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
      127,840
    • Most Online (within 30 mins)
      7,748
    P John296
    Newest Member
    P John296
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.4k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Dawn Meyers
      Vaccines

      By Dawn Meyers · Posted

      Hi I have celiac disease and the dermatitis herpetiformis rash Also other autommune diseases.  I have had bad side effects to all the vaccines I have had and now my Doctor wants me to have the pneumonia vaccine.  I am concerned because of some of the bad side effects I have had in the past example Hep B after shot couldn't  move arm for several months.  Flu shot and COVID was sick right after shot. Told not to get anymore. My lung is inflamed and have a cough I can't seem to get rid of. Very concerned 😟. 
    • knitty kitty
      Hidden Gluten in distilled vinegar

      By knitty kitty · Posted

      @Manaan2,  I'm so happy to hear you're going to try thiamine and magnesium!  Do let us know the results!   You may want to add a B 50 Complex with two meals of the day to help boost absorption.  Thiamine interacts with each of the other B vitamins which are all water soluble.   When supplementing magnesium, make sure to get sufficient calcium.  Calcium and magnesium need to be kept in balance.  If you choose a calcium supplement, take two hours apart from magnesium as they compete for absorption.  Take Calcium with Vitamin D.  Vitamin D helps calm the immune system.   For pain, I use a combination of thiamine, B12 Cobalamine, and Pyridoxine B6.  These three vitamins together have analgesic effects.  My preferred brand is "GSG 12X Takeda ALINAMIN EX Plus Vitamin B1 B6 B12 Health Supplementary from Japan 120 Tablets".  Alinamin is another form of thiamine.  It really is excellent at relieving my back pain from crushed vertebrae without side effects and no grogginess.   Look into the low histamine version of the Autoimmune Protocol Duet (Dr. Sarah Ballentyne, a Celiac herself, developed it.)  It really helps heal the intestines, too.  It's like a vacation for the digestive system.  Add foods back gradually over several weeks after feeling better.   I'm so happy to have pointed the way on your journey!  Let us know how the journey progresses! P. S. Add a Potassium supplement, too.  Potassium is another electrolyte, like magnessium, that we need.
    • Manaan2
      Hidden Gluten in distilled vinegar

      By Manaan2 · Posted

      @knitty kitty I can't thank you enough!  My husband and I already started looking into those supplements.  We definitely plan to give it a try.  We've been against the Miralax since it was originally advised by PCP, but because of the level of pain she experienced on a daily basis, we decided to try it.  We've made many attempts to gradually decrease but due to her pain and related symptoms, we've kept her on it while trying all sorts of other dietary adjustments pre and post diagnosis specific to food; so far none of those efforts have made a significant difference.  I will definitely share how she's doing along the way!
    • BIg Nodge
      Opinions on my test results/symptoms

      By BIg Nodge · Posted

      Hi, I have recently embarked on the gluten-free journey. I have what to me seems like a somewhat confusing set of test results and symptoms. I have been impressed by the accumulated knowledge and thoughtfulness as I browse this forum, so I figured I'd make a post to see if anyone can offer any insight. I know there are many posts like this from new users, so I have tried to do my baseline research first and not ask super obvious questions.  I'm 43, overall very healthy. No history of gluten sensitivity or really any of the classic GI symptoms. About three years ago I started to experience intermittent bouts of fatigue, chills/cold intolerance, and shortness of breath/air hunger (sometimes feels like a hollowness in my chest, hard to describe). The symptoms over time have become fairly significant, though not debilitating, I am able to exercise regularly and am fairly physically active, continue to perform well at work. But for example I have gone from someone who consistently ran hot, was always cranking the a/c, to someone who wears a down vest inside at work in winter and get chills if the a/c even blows on me in summer. I get tired and lose energy even when getting decent amounts of sleep, and have to have my wife take over on long drives that I could previously handle with no problems. More generally when I am experiencing these symptoms they seem to crowd out space in my mind for focusing on my family, my hobbies/activities etc, I sort of withdraw into myself.   I happened to be experiencing these symptoms during an annual physical with my PCP a few years ago, he observed post nasal drip and suggested it was allergies and that I treat it with claritin. At first it seemed to respond to claritin (though not zyrtex), but over time I became unsatisfied with that answer. There didn't seem to be any seasonal rhyme or reason to my symptoms, and I felt like I was on an endless loop of taking claritin, then stopping, not being sure if it was even making a difference. I did eventually get allergy tests and found modest allergies to dust and pollen, which didn't feel like a smoking gun.  I then started seeing a natural medicine doctor who was much more willing to explore my symptoms via testing. The first thing that came back abnormal was elevated thyroid peroxidase antibodies/TPOs, 137 IU/mL vs a reference range of <9. At the same time my thyroid panel showed normal thyroid hormone levels. So it appears my immune system is attacking my thyroid even though it is working fine. I got a thyroid ultrasound at the time, it was clear, but with some abnormalities such that they suggested I get is scanned again in a year. These are certainly risk factors for a thyroid autoimmune disease, though my thyroid seems to be working fine for now.  From here my doctor considered celiac due to the murky thyroid/celiac links, so we did a panel. Results were as follows: TT IGA <1 U/ml, TT IGG <1 U/ml, deamidated gliadin IGA 24.6 U/ml, deamidated gliadin IGG <1 U/ml, IGAs 170 mg/dL. Readings greater than 15 considered high by my lab for the first four, my IGAs are within reference range. So basically just the deamidated IGA popped, but my IGAs are normal. I also notice on the tests that my thyroglobulin was high, 86.7 ng/ml vs a range of 2.8 - 40.9.  My doctor suggested that it certainly wasn't conclusive for celiac, but it was possible, and likely that I have some sort of gluten sensitivity. She suggested going gluten free and seeing how I felt as opposed to doing a biopsy. The best theory I can come up with is perhaps I am a silent celiac or just have a gluten sensitivity that doesn't produce immediate GI symptoms, but is still doing damage and over time has caused leaky gut. So now gluten is getting into my blood, and my immune system is attacking it but also mistakingly attacking my thyroid.  So that's what I did, went gluten free in October. It's been about four months, and I am really not feeling any difference. I still get the same symptoms that come and go. My bowel movements may be a bit more regular, but it was never a major issue before so I would consider that a minor improvement. I know that it can take a while to see improvements, and I am going to remain gluten-free and see how I feel. But I am definitely questioning whether I really understand what is going on, and am open to any thoughts or suggestions from the forum. Sometimes I wish I just went ahead with the biopsy before going gluten-free. While I would certainly be down to start drinking IPAs again ahead of a biopsy, you know, for science, I feel like at this point I would be throwing away four months of work and am better off staying the course and seeing what happens. But I'm really not sure.  I know there is a lot of thyroid knowledge on these boards, along with the celiac expertise, so I'm curious if this resonates with anyone's experience. And I'm interested in what sort of timelines people have experienced in terms of feeling improvements for some of these non-GI symptoms like chills, SOB, brain fog etc. Thanks in advance. 
    • cameo674
      Testing positive for antibodies, are there visible changes to the colon that could be seen without a biopsy?

      By cameo674 · Posted

      Does it taste like black licorice?  It said it was chewable.  I do not like that flavor.     Since the burn at the back of my throat is there everyday, I usually only take something when it is unbearable and keeping me from ADL especially sleep.  
×
×
  • Create New...