to be a downer.

SueA Newbie
SueA
Posted

Yes, true about the diseases, but I'm the primary breadwinner and my ability to earn a paycheck is dependent upon being able to see and healthy enough to work. I've got two kids in college, a boat-load of debt and I can't afford to be out of work or to retire. Nevermind the fact that I don't want to be eating gluten-free cat food when I'm 80 because I ran out of money. So I've got huge anxiety about my eyesight. I'm more used to celiac, but it is a drain of energy, checking on gluten-free food eating out, extra time shopping and cooking.

And then we have an elderly relative in a nursing home...have you been to one? It's like a gluten purgatory. All they serve are sandwiches, hamburgers, pancakes. Where am I gonna live? Pretty scary.

Sorry to be a downer.

I hear ya. My husband had to retire because of his deafness so I'm the breadwinner too. 53 and couldn't retire now if I wanted to but I'm looking on the brightside and believing that surgery will go well when the time comes. I live 40 miles from work and have to drive in the dark lots. That scares me. We will get throug it like it or not. Keep your chin up.

Sue

i

cyberprof Enthusiast
cyberprof
Posted
  • Author

I hear ya. My husband had to retire because of his deafness so I'm the breadwinner too. 53 and couldn't retire now if I wanted to but I'm looking on the brightside and believing that surgery will go well when the time comes. I live 40 miles from work and have to drive in the dark lots. That scares me. We will get throug it like it or not. Keep your chin up.

Sue

i

Thanks Sue. Yeah, I'm whining. (I'm 53 too btw.)

  • 9 months later...
stevevit Newbie
stevevit
Posted

I have Fuchs' Dystrophy but I am not celiac. My family is celiac disease and I have adapted to a gluten-free diet - I still drink beer though. Cooking is my passion and ethnic dishes are my favorite so finding new gluten-free recipes has been challenging, fun and rewarding. We have also eliminated meat and dairy from our diet and have focused on maximum nutrition. I have less morning fogging, hazing (rainbow) around lights and light sensitivity. I'm not sure if my progress is from less gluten, higher nutrition or both.

  • 2 years later...
SusanGV Newbie
SusanGV
Posted

I think there may be a genetic link between Fuchs' and Celiac.  I have both.  My opthamologist said Fuchs' is definitely genetic and one of my parents must have it, but in neither is it expressed.  I believe my Dad carries it, because recently, at the age of 87 years, he has developed Celiac disease (he had signs of it for years, but only recently di it get really bad and is now finally confirmed)

Anyway, I believe he has both but the Fuchs' is not diagnosed.  He has declining vision as well.  But nothing as bad as mine was beginning when my fourth child was born!

I also believe that endocrine shocks to the system like birth can cause these genes to express.  This happened with my births of first (Celiac) and fourth (Fuchs') children.  With my Dad, the Celiac expressed when he was on Coumadin following pulmonary embolism.  When your adrenaline goes into overdrive and the body is under fire, I believe this lead to expression of these genes.

Anyone else agree agree or see any connection?  I would like to see this studied.  My former optho doctor is a professor now at a huge university, so if I can get some input, maybe I can convince her it is worthwhile to look into the connection of Fuchs' and Celiac, along with the endocrine connection.

Susan

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