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About jaywalker

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  1. Oh! gotta have another little grumble about the NHS. To my great surprise, they were actually willing to prescribe the Vit D for me! (since i qualify for free prescriptions, this is an imprtant difference). However these turned out to have geletine capsules (not veggie!) and...wait for it...peanut oill (which I react to very horribly) i was told that these were the only ones I could have on prescription and would have to buy my own Vit D, if not suitable *Sigh* Shoulda guessed that in the first place.
  2. Thanks for all the replies! I should perhaps add that my research into my symptoms suggests an underlying systemic disorder of some kind, plus a shedload of complications, including probably some of the things you've mentioned. I've had all kinds of tests , but nothing has ever showed besides vit D deficiency (now supplementing). I think the main problem is that the NHS isn't willing to offer the right sort of tests, which would include a gut biopsy IMO, as the food issues began with gluten (about 7 years ago)and I'm sure my symptoms suggest some pretty serious bowel damage, though i tested negative for antibodies. The foods that I now avoid all cause me bring up ridiculous amounts of wind 5-6 hours later. And I do mean ridiculous. It can hard to catch my breath inbetween burps, and it fel as if my stomach is in danger of exploding. At the same time, I feel nauseous and suffer a range of acute neorological symptoms. Plus other symptoms, depending on the specific food. Given the wide range of foods that cause these acute reactions, its enough of a challenge to devise a healthy, affordab;e diet out of what's left. And if i ever manage that much, then it will time to consider if some of those foods might have a more subtle effect, I think. And if i might be better off cutting some of those out too. Obviously, for a Briton on a very low income, cutting out bread and potatoes is nigh-on impossible, so i'm very glad to report that, whatever the theory says, I do tolerate potatoes ...at least a lot better than those other things. As regard the refined sugar: yeah i know that's not a good compromise, but it is very cheap and readily available, and the only other realistic instant energy food that I've found is bananas ( i mean instant in the sense that it takes no preperation and cooking, which is often very important factor). I've ben using this since I realised that my "seizures" (in quotes because it hasn't been confirmed if they aere actually seizures or not. they just look that way) are most often triggerered by low blood sugar, if not exercise (which would lead to low sugar, right?so that's to say the same thing, i suppose), Since I made a point of eating something every 4 hours, if only a handful of sweets, I've had much less trouble with this, and that overrides the general health considerations. If I do have one of these "seizures", then I usually spend the next three days sleeping most of the time, and feeling pretty groggy when awake. Then everything, diet included, goes to pot! It's a case of choosing the lesser evil, there! By the way, I'm sure my menopause had a very big negative impact on all this. I asked my GP about HRT,but she said they don't like to prescribe it these days due to side effects ( Am I being cynical for suspecting it's more due to cost? ) I've repeatedly tested as OK for B12, but then that's one of the things that's added to Soyamilk. And it's also in the probiotic supplements I'm taking. I used to love Marmite! Yes, I put in soups and stews, just the same ! But I have sufferered from candida overgrowth, in the past, and heard it's beast to avoid yeast products in that case? Anyway, I've cut out in the course of elimination diets of course; and never yet quite had the courage to try re-introdcing it. Not sure how I'd eat it now. can't spread it on bread! And i just don't have the stamina, and co-ordination, for making soups and stews anymore . I got tired of makinfg a huge mess of the kitchen, scalding myself and/or falling asleep before I'd finished preparing my meal! (the last being what totally discouraged me in the end). But I'm sure I'll think of something (maybe spread it on my microwave-baked parsnips?) well, I gave up meat and eggs about 30 years ago, and dairy 7 years ago, due to intolerance. So that averages to nearly 20 years I guess Interstingly , I gave into my cravings for eggs, when I was pregnant with my son 24 years ago, just in case my body knew what it was doing (I fondly recall how his Dad used to drive me to a nearby farm once-a-week , to buy them. We could see the chickens happily scratching round the shed where the eggs were sold, and the ducks in the pond, so no doubt about them being proper free-range eggs ) I gave them up again afterwards, but my son remains a fanatic for eggs! I used to love liquorice, but liquorice sweets always seems to have added ingredients that I can't tolerate (and/or gelatine ofc) plus they are chewy of course, as are the natural liqorice sticks that i bought for a time. I wonder if there's a simple way tp mke natural liquorice less chewy? (lost all my teeth now)
  3. Heck, give up potato and fruit as well is the last thing I need to hear I think I'll pass on this lot. one man's meat is another poison, as they say, so whilst I'm sure it works for you, I'm not all convinced that vegetarianism is an issue. I don't see veggies posting here in huge numbers, as would surely be the case if a veggie diet contributed to gluten sensitivity etc. jay Well, I found the Boots ones to be surprisingly cheap, and they seem to contain full RDA of just about everything, as regards vits . Just a bit concerned about amino acids. I haven't dared try soybeans, nor Tofu (formerly a favourite) , since reacting to all the other legumes I've tried. Coffee (usually granulated) and soy milk are the only exceptions I've found; and I have an idea that whatever -it-is I'm reacting to might have got processed out of the beans. So, supposing I ate the unprocessed beans and had a reaction? That might, conceivably sensitise me. Highly theoretical, but given my dependency on Soymilk, not worth the risk. My experiences with seeds have not been good . So before I even thought about trying to add some expensive seed to my diet, I'd want to there to be clear benefits that I couldn't get any other way. It goes without saying that the variety of foods available these days is too vast to experiment with everything, so there might well be things that would work for me, but i never found good enough reaason to try. Was kinda hoping that somebody would know exactly what a meat-free , grain-free would be likely to miss, and how to compensate for that particular imbalance. Thanks for the response
  4. If I could re-run my own life, I'd go a diagnosis now, whilst the symptoms are relatively mild, as they do tend to increase with increasing exposure to gluten; and you don't sound convinced enough to stick this out long-term. Also, you probably haven't even done enough research,yet to fully eliminate Gluten from your diet. It crops up in some very surprising places. Yes, there is certainly a danger of getting a false negative; also, you might be gluten intolerant rather than celiac (which basically means you get the symptoms, but no detectable antibodies etc). Don't rule that out! Still, the possible benefits of a timely diagnosis outweigh the problem of a false negative, IMO (which is only as muchof a problem as you let it be! To the medical profession, refusal to do the challenge and negative result are just about equally weighted, in my experience ) Whichever you choose, good luck! jay
  5. Not sure I chose the right sub-forum for this. Please feel free to move it I stopped posting on this forum for about 2 years. I recently returned because Google searches kept throwing me back here, and I realised I could find a lot more answers and relevant discussion here than anywhere else. Also I realised- crucially- that this forum makes no distinction between Celiac and Gluten Intolerant, except where relevant. And it's not often very relevant is it? Given that it's nigh-on impossible to make a clear distinction, in practice, between the two groups (given lack of availabity, and unreliabity of diagnostic tests) and given that the two groups seem to have identical symptoms, identical co-morbidities, and identical problems in coping with the illness! So, hats off to this forum for recognising all that! But still, as somebody who's repeatedly had her symptoms dismissed as psychogenic, due to failing the blood test, I pretty much ceased to feel as if i had any rightful place on a celiac forum; especially given the increasing likelihood that I fell into the "intolerence" category (which wasn't really recognised at all, a few years back, when i started on this tortuos journey) I see that the sub-headings on the sub-fora give repeated clues as to the overall stance this forum takes. Again, well done! It would be churlish, I think to suggest a complete name-change. Still, I do wonder if that might be for the best. jay
  6. excuse belated reponse! (i've been absent from this forum, past 2 yesrs) interesting info! I just want to clarify, I'm not worried about MS (since an MRI scan - albeit arguably- ruled that out) just saying that if gluten can cause MS (which appears to be a perfectly respectable theory) then no reason why it can't cause TG, by the same mechanism (demyelination). That would neatly explain why early-onset TG can be a sign of MS wouldn't it? I mean, i just roped MS in to support my argument . Sorry if that muddied the waters! jay
  7. you're in America? I have American friends who daren't disclose their ASD, because it might disqualify them from health insurance altogether...or send premiums through the roof. . After much discussion, though nobody's convinced that we're better off in Britain, healthwise. My Dad was within weeks of dying of a metablastic melanoma, before doctors would believe there was anything wrong with him. When my mum asked for a brain scan, she was told she'd have to get it done privately, and she'd be "wasting her money". When he became too sick to travel to the surgery, they said there was nothing they could do for him if "he wouldn't come". They finally gave him the scan after being called out in the night becuse he was having seizures. He had two very large brain tumours. If he'd been living alone, he would have simply died of neglect, i suppose. Sadly, I've no reason to think my Dad's case is unusual.The NHS seem to give(arguably) good service for a select few illnesses only...assuming you manage to get diagnosed with them! To get back on topic - i note that at no point was I ever offerered a biopsy on account of my GI problems, not even back when celiac disease looked like a pretty solid bet (i was actually told, by a gastroenterologist, that there was no other possible cause for reactions to gluten). Biopsy looks to be standard procedure elsewhere. Hmm. I tell a lie. That cancer specialist would've offerered a biopsy, but since he and I agreed that we were barking up the wrong tree, and since he could only investigate signs of cancer, it was pointless. If it was an ulcer, as somebody plausibly suggested, i guess I'm pretty damned lucky that it healed. jay
  8. I disagree. I don't think you can possibly predict all the future sittations where Dx would be a big advantantage. Here in Britain, the fact I can't get gluten free food on prescription (and can't afford it otherwise) without a clear Dx of celiac disease has turned into the least of my worries. It's meant that I don't get any of known co-morobidities taken seriously either, when it matters. And don't forget, they're discovering new co-morbities all the time. So i say: don't turn back when you'tre so close to getting that Dx.  But I , too would question if two weeks on a normal diet is enough. And sorry, I really don't have the answer.
  9. hey Mommy Many thanks for all the feedback I think i answered most of your points in the other thread. Yep, I'm in England, As regards Private Medicine: Well, if i ever have any money to spare (and that's a very big "if") i do intend to blow it on private medicine. And whilst I'd very much like to go outside the mainstream, my priorities would be as follows: 1) A private neurologist, to get the possibility of congenital Mitochrondrial Disease investigated. My research on the internet (prompted by autism newgroups , who sent me articles about the recently discoverered links between ASD and MD) has led me think this is an overwhelmingly likely possibilty. 2) A privately investigation ofmy ASD, because the NHS just wasn't prepared to refer me to a specialist centre for this. If I could only get a proper diagnosis, then future consultants might be willing to take my communication problems into account (ie bloody well read what i've written. as opposed to ignoring it and asking me questions instead!) The main consideration for me is that , failing a "miracle cure" 'm dependant on the state for providing my day-to-day living costs, healthcare and anything extra i might need in the future. Thus, if i'm gonna go on being sick, i really do need to be officially sick!or else i''ll likely wind up out on the street (after making myMum and sister destitute!) However, just getting that much is pipe dream, the way things stand
  10. i also forgot to say, all the rice products i use are processed in some way, since boling and steaming are too dangerous and time consuming for me ( i scald myself too often, and get worn out suddenly, so i go for things that cook fast, and that don't involve boiled water ) My favourite is Rude Health Puffed Rice, but I guess I'll be going without it awhile *sigh*
  11. I forgot to say I'm now also taking a probiotic supplement with loads of added vitamins and minerals (Boots own brand)
  12. Thanks for all the helpful replies, guys. One general point: my options are very limited by financial constraints, due to being on State Beneits (and losing a portion of the these- perhaps even the whole if i lose my Appeal-- as I was assessed as "fit for work"in 2012). My family are helping, but unable to help very much, nor forever! I also have very limited mobility these days, so if it can't be got from my weekly trip to the supermaket (A friend give me a lift) it can't be got. I know that many things can be got online now, but -apart from difficulty paying- i find that i miss deliveries, due to narcolepsy! Thus, when it comes to careful sourcing of foods, I just have to cut them out instead @mommy 2krj: Obviously i can't follow a proper paleo diet, but it does look like i might get some useful ideas from it. Thanks! Done and dusted. I've done an elimination diet every time I've developed unex[ected symptoms. The problem now is that the foods that I've successfully re-introduced are horribly limited! Basically: potatoes and other root veggies (usually baked in microwave, as clumsiness/ataxia/narcolepsy all serve limit my food preparation) leafy green veggies (mostly lettuce, "salad cress" and frozen spinach) fortified soya milk various fresh and canned fruit (whatever is relatively cheap!) coffee (don't nobody tell me to give up my coffee!) refined sugar (often in the form of boiled sweets. though i have to be extremely careful re added ingredients) fresh and dried herbs (particularly basil, mint, parsley) white wine vinegar mushrooms (occasiinally. not too sure that i really tolerate them) orange and apple juice (the cheap stuff, from concentrate) black pepper (when feeling brave. it's a spice after all, and my body doesn't seem to like spices anymore) ginger (yeah, i know that's a spice, but it's from a root not a seed. isn't it?) salt In defense of the the refined sugar: i used to exclusively use artificial substitutes before i got awful reactions to those (surprise, surprise!). I recently increase my sugar consumption since realising that low blood sugar impacts on my health pretty drastical;y. Now i constantly carry boiled sweets around with me, for emergency use; andI do tend to over-use them when suffering a bad bout of nacolepsy and fatigue(i.e. at least 30% of the time) I know its not a great idea but it's better than eating nothing at all, which is the all-too-likely alternative (when feeling sick to death of bananas! . or even running out of them) I've repeatedly had to cut out all refined fats and oils, including Olive Oil, but, just as with rice I do cautiously re-introduce for periods. I even eat potato chips (French Fries, to you americans) on occasion! I have indeed considereed that, and looked into chlorine treatment of food, since I do know that i'm very sensitive to chlorine. What i found is alarming! But in practice, jyst about all i can realistically do is drink bottled water only, avoid processed foods insofar as i realistically can, and hope for the best! One curious thing i found is that ground foods (eg ground rice) affect me more easily and more severely. That could be due to chloribe absorption, or other contaminants, i think. Whateverthe cause it's a blow! because ground foods are much more easily prpared and much more easily eaten (now I've lost my teeth). I'd started to really enjoy microwaved ground rice puddings! Hmm, my use of nut flours etc was always pretty limited due to high cost. And now my problem with ground food also makes me wary. Coconut is relatively cheap of course (deprnding on individual product. The milk isn;t cheap). I recently dicovered coconut cream in the supermarket and was using that as a topping for fruit for a while. My latest rash of sever food reactions has made me call a halt to that, but i do intend to try re-intoducing it, soon as I feel brave enough. I'd also started eating almond paste as a snack, which was probablty worse but i thought it might be better, nutritionally speaking , than boiled sweets! I know it's a fruit, but that doesn't stop it being an energy food! what she said was like saying " A grandfather clock isn't a timepiece, it's an item of furniture" Would you trust an antiquarian who told you that?
  13. Hi, before I went gluten-free aboutv 6-7 years back, i found i was having attacks of severe indigestion which were always followed by attacks of nacolepsy, lasting up to 3 days. I'd spent maybe a year [previously ignoring these symptoms and hoping they'd go away. Prior to that I'd never experienced narcolepsy except as a symptom of illness or reaction to drugs, but rather had always needed relatively little sleep (5-6 hours) and could easily skip sleep altogether when busy ( a blessing since i'm slow). I had , however sufferered from recurring bouts of "arthritis" since my teens (i'n 54 now) and chronic fatigue since around the age of 40, both of which had considerably worsenened at that time. The gluten-free diet seemingly not only cured the indigestion and narcolepsy, but also the fatigue and "arthritis". Can't be certain of the other two, but certailny the GI symptoms and narcolepsy were triggerered by gluten, as evidenced by my numerous errors when i first went on the diet . to complicate the piccture, my good health didn't last long. I now get all the same symptoms (yes, including narcolepsy) in response to a widening range of different foods, and attacks of the narcolepsy out-of-blue, with no clearly identifiable trigger. The fatigue is now ridiculously bad. It's increasing;l looking like gluten is a trigger for this stuff, rather than a cause , in my case. But yep- definite association between gluten and narcolepsy, here.
  14. I have simlar symptoms with a whole buch of foods besides gluten, as well as eisodes that don't seem to correlate with food reactions at all. For me, it's easy to tell when it's triggerered by gluten, or other food, because I have simultaneous GI symptoms (primarily severe wind and bloating) all occurring 5-6 hours after eating, and theress a very clear transition from OK to awful under these circumstances The point is, don't rule out Gluten as a trigger just because other triggers might also exist! I'm becoming pretty sure that low blood sugar is also a trigger in my case (though that isn't accompanied by wind! thus was harder to pick out)
  15. ummmmm..... in a nutshell, things have gotten worse! think i've only survived this long without topping myself, because i finally was forced to confide in my family, who've been incredibly supportive. I put the Gluten Ataxia idea to my GP, who aid it was for a neurologist to assess that. However, the neurologist whom I subsequently saw (about 20 months ago) decided that all my symptoms were in my mind and due to "mental health problems". This opinion led to me being assessed as "fit for work" and Iwas disqualified from ESA (sickness benefit) accordingly. We (my sister and I) are still fighting that decision., and mmy family (who really can't afford to) are having to support me financially to some large extent. My doctor was , by that time stumped, because - whilst she does take my symptoms seriously- she'd run all the tests that she, as a humble GP, could authorise. I've developed more and more food intolerences, all of which clearly affect both gut and brain , much like the gluten (though asociated pain is at the front of my body, aroiud the bottom of my ribcage, unless it's actually gluten). An Allergist (whilst impressed with my detailed food diary and other notes) found I had no food allergies, and wished me the best of luck (saying "intolerances are not well understood" and also not considerered serious by the NHS, since they can't leadto anaphylaxis). Next, he gastoenterologist found nothing excpt gallstones(which he sais would not account for my symptoms) and was clearly suspicious of my entire account . He told me never had a patient who complsined of associated neurological symptoms. The nutritionist he referrered me to had no better advice than "You must eat grain" even though I was, by now, reacting to every kind of grain, including rice. Some things (especially peanuts) also trigger pseudo-allergic symptoms: eg asthma, sneezing, watering eyes, breathlessness, palpitations. in addition to the the "normal "symptoms! The allergist disdn't find that at all surprising, since that's not uncommon, according to him(and might possibly be due to histamine reactions in the gut, if i recall correctly) but it looks like other specialists just see that as further evidence that it's all in my mind I really wish that I did have allergies, as the Allergist is only Consultant who's ever really paid attention and taken my symptoms seriously. In the absence of that, i can't trust any of these other opinions. I've found thar my sensitivity diminishes inthe abscence of exposure. so I now re-introduce rice at intervals. then drop it again once i start getting severe reactions. Hoping for better ideas via this forum, so have started a thread about it! After hearing the neurologist's opinion, I actually did the gluten challenge, in a deperate bid to prove that some of my symptoms are real. I was surprised to find I could tolerate gluten again, and ate it semi-regularly for 7-8 months. After six monthas I took the blood test, which was negative again. a month or two later, my reactions suddenly started again and with such severity, I quit gluten for good. The fatigue and chonic neurological symptoms continue to worsen. I appear to getting seizures (my GP's opinion, as well as just about all non-ptrofessionals who've witnessed these attacks) but I've gone down in medical notes as having tested negative for epilepsy (a single hour of EEG, during which time, none of the really worrying symptoms occured) , and it;s somewhere between diffult and impossible to re-open that issue with the latest neurologist. I got that second referral eventually because my sister managed to get a vid demonstratiing the episodes of muscle spasms that I get when walking. But it only tells a small part of the story of course. There was far too much to say of course, and i'm useless verbally, I wrote it all down. But he didn't have time to read it. I just had an MRI scan, but I had one two years ago, which never showed anything, so that offers little hope. My follow-up appointment is in December. I think i'm just about ready to give up on that stupid charade. If I can't even communicate my symptoms, or ask for second opinions, it's useless, isn't it? Thanks for listening! PS I've since had all my remaining teeth removed, thank God. But...I've since been getting a lot of faceache, all over the place (including my ears! )which my Doctor says in Trigeminal Neuralgia, again (even though TG was also dismissed as "all in my mind" by that first neurologist, because it's atyipcal, or because she didn't like me, or whatever ) it looks like this was triggerered by the trauma of the surgery, and also looks like it's never gonna go away. On a positive note, though, it's not normally near so intense as previous bouts of TG. Thus the diagnosis surprised me, and led to a pretty thorough intenet search before i felt anywhere near convinced.
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