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Emergency

Guest BellyTimber

By Guest BellyTimber
in Post Diagnosis, Recovery & Treatment of Celiac Disease

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Guest BellyTimber
Guest BellyTimber
Posted

Hi, I joined the other day & a few of you have already responded to some of my posts and I have found reading your posts very heart warming. I have been fairly gluten-free for two and a quarter years. Before I went gluten-free the doctor said I should go gluten-free. He didn't order biopsies/endoscopies. He refuses to call it celiac disease. I have experienced extreme bad nerves all my life, extreme emaciation till I was over 25, extreme stomach aches, head aches, ear problems, etc. All rather improved for the last two years. I am about to be sacked from my job for a moderate amount of absence whereas 17 years ago I was off work for almost a year and they kept me on. I live outside the U.S. therefore all the laws and regulations will be different but the bodies are the same. What my query is is this:

- 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

Michael.

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Carriefaith Enthusiast
Carriefaith
Posted

Maybe you should start looking for another doctor... maybe someone that will test you.

He didn't order biopsies/endoscopies. He refuses to call it celiac disease.

It seems like your current doctor isn't much help.

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.

Guest Viola
Guest Viola
Posted

I had a problem with my doctor not listening as well. I came home very frustrated one day and sat at the computer and wrote a letter to him, letting him know that I felt I wasn't being heard. Then I listed everything I wanted to tell him in the letter. And this is the important part :o I MAILED it to him. So ... he actually had to sit down and read it. That was a couple of years ago. Since then I have a very attentive doctor every time I go in! Oh ... and yes, the problem I had at the time was soon diagnosed and is being treated :P

Hope this helps!

KaitiUSA Enthusiast
KaitiUSA
Posted

They usually say 3 months being on gluten to get positive results but everyone is different and some people go in a shorter amount of time and you must eat a lot of gluten during the time.

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 :D

Ruth UK Newbie
Ruth UK
Posted

HI, Michael,

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:)

Guest BellyTimber
Guest BellyTimber
Posted

Friends,

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.

Michael

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?

:ph34r:

VegasCeliacBuckeye Collaborator
VegasCeliacBuckeye
Posted

Where do you live????????????????????????????????

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Guest BellyTimber
Guest BellyTimber
Posted

Different continent

Same problems

M.

Guest BellyTimber
Guest BellyTimber
Posted

A heartfelt thank you to all of you for helping me through this stage.

Very best of wishes.

Michael

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