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
      129,562
    • Most Online (within 30 mins)
      7,748
    Dominique Cooper
    Newest Member
    Dominique Cooper
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.2k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Scott Adams
      Anyone understand genetic testing

      By Scott Adams · Posted

      Your genetic test results confirm that you carry the highest-risk markers for celiac disease, specifically the HLA-DQ2 haplotype (while being negative for HLA-DQ8). The fact that both HLA-DQA1*05 and HLA-DQB1*0201 appear twice means you inherited identical copies from each parent, making you homozygous for these genes. This double dose of the DQ2.5 haplotype is significant because it indicates an even stronger genetic predisposition to celiac disease compared to those who only inherit one copy. Research suggests that people with this homozygous pattern may have a higher likelihood of developing the disease, potentially more severe immune responses to gluten, and a stronger association with dermatitis herpetiformis (which aligns with your diagnosis). While this genetic profile doesn’t guarantee worse symptoms, it does reinforce why strict gluten avoidance is critical for you. Since you’re already diagnosed, the main takeaway is that your results explain your biological susceptibility—no further genetic counseling is needed unless you have family planning questions. The repeating variants simply mean both parents passed you the same high-risk alleles, which is why your body reacts so strongly to gluten. Ultimately, your diagnosis and management remain the same, but this insight helps underscore the importance of lifelong dietary diligence.
    • Scott Adams
      Helping child go strict gluten-free and concerns about growth/height

      By Scott Adams · Posted

      It sounds like you and your daughter are navigating celiac disease with a lot of care and dedication, and it’s wonderful that you’re prioritizing her health and growth during this critical time. Since her antibody levels and growth have plateaued, tightening up her diet by avoiding eating out (except at dedicated gluten-free places) is a smart move—even if it’s challenging socially. Many parents of celiac kids report significant growth spurts once gluten exposure is minimized, so there’s hope she’ll catch up if her levels improve. As for the future, while her growth window closing may reduce some risks, celiac is lifelong, and staying as strict as possible will likely always be best to avoid long-term complications, even if occasional cautious outings become manageable later. Navigating this with a teenager is tough, especially with spontaneous social events. For unplanned outings, keeping safe snacks (like GF protein bars, nuts, or fruit) in her bag or your car can help. To boost nutrition, try sneaking in variety where you can—like lentil or chickpea pasta instead of rice pasta, or adding veggies and proteins to her favorite dishes. Involving her in meal planning might help with pickiness, and connecting with other celiac families or support groups could provide social strategies and emotional support. It’s exhausting, but you’re doing an amazing job—your efforts now will set her up for a healthier future. Hang in there!
    • Scott Adams
      Illinois Celiac Training- Huge Win!

      By Scott Adams · Posted

      This is good news--I hope we can get this done on a national level!
    • Scott Adams
      Juice shots? Anti inflammatory

      By Scott Adams · Posted

      I use a blender and have made various juice recipes over the years. 
    • captaincrab55
      Illinois Celiac Training- Huge Win!

      By captaincrab55 · Posted

      Pharmacies personnel need training to prevent cross contamination.     
×
×
  • Create New...