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PCB

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  1. On 4th 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!
  2. 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!
  3. 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!
  4. 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!
  5. 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.
  6. The scotomas this year disappeared finally on the 18th October. Are they caused by toxins, the immune system or malabsorption? From the 7th Sept – 14th Oct I avoided all tomato products. On the 22nd 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 6th 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.
  7. Cristiana - you are another celiac with night vision problems when driving. Have you looked at the topic Celiac Night Vision? If there are other celiacs with night vision problems which do not respond to vitamin A puzzling their opticians and eye doctors we might get experts interested enough to investigate why! I am admittedly in my second childhood, but had no floaters before or after going gluten-free
  8. I have confirmed celiac disease (family history of celiac and autoimmune disease, biopsy, enzymes) and recently had my genome done by 23andme. On websites such as eupedia.com there are lists of genes contributing to disease liability. The HLA-DQA1 Rs 2187668 risk allele T appears to be the strongest indicator (I am TT) with an odds ratio of 6, but other genes are listed with an odds ratio of around 2. It would be interesting to hear from celiacs who know more about this expanding field what useful information we can get from all this about family liability.
  9. 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?.
  10. In the UK we celiacs are grateful to non-celiac gluten avoiders. Since last year restaurants have to list allergens and many have gluten-free menus, which suggests that more than 1 percent of the population is avoiding gluten. The U.S. Is usually ahead in these things and I guess your labelling of food products is as good as ours with gluten-free prominent on packs and jars. I simply say I have to be gluten free and that is accepted,. As others have commented, you must be consistent or you will undo all the good work and goodwill that has got us here!
  11. 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!
  12. 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.
  13. 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.
  14. 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..
  15. 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!