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About martz

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  1. I went gluten-free in April after a diagnosis of Hashimotos. Immediately I started feeling much better and lots of symptoms - fibro, itching, brain fog etc - cleared up. However I started having really bad gut-ache and swollen ankles which I'd NEVER experienced before. My ankles were swollen and stiff and had hard, painful lumps on the achilles tendons. Thought it was some weird reaction to thyroid medication at first. There was a heatwave at the time so I drank loads but it didn't help. It got so bad I could barely walk and since I couldn't get my shoes on I was pretty much immobilised. Then intuitively (and thanks to this forum) I gave up all dairy and immediately the gut ache lessened and within a day or two the leg swelling had subsided. Within a week or so it was gone. I test it every few weeks and even a little milk in my tea will bring back the swelling and painful achilles tendons. Hope this helps.
  2. hi bluejeangirl, sorry I have been away for a few days. By now you will probably have googled "hypermobility syndrome (and) gluten" and found the hypermobility syndrome association forums. If not, it's: www. hypermobility.org.uk and although there is much talk of drug treatment/physio etc (what's new?) there is also some reference to diet and gluten exclusion. The syndrome seems to be associated with other conditions - FMS, CFS, IBS and anxiety disorders (panic, phobias, fears). More worryingly it may also be associated with mitral valve prolapse so it needs to be checked out. It's genetic so if no relatives are affected, it's unlikely to be that - something like 3 - 10% of the population have super-bendy joints but no other symptoms. Please don't panic as I did (it's pathological, you know, with us HMS types) to see it also sometimes described as Ehlers Danlos type 3. There is a lot of confusion but EDS type 3 and benign hypermobility may be the same condition and are both very much less serious than other EDS types. The main value of diagnosis is having so many things in your medical background fall into place once you know the cause. I am totally convinced that gluten sensitivity is involved (co-existing in genetic types or actually caused by, who knows?). Since going gluten free seven months ago, my joints feel a lot stronger, more dependable in that I can run or jump without worrying they'll dislocate, and the pain has gone (after close on 40 years). And I am no longer a nervous wreck. Hallelujia. Hope this is of some help.
  3. Hi all, shortly after posting about lazy eye earlier this am I remembered something. My symptoms also fit another 'syndrome' called hypermobility syndrome. I have never considered it before but the lazy eye was obviously part of all that. Like I say I'd had it from birth and had adjusted to it so it didn't come to mind until I read the earler posts. Also, in respect of HMS, I'd been too busy focussing on the pain and frequent dislocations in my knees, hips, ankles, jaw etc etc (all gone since gluten-free diet). HMS is a connective tissue disorder, basically the webbing that holds all your bits together are weak and flabby because they lack the collagen protein to strengthen them. It also seems to be accompanied by mood and sleep disorders and by fatigue (hardly surprising). And some on the HMS board are improving on gluten-free diet. Maybe gluten attacks collagen as well as all the rest or maybe the two co-exist in the same genetic types.
  4. Hello everyone, I just had to jump in here because of the last few posts talking about lazy eye. Also I'm hoping this thread catches the attention of any medical researchers checking out the forum. The more we chime in with our myriad symptoms, the more likely it is that this complicated disorder will be exposed for what it really is - ie a multi-systemic, autoimmune condition provoked by the ingestion of gluten in sensitive individuals, not necessarily characterised by major intestinal damage, nor showing high BLOOD levels of anti-gliadin antibody (try and find an acronym for that!). Ah, lazy eye - I was born with it too (charmingly called a 'squint' here). Mine was corrected with exercises but not surgery. So my right eye would always wander from time to time, especially when tired, and never 'learned' to synchronise with the other one. It never focussed properly so that, with my left eye shut, I could only barely read larger print. I've been gluten free for seven months now and have recovered so much of my youthful functioning it's much too long a list to go into in this post. But neuro symptoms were, and always have been, way out in the lead for me. Mostly anxiety (restless mind syndrome), but also post-natal depression, and a generally cynical, dark view of life since I was very young. It's ALL GONE. I can hardly believe it myself. I go around singing these days and I have found my inner 'nice person' which I had long despaired of even possessing (although I did a very good imitation of a chilled out person, I was anything but). Anyway back to the eye. When I read those posts this morning I wondered whether the lazy eye might be the 101st improvement to be added to my list. So I closed my left eye and OH MY GOODNESS, I could read almost as well with the lazy eye. At first I could hardly believe it, thinking this is one heck of a psychosomatic effect. But I am now typing this keeping only my right eye open and yes it is true - my right eye is functioning near-normally. I thought I was getting past the sense of amazement that's accompanied me for the past seven months as I've checked off one symptom after another but this one has to be the most thrilling - perhaps because it was my earliest. As someone mentioned a few posts back, not having an earlier diagnosis has been such a waste. Whereas pre-gluten-free, that thought might have sent me spinning into a gloomy place, now it's instantly replaced by a stronger one: ' YES, I HAVE MY LIFE BACK AT LAST'. Love to all, particularly those still in a difficult stage of recovery.
  5. Nantzi, I'm wondering if you are in the UK because the celiac UK assoc seems to require biopsy before acknowleding us 'intolerants'. Maybe I'm wrong and if so, I hope someone will enlighten me. But that's why I find myself here talking to all you lovely friendly Americans. I posted a few days ago to try and find mates here in SE England but no response. Think I made the mistake of inviting response from anyone following a gluten-free diet regardless of diagnosis. I know Brits are a conservative lot, and I think blind-faith in docs (and so-called science) is even more pronounced here, but honestly!!!! I came by here when I was diagnosed with Hashi's and, having followed Atkins on and off for about four years, strongly suspected gluten already. I have had health issues since childhood and they were getting worse by the year until eventually Hashi's showed up. I have always been fanatically into healthy eating (probably cause I always felt crap) but no amount of organics/supplements was halting the slow march towards incapacity. Now six months into totally gluten-free I feel as though I've experienced, in Nini's words, a 'miracle'. No exaggeration, I am not given to hyperbole. Of course my doc looks at me a bit funny but I don't care - my tsh has gone from 86 to 0.1 in six months. I know it could be the thyroxin but unlikely. Stupidly I ate out last week (without fully investigating the chef's prep methods) for the first time in six months and my reaction was extreme. That's why I wanted to find other sufferers locally because I would like to venture back into the land of dining out and felt I needed some old hands to guide me there. Also I would like to have some fellow sufferers for support. I think we in UK are a long way off understanding that gluten has many ways of destroying health besides classic celiac. My mum died of stomach cancer, complication of duodenal ulcer, and retrospectively she was sooo obviously GI but was never diagnosed. So I know how bad it can get and have spread the word to my family (still 'thinking' about it) and everyone else who will listen. But the resistence is fierce as you all know. You guys are the true scientists and eventually the rest will catch up. Thank-you all for the comfort and inspitation I have found on this board - I will always be grateful.
  6. hello everyone, I know this was 'done' in August with not much of response. But I really, really, really want to get together with some other people with similar diet restrictions - in my case gluten and dairy, principally, but not good with corn or soy either. And that includes celiacs, gluten intolerants, paleos, D'adamos or others. Not concerned with reasons why, just need buddies to maybe check out eating places, swop ideas and generally feel that I'm not alone with this. I have all this new-found energy (since diet) and am coping pretty well but friends can be a bit dismissive and I've only eaten out once (and then the anxiety kind of spoiled the experience) in six months. I live in Brighton but happy to travel to anywhere in region with a BR station.
  7. Hi, I am new here 'though been reading everything since March when diagnosed with Hashi's. Just wanted to say that it seems obvious to me why drug companies aren't interested. If gluten sensitivity can maifest with hundreds of symptoms (as seems the case) and let's say even 1% of the population suffers from it in some way (from mild to extreme), and each symptoms has maybe 10 drugs to treat it, that an awful lot of lost sales if diagnosis were ever to be 100%. What commercial entity would want to encourage that? In twenty or so years, you guys - moderators and contributors to this forum and others - will be the acknowledged pioneers in 'outing' this condition and certainly not the drug companies. But the internet (modern word-of-mouth) is a great deal more powerful than the established 'wisdom' as many an outdated and apathetic regime has found to its cost throughout history. So keep spreading the word and watch their power crumble.
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