Jump to content
Celiac Disease FAQ | This site uses cookies GDPR notice. Read more... ×
  • Sign Up


Advanced Members
  • Content Count

  • Joined

  • Last visited

  • Days Won


SueMD last won the day on August 30 2016

SueMD had the most liked content!

Community Reputation

8 Neutral

About SueMD

  • Rank

Recent Profile Visitors

The recent visitors block is disabled and is not being shown to other users.

  1. blimey I've set the cat amongst the pigeons here Interesting debate tho - from another angle - I live in an area (of the UK) where the dairy cows regularly get in the way of the school bus, and are known by name by the farmer (and the local kids), and I feel no conflict in drinking milk if it comes from sources like this. Having said that we also ended up looking around a mechanised dairy farm recently where the cows have no access to outside space and it practically turned me vegan overnight... On a more mundane level, I seem to be getting on fine with either avoiding dairy or using Lactofree stuff, or popping lactase pills if I'm out and about and have little choice. A definite, huge improvement over the last year, which is a massive relief. I'm finding it hard to understand why the docs and dieticians don't warn people about the lactose issue when they are diagnosed... Thankfully there's places like this forum to keep us informed. Sue
  2. hi all - just wanted to share in case it's helpful for any one else newly diagnosed. It's been nearly a year since diagnosis and I have to confess it's been miserable. Very very slight improvement in gut symptoms but nothing as close as I expected/hoped for. Most days I was in discomfort and had diarrhoea. Although I knew lactose was an issue with newly diagnosed I assumed that my using lactofree milk was enough (and thought that yogurt, butter and hard cheeses were safe). In desperation a couple of weeks ago I went completely dairy free and the transformation has been astonishing. I am nearly (only nearly!) normal. I had assumed I was getting gluten cross-contamination all the time, but now it looks like the problem was lactose. So thought it's a pain having to avoid gluten and dairy, I can at least hope that the lactose issue will be relatively short term. So the moral of this story is if you're not improving as fast as you'd hoped it may well be worth looking more closely at the lactose. Hope this is of help to someone Sue
  3. thanks both of you - good advice. I don't really feel it's urgent so will wait and ask at the post-diagnosis appt and if I'm still worried will get an appt with the GP. Thank for helping me clarify things in my own mind
  4. hi all, I've had a recent diagnosis of coeliac. I'd been pretty careful since the biopsy but super careful since the result (including throwing out old foods, kitchen equipment, etc). I eat nothing that I've not made myself (am lucky to work from home), and it's all whole foods, nothing pre-prepared at all. In terms of my guts the results have been amazing - I'm tempted not to even write it down as fear I will be tempting fate - it's such a huge difference (within 2 weeks). However a recent-ish symptom (over the last few months) of numb/burning/tingling fingers and toes actually seems to be getting slightly worse. Would I be right in thinking that these sort of neuropathic symptoms are dependent on a healed gut to recover? And I assume that even if my diarrhoea isn't happening, it will take longer for the gut to be healed? I'm feeling slightly freaked about the fingers/thumbs as my mother had a (never-diagnosed) neurological condition which started this way 40 years ago, and ended up with her completely immobile. She died 25 years ago, aged 57, and was always a total mystery to the doctors. I have absolutely no idea if she was tested for celiac disease and whether the link to neurological symptoms had been made at that time - but it is rather on my mind recently. Tho maybe it wouldn't be possible for celiac disease to make someone so ill? I do know I need to let this one go Any thoughts on how long (and also how) neuropathic symptoms get better? I assume it will depend on how bad the damage? I'm still waiting for my post-diagnosis follow up appt so should know more about the level of damage then I assume. thanks in advance Sue
  5. Just a quick one to say I got a diagnosis of celiac disease today. I know in the past it's been helpful for me to know the outcome for other folk, so thought I would update. The moral of this story is even with a VERY borderline blood test it's worth persisting. thanks for all the help Sue
  6. I've finally had time to read that link properly - very clear and does make much more sense. Tho i understand my body attacking my thyroid, I don't think I quite "got" how gluten starts the same process off in celiac disease. thanks all Another question for you experienced folks out there (cycling lady? Kareng? cristiana? ) Bear with me... I've finally got a doc's appt with the best GP in our local practice (she's very keen to listen to her patients - pretty unusual stuff). I've had 2 previous celiac disease tests (which I'm 99% sure are for some form of AGA test - if i'm understanding the FAQs on this site correctly - as I think that's the default test on the NHS here in the UK). The first was over a year ago when I was certainly consuming gluten, tho probably not a huge amount, and it came out borderline at around 8 (tho i'm aware if you don't know the terms of ref this doesn't mean much). The second was 6 months ago when I was very very low gluten (until i understood recently about how sensitive, I would have said pretty much gluten free), that one came out as definitely negative for CD with a 5. My question is this - if the 2 results differ by a relatively large amount (ie I'm producing noticeably more antibodies when consuming gluten) is that in itself a sign of having celiac disease - or does it not work that way? I'm trying to arm myself with as much convincing info as possible to get her to agree to test/biopsy - so I know for sure one way or another. I'll go private and pay for it it necessary but would (obviously!) rather not. Thanks in advance you are a wonderful source of knowledge Sue X
  7. interesting about the Hashis calming down cycling lady - mine's been temperamental and acting weird (also menopausal) - could be another benefit to sorting out the celiac disease (if it is) mayfly - i've really not got a handle on how cautious i need to be yet (haven't yet got separate toaster etc), but am tempted to go the same route as cycling lady - i do all the cooking after all, they might not even notice sounds like good advice re just the blood tests for starters for your kids X
  8. Thanks both of you Cristiana - that's really helpful thank you cycling lady - yes, i'm aware it's not an allergy (sorry if my post implied i thought it was), i'm just not very clear in my own head yet what it all means so was looking for a bit more info. I am also aware of what autoimmune disease are as I have Hashimotos, and also lost a close family member to MS, so you have my sympathies. Sue I should probably add the only reason i was being so blasé about it up until 2 weeks ago was that I had no idea there was any chance of it being celiac (previous doctor read my celiac disease test results as clear, current doc says they are borderline positive).
  9. hi there - can someone explain how just a tiny bit of gluten (say a crumb) can wreak so much havoc? I'm not doubting it, I just can't quite get my head around what it does. The relevant information may be way over my (non-medical) head, but I'd like to try to understand. I've been off gluten (ish) for about a year, and had no idea that tiny bits could be causing such problems. So til a fortnight ago I would grab a piece of my daughter's pasta when serving it, or take a bite of a friend's cake if out and about - that sort of thing. I've not had a celiac diagnosis (am rather struggling with the going back on it for the test, but know I will need to) but have, over the last 2 weeks, been very very strict and it does seem to be helping - horrible acne much reduced, generally feeling slightly less ill, tho the stomach/bowels are still a law unto themselves sadly... How does such tiny bits affect our bodies (assuming it is celiac), and why don't we practically explode in that case when eating "normal (i.e. huge, for me) amounts? thanks in advance Sue
  10. thanks both of you - it is really helpful and is motivating me to try to get this properly sorted. i'm afraid I don't know which test was done - all I know (from reading over doc's shoulder) that it was "8" when she considered it to be borderline positive (and when i was definitely reducing my gluten intake). When another was done (later in the year when i was pretty much gluten free - or gluten free as I then defined it *rolls eyes*) it was "5" which was considered negative for celiacs, unsurprisingly I guess if minimal gluten intake. But I guess if i don't know which test it was this isn't very helpful. I am a bit freaked to read about recurrent miscarriages (many, many of them), luckily we now have our daughter so much less raw than it easily could have been So the answer is, get myself to the doctors and start asking questions - THANK YOU
  11. thanks SLL - much appreciated. Is the protocol the same in the UK I wonder? Seems to be that they don't do endoscope unless there is a definite positive blood test (which mine wasn't), but I could be wrong. I need to be more assertive about all this I think. I've been off the gluten in a half-hearted way for over a year (assuming IBS) so am rather daunted by the idea of going back on it. But needs must I know. thanks again Sue
  12. Hi there, I'm 53, with a long long history of "upset stomach" problems (basically diarrhea every morning, often 3 or 4 times, every day for probably 6 years, but in a lesser version about 20 years. It got a lot worse about a year or so ago and after basic scans for anything really scary (which were thankfully negative) I decided it must be "just" IBS. So took myself off onto the low-fodmap diet which had astonishingly quick results (like within a couple of days I had my first "normal" stool in probably 30 years - I didn't actually know they could be like that ). Fast forward a year and I'm failing dismally to come off the exclusion bit of the low-fodmap diet (anytime I try it all starts up again), and after a very VERY near accident when away with my 6 year old (I'm a very late starter ) at Disneyland as just had to eat normal food decided had to do something about it. I'm also exhausted the whole time and have developed acne which I've never had in my life. So really do feel like my diet is not healthy So went back to the docs who said that my last tests for celiac (which I didn't know they'd done) were "borderline positive". I have Hashimotos (for 25 years) and am aware both are autoimmune conditions so wondered. I also suspect when they did the celiac test I was already on a pretty low gluten diet. So (thank you, if you are still with me ) am now trying to eat as tho i'm celiac (i was being absolutely rubbish i now realise, having looking at this site, and have been daily consuming the stuff) - and I am starting to feel better. But doc says I need to go back on full gluten for 6 weeks to test properly. I suspect having the personality I do that I probably need to know for sure otherwise I will be constantly tempted to cheat. SO a few questions 1) should i test? 2) do you think it sounds like celiac (at the moment I almost want it to be just to have an answer, so wonder if I'm just convincing myself). 3) do celiac symptoms get worse the longer you are undiagnosed? Thanks for any answers. Sue