Posted 05 March 2005 - 06:04 AM
- As I am about to start cramming with gluten which I know, will damage me and make me ill, how long is it to be expected that I be kept waiting for the endoscopies and biopsies which I am going to demand - does it usually take days, weeks or months to organise and go down the waiting list?
- I have been advised by another doctor not to do this but I can think there is no other way to end this constructive exclusion. Considerable documents have circulated that I invented illnessses.
- How little gluten can I use and for how long during this period?
- I received a letter informing me I was being expelled from my nearest "celiac disease support group" for this blunder of the doctor but I spoke firmly to the telephonist who reinstated my membership (membership susbcription, strangely, is not charged). Unfortunately they have announced a sort of ban on any members discussing the kind of questions I am obliged to resort to this kind of bulletin board to raise.
Thanks for being there,
Desperate for your answers
Posted 05 March 2005 - 07:38 AM
It seems like your current doctor isn't much help.
He didn't order biopsies/endoscopies. He refuses to call it celiac disease.
I can't tell you what to do but if I were in your situation, I would find another doctor or keep bugging my current doctor until he listens. From my experience (I live in Canada) it takes awhile to get in to a GI specialist and then once you're in it sometimes takes even longer to get an endoscopy. For me it was 2 months to wait for an endocopy and biopsy and I had to really push to get in that soon! (They wanted me to wait another month!).
If you're really keen on glutenizing yourself maybe ask a nutritionist/doctor for advice on how to go about it.
Diagnosed with Celiac Disease in March 2004
Postitive tTg Blood Test, December 2003
Positive Biopsy, March 3, 2004
Posted 05 March 2005 - 08:51 AM
Hope this helps!
Posted 05 March 2005 - 11:09 AM
I had to switch doctors a few times to get someone to listen. Sounds to me like you need a new doctor. Does your doctor really know about celiac?
If you know you feel better on the gluten-free diet then do you really need an "official diagnisis"?
Good luck with everything and hang in there
Gluten-free since January 2004
Jeremiah 29:11- "For I know the plans that I have for you, declares the Lord, plans for you to prosper and not harm you,plans to give you a hope and future"
"One Nation, Under God"
Feel free to email me anytime....firstname.lastname@example.org
Posted 05 March 2005 - 11:50 AM
Is your GP now prepared to send you for blood tests and an endoscopy/biopsy, or do you know of a GP that will do this for you? It's just that it would be really rough to get yourself all 'glutened up', only to find no GP will refer you. (I suppose the alternative is to go 'private'?)
I'm still waiting for my GE consultant appointment and expect to wait awhile after I've seen him/her before the biopsy will happen. (Been told by friend who works at the GE clinic it could take as long as 17 weeks to see consultant, but GP has promised to chase it for me if I don't hear within the next few weeks.)
So I guess my answer is : it looks as though it may take a very long time - definately NOT days, definately a lot of weeks, and possibly months.
Sorry not to have more positive news!
And keep as well as you can in the situation that faces you:)
Posted 05 March 2005 - 02:37 PM
Either I don't get any reports at all and sick leave targets at work will get too inflexible, or I make myself too bad like some of you were warning against.
The only way in seems to be straight in.
The question is like a plane on the runway, how long to taxi around and when to blast off and - perhaps - soar through the clouds.
Unlike some of you I think I'm one of the ones that will take years to get steadily better.
Starting from scratch with another GP will probably be like going back behind the start line altogether. PALS have advised against it and I know they are right.
As for the gluten ingestion phase it will have to be very short and very intense because otherwise I'll be too ill for too long and obviously no-one will back me up for being ill.
With all your dazzling insight into how this damage thing works, does the damage come on quicker the more gluten one eats or will there be a delay in it showing up?
This has got to be a sick society with all these people posting here about damaging themselves. I have noticed others doing it! I was warned by another doctor not to do this but then I'll not have any reports at all.
Doctors don't use their insight into the human body, perhaps they don't have any, it's only ever about lawyering, trade marks, and initiation into schemes.
Perhaps this gut damage thing is overrated. Especially, the intestinal aspect is a mere sideshow. The main action of this disease is an autoimmune attack according to other websites and it's going to take the rest of my life to slow that down like the proverbial supertanker.
Very badly confused indeed and kept that way for too long by those I rightly looked to - and was proved wrong to do so.
Is this the right face for it?
Posted 05 March 2005 - 07:47 PM
Posted 06 March 2005 - 11:16 AM
Very best of wishes.
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