Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - trents replied to MagsM's topic in Related Issues & Disorders
      26

      Inflammation and Menier’s disease link?

    2. - nataliallano replied to MagsM's topic in Related Issues & Disorders
      26

      Inflammation and Menier’s disease link?

    3. - Zuma888 replied to Zuma888's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Hypothetical question about antibodies

    4. - Scott Adams replied to Zuma888's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Hypothetical question about antibodies

    5. - Betsy Crum replied to Betsy Crum's topic in Related Issues & Disorders
      4

      Chest pain from celiac


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      130,235
    • Most Online (within 30 mins)
      7,748

    judycs
    Newest Member
    judycs
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):




  • Who's Online (See full list)


  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      How long have you been strictly gluten free? Certainly, it would be good to look into vitamin and mineral deficiencies and supplementation. The B vitamins, magnesium and D3 are all very important to neurological health. Unfortunately, it can be difficult to reverse gluten-induced neurological damage damage if it has gone on for a long time. 
    • nataliallano
      Thanks Trents I'm strict with my gluten-free diet now. I just don't feel any better. I'm going to get tested for vitamins and minerals to see if I need some supplements. For sure I got some damage that doctors call Menier's and the only way they treat it is with medicine that does damage my body more than it helps.   
    • Zuma888
      Thank you Scott for your helpful response! Based on this, would you say someone who is on a gluten-free diet - but not strict about cross-contamination and occasional cheating - and tests negative for tTg-IgA while having normal total IgA is not likely to have celiac, even if they have been 'gluten-free' for years?
    • Scott Adams
      That’s a really insightful observation about antibody testing and the gluten challenge! You’re absolutely right that antibody levels can remain elevated for months or even years after going gluten-free, especially if there’s ongoing cross-contamination or occasional slip-ups. The immune system doesn’t reset overnight—it can take time for antibodies like tTG-IgA to normalize, which is why many doctors recommend waiting at least 6–12 months of strict gluten-free eating before retesting. For someone who’s been gluten-free for less than two years or hasn’t been meticulous about avoiding cross-contact, there’s absolutely a chance they’d still test positive, since even small amounts of gluten can keep antibodies elevated. This is partly why the gluten challenge (where you eat gluten before testing) exists—it’s designed to provoke a measurable immune response in people who’ve been gluten-free long enough for antibodies to drop. But you raise a great point: the challenge isn’t perfect, and false negatives can happen if the timing or amount of gluten isn’t sufficient to trigger a strong antibody response. This is why diagnosis often combines antibody tests with other tools like genetic testing or endoscopy. Your question highlights just how nuanced celiac testing can be! For people with celiac disease hidden gluten in their diets is the main cause of elevated Tissue Transglutaminase IgA Antibodies (tTG-IgA), but there are other conditions, including cow's milk/casein intolerance, that can also cause this, and here is an article about the other possible causes:      
    • Betsy Crum
      Thank you for your response! I have considered starting a food diary in the past, I suppose this is as good a time as any to start.  
×
×
  • Create New...