• Ads by Google:
     




    Get email alerts Celiac.com E-Newsletter

    Ads by Google:



       Get email alertsCeliac.com E-Newsletter

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

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:
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
Ads by Google:


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
      106,808
    • Total Posts
      932,595
  • Member Statistics

    • Total Members
      64,302
    • Most Online
      3,093

    Newest Member
    AnLi
    Joined
  • Popular Now

  • Topics

  • Posts

    • Update: for most accurate results, I am eating one piece of white wheat bread a day and am hating the symptoms. Less than two weeks until the endoscopy so I'm hanging in there.
    • Gaerty, I am glad to hear that you've ruled out the worst stuff. That at least helps clear any anxiety or worry you might have. I know that would clear up mine. I have good news! About three days ago my splinter hemorrhages cleared up 100%! The one that was on my right thumb was long and was there for about 2 to 3 months. I started taking this Vitamin C supplement 1000 mg once a day about 3 weeks ago. Whats crazy is that on the day I started the Vitamin C I noticed a small hemorrhage cropping up on my left thumb. It was very small. By day 7 of taking the vitamin C the one on the left thumb started growing out. By the second week I noticed the one on the right thumb shrunk drastically and by the end of week 3 they were all gone. By day 10 I also started taking 25mg of iron because all my muscles keep twitching. My B's and Magnesium came back good 5 months ago. I heard low iron can cause that symptom as well. So thought I'd give it a try.  I am not sure if it was a combo of the C and Iron or just the C that helped clear the splinter hemorrhages but for sure it was one of those things because they are the only things I have changed recently with supplements in the past 30 days.  
    • The nasal spray is safe, per the 2017 gluten-free drug list, but check the list as there are a few different manufacturers.   http://www.glutenfreedrugs.com/newlist.htm Claritin is fine.   Get a Nedi pot.  Helps tremendously.  It is safe.....100% gluten free.  Just use pre-boiled and the cooled water.  
    • Thanks Ravenswood. I need the strength and encouragement to keep going. The last sessions fall out was 4 days of my body revolting on a nervous system level.  I'll look into your acupressure book suggestion. I have done sinus acupressure for myself and my daughter for years but did not explore more.  In the past when gluten-free my fibromyalgia symptoms improved but since they come back the concern is it might be actual fibromyalgia.  After 2016 I found out I have Barrett s esophagus, fibromyalgia, additional food intolerance plus the gluten. I had in my head I was ncgs and it was all related to  that and leaky gut that occurred after my challenge., So I wasn't prepared to digest all the above. Pun intended. Thanks for the encouragement Awol
    • So I'll try to keep this short and sweet.  I'm a 25yo male and have had GI issues for about 7 years. Through many years and many doctors visits, I've gotten potential diagnoses of IBS, post-infectious IBS (d/t a Giardia infection in 2014), small intestine bacterial overgrowth, GERD, and even a strong suspicion of inflammatory bowel disease (Crohn's/Ulcerative Colitis). I've had two colonoscopies (no biopsies taken) and one EGD (biopsies only taken of STOMACH which showed chronic gastritis, not small intestine). Pretty much all of my tests have come back "normal."  I'll start by saying that back in 2014ish my blood results for Celiac were negative. My GI symptoms vary and fluctuate greatly... When I'm really struggling, I'll have chronic diarrhea, debilitating reflux, hours of burping after eating anything, epigastric and lower right quadrant abdominal pain, severe fatigue (nearly passing out), migraines, awful brain fog / depression, unilateral eye pain and photophobia, mouth ulcers, glossitis (tongue inflammation), and occasional bloody mucus in my stool if I'm extremely flared.   So my GP recommended I try a gluten-free diet after my IBD panel came back as negative. I reluctantly gave it a shot. I was gluten-free for about 2 months - slowly but surely, my chronic diarrhea relented, fatigue lifted, and my reflux nearly disappeared (to the point of considering stopping my omeprazole). Since eating gluten-free is so difficult, I decided to try a 3-day gluten challenge to see if gluten truly was the culprit. I ate gluten products 2-3 times/day for 3 days. It made my reflux a bit worse and gave me some pain, but nothing severe. My tongue however started progressively burning/stinging that week.  The BAD symptoms came about 2 weeks after my first gluten exposure... My acid reflux became MUCH MUCH worse, despite medication. I lost about 7 pounds over 3 weeks from not wanting to eat. I had much more abdominal pain. My tongue became very inflamed and sensitive to eating/drinking. I got mouth ulcers. I became very depressed, irritable, and brain-fogged out of NOWHERE. I was nauseous and having headaches. It was NOT fun. That's when I thought, "Ok, I am definitely more sensitive to gluten than I thought." That was about 6 weeks ago and my stomach is still feeling the effects of those 3 days. So, my questions: Has anyone experienced a similar story? Has anyone had lower GI bleeding with celiac? For those who have Celiac, are your symptoms typically delayed like that (2-3 weeks)? I know NCGS is supposed to have much more immediate symptom-onset. Has anyone tested negative to blood work, but positive on small intestine biopsies?   
  • Upcoming Events