Having read many opinions on many sites..
Question.."Why do you have to eat gluten 6 to 8 weeks prior to endoscopy/biopsies if it takes 6 months to several years for the gut to heal. I went totally free 8 weeks prior and still had a positive result."
Seems very sadistic and unneccessary.
I'm with you on that. It made me really really ill having to eat gluten for that test. I was told to eat gluten for 6 weeks before my test. BUt then when I went for it I couldn't tolerate the endoscopy procedure - ie - I couldn't even handle having the tube in my mouth so I had to book another endoscopy 3 months later. The second time around I only had to eat gluten for 3 days. When I went for the test I couldn't tolerate the procedure again so my consultant wrote to my GP advising that I should be classed as coeliac based on my high blood tests....
So yes All very sadistic and unneccessary! The only remotely positive thing I can gain from any of it is that I am that scared of being ill that I would never ever be tempted to cheat, that I am ridiculously careful and that I only eat out after asking a thousand questions of the staff. The downside is that I was so ill that I couldn't work for a year, it left me a stone under weight, I was malnourished, my body didn't work properly for over a year and I suffered severe fatigue. Great stuff!
The question is - is there any way that the doctors can change this for the future?
I agree. I had my blood test in November last year and have my endoscopy next week. I was told by my doctor that I have to eat the equivalent of three slices of bread in gluten a day. I wasn't even eating that much before I had suspected CD. Even though I'm only a week away now I am so ill that I just want to go gluten free anyway but then I run the risk of not having an accurate biopsy result. I was told that because the damage to the intestine is often uneven, you have to continue eating gluten so that it is more likely that your results will be accurate as often only one or two samples are taken during a biopsy.
Also, the part of the intestine that the biopsy is taken from is often the least sensitive part in Coeliacs. Unfortunately, this means you have to deliberately make yourself really ill just so you can be a 'confirmed' Coeliac.
If that's true, that 'often only one or two samples are taken during a biopsy' then it seems to me the medics are intentionally making those of us who are gluten sensitive/intolerant get really sick just to ensure that there is enough reactive tissue to make their procedure worthwhile! That is surely counter-intuitive on SO MANY levels??? Since when does the good practise of medicine require the patient to intentionally poison him/herself in order that one particular medical procedure MAY possible confirm an almost certain diagnosis? That's just totally nuts!
Have a look at the Endoscopy explanation in blogs and see what you think. The proceedure if it is worrying you is best done under full sedation, tell your consultant. Once the proceedure starts nothing more is known until you wake up.
I do believe the norm is 4 biopsy samples from different locations.
hi i was diagnoised 18 months ago and before i was was told not to go gf till after i was diagnosed i was 66 when i was
It depends how important the "official" diagnosis is - I was at complete loggerheads with my specialist on this topic.
I suffer from "Collagenous colitis" - during my first attack I didn't have a clue what it was despite leaving me housebound for nigh on 12 weeks and a 3 stone weight loss. .
I didn't stop eating providing I was close to home, and started to notice that as well as the colitis (unpleasant, potentially embarrassing but seldom painful) - when I ate certain foods, breads, pastas etc I was also getting severe pain.
Needless to say, I started excluding these from my diet and quickly learnt what other food products upset me (no surprise they all contained wheat / gluten)
By the time my so called "emergency appointment" came through I was completely gluten free - realising it had been staring me in the face for a long time - along with my tummy finally settling down - the severe eczema I'd suffered since a baby pretty much disappeared. If my dermatologist hadn't refused point blank to associate diet and eczema, this may have been picked up many years before it was,
I had an endoscopy and sigmoidoscopy neither showed anything significant so I was discharged.
2 years later, I had a second CC attack during which time I also developed acute pancreatitis - - I was referred back to my original specialist, the colonoscopy showed blunted villae and collagenous colitis.
Despite this - my specialists point blank refused to diagnose coeliac because I refused to return to eating a gluten diet for at least 8 weeks - even though, as well as the test results, I have severe folic acid and B12 deficiencies and need regular cytamen injections.
I've since had another acute pancreatitis attack (cause unknown) - but by returning to eating a "normal" diet - my eczema would return, it's likely I would have another colitis attack, this is without the pain and other side effects - and I'm afraid I simply won't do it.
There are no specific items I require on prescription - thanks to M&S, I eat a fairly normal diet - so it's just bread, crackers and pasta which must be GS.
M&S have made a large number of their "standard products" such as sausages, burgers, sauces and many of their ready meals gluten free - where they can't - they do chicken and cod in GF breadcrumbs and not forgetting some cracking GF cakes and biscuits.
Sorry for the waffle - I eventually discharged myself from my gastroenterologist because it was a complete waste of my time waiting for appointments running 2 + hours late simply to argue the t*ss over whether I would return to eating Gluten for at least 8 weeks so they could take a blood test which may (or may not) confirm what I already know - my body needs a gluten free diet.
I guess I am fortunate that I don't have the ultra sensitive allergy that some coeliacs do (potential anaphylaxis - my daughters friend was this sensitive) -
Nnevertheless, on-going gut issues combined with eczema so severe I was peeling my clothes off every day matted in blood are two places I have no desire to return t.
(potential anaphylaxis - my daughters friend was this sensitive) I would be inclined to follow this through, anaphylactic shock is normally associated with an Allergy and not CD.
I consider myself super sensitive because I cannot tolerate anything that has any gluten in it ie Gluten Free 20ppm. With a gluten substitute in the Gluten/Wheat free foods causes other symptoms so my diet is more basic and expensive.
I only eat gluten for a week/ten days prior to my endoscopy after being completely gf for 6months. My results didn't show recent gluten damage so I had a false negative result which meant my health problems weren't taken seriously. It took a sympathetic gp and a research gastro to eventually diagnose me. I see it as short term hassle for long term health security.
This gets rather confusing as I gave up all wheat(gluten) foods eight weeks prior to endoscopy/biopsies yet got an "Active Coeliac Disease" result. And I do not see how eat one little bit of gluten is going to damage the villi, yes you will react to it and more so the longer gluten is excluded from the diet. Its like having an alcoholic drink six months after your last one...you react differently if you had a drink every day. its called logics
Dermatitis Herpetiformis Do you have to be glutened for it to return?
Do you have problems with 'GF Grains'?
How do you find eating abroad?