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Any Advice On Starting gluten-free Please?


Deb O (UK)

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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


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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

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      Thanks for responding. I researched further and Lindt Lindor chocolate balls do contain barely malt powder which contains gluten. I was surprised at all of the conflicting information I found when I checked online.
    • trents
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      No,Lindt is not gluten free no matter what they say on their website. I found out the hard way when I was newly diagnosed in 2000. At that time the Lindt truffles were just becoming popular and were only sold in small specialty shops at the mall. You couldn't buy them in any stores like today and I was obsessed with them 😁. Took me a while to get around to checking them and was heartbroken when I saw they were absolutely not gluten free 😔. Felt the same when I realized Twizzlers weren't either. Took me a while to get my diet on order after being diagnosed. I was diagnosed with small bowel non Hodgkins lymphoma at the same time. So it was a very stressful time to say the least. Hope this helps 😁.
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    • Jmartes71
      I have been diagnosed with celiac in 1994, in remission not eating wheat and other foods not to consume  my household eats wheat.I have diagnosed sibo, hernia ibs, high blood pressure, menopause, chronic fatigue just to name a few oh yes and Barrett's esophagus which i forgot, I currently have bumps in back of my throat, one Dr stated we all have bumps in the back of our throat.Im in pain.Standford specialist really dismissed me and now im really in limbo and trying to get properly cared for.I found a new gi and new pcp but its still a mess and medical is making it look like im a disability chaser when Im actively not well I look and feel horrible and its adding anxiety and depression more so.Im angery my condition is affecting me and its being down played 
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