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egs1707

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egs1707 last won the day on January 20 2017

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About egs1707

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  1. egs1707

    Overwhelmed and unable to accept

    Ennis your passion for leading the gluten-free lifestyle certainly shows through,and although I wouldn't necessarily advise following through the punching method I get what you're trying to say. On the flip side I could equally show you the shocked \ disgusted reactions people display when the celiac secret comes out... and trust me it always comes out one way or the other. As for bringing your own cup to a bar over here well... let's just say that wouldn't go well. Don't think I haven't tried the drink-only date, give me some credit lol but even if that goes well food is up on the next one and the reaction at that point is always the same. A slight variation on your quote I find although you can exist and eat enough food to get through the day it's not living. The living part is being able to pop into any random restaurant with your friends \ date spontaneously without carrying out a plastic box of food or worrying if a jacket potato has been cut with the wrong knife. Not to mention having to admit to celiac in front of people and watching \ hearing the sarcastic reactions for the hundredth time. It's not so much that, it's the change in attitude from people that's done for me. It's like celiac pretty much killed my old life socially and I'm left with this rather empty one instead where people back away because of all the lifestyle restrictions. The symptoms part is interesting too, I didn't have the serious ones that long relative to some on here and the side effects since have actually been as bad if not worse at times. Based on having done way too much research it appears they may well not improve that much further for me as if the gut healing \ inflammatory foods theories (lectins etc.) are correct I'm a bit stuck as AIP \ SCD with their heavy meat focus are non-starters. The fact the levels have dropped so significantly with little improvement physically is a bit weird - although I'll wholeheartedly agree that the amount of uncertainty of what exactly is causing xyz pain and all the potential related autoimmune illnesses that can randomly activate themselves is a huge source of anxiety. The future scares me now frankly. Not quite sure how you misquoted that so it looked like it came from Ennis but it's a simple statement of fact, gluten-free diet has caused as many physical issues as it's solved and the social toll is real. Sorry it doesn't fit your timeline of how the body is meant to heal or how the patient is meant to recover. Looks like celiac didn't get the memo And on that note perhaps time for mods to lock the thread, doesn't seem much more constructive discussion to add here.
  2. egs1707

    Overwhelmed and unable to accept

    No chance of denying it after I pretty much found it and the result was well beyond any doubt that's for sure. The tips from here and avoiding a few of the dubious ingredients like barley malt, oats etc. no doubt helped get the numbers down. Trouble is I've got to a point where I'm contemplating an impossible choice... stay on this miserable gluten-free diet to get "healthy" (so the theory goes anyway) but at the cost of almost total social isolation. It's took a huge toll already and my life on gluten-free is far worse than it was a year or so ago even when I was in the midst of the automimmune symptoms. take a lot more risks, probably go down the "cheating" route from time to time as well to fit in socially knowing full well the implications. No need to lecture me about the consequences, I've read the full horrifying list but at least I get some short-term enjoyment as opposed to pretty much none on the gluten-free lifestyle. Both pretty bad options, just haven't quite figured out which is worse yet.
  3. egs1707

    Overwhelmed and unable to accept

    Yup that form scared the **** out of me even though I had an experienced doctor performing it. Being in a hospital operating theatre is also an experience I don't want to revisit in a hurry. Tbh the formal diagnosis doesn't really change much, in the UK it used to be a way to get discounted food but that's all gone now so apart from confirming what you already suspect there's not much to be gained from my experience anyway. Your English is fine, had you not mentioned it's not your native language I'd never have guessed Celiac seems very poorly understood, diagnosed and supported by the wider medical profession and it seems it's down to the good folk of the Internet to help. Ignorance is worryingly widespread and I'd be in the same boat as you say above had I not continued to Google my symptoms and piece the puzzle together, in defiance of the doctors who said there was nothing wrong apart from anxiety
  4. egs1707

    Overwhelmed and unable to accept

    That tallies with something I read elsewhere the other day actually. No way I'm going through the biopsy again unless there's some serious concern driving it as I found the process very stressful. Even then there's not much I could do about it anyway as the AIP diet (last resort if healing isn't working) is pretty much incompatible with being vegetarian so in a way may be better off not knowing.
  5. egs1707

    Overwhelmed and unable to accept

    Quick question before getting onto the quotes - with antibodies reducing significantly but still enough of a positive result to be a diagnosis where does that leave the villi healing process? Would they be repairing as the levels are coming down or is the presence of antibodies mean the villi are still likely to be "flat" as there's still something there damaging them? Been there tried that, results were... interesting... 10 people in the entire country, only 5 active profiles and nearest one was over 100 miles away and didn't actually eat gluten-free. Needless to say the site didn't get any money from me. Never mind plenty of fish in the sea, it's more like a puddle now Think you have a better attitude than most I've come across in this year or so since getting diagnosed. It tends to go that people (in general not just dating) don't mind gluten-free eating, in fact a fair few people have said "oh yeah I've tried that, loads of options in restaurants now", which all promising until they go "but you're not a celiac are you?!" then the attitude shifts significantly Think that's hit the nail on the head of why I feel down on the situation. Celiac means I'm pretty much the opposite now having to run away from restaurants, meals etc. fearing insignificant (in the eyes of others) things like cross contamination which hardly comes across as traits of a strong protector. Physically it's took a toll too, feels like I've aged 10 years in 1 year at times. Yeah I phrased that badly, meant only 1 in that 100 has the OTT celiac restrictions. Funny enough when I was getting diabetic-esque symptoms the other week I had a read around their forums and there was a bit about celiac on there. People were saying they'd prefer diabetes to celiac as at least there's a bit of leeway with sugar management. Tbh both scare the hell out of me long-term but was an interesting perspective. Yup good call, found those a while back which have been useful. Sounds good in theory but given the attitudes I've had off people so far they wouldn't go anywhere near a celiac-hosted gluten-free food evening lol. Tends more to be I have to go to where the event \ people are as they won't go out their way otherwise. In a way I kind of do get it, if the boot was on the other foot chances are I wouldn't be any better at being supportive. It feels that way, regardless of what I do it's the attitude of others that makes or breaks things socially, which has what has really been noticeable since the diagnosis. Can't see celiac ever really being accepted unless some miracle happens on the research side and cross-contamination worries can be removed from the equation. Thanks, I'm gonna need it
  6. egs1707

    Overwhelmed and unable to accept

    I've had the results of the 6-month levels check now (under a new doctor fortunately who is actually being proactive rather than denying me the tests I need)... gone down from off-the-charts to "weak positive". So, as expected after a short timescale not healed but tTg going in the right direction. Other tests for the common autoimmune conditions come back normal as well which is a relief. However on the flip side socially this lifestyle is every bit as bad as I feared back on page 1. People are horrified by the condition when you're forced to explain what "even a little bit" of gluten does and they back away after that. Despite what I've read on other posts from my experiences people don't like having one member of the group not eating and do make comments about it. Eventually they just decide not to invite the person who can't \ won't eat. Dating is also finished now too, the mix of not being able to eat out and having to reveal the condition elicits a response of thinly masked horror \ disgust from the date and at that point it's all over. Had it happen enough times now and there's no good way to dress up celiac and sadly people don't want to get involved with it when there's 99 other people out of the 100 who are fit and well. Having to accept that fate is as painful as the physical symptoms were 9-12 months ago. So while physically there may be some improvement my world is so much smaller and life so much less enjoyable. In effect celiac is the perfect bully... there's the names and labels ("disease" particularly hurts), the constant fear of being caught out with no margin for error, the physical pain inflicted by a gluten reaction, social isolation and finally if I don't do what it says it will eventually kill me.
  7. egs1707

    Celiac Belly Or Just Fat?

    One of the things that I noticed en-route to getting diagnosed was that I had to loosen my belt whilst driving or even changing to looser trousers due to the discomfort. Has almost (not 100%) gone back to "normal" since going gluten-free.
  8. It's funny you mention this as I've been feeling really bad the past few days and couldn't figure out why but vaguely remembered reading a post on here about Xanthan Gum. Sure enough it's in the bread I've been having and one or two other items. The alternative used seems to be E464 Hydroxypropylmethylcellulose, which I hope has less side effects
  9. egs1707

    Overwhelmed and unable to accept

    You're right on the extremes, I'm sitting in a gluten-free food festival right now and still unsure if to eat anything which I guess means I've hit the extreme end of the scale. Seem to be noticing the recovery pattern over the course of 6 weeks or so after a gluten hit. Will be very interesting to see what the blood test readings come out like when I eventually get them done again. And thanks for the good wishes
  10. egs1707

    Overwhelmed and unable to accept

    Reality check in the past few weeks, looks like I got glutened at what should be a "safe" restaurant for gluten-free and gone right back to the beginning again recovery-wise Now too scared to eat anywhere and turning down social opportunities because of the food issues, what a miserable way to live this is.
  11. egs1707

    Vegetarian Roll Call!

    Vegetarian here too, celiac really makes it tough as all the Quorn meat replacement products bar the odd one or two are out Then there's all the scare sites saying only paleo type diets will repair your insides but guess what they're all heavily meat / fish based. @Ennis_TX has some good ideas for meals
  12. egs1707

    Overwhelmed and unable to accept

    What kind of meals are in that regime? Wondering what else I could have for lunch but most of these protein / fat diets are all animal product based.
  13. egs1707

    Overwhelmed and unable to accept

    Random question for you all, did your appetite change over time after going gluten-free? At the moment I feel like I can eat and eat and eat. Not putting on any weight as such but holding steady at least. May also be because my activity level has gone up a *lot* recently (beginning to catch up on me now actually, feeling a bit tired at the moment) but has anyone experienced something similar? Btw @Ennis_TX did I just see on another thread you make your own garlic bread? Be very interested to hear how you do that
  14. egs1707

    Overwhelmed and unable to accept

    Also already using my experience of having done the gluten-free diagnosis route the hard way to help some others I've been speaking to elsewhere. May already have saved a few people by recommending them to vitamin tests, how to get through gluten challenge and so on. Giving something back after getting the help here, that's what it's all about right
  15. egs1707

    Overwhelmed and unable to accept

    So it's been a while since the last post, nearly 2 months in fact (time flies!) The vitamin D pills I mentioned on the previous page have been a revelation Started noticing them kicking in about 2-3 weeks after taking the first one, regained muscle strength and that inflammation feeling has reduced too. Internet research beats the GP once again (who refused me the vitamin panel tests until overruled when I made a complaint). Also had TSH done around the same time, came back normal so they say the labs won't run the other tests if that's within range. Had a sinus infection around that time which took the best part of 2-3 months to go, again noticed a positive change once that cleared up in terms of head pressure etc. Seen a second dietitian who gave a few tips about food combinations for nutrient absorption but otherwise was happy with current progress and to check back in 6 months. Similar feedback from the gastro specialist - will have a repeat tTG soon to see how the levels are looking as he expects them to have dropped a bit by now. If I had to put a number on it I'd say I'm back to about 70% of where I was before all this started. On some days a bit more like 75% but it varies. There may well be some additional food intolerances but I can't be doing with those right now so I'll carry on as I am unless something really obvious begins to stand out. I've had a few projects on recently that have helped occupy the mind away from the celiac scare stories which has been helpful. Did have a bit of a relapse the other day when that (slightly dubious research) link to diabetes came about as I've always feared that particular illness. All in all celiac still sucks, I still hate it but making some progress in trying to get my life back...
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