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Fuchs' Dystrophy?


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#1 cyberprof

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Posted 02 October 2011 - 09:22 PM

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.
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Diagnosed by biopsy 2/12/07. Negative blood tests. Gluten-free (except for accidents) since 2/15/07. DQ2.5 (HLA DQA1*05:DQB1*0201)

Son, age 18, previously delayed growth 3rd percentile weight, 25th percentile height (5'3" at age 15). Negative blood work. Endoscopy declined. Enterolab positive 3/12/08. Gene results: HLA-DQB1 Molecular analysis, Allele 1 0201 HLA-DQB1 Molecular analysis, Allele 2 0503 Serologic equivalent: HLA-DQ 2,1(Subtype 2,5) Went gluten-free, casein-free 3/15/08. Now 6'2" (Over six feet!) and doing great.

"Great difficulties may be surmounted by patience and perseverance." Abigail Adams (1744-1818) 2nd First Lady of the United States

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#2 sicl4015

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Posted 24 November 2011 - 08:12 PM

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

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Posted 24 November 2011 - 10:06 PM

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?
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Diagnosed by biopsy 2/12/07. Negative blood tests. Gluten-free (except for accidents) since 2/15/07. DQ2.5 (HLA DQA1*05:DQB1*0201)

Son, age 18, previously delayed growth 3rd percentile weight, 25th percentile height (5'3" at age 15). Negative blood work. Endoscopy declined. Enterolab positive 3/12/08. Gene results: HLA-DQB1 Molecular analysis, Allele 1 0201 HLA-DQB1 Molecular analysis, Allele 2 0503 Serologic equivalent: HLA-DQ 2,1(Subtype 2,5) Went gluten-free, casein-free 3/15/08. Now 6'2" (Over six feet!) and doing great.

"Great difficulties may be surmounted by patience and perseverance." Abigail Adams (1744-1818) 2nd First Lady of the United States

#4 MaryJones2

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Posted 26 November 2011 - 04:14 PM

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.
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#5 smithgkm16

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Posted 21 February 2012 - 08:21 AM

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
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#6 cyberprof

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Posted 21 February 2012 - 11:16 AM

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)
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Diagnosed by biopsy 2/12/07. Negative blood tests. Gluten-free (except for accidents) since 2/15/07. DQ2.5 (HLA DQA1*05:DQB1*0201)

Son, age 18, previously delayed growth 3rd percentile weight, 25th percentile height (5'3" at age 15). Negative blood work. Endoscopy declined. Enterolab positive 3/12/08. Gene results: HLA-DQB1 Molecular analysis, Allele 1 0201 HLA-DQB1 Molecular analysis, Allele 2 0503 Serologic equivalent: HLA-DQ 2,1(Subtype 2,5) Went gluten-free, casein-free 3/15/08. Now 6'2" (Over six feet!) and doing great.

"Great difficulties may be surmounted by patience and perseverance." Abigail Adams (1744-1818) 2nd First Lady of the United States

#7 SueA

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Posted 29 March 2012 - 10:24 AM

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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#8 cyberprof

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Posted 30 March 2012 - 09:53 PM

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.
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Diagnosed by biopsy 2/12/07. Negative blood tests. Gluten-free (except for accidents) since 2/15/07. DQ2.5 (HLA DQA1*05:DQB1*0201)

Son, age 18, previously delayed growth 3rd percentile weight, 25th percentile height (5'3" at age 15). Negative blood work. Endoscopy declined. Enterolab positive 3/12/08. Gene results: HLA-DQB1 Molecular analysis, Allele 1 0201 HLA-DQB1 Molecular analysis, Allele 2 0503 Serologic equivalent: HLA-DQ 2,1(Subtype 2,5) Went gluten-free, casein-free 3/15/08. Now 6'2" (Over six feet!) and doing great.

"Great difficulties may be surmounted by patience and perseverance." Abigail Adams (1744-1818) 2nd First Lady of the United States

#9 SueA

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Posted 31 March 2012 - 08:44 AM

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!
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#10 cyberprof

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Posted 31 March 2012 - 01:46 PM

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.
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Diagnosed by biopsy 2/12/07. Negative blood tests. Gluten-free (except for accidents) since 2/15/07. DQ2.5 (HLA DQA1*05:DQB1*0201)

Son, age 18, previously delayed growth 3rd percentile weight, 25th percentile height (5'3" at age 15). Negative blood work. Endoscopy declined. Enterolab positive 3/12/08. Gene results: HLA-DQB1 Molecular analysis, Allele 1 0201 HLA-DQB1 Molecular analysis, Allele 2 0503 Serologic equivalent: HLA-DQ 2,1(Subtype 2,5) Went gluten-free, casein-free 3/15/08. Now 6'2" (Over six feet!) and doing great.

"Great difficulties may be surmounted by patience and perseverance." Abigail Adams (1744-1818) 2nd First Lady of the United States

#11 SueA

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Posted 31 March 2012 - 02:08 PM

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
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#12 cyberprof

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Posted 31 March 2012 - 04:53 PM

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.)
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Diagnosed by biopsy 2/12/07. Negative blood tests. Gluten-free (except for accidents) since 2/15/07. DQ2.5 (HLA DQA1*05:DQB1*0201)

Son, age 18, previously delayed growth 3rd percentile weight, 25th percentile height (5'3" at age 15). Negative blood work. Endoscopy declined. Enterolab positive 3/12/08. Gene results: HLA-DQB1 Molecular analysis, Allele 1 0201 HLA-DQB1 Molecular analysis, Allele 2 0503 Serologic equivalent: HLA-DQ 2,1(Subtype 2,5) Went gluten-free, casein-free 3/15/08. Now 6'2" (Over six feet!) and doing great.

"Great difficulties may be surmounted by patience and perseverance." Abigail Adams (1744-1818) 2nd First Lady of the United States

#13 stevevit

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Posted 12 January 2013 - 05:23 PM

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.
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