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
      131,742
    • Most Online (within 30 mins)
      7,748

    MistyMoon
    Newest Member
    MistyMoon
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):




  • Who's Online (See full list)

    • There are no registered users currently online

  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Theresa2407
      Maybe you have a low  intolerance to Wheat.   Rye, Barley and Malt are the gluten in Celiac disease.  It has always been stated Wheat and Gluten, not just a Wheat intolerance.  Barley will keep me in bed for (2) weeks.  Gut, Migrains, Brain fog, Diahrea.  It is miserable.  And when I was a toddler the doctor would give me a malt medicine because I always had Anemia and did not grow.  Boy was he off.  But at that time the US didn't know anyone about Celiac.  This was the 1940s and 50s.  I had my first episode at 9 months and did not get a diagnosis until I was 50.  My immune system was so shot before being diagnoised, so now I live with the consequences of it. I was so upset when Manufacturers didn't want to label their products so they added barley to the product.  It was mostly the cereal industry.  3 of my favorite cereals were excluded because of this. Malt gives me a bad Gut reaction.
    • Gigi2025
      Thanks much Scott.  Well said, and heeded.   I don't have Celiac, which is fortunate.
    • Scott Adams
      Do you have the results of your endoscopy? Did you do a celiac disease blood panel before that?  Here is more info about how to do a gluten challenge for a celiac disease blood panel, or for an endoscopy: and this recent study recommends 4-6 slices of wheat bread per day:    
    • Scott Adams
      It is odd that your Tissue Transglutaminase (TTG) IgA level has bounced from the "inconclusive" range (7.9, 9.8) down to a negative level (5.3), only to climb back up near the positive threshold. This inconsistency, coupled with your ongoing symptoms of malabsorption and specific nutrient deficiencies, is a strong clinical indicator that warrants a more thorough investigation than a simple "satisfactory" sign-off. A negative blood test does not definitively rule out celiac disease, especially with such variable numbers and a classic symptomatic picture. You are absolutely right to seek a second opinion and push for a referral to a gastroenterologist. A biopsy remains the gold standard for a reason, and advocating for one is the most direct path to getting the answers you need to finally address the root cause of your suffering. Here is more info about how to do a gluten challenge for a celiac disease blood panel, or for an endoscopy: and this recent study recommends 4-6 slices of wheat bread per day:    
    • Scott Adams
      There is a distinction between gluten itself and the other chemicals and processing methods involved in modern food production. Your experience in Italy and Greece, contrasted with your reactions in the U.S., provides powerful anecdotal evidence that the problem, for some people, may not be the wheat, but the additives like potassium bromate and the industrial processing it undergoes here. The point about bromines displacing iodine and disrupting thyroid function is a significant one, explaining a potential biological mechanism for why such additives could cause systemic health issues that mimic gluten sensitivity. It's both alarming and insightful to consider that the very "watchdog" agencies meant to protect us are allowing practices banned in many other developed countries. Seeking out European flour and your caution about the high-carb, potentially diabeticgenic nature of many gluten-free products are excellent practical takeaways from your research, but I just want to mention--if you have celiac disease you need to avoid all wheat, including all wheat and gluten in Europe.
×
×
  • 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.