Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Fuchs' Dystrophy?

cyberprof

By cyberprof
in Related Issues & Disorders

Recommended Posts

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...
Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


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.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


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

Archived

This topic is now archived and is closed to further replies.

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. sc'Que?
      - sc'Que? commented on Celiac.com Sponsor: Review's article in Product Reviews
      1

      Bold Taste, No Alcohol & Crafted to Remove Gluten: Daura Non-Alc Beer Takes Alcohol-Free Beer to the Next Level

      @Daura Damm: Can we get a gluten-free Imperial Oatmeal Stout, please? Please?!?
    2. Mari
      - Mari replied to Jmartes71's topic in Related Issues & Disorders
      21

      My only proof

      I think, after reading this, that you areso traumatized by not being able yo understand what your medical advisors have been what medical conditions are that you would like to find a group of people who also feel traumatized who would agree with you and also support you. You are on a crusade much as the way the US Cabinet official, the Health Director of...
    3. Jmartes71
      - Jmartes71 replied to Jmartes71's topic in Related Issues & Disorders
      21

      My only proof

      Thus has got to STOP , medical bit believing us! I literally went through 31 years thinking it was just a food allergy as its downplayed by medical if THEY weren't the ones who diagnosed us! Im positive for HLA-DQ2 which is first celiac patient per Iran and Turkey. Here in the States especially in Cali its why do you feel that way? Why do you think your celiac...
    4. knitty kitty
      - knitty kitty replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      44

      Supplements for those Diagnosed with Celiac Disease

      @Scatterbrain, Thiamine Vitamin B1 and amino acid Taurine work together. Our bodies can make Taurine from meats consumed. Our bodies cannot make Thiamine and must consume thiamine from food. Meat is the best source of B vitamins like Thiamine. Vegetarians may not make sufficient taurine since they don't eat meat sources of taurine...
    5. knitty kitty
      - knitty kitty replied to Jmartes71's topic in Related Issues & Disorders
      21

      My only proof

      @Jmartes71, I went to Doterra's site and had a look around. The Doterra TerraZyme supplement really jumped out at me. Since we, as Celiacs, often have digestive problems, I looked at the ingredients. The majority of the enzymes in this supplement are made using black mold, Aspergillus! Other enzymes are made by yeast Saccharomyces! Considering...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,547
    • Most Online (within 30 mins)
      7,748
    GSward
    Newest Member
    GSward
    Joined
  • Celiac.com Sponsor (A20):

  • Celiac.com Sponsor (A22):



  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • Mari
      My only proof

      By Mari · Posted

      I think, after reading this, that you areso traumatized by not being able yo understand what your medical advisors have been  what medical conditions are that you would like to find a group of people who also feel traumatized who would agree with you and also support you. You are on a crusade much as the way the US Cabinet  official, the Health Director of our nation is in trying to change what he considers outdated and incorrect health advisories. He does not have the education, background or experience to be in the position he occupies and is not making beneficial decisions. That man suffered a terrible trauma early in his life when his father was assonated. We see now how he developed and worked himself into a powerful position.  Unless you are willing to take some advice or  are willing to use a few of the known methods of starting on a path to better health then not many of us on this Celiac Forum will be able to join you in a continuing series of complaints about medical advisors.    I am almost 90 years old. I am strictly gluten free. I use 2 herbs to help me stay as clear minded as possible. You are not wrong in complaining about medical practitioners. You might be more effective with a clearer mind, less anger and a more comfortable life if you would just try some of the suggestions offered by our fellow celiac volunteers.  
    • Jmartes71
      My only proof

      By Jmartes71 · Posted

      Thus has got to STOP , medical bit believing us! I literally went through 31 years thinking it was just a food allergy as its downplayed by medical if THEY weren't the ones who diagnosed us! Im positive for HLA-DQ2 which is first celiac patient per Iran and Turkey. Here in the States especially in Cali its why do you feel that way? Why do you think your celiac? Your not eating gluten so its something else.Medical caused me depression. I thought I was safe with my former pcp for 25 years considering i thought everything I went through and going through will be available when I get fired again for health. Health not write-ups my health always come back when you're better.Im not and being tossed away at no fault to my own other than shitty genes.I was denied disability because person said he didn't know how to classify me! I said Im celiac, i have ibs, hernia, sciatica, high blood pressure, in constant pain have skin and eye issues and menopause intensified everything. With that my celiac nightmare began to reprove my disregarded disease to a bunch of clowns who think they are my careteam when they said I didn't have...I feel Im still breathing so I can fight this so no body else has to deal with this nightmare. Starting over with " new care team" and waisting more time on why I think I am when diagnosed in 1994 before food eliminated from my diet. P.s everything i went through I did write to medical board, so pretty sure I will continue to have a hard time.
    • knitty kitty
      Supplements for those Diagnosed with Celiac Disease

      By knitty kitty · Posted

      @Scatterbrain, Thiamine Vitamin B1 and amino acid Taurine work together.  Our bodies can make Taurine from meats consumed.  Our bodies cannot make Thiamine and must consume thiamine from food.  Meat is the best source of B vitamins like Thiamine.   Vegetarians may not make sufficient taurine since they don't eat meat sources of taurine.  Seaweed is the best vegetarian source of taurine. Vegetarians may not consume sufficient Thiamine since few veggies are good sources.  Whole grains, legumes, and nuts and seeds contain thiamine.  Many of these sources can be hard to digest and absorb for people with Celiac disease.   You may find taking the forms of thiamine called Benfotiamine or TTFD (tetrahydrofurfuryl disulfide) and a B Complex will give the benefits you're looking for better than taurine alone.  
    • knitty kitty
      My only proof

      By knitty kitty · Posted

      @Jmartes71, I went to Doterra's site and had a look around.  The Doterra TerraZyme supplement really jumped out at me.  Since we, as Celiacs, often have digestive problems, I looked at the ingredients.  The majority of the enzymes in this supplement are made using black mold, Aspergillus!  Other enzymes are made by yeast Saccharomyces!  Considering the fact that Celiac often have permeable intestines (leaky gut syndrome), I would be very hesitant to take a product like this.  Although there may not be live black mold or yeast in the product, the enzymes may still cause an immune system response which would definitely cause inflammation throughout the body.   Skin, eyes, and intestines are all made from the same basic type of cells.  Your skin on the outside and eyes can reflect how irritated the intestines are on the inside.  Our skin, eyes, and intestines all need the same vitamins and nutrients to be healthy:  Vitamin A, Niacin B3 and Tryptophan, Riboflavin B2, Biotin B7, Vitamin C, and Omega Threes.  Remember that the eight B vitamins work together.  Just taking high doses of just one, vitamin like B12, can cause a deficiency in the others.  Taking high doses of B12 can mask a Folate B9 deficiency.  If you take B12, please take a B Complex, too.  Thiamine B1 can be taken in high doses safely without toxicity.  Thiamine is needed by itself to produce energy so every cell in the body can function, but Thiamine also works with the other B vitamins to make life sustaining enzymes and digestive enzymes.  Deficiencies in either Niacin, Vitamin C, or Thiamine can cause digestive problems resulting in Pellagra, Scurvy, and Gastrointestinal Beriberi.   If you change your diet, you will change your intestinal microbiome.  Following the Autoimmune Protocol Diet, a Paleo diet, will starve out SIBO bacteria.  Thiamine keeps bacteria in check so they don't get out of control as in SIBO.  Thiamine also keeps MOLDS and Yeasts from overgrowth.   Menopause symptoms and menstrual irregularities are symptomatic of low Vitamin D.   Doctors are not as knowledgeable about malnutrition as we need them to be.  A nutritionist or dietician would be more helpful.   Take control of your diet and nutrition.  Quit looking for a pill that's going to make you feel better overnight.  The Celiac journey is a marathon, not a sprint.   "Let food be your medicine, and let medicine be your food."
    • RUKen
      Are Lindt chocolate balls gluten free?

      By RUKen · Posted

      The Lindt (Lindor) dairy-free oat milk truffles are definitely gluten-free, and (last time I checked) so are the white chocolate truffles and the mint chocolate truffles. 
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.