Celiac Night Vision

[notme]

i have been eating very ripe, delicious tomatoes - honestly, the darn plants are *still* producing fruit!  i drove at night on friday evening - i was ok, but it seemed unusually dark  maybe the moon wasn't shining, but i drove almost the whole way with my bright lights on and our neighborhood is relatively well lit..  in any case, i can't resist the tomatoes!    so i will be eating them for another few weeks until i run out of fresh ones from the garden.

[PCB]

Hello anyone still interested in this subject!  The scotomas disappeared on the 24th September last year and did not reappear until the 26th March this year. Since then there have been 5 episodes with clear gaps. The latest has been going on since the 1st June. The scotomas peak each year in June and July and the present peak has varied considerably. The food diary kept for the last 3 months clearly shows that they cannot be due to tomatoes alone. They are either due to multiple foods or something else. I have just done 5 days excluding all nightshade foods and the scotomas first increased and then decreased slightly. I thought originally that they might be due to nightshade alkaloids which affect nerve conduction. These vary in concentration, are excreted slowly and are fairly heat stable. Lisa (GottaSki) mentioned lectins, another group of compounds found in grains used by celiacs, nightshades, legumes and dairy products which can bind to various tissues including gut wall, blood cells or various organs including the brain. Cooking is said to lower the toxicity. I recently read about profilins, proteins involved in cell structure in animals but also found in some fruits and vegetables including tomato. They are also present in pollens and can act as an allergen. The grass pollen season here extends from April to September and I am feeling slightly hay fevered at the moment. Perhaps I should be paying attention to the weather record rather than the food diary! More ideas for experiments please. My wife is marvellous at making simple gourmet meals excluding things!  

[GF Lover]

Have you seen an Opthamologist about the Scotomas?  There are other reasons for them aside from food.

 

Colleen

[NatureChick]

I don't know anything about Scotomas, but aside from investigating the foods high in fructans, have you considered that the seasonality of the problem could be related to having more sunlight exposure in the summer? Have you tried to limit your light exposure with the use of hats and darker/bigger sunglasses? 

[PCB]

Colleen: see posting 5 July 2013. The ophthalmologist wrote ' to be honest I could not find any pathology to account for this scotoma . . . '

NatureChick: sun exposure and optometrist see posting 1 Aug 2013

The only reason I am posting all this is because this symptom so far appears to be unique. In case it has a celiac basis this seems to be one place to look for answers..  

[GF Lover]

Colleen: see posting 5 July 2013. The ophthalmologist wrote ' to be honest I could not find any pathology to account for this scotoma . . . '

NatureChick: sun exposure and optometrist see posting 1 Aug 2013

The only reason I am posting all this is because this symptom so far appears to be unique. In case it has a celiac basis this seems to be one place to look for answers..  

 

I believe you said in one post you saw the Hospital Eye Clinic.  Then you saw an Optometrist.  I asked if you have seen an Opthalmologist.  

 

Good luck with the Nightshades 

 

Colleen

[PCB]

As people still seem to be reading this thread here is an update. After eight bouts of the scotomas through the summer (they were continuous through June - August) they disappeared at the end of September. We live in southern England and the National Pollen and Aerobiology Research Unit at the University of Worcester kindly sent me pollen counts for near this part of the country. The scotomas started with the onset of the birch pollen season but it was not obvious that the gaps coincided with changes in pollen count. I did a DST home FastCheck POC IgE blood test for inhalant antigens about a week after the last scotoma and there was a weak positive to birch pollen and stinging nettle pollen.

[Solandra]

This is interesting, I noticed some night blindness in the past couple of years, worse in one eye. I never used to wear glasses before and I suddenly had to get them for distance at 30... before that, I was pretty much 20/20. How frustrating that it could be related.

[PCB]

As people still seem to be reading this thread here is an update. After eight bouts of the scotomas through the summer (they were continuous through June - August) they disappeared at the end of September. We live in southern England and the National Pollen and Aerobiology Research Unit at the University of Worcester kindly sent me pollen counts for near this part of the country. The scotomas started with the onset of the birch pollen season but it was not obvious that the gaps coincided with changes in pollen count. I did a DST home FastCheck POC IgE blood test for inhalant antigens about a week after the last scotoma and there was a weak positive to birch pollen and stinging nettle pollen.

After doing the IgE test I was sent September nettle pollen data for Worcester (which included all members of the Urticaceae). Levels decreased to low about the 11th and almost disappeared by the end of the month. The scotomas could therefore be a reaction to pollen but I will perhaps try to do an IgE test for tomato allergy next year if the scotomas return.   

[1desperateladysaved]

I discovered recently that I react to harvest dust in the air.  I wonder if allergies to something like that could cause eye trouble.  I see you are on to that trail with the nettles and birch idea.  I live near a grain silo (within 10 miles) and the unseen dust evidently gives me some of my old celiac symptoms.  Over recent summers it has seemed so mysterious this sudden reappearance of symptoms.  Late this year I felt the old fatigue and mind fog, and was instructed to put on a dust mask.  After 3 or 4 days I felt much better.

 

Years ago, I remember a time driving at night when small signs turned to  blurs.  I don't have this problem anymore, It did go away when I went on a supplements as recommended by my chiropractor. PCB Have you had your nutrient levels checked?  I can't remember if that were mentioned above.

[PCB]

Next update! Scotomas disappeared as noted in September and returned on the 2nd March 2015. They disappeared again twice but have been present continuously since April. This is now the 6th year. They are more persistent with fewer gaps each year but have always vanished for five months in the winter. I usually eat baked tomatoes but ate them raw a few times this winter without scotomas. Winter tomatoes are not as good so we eat them less often. Is it tomatoes, pollen or both? I am still anaemic, Hb 12.4 g/dl, but B12, folate, iron, vitamin A and vitamin D were normal .We take 1 multivitamin + mineral tablet (about 100% RDA) and 1 cod liver oil capsule daily.  More suggestions please!

[knitty kitty]

Bilberry helps me. Very interesting about the nightshades affecting your vision. Bilberry was used by pilots in WWII to help their night vision. I've enjoyed reading your posts. Thank you, sir.

[PCB]

Here is a description of the scotomas to help others with celiac night vision problems compare their symptoms. The scotomas are usually at a maximum about this season. In the night against a dim ceiling they are round dark areas affecting central vision about 20 degrees across. At first light they seem to get slightly smaller and more triangular in shape, with a rounded point at the top and the main mass below. Next, central vision comes back as a bright hole in the upper part of the dark area. As the room gets brighter the scotomas seem darker, and if the eyes are shut suddenly they are still visible briefly but now bright against a dark background. As daylight arrives they break up and disappear completely. When the scotomas decrease over a few days before vanishing the hole extends to the edge of the shadow area forming a C (or reverse C on the right), and then the top of the scotoma disappears leaving a curved bar shape below the fixation point which diminishes to a spot and then vanishes completely.The scotoma has always been denser in the L eye. Still thinking about lectins, we tend to eat greenhouse tomatoes less ripe than bought ones, and I am blood group A, which d'Adamo thinks increases sensitivity to tomato lectin. I am still anaemic despite strict gluten-free diet. I hope the experts out there still reading this will have some ideas. Would a positive Coombs test suggest that lectins are involved?.  

[PCB]

The scotomas this year disappeared finally on the 18^th October. Are they caused by toxins, the immune system or malabsorption?  From the 7^th Sept – 14^th Oct I avoided all tomato products. On the 22^nd September I had a CLA-1 blood screen for IgE allergies by the Biolab Medical Unit, London. Inhalants were all negative including birch and pellitory (a relative of the stinging nettle). Tomato was also negative. Some stinging nettles were still in flower so in case it was not an IgE reaction on  6^th November I ate about 20 strands of plump nettle flowers boiled for 1 minute, and the next day ate the same amount uncooked with home grown tomatoes. No scotomas either time. I have in the past suspected that apple gave me migraine and hazelnut made me itch but have not confirmed this by experiment.

The science of Vitamin A is now just over a century old. NatureChick (4 July 2014) suggested hats and darker sunglasses to limit summer light exposure. Dietary vitamin A deficiency is mentioned in historical accounts as causing night blindness (nyctalopia) in SUMMER in US Civil War soldiers and fishermen, so clearly sun exposure is important. My scotomas were not more noticeable in the evening. Websites listing celiac symptoms often mention vitamin A and zinc malabsorption as a cause of night blindness but searching online I have found no convincing case records of celiacs with nyctalopia. I have also been right through the topics listed in this forum and only found one other posting mentioning night vision improvement – Vision by PaleoMan 13 Mar2004. Nor have I found any accounts of variable scotomas in summer recurring over years.

I have written to various experts in vision and allergy. Few replied and only one offered a suggestion:  that I should think again about malabsorption, diet and supplements. My blood tests since going gluten-free + supplements include normal vitamin A (retinol) level of 2.2 (1.07-3.55), 25 OH vitamin D 103 ng/ml (70-374), vitamin B12 459 ng/ml (210-920) and serum iron 18 umol/l (10-28),. However I am still minimally anaemic (Hb 12.9g/dl) and my toes are still slightly numb. One ancient cure for night blindness is eating liver, so in case there is something in liver not present in the supplements I intend to exchange my daily cod liver oil capsule for liver pate.  AlwaysLearning (2 Aug 2013) would probably approve!  Let us see if the scotomas come back next spring.

Unless other people present with similar symptoms, more definite than those described by notme!, these recurrent nocturnal scotomas will unfortunately not be investigated by experts.

 

[GFinDC]

Hi PCB,

You sure have a mystery symptom there.  Some other things that might change with the seasons, perhaps switching from drinking tea to coffee, or maybe eating less soup in warm months?

Since your symptoms vary with the seasons it sure seems like they could be related to allergies.  I think if you read up on birch allergy you'll find that some people with birch allergy also react to celery.  http://www.anaphylaxis.org.uk/knowledgebase/celery-allergy-the-facts/  Often enough it's not just one plant species that causes allergic reactions but a family of related plants.  http://www.healwithfood.org/allergicrhinitis/birch-pollen-foods-avoid-list.php

The numbness in your toes is another clue, of what I am not sure though.  I assume your blood sugar is ok.  I knew a fella with high blood pressure that had tunnel vision sometimes but that's different also.

How about trying an anti-histamine next time the scotoma occurs to see if it causes any  improvement?  If it results in an improvement in symptoms that might mean the cause is an allergic reaction.

Some other things to consider are possible low thyroid and selenium.

Myself I don't eat nightshades or soy or dairy.  And I don't have any scotomas at night.  I am also low carb and mostly paleo.  For some reason the hair on top of my head is getting a little thin though.  Can't win 'em all as they say.

[PCB]

Thanks for your ideas GFinDC. My mother had rickets as a child and thyrotoxicosis after pregnancy treated surgically. Her mother and both her mother's sibs died of diabetes. My BP is around 115/75, wt about 63kg for years, blood glucose 6.6mmol/l pp (n<7.8) last year.  I have the genetic basis for celiac - eg HLA-DQA1 Rs2187668 TT (risk allele for celiac T). The level of selenium in our supplement is only a third of RDA so it is worth considering even though dietary deficiency is unlikely. Celery has no obvious connection to scotomas. 

 

[PCB]

Scotomas returned for the 7th year on the 24th February despite liver pâté and have varied since with 3 brief gaps. I have always had migraine, latterly occurring more than once a month, usually of basilar or retinal type with aura (but no headache) lasting less than 5 minutes. A recent bout looked like a TIA and led to a CT scan which revealed clear major vessels but old cerebellar infarcts, so maybe migraine accounts for poor memory too. The scotomas are very different from migraine eye symptoms - stationary, irregular in shape and lasting hours. I think food is excluded as the cause but seasonality, gaps, variation with wind direction and rain mean that pollen is still a possibility. Scott Adams did a marvellous thing founding this site so celiacs could enlighten each other. Please post if you have anything like these scotomas!

[cristiana]

Hi - think I remember 'speaking' to you before but can't find the post!  Thanks for the update.  I had painful headaches which got worse and worse as I went into my twenties.  They became auras - kind of silver grey paisley pattern - without pain just before I had my first child, at a time when I started to experience hypnopompic hallucinations ( seeing repeat patterns for a few split seconds on waking in a light room -  hated it at first but apparently even 'normal' people can get them!!!  They were really scary at first but reading about them on the net has help diffuse that fear).   Repeat MRIs unremarkable. 

Then three years ago I was quite separately diagnosed with coeliac disease.  Keeping off gluten religiously I hardly ever get headaches any more; still on occasion get hypnopomic halluciations but try not to be bothered by them now -  still get an aura maybe once a year?  In the last two years I have had a couple of scintillating scotomas - very pretty.   Lots of gorgeous sparkling lights. In the centre of my vision.  Only in bright light when I look at something white.   So tiny I might have had more but not noticed.  Much tinier than in this pic.

https://en.wikipedia.org/wiki/Scintillating_scotoma#/media/File:ScintillatingScotoma3.webp

Reading the above link they say that MSG may contribute?  Not sure.  I had my first in Minehead last April.  My second just after Christmas.  Can't recall what I ate!

My own take on all of this is that once one has a diagnosis of visual migraines one can almost expect anything!  

[PCB]

Thanks Cristiana. It was Mistyx7 and night driving. Migraine type is very personal but does not appear to be closely connected to celiac or my peculiar scotomas. If you think going gluten-free has improved it that deserves a separate topic!

[GFinDC]

I don't have scotomas but you might find more help on a forum dedicated to vision issues.  Here are a couple I found.  the last link is a Yahoo search for "eye forum"  There may be others found if you try a search on Google.

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

[PCB]

A very good suggestion GFinDC. I have thought for some time that I should have made the title of the topic night vision celiac because it may have nothing to do with celiac disease even if it started at the same time. Key words are so important. I will search first and may post on one of these sites later.

I have now searched quite extensively and have not so far discovered anything helpful except that if you google night vision scotomas you get to this topic!

[PCB]

On 4^th June I posted on the ehealth vision forum under the title seasonal night vision scotomas, but there were no replies. I have just had my eyes tested by an optometrist. Acuity is 20/25. She did field testing and Topcon tomography and did not find anything alarming for my age. However in dim lighting against a light background I can sometimes see a round slightly greenish area about 20 degrees across with lateral extensions to the blind spots. Shutting the eyes suddenly makes it a light area. The scotomas occur within this area. I can also see those intriguing blue arcs of the retina with both eyes (though they always look violet to me). Trying to identify what causes migraine, scotomas and possible celiac symptoms is notoriously difficult which is why there are no good papers on how to do it. I continue to keep a daily record of foods, symptoms and anything else which seems relevant listing what is being avoided and highlighting possible clues. notme! - we are eating tomatoes and potatoes this year! Good luck to other celiac detectives!

[PCB]

After this post I will leave the subject of night blindness to others. Thanks to those who have offered suggestions and to Scott Adams for creating the forum. It is a fine website and I also like the review articles by Jefferson Adams.  I have suffered from patchy night blindness in the summer only for the last 8 years. The winter reprieve is now less complete but I was more or less free by the end of October 2016 and it started again in March 2017. A description of the scotomas was posted on July 4 2015 and the picture shows at the top the L and R eye scotomas on June 25 2017 at 4 a.m. Summer time, and below as they diminish just before dawn. The only problem they cause is reading the time at night. So far they are unexplained and still appear to be unique, though notme! GottaSki and Solandra all mention night vision troubles. I found a paper by Daniel Organisciak Ph.D:  Retinal Light Damage [2010] in which he mentions that experimental damage to the rodent retina by bright light affects the night vision rods particularly in the upper hemisphere of the eye = lower visual field, spares the periphery and may have fairly sharp boundaries. This sounds rather like my scotomas! I went through records to see if they were smaller after a cloudy day but there was no clear relationship. Topcon fundus photos etc today suggested that my eyes were normal for age. There must be someone out there with similar symptoms who has not noticed them!

 

[Jmg]

38 minutes ago, PCB said:

There must be someone out there with similar symptoms who has not noticed them!

In which case you've done them a good service with such a thorough and fascinating account of your own symptoms and efforts to resolve them. I've really enjoyed reading this thread and hopefully it will prove useful to others. Thanks PCB!

[Ennis-TX]

I used to have issues with seeing stuff in the dark or low light, started way before I even knew about celiac disease. I have no clue if it is related or has any relevance to this topic. My issues came about to do something with blood circulation I guess, around this same time I had issues with various blood circulation issues. I solved both these back then and to this take still take both cinnamon oil, and bilsberry extract twice daily to help with circulation and opening of capillaries. It resolved many of my issues with vision, always being cold, randomly having body parts go to sleep if I did not move often. I think I have been on both of those without missing a dose for over 7 years now.