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artsunshine

Celiac and retinitis pigmentosa

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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! 

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

http://emedicine.medscape.com/article/1227488-overview

"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?


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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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.

http://www.blindness.org/treatments/new-findings-lead-revised-therapeutic-regimen-slow-rp

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

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4768497/

I hope this helps.  

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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. 


Under active thyroid; diabetic; hiatus hernia; acid reflux; dairy intolerant; arthritis; sciatica due to spine degeneration; diagnosed with coeliac disease November 2011; fibromyalgia; allergic to Thyme & MSG and alcohol. Allergic to TCP antiseptic, and plasters. Taking medication for severe muscle spasms in upper back.

Despite all, remaining positive!

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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...http://www.ohsu.edu/xd/health/services/casey-eye/

 

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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. 

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