Celiac Blood Test Positive, long wait for Gastroscopy, what to do in meantime?

It might be worth being guided by your GP., but just as a suggestion, if it were me, I'd give myself a break from gluten for a few weeks - it makes such a huge difference. I have been told by other people that they recommend you actually eat some gluten for a week before the Gastroscopy , so that the villi in the gut are showing that they are affected. I've been diagnosed for 15 years, and that advice might not be the way people think anymore. There was no blood test when I got diagnosed, so I went to the Gastroscopy having had a huge plate of pasta the night before. Good luck with it all.

thanks Maggie. Pretty much what I was thinking and thanks for the reply. I do have to ring the Hospital for a pre assessment (Apt I have is from my GP letter), so I think I will bring the issue up with them, I'm only about two weeks (almost)GF and don't fancy going back on gluten despite some of my old favourites being gluten goodies.

Coeliac UK advises that you do not go gluten free until after a positive diagnosis and that you need to be eating gluten for a minimum of six weeks before your gastroscopy. If you are gluten free between now and then, this gives your intestine time to heal and the chances are your test will come back negative. Hence the reason you should continue to eat gluten until it is confirmed that you have coeliac disease.

Perplexed,

Thanks Perplexed,

Is the blood test reading not sufficient proof?

If I eat, say, one bag of crisps tonight, I' ll go to the loo at least twice before I leave the house, And when I get out of the car after driving to work, I'll need to find a public toilet before getting to the office, I literally walk in fear of not making it to the bathroom on time.

I feel between the blood test and my own body reaction, I have the answer. But is it necessary to even go ahead with the gastroscopy and return to the torture of eating food for six weeks I clearly can't tolerate? maybe my case is more severe than the average celiac.

You may find the information in this link helpful...

https://www.coeliac.org.uk/coeliac-disease/getting-diagnosed/

You're in the same position as me it seems. My diagnosis was a complete surprise as I don't get those toilet symptoms, just the tiredness! I Wanted to cut out gluten straight away because I am having sick days at work and I want to get better. It seems I will have to wait!

Hi there

I'm in a similar position:-S

I'm waiting to be referred to a specialist but since having the positive blood tests back, I've noticed a drastic improvement after cutting out gluten. My main symptom is tiredness and I find it soo hard to function when I haven't cut out gluten.

I just wanted to say that you're not alone. I had seen the advice about following a normal diet for 6 weeks prior to the tests..Arrgh!

I've had 'IBS' for about 13 years and quite severe lactose intolerance for about the same time. It's not been until this last year that the tiredness symptom has struck (since the birth of my second daughter).

By the way, do rice crispies and crisps have gluten in?? I eat crisps and rice in abundance.....

Thanks and sorry for hijacking your thread.

I hope you don't suffer too much while waiting for your diagnosis.

x

Thanks for the advice Perplexed. I have spoken to my GP and I do indeed need to stay on gluten for the test to be reliable. I don't need to overload with lots of bread etc .

Melanie, thanks. rice crispies and most breakfast cereals contain gluten, I buy a Kelkin brand of cornflakes as an alternative. Crisps definitely contain gluten but look out for gluten free brands. gluten is hidden in so many products especially sauces 7 gravies and a lot of ready meals , so you need to be vigilant to avoid.

Hi, did they say why you need a Gastroscopy. Just curious as i had been having loads of problems, i should have gone for a Gastroscopy last week and i cancelled it, didn't feel up to having it done. I had blood test done on thursday just gone to see if i have coeliac disease, if they come back positive i am hoping i can get on with changing my diet and hoping they don't start going on about another Gastroscopy .

Best of luck with yours x

You need to have gastroscopy because the blood test does not give you a 100 % definite answer. Considering the years ahead that you will be on a gluten-free diet (and perhaps developing another illness), it is VERY IMPORTANT to go to gastroscopy and have the coeliac disease diagnosis verified. However, if you eat a day or two-gluten free, this alone will not cure your intestines and will not affect gastroscopy results; it takes weeks or months to heal completely. You don't need to eat pasta the previous night ;o)

Just to clarify......I only ate pasta the night before my gastroscopy because I didn't know any better! There was no blood test when I was diagnosed (16 years ago), so I didn't have a clue. I am not recommending it, just sharing my own experience.

Figured I'd toss my situation in here. Keep in mind I live in Canada so what im saying for me might be different for UK or anywhere else . I got the positive blood test in may 2012. Ive been on the wait list to see a specialist... and then a wait list for the actual test since then. I go for my gastrocopy on march 3rd of this year (LOL at 2 months being a "long wait" ) . Ive been off gluten since the minute I got my blood test and I've never felt better.

My Gastroenterologist (Not my GP) said I did not need to eat gluten again before I take the test, he told me this back in October. He said if I come back negative then the diet is working in his opinion. If not, we get a confirmation at least and we know that I need to be more strict with my eating. I guess that means ill never actually know for sure if I have it but my symptoms were so severe that I doubt ill ever even consider cheating anyway. So I wont be eating gluten before my test. I dont plan on taking more than a day off work - not 6 weeks.

Im not sure why Im getting told different things then the rest of you seem to be.

PS almost all brands of rice crispies/corn flakes here have some sort of barley in it. They don't make it easy for us do they?

That's a ridiculous waiting time! You have made the right decision starting a GF diet right away instead of suffering for two years, but otherwise I don't see much sense in it. If only affordable, seeing a private specialist for gastroscopy would have been better. But maybe your doctor has also adapted to this reality in his thinking it's ok to not verify coeliac disease by gastroscopy. Or else, he/she does not quite understand the reality of your situation and this illness. Though you are motivated and your case seems clear enough, in general it's important also from motivation point of view to be sure of the diagnosis - the doubts can come years later. (By motivation I mean the motivation to stay on a strictly gluten-free diet for the rest of your life.)

There are also other aspects to consider. For example, in Finland you get a 21 € monthly compensation for a GF diet, but this requires that you have been diagnosed in gastroscopy. The compensation is a relatively recent thing - you never know what can happen...

Yes, lot's of crispies are bad; we can never have the 'normal' ones. Yet there are several corn flakes brands that are completely additive, barley and malt extract free. Try health food stores if you can't find them in a large super market. Or you might try ordering over the internet.

Hope you get some kind of confirmation soon!