Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

Fuchs' Dystrophy?
0

14 posts in this topic

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.

0

Share this post


Link to post
Share on other sites


Ads by Google:

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

0

Share this post


Link to post
Share on other sites

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?

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites




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)

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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!

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

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.)

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      104,099
    • Total Posts
      920,349
  • Topics

  • Posts

    • I think that we have to remember that celiacs often develop intolerances due to our  damaged guts.  Our guts do not ncessarily heal either (usually adults) for  a variety of reasons even if their symptoms improve (see links below).   Nuts are just plain hard to digest.   I can not tolerate almonds, but can handle walnuts and cashews in small amounts.  I can eat peanuts too, but resort to Peanutbutter after a Glutening as it is easier to digest (maybe I have to learn to chew better!  😀)  My nut symptoms have  nothing to do with gluten as I have purchased certified gluten-free nuts and suffered with the same symptoms.  .   https://www.verywell.com/celiac-disease-when-will-your-small-intestine-recover-562341 http://www.cureceliacdisease.org/treatment/ http://www.ncbi.nlm.nih.gov/pubmed/23936873 i call the manufacturer when I suspect the manufacturer is sharing the line or if I just want to know.  I bought some Black English walnuts and called the company.  Those are the only nuts they process and they do not have any flavored nuts.   if you really want to test your theory out, buy some nuts from Nuts.com (certified gluten-free).   See if you get a reaction or ask your GI to retest your antibodies (which should be done annually anyway).   I just hate to have Planters get a bum rap when you do not really know for sure.......😥    
    • New to forum! Appreciate all of the information.  I have Kaiser as many of you do.  My ttg is 1.18 (Kaiser <90), iga 31 (Kaiser <90). I have emailed my pcp in regards to where we go from here.  Is this a positive result or just a little above normal like Kaiser will tell me? I have had conflicting symptoms of some sort of inflammatory problem for 9 years.  I am almost convinced that this might be my answer. Can anyone give insight?
    • I eat them with no issues and know several other Celiacs that eat them with no issue.
    • I am sorry that you are sick! i think you need to really adhere to a gluten free diet that consists of ONLY whole foods (no processed gluten-free foods) and do not go out to eat, until you start to see improvement.  Each tiny gluten exposure can set you back.  It sounds like you really became even more ill after the gluten challenge.   I was just anemic when diagnosed.  I waited seven weeks for my endoscopy due to work issues, so i took the time to consume lots of gluten.  Like a loaf of sourdough per day not to mention all the cakes, cookies that I loved.  (Okay, I just ate a few out of each package......)  by the end of seven weeks, I knew I had celiac disease.  I had a bloated stomach visible under my left rib cage, pinching when I bent over, indigestion, etc.  Not to mention some weird Fibro pain my my shoulders, tingly legs, etc.   Most resolved, but it took about two years. If you  ask for thyroid panel, be sure it includes testing for thyroid antibodies.   
    • My daughter, who is almost 21 and has celiac disease, was diagnosed with Epilepsy a year ago. Hindsight being 20/20, we realized she had been having seizure since she was a teenager but the random passing out and feelings of being 'out of it' were attributed to dehydration or poor nutrition and sleep habits during numerous trips to the emergency room. In our reading about Epilepsy, I have found some mention of celiac and gluten issue connections and even where a strict adherence to a gluten-free diet provided a lot of improve the with frequency and severity of seizures.  I would be interested to know if anyone else shares this experience.
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,133
    • Most Online
      1,763

    Newest Member
    Mycaringkidsmom
    Joined