Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Any Advice On Starting gluten-free Please?


Deb O (UK)

Recommended Posts

Sara-UK Rookie

Managed to get access to most of the ones I wanted - I'll look at his ref list.

You've scared me now! I can sound vaguely intelligent when I know what I'm talking about, but otherwise I generally come across totally blonde and too chatty!

Maybe I'll wait and see what the lady at the testing place says first!

Sara


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



gfp Enthusiast
Managed to get access to most of the ones I wanted - I'll look at his ref list.

You've scared me now! I can sound vaguely intelligent when I know what I'm talking about, but otherwise I generally come across totally blonde and too chatty!

Maybe I'll wait and see what the lady at the testing place says first!

Sara

Sorry, didn't mean to scare you ... it's just I know a few people have emailed him and got no response or a terse one. Then again they were not geographically close or in a field he would find interesting.

That being said it's not uncommon. I can think of quite a few of my old prof's who would be exactly the same if a member of the general public wrote to them.

I can sound vaguely intelligent when I know what I'm talking about, but otherwise I generally come across totally blonde and too chatty!
You wrote up your thesis :D

I was just really trying to say don't come across as chatty but perhaps pique his interest with something you do know about.. this is just a guess, I don't know the guy, Ive just read a lot of his papers but from what other's have said he is the sort who's first response would be "did you read the paper?"

Either way, read up on the refs and some of the general papers. He has some Lancet articles which are anti-biopsy as a effective screeing and accuracy of serology suites etc. you should read these IMHO before seeing the lady at the testing place on the grounds you are probably as well qualified if not more so than her.

Another site has an excellent collection of papers all categorised but unfortunately its down right now and has been for a couple of weeks. I wish I'd copied all the refs before this happened!

celiac disease is one of those things you are going to have to do the work. Short of getting an appt with Hallamshire finding a good Dr. in the UK willing to support current research is hard.

I once had an online argument with TV Dr. Hilary Jones.

One specific area I adressed was neuropathy and depression. He dismissed both saying there was no evidence.

I posted the evidence (quite a few papers of the type you have printed) and he just refused to respond and locked the thread.

I don't know what the official answer is for GP's.. but I suspect it is one of those subjects they are expected to tow a line with; like the triple vaccine. Basically we don't care what your opinion is this is what we have been told to follow.

If you find the Lancet articles you can also see the letters to the editor from the moths afterwards (This is largely why I believe Hadjivassiliou is non-communiciative. Many of the letters are reminicent of the letters paid for by glaxo-welcome over the articles by Marshal and Warren on h. pylori..

They range from personal attacks on his qualifications to social life.... many simply criticise his research saying everything buty a biospsy is less than useless and NON of them provide any scientific arguament against it.

He is in direct opposition with CUK over practically everything CUK stand for from the 200ppm limit to biopsy testing to CUK's firm bview that celiac disease is limited to the gut and has no other manifestations.

Given your qualifications I am sure you can read the papers and come to your own conclusions. Indeed many intellegent but unqualified in terms of academic qualifications have doen the same.

The problem is unless you see a good MD you are likely to come up against the official position. Unfortunately Dr's don't hear much about celiac disease anyway and when they do its the deliberate misleading by CUK. It doesn't mean they won't change view but you need to go in fully armed with the papers and if needs be contradict the GP on grounds you are better qualified than they are.

Other than this happy reading :D

Archived

This topic is now archived and is closed to further replies.

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,221
    • Most Online (within 30 mins)
      7,748

    Hissyfit33
    Newest Member
    Hissyfit33
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • Jmartes71
      Thankyou because I met up with K B with well known bay area hospital once and she said she knows I don't like to take meds, I said thats incorrect, I have issues.Thats the one that said I was deemed " unruly " when she admitted I was celiac when I asked why am I going through this.
    • cristiana
    • trents
      Cristiana, that sounds like a great approach and I will be looking forward to the results. I am in the same boat as you. I don't experience overt symptoms with minor, cross contamination level exposures so I sometimes will indulge in those "processed on equipment that also processes wheat . . ." or items that don't specifically claim to be gluten free but do not list gluten containing grains in their ingredient list. But I always wonder if I am still experiencing sub acute inflammatory reactions. I haven't had any celiac antibody blood work done since my diagnosis almost 25 years ago so I don't really have any data to go by.   
    • cristiana
      I've been reflecting on this further. The lowest TTG I've ever managed was 4.5 (normal lab reading under 10).  Since then it has gone up to 10.   I am not happy with that.  I can only explain this by the fact that I am eating out more these days and that's where I'm being 'glutened', but such small amounts that I only occasionally react. I know some of it is also to do with eating products labelled 'may contain gluten' by mistake - which in the UK means it probably does! It stands to reason that as I am a coeliac any trace of gluten will cause a response in the gut.  My villi are healed and look healthy, but those lymphocytes are present because of the occasional trace amounts of gluten sneaking into my diet.   I am going to try not to eat out now until my next blood test in the autumn and read labels properly to avoid the may contain gluten products, and will then report back to see if it has helped!
    • lizzie42
      Hi, I posted before about my son's legs shaking after gluten. I did end up starting him on vit b and happily he actually started sleeping better and longer.  Back to my 4 year old. She had gone back to meltdowns, early wakes, and exhaustion. We tested everything again and her ferritin was lowish again (16) and vit d was low. After a couple weeks on supplements she is cheerful, sleeping better and looks better. The red rimmed eyes and dark circles are much better.   AND her Ttg was a 3!!!!!! So, we are crushing the gluten-free diet which is great. But WHY are her iron and vit d low if she's not getting any gluten????  She's on 30mg of iron per day and also a multivitamin and vit d supplement (per her dr). That helped her feel better quickly. But will she need supplements her whole life?? Or is there some other reason she's not absorbing iron? We eat very healthy with minimal processed food. Beef maybe 1x per week but plenty of other protein including eggs daily.  She also says her tummy hurts every single morning. That was before the iron (do not likely a side effect). Is that common with celiac? 
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.