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Celiac Night Vision

night vision vitamin a omega 3 fatty acids malabsorption on gf diet

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#1 PCB

 
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Posted 13 June 2013 - 01:12 AM

I am 80+, have a brother with celiac and was well until an acute autoimmune illness at Xmas 2009 possibly following flu. After extensive rather inconclusive hospital tests this seemed to be resolving on multivitamins and minerals only, apart from persistent anaemia. Tests for celiac were carried out at my request at the end of 2012: antibodies +, biopsy + (Marsh 2). Strict gluten-free diet from Jan 1st 2013.  From 2010 to present I have had 15 episodes of temporary loss of central night vision usually lasting a few days and looking like a dark C or its lower part, about 20º wide and different in the two eyes. I thought it must be due to vitamin A deficiency but it did not respond quickly to extra vitamin A and one blood test showed a normal level. On April 26th 2013 after a fish buffet night vision recovered completely but failed again slightly next day. In the latest episode lasting 9 days it improved after eggs on 2 successive days and resolved completely after one 1000mg cod liver oil capsule. This suggests that it might be due to malabsorption of omega 3 fatty acids, possibly DHA. Has anybody else out there had similar symptoms and are they indeed a useful indication of persistent malabsorption despite the gluten-free diet?

 

 


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#2 PCB

 
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Posted 05 July 2013 - 04:38 AM

Following my last post I continued multivitamins and cod liver oil 1 capsule daily and vision remained normal for a week. The night vision loss (scotoma) then returned mainly in the L eye, lasted a week, disappeared and returned for another week. In the second week it started suddenly and gradually decreased. It has now gone again, at least for the moment. If it is not a deficiency problem could this be an autoimmune retinopathy (AIR)? Celiac is an autoimmune disease but I have not found any reference to the two occurring together.  I have also looked at the dates to see if there could be a relationship to some particular food. My eyes were examined in a hospital eye clinic after the first episode and nothing abnormal was seen. I have just had the results of 6-month celiac blood tests. My tissue transglutaminase has fallen from >200 to 20 kU/l (almost normal). I am still anaemic (haemoglobin 12g/dl, about 80%). I am now taking 1 multivitamin + minerals and 2 cod liver oil capsules daily approximating to vitamin A 2µg/d, vitamin E 30mg, zinc 15mg plus EPA and DHA. This is becoming quite a detective story and I hope someone can suggest how these clues fit together! 


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#3 notme!

 
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Posted 05 July 2013 - 12:12 PM

i had so much trouble seeing at night, (especially if raining!) that i gave up driving at night - what a pain!  even if i was 10 minutes away from my home, i left before it was too dark for me to drive home.  i am 3 years gluten free (celiac dx) and i have just regained my vision and confidence to drive at night.  i even drove home at midnight in the rain a few months ago :) very very happily!!  it's empowering to take back some independence!   i suspect my malabsorbtion had plenty to do with it - before i was diagnosed my body was starving despite eating.  plenty of symptoms have cleared up gluten free - because my intestines are healing my body is now getting the nutrients it needs to work properly.  i am on a vit D supplement, and i take sublingual b-12, multi-vitamin when i remember to, lolz.  the doc checks my vitamin levels and others seem to be ok :)  i am 50 but suffered with this unknowingly for 25 years before dx.  good luck sleuthing!  


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arlene

misdiagnosed for 25 years!
just as i was getting my affairs in order to die of malnutrition...
gluten free 7/2010
blood test negative
celiac confirmed by endoscopy 9/2010

 

only YOU can prevent forest fires - smokey t. bear

 

have a nice day :)

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#4 dilettantesteph

 
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Posted 06 July 2013 - 06:11 AM

I do get this problem associated with accidental gluten intake.  I don't see it as a reliable indicator though.


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#5 PCB

 
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Posted 13 July 2013 - 05:03 AM

notme! is understandably pleased to be able to drive at night again. As vitamin A deficiency is worldwide and easily treated, I presume those multivitamins include A. One trouble is that multivitamins are treated as foods and not medicines so there is no independent testing of whether they contain what they say they do, and how well they are absorbed. Since my post of the 5th July my night vision scotomas stayed away for a week and then came back. I am now keeping a food diary, continuing to search the web unsuccessfully for an explanation using every key word I can think of, and hoping someone with similar symptoms will eventually post here. I guess there is a great deal about celiac and related illnesses still to discover. 


Edited by PCB, 14 July 2013 - 02:00 AM.

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#6 nvsmom

 
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Posted 13 July 2013 - 07:02 AM

After one year gluten-free, I found my vit A levels were at the bottom of the normal range. I have no idea what they were a year ago though or if it has improved on the gluten-free diet. I haven't found much to do with celiac disease and low vitamin A.

 

I have had horrible night vision for years. I hate driving at night because the lights are so overwhelming, it's hard to see everything else.

 

I am now taking big doses of vit A. I eat a few carrots a day and well as other colourful veggies. I have no idea if it is helping yet.


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#7 CarolinaKip

 
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Posted 14 July 2013 - 07:14 AM

I've never thought my trouble seeing at night (especially when raining) To be a part of my Celiac. Hmmm?? I had to stop driving when it is raining at night, I cannot see at all. I'm 3 years into my gluten-free diet. It started years before DX. Something to think about.


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#8 PCB

 
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Posted 01 August 2013 - 01:21 AM

4th instalment!. The 19th bout of these summer night vision scotomas has just cleared after 3 weeks. There is more light (and UV) in summer but I was given some Ray-Ban sunglasses 2 years ago (Ray-Ban say they are 100% UV proof) and since then the scotomas have been more frequent and longer-lasting. I have been keeping a food diary in case they are due to a summer food. The present bout was the worst yet and reached its peak after our first Rosabelle salad potatoes. For the last 5 days I have been eliminating potatoes, peppers and tomatoes. It would certainly be intriguing if night vision scotomas turned out to be due to one of those nightshade food plants as I have not found a satisfying explanation of how they got that name. My eyes were looked at by an optometrist last week. She detected no abnormality and fundus photographs showed no traces matching the shape of the scotomas. To establish whether these scotomas are due to a toxin, a deficiency, an autoimmune reaction or something else is an ongoing puzzle and I would welcome suggestions for additional experiments. On 5th July I omitted that the supplements declare they provide at least 15µg vitamin D per day. 


Edited by PCB, 01 August 2013 - 04:21 AM.

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#9 AlwaysLearning

 
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Posted 01 August 2013 - 08:37 PM

I've noticed some night blindness in one eye, though am just starting to get my vitamin deficiencies figured out. And though malabsorption is definitely a problem that goes with celiac, it becomes a problem for anyone as they age. By the time I'm 80, I'm guessing that I'll only be absorbing part of what is actually in my multivitamin.

Two thoughts. Do your own research when it comes to "normal" ranges for vitamin levels. Don't just trust that your doctor says you're within the norm. Get them to tell you what your numbers are. Being out at one of the ends of the normal range often isn't okay though many doctors refuse to accept that you can still have symptoms. 

And though I don't know the answer to this question, what other vitamins or minerals may be involved in the night-blindness equation? Though the vitamin A levels might be okay, maybe your body is low on something else it needs to heal. From what others mentioned here and my own research, I'm going to ask my doc about A, C, B1, B2, B6, K, Ferrith, Copper, Zinc, Potassium, and Folate, in addition to the D, B12, and iron that I already know are low for me.

Also, I wouldn't overdue the fish oil, from fish or a supplement. There was a study released just this past week that found that too much is really bad for us, and I think it was the omega-3 specifically that was the problem. 

And though many people do have problems with nightshades, I wouldn't overlook that the carbohydrate factor in the potatoes. I also don't know the answer to this question, but what affect does blood sugar have on night blindness? Or circulation issues?


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#10 GottaSki

 
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Posted 01 August 2013 - 09:17 PM

I am another that intermittantly lost the ability to drive at night a few years before I was finally diagnosed. I am now four years gluten-free --- not sure exactly when this symptom improved....I think it was at approximately 18 months gluten-free. Currently I drive at night with no problems unless one of my intolerances jump in my path.

NotMe....so glad you regained your independence in the dark...next step...superhero ;)

Welcome PCB! From what I understand nightshades get their name from being more active at night. Potato, Tomato, Peppers and Eggplant all belong to the Solanaceae Species as they all produce Solanine and are more commonly known as the Nightshade Family. They are high in Lectins as are several other groups of foods....grains, dairy, legumes, nuts, seeds and eggs. Some with Celiac Disease have trouble digesting these foods properly until their digestive system has time to heal.
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3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#11 PCB

 
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Posted 16 August 2013 - 02:32 AM

Fifth instalment! An encouraging progress report. After eliminating potatoes, tomatoes and peppers there were no scotomas. Potatoes were then started again: still no scotomas. However on adding tomatoes the scotoma in the left eye came back after two days. Eliminating tomatoes again for three days has made it disappear, so it lasted a week altogether. I now have to make sure that it is due to tomato and not some other food in that amazingly extensive list of foods which we are privileged to eat. Mainly home-grown tomatoes might explain why these scotomas have only occurred between May and September each year. Lisa - I still hope someone is going to find a more convincing explanation of why nightshade plants got that name!. It does seem that some celiacs have a night vision problem which improves, so perhaps we shall get more interesting posts with ideas about why it happens.


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#12 notme!

 
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Posted 16 August 2013 - 07:31 AM

pcb - i have read the same thing about why they call them 'nightshades' - they do their growing at night.  in googling research, i was lead to the DEADLY nightshade plant called:  nightshade lolz.  i guess they are in the same family.  

 

you are so diligent in your experimenting!  i love your installments :)  i am a huge fan of food journals because they are so helpful to us to see exactly what we are eating to cause different reactions.  if you try to remember at the end of the day (or when you start feeling lousy) what you have eaten, it is difficult.  when i am trying to figure something out, i go back to journaling.  i like the way you are researching your reactions.  

 

i don't take any supplements except vitamin D and occasionally some B12 and i had my blood tested last week.  it came back with NO deficiencies and i was very happy.  this means my gut is finally absorbing better.  my balance has improved so much (ok this is wierd) that i dropped a paper towel on the floor and couldn't pick it up and put it into the trash because my hands were full.  i was able, (without thinking about it i just did it) to pick it up with my toes, balance on one foot, and get the paper towel into the trash can.  wow.  a few years ago, i had trouble keeping my balance standing still!  

 

i attribute all these improvements to healing, and especially healing neurologically.  my 'cylinders' must be 'firing' as they should!  glad to hear you are making progress as well :)  keep us posted on your findings!


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arlene

misdiagnosed for 25 years!
just as i was getting my affairs in order to die of malnutrition...
gluten free 7/2010
blood test negative
celiac confirmed by endoscopy 9/2010

 

only YOU can prevent forest fires - smokey t. bear

 

have a nice day :)

Celiac.com - Celiac Disease Board Moderator


#13 PCB

 
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Posted 28 August 2013 - 11:14 PM

Sixth instalment! Our greenhouse is full of tomatoes of different varieties so the next experiment lasting 4 days was to eat plenty each day baked at 150ºC for about 45 minutes. No scotomas. On 23rd August raw tomatoes were substituted and that night on going to bed and turning out the light I had unexpected and most amazing scotomas which looked like a fat fish with the tail at the blind spot (the end of the optic nerve) and the round body over the central visual field. The fish was therefore swimming to the right in the left eye and to the left in the right eye. They were visible by the light of the clock radio and over the next 2 hours gradually faded though I could still see them clearly by bringing my luminous watch close to the eye. By the 26th the scotomas were back in their usual form so I switched to cooked tomatoes and by the 29th the scotomas had gone again. Conclusion: the scotomas are due to something present in raw tomatoes but not cooked tomatoes. Any further thoughts Lisa or Arlene? 


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#14 eers03

 
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Posted 29 August 2013 - 06:06 AM

i had so much trouble seeing at night, (especially if raining!) that i gave up driving at night - what a pain!  even if i was 10 minutes away from my home, i left before it was too dark for me to drive home.  i am 3 years gluten free (celiac dx) and i have just regained my vision and confidence to drive at night.  i even drove home at midnight in the rain a few months ago :) very very happily!!  it's empowering to take back some independence!   i suspect my malabsorbtion had plenty to do with it - before i was diagnosed my body was starving despite eating.  plenty of symptoms have cleared up gluten free - because my intestines are healing my body is now getting the nutrients it needs to work properly.  i am on a vit D supplement, and i take sublingual b-12, multi-vitamin when i remember to, lolz.  the doc checks my vitamin levels and others seem to be ok :)  i am 50 but suffered with this unknowingly for 25 years before dx.  good luck sleuthing!  

I enjoyed reading this very much.  I have intermittently had some issues with this as well and my eyes "appear" fine to my optometrist.  Good to see it can work its way out.


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#15 notme!

 
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Posted 29 August 2013 - 08:16 AM

good morning, pcb :)  i am glad you are experimenting and here is why:  i have been having a little trouble with my left eye for the past month or so.  nothing serious but it's annoying enough for me to notice it.  when i read your progress this morning, it made me say:  hmmmmmmmmm.....  raw tomatoes!  i have been eating (probably way too many  ^_^  and they still give me a little trouble digesting if i eat too many in one day)  raw tomatoes out of our garden.  they are so delicious i can't resist!  i upped my probiotic to 2x per day just so i could eat more of them.  i grow tomatoes because i hate the ones at the grocery store, they are all hard and wierd.  but the ones from my garden are juicy and delicious (and i only eat them like this once a year)  so i eat them on everything.  even by themselves :)  i cooked some for sauce that i freeze so that will be my experiment <same tomatoes, only cooked)  when my garden stops producing these luscious gems, i will stop eating them and see if my eye goes back to normal.  (not today, though!  i have tomatoes to eat!   :P )  then if it does, i'll try the sauce.  i suppose i will have to eat some every day, poor me (not!  it is delicious as welll!)    :lol:


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arlene

misdiagnosed for 25 years!
just as i was getting my affairs in order to die of malnutrition...
gluten free 7/2010
blood test negative
celiac confirmed by endoscopy 9/2010

 

only YOU can prevent forest fires - smokey t. bear

 

have a nice day :)

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