Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • 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

Celiac and retinitis pigmentosa

artsunshine

Recommended Posts

artsunshine Apprentice
artsunshine
Posted

Hi all,

this week is a sad part of my life. Not only that in 2016 i was diagnosed with celiac and hashimoto, now they told me i have retinitis pigmentosa. This is disease of the eyes, billateral and i will be blind in next years. I am wondering if it is connected to celiac anyhow? There is no cure for retinitis pigmentosa, but sometimes you can slow it down with vitamin a, thats why i am asking! Would appreciate your answers! 

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

Celiac.com Sponsor (A8-M):


ravenwoodglass Mentor
ravenwoodglass
Posted

There was one thing that might connect that I saw on Medscape. The article seemed to have a lot of good info.

Open Original Shared Link

"Systemic examination for RP can be helpful to rule out syndromic RP, which are conditions that have pigmentary retinopathy and mimic RP, such as the following: "

....  "Fat malabsorption, fat-soluble vitamin deficiencies, "

Perhaps that could have a celiac related cause.  I wonder if that is the case if it could be either stopped or reversed?

knitty kitty Grand Master
knitty kitty
Posted

ArtSunshine, 

So sorry to hear your diagnosis.  My heart goes out to you.

Celiac Disease causes damage to the small intestine which makes absorption of vitamins problematic.  Vitamin A deficiency is a cause of eye problems.

This article discusses how vitamin A and DHA can help slow the progression.

Open Original Shared Link

And this article looks at different ways Celiac Disease can affect the eyes and vision.  

Open Original Shared Link

I hope this helps.  

flowerqueen Community Regular
flowerqueen
Posted
18 hours ago, artsunshine said:

Hi all,

this week is a sad part of my life. Not only that in 2016 i was diagnosed with celiac and hashimoto, now they told me i have retinitis pigmentosa. This is disease of the eyes, billateral and i will be blind in next years. I am wondering if it is connected to celiac anyhow? There is no cure for retinitis pigmentosa, but sometimes you can slow it down with vitamin a, thats why i am asking! Would appreciate your answers! 

Hi,

Firstly, I'm so sorry to hear of your diagnosis, if you need any help with this the RNIB in UK (website) has some useful information on the disease which you might want to look at.  As far as I know, there isn't any link between the condition and celiac disease, although both conditions are hereditary.  Somewhere, I did hear that stem cell treatment can slow down the disease, you may have to look that up on Google, unless anyone else here can help you.  I'm also informed that people can retain a small amount of vision with the disease, again, this is something you may wish to research yourself.  

I truly wish there was more I could say to help, and I wish you good luck on your quest and pray that there will be a cure somewhere on the horizon in the not too distant future, and that you will benefit from it. 

Washingtonmama Contributor
Washingtonmama
Posted

Im so sorry   :'(   My husband, boys, brother-in-law, father-in-law, my husband's uncle...all have RP. Eighty percent of my husbands side of the family have it. No one had Celiac disease though so I cant help with that idea. Sadly they have disproved the vitamin A treatment saying it works minimally in some people, not at all in others.  I can tell you something really exciting though that I bet will help. We go to the Casey Eye Institute in Portland, OR for eye care. My husband and boys are enrolled in their research studies, basically anonamously submitting their tests for research. Anyway, their eye team told us they are now looking for a drug company who will make the medication they developed that will slow or completely stop the progress of RP. They will start their clinical trials with the medication in about a year. They have a stem cell trial in the works too, to begin in about 9 months. So don't lose hope, there is a LOT of hope to stop your RP! They are very confident in their medication and the stem cell treatment, this is good! Maybe you can contact them to see if you can get in on the trial too. I do think you have to go to Casey Eye Institute as they have satellite offices throughout the US. Heres the link...Open Original Shared Link

 

Washingtonmama Contributor
Washingtonmama
Posted
On 4/5/2017 at 8:27 AM, artsunshine said:

Hi all,

this week is a sad part of my life. Not only that in 2016 i was diagnosed with celiac and hashimoto, now they told me i have retinitis pigmentosa. This is disease of the eyes, billateral and i will be blind in next years. I am wondering if it is connected to celiac anyhow? There is no cure for retinitis pigmentosa, but sometimes you can slow it down with vitamin a, thats why i am asking! Would appreciate your answers! 

 

I forgot to ask, do you have family members who have RP! if so, you can usually base how fast your vision loss will progress on their vision loss. Not always, but I've heard that is the general rule. Most people don't lose their vision entirely until they are in their 60's or 70's. Just something that popped into my head. 

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      127,947
    • Most Online (within 30 mins)
      7,748
    cookiesyum
    Newest Member
    cookiesyum
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.5k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • pdm1981
      Glutening symptom? oily stool

      By pdm1981 · Posted

      It's also a symptom of EPI.
    • Wheatwacked
      3 year old gluten intolerance?

      By Wheatwacked · Posted

      Yes.  Proportionately a small piece to a toddler is like a whole slice to an adult.  This is an important clue.  She was doing well, accidentally ate gluten and later the old behavior returned. I remember reading posts here of people reacting to a kiss from someone who had just eaten gluten. Recent research indicates that 40% of first degree relatives of someone with Celiac have undiagnosed Celiac Disease.  Father, mother, siblings.  There is a whole list of symtoms of "silent celiac".  Here is an article of symptoms possibly mistaken for other causes than Celiac Disease.  When I finally stopped gluten at 63 years old, I counted 19 things that improved, including lifelong mouthbreathing.  I never smelled bad things, so I as a kid, I learned to respond to the other kid's response in order to not seem weird. I really recommend you pursue testing for all the family if you can, and the whole family following GFD.  It is difficult at first, but the benefits will be worth it.  
    • Visionaerie
      Feel Good gluten free chicken soup dumplings

      By Visionaerie · Posted

      I get these but where we are, they are called chicken potstickers. I would obviously suggest that it is the ginger in the product that is causing a stimulative digestive effect! So you might want to do what I do, just cook one of them with the rest of your meal so you don't have the same effect. I love the Feel Good products but they are on the expensive side. (I also drink Reed's ginger brew so in general, ginger is a friend of mine..when delivered at the right dose). Hope this helps and have a warm healthy week!
    • ognam
      Glutening symptom? oily stool

      By ognam · Posted

      Has anyone had Steatorrhea (oily/fatty poop) as a temporary glutening symptom or should I be concerned I've introduced chronic gluten somewhere (like in meds)? I haven't gotten Steatorrhea since before I went gluten free. However, I moved in the past few weeks and haven't been as careful - I've eaten at restauraunts with cross contamination but only experienced minor symptoms like headache. The past week, I ate only gluten free food at home except I went to Red Robin and got fries (told them gluten-free; allergy). The next day I had Steatorrhea and the day after that.   I know it's a symptom of malabsorption so I was wondering if it was the kind of thing that could be caused by one event or if it was due to a more chronic issue. Of course I will speak to a GI but I recently moved and need to find one.   Thank you for any info
    • plumbago
      Anyone else with very high HDL?

      By plumbago · Posted

      A relative has opened another door for me on this issue -- the possibility of menopause raising HDL. Most studies suggest that menopause decreases HDL-C, however, one study found that often it's increased. "Surprisingly, HDL cholesterol was higher (p < 0.001) in postmenopausal women by 11%. Further, the number of women who had low HDL cholesterol was higher in pre vs. postmenopausal women. The range of ages were 26–49 years for pre-menopausal and 51–74 years for postmenopausal women. "This interesting finding has also been observed by other investigators. It is possible that the observed increase in HDL-C in postmenopausal women could be due to a protective mechanism to counterbalance the deleterious effects of biomarkers associated with menopause. However, further studies are needed to confirm this theory. And to the point raised earlier about functionality: "...some patients with elevated HDL-C concentrations could remain at risk for coronary events if HDL is not functional and some authors have suggested that this could be the case for menopausal women." Postmenopausal Women Have Higher HDL and Decreased Incidence of Low HDL than Premenopausal Women with Metabolic Syndrome. By no means to I think this is definitive, rather food for thought.
×
×
  • Create New...