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[pj44]

Have just been told I have coeliac disease. Doctor was not that helpful. I just went into panic mode ad all she talked about was having a endoscopy I just cannot do that. What with having panic attacks. I have rang the coeliac helpline and they said I don't have to have one if I really cannot have it done. She mentioned something to do with bladder tests I'm not sure what she means dies anyone know? I'm in a mess with it all.

[Kathleen]

Hello pj44.

I don't have coeliac disease myself but I was diagnosed with Ulcerative Colitis when my periods finished five years ago so I know what it's like to confront two things at once. I needed a colonoscopy and my emotional state added to my concerns about the procedure but in actuality everything was fine as the staff had plenty of experience dealing with patients like me and of course the sedation works wonder!  However if you don't want the test you are perfectly within your rights to refuse.
It's likely that better informed ladies will be along soon but I wanted to send you a hug and let you know I've been where you are and coped without problems, if I can do it I'm sure you can.

Wishing you well and take care.

K.

[pj44]

Hi thank you for reply. I had a colonocopy 4 years ago I was a mess then. But yes I had it done. But this is not one I really think I can do.

[Taz2]

I was really worried before mine. It was fine. I went into work straight after. The thinking about it was much worse than the actual procedure. If you are really anxious then you can be sedated - I would go for this if you think you won't be able to cope. I found endoscopy much easier to cope with than sigmoidoscopy/colonoscopy (bowel investigation) as with the endoscopy you don't have to do anything beforehand apart from not eat for a specific time.

I have no idea what a bladder test would have to do with coeliac disease?

Taz x

[andius]

I seem to remember the endoscopy with celiac  is for biopsy of the small bowel (duodenum).

I had an endoscopy to look at my  esophagus and stomach once and I had no memory of it at all. No issues whatsoever.

A

[pj44]

Hi thank you for replies I was a bit stressed when I rang coeliac UK. I might ring later now in calmer. I will have the endoscopy if I have to. But will try first to see if I improve on the diet. I just want to see someone about that. Which on the NHS website says that you will. But I have only been given a number to ring and when I rang it was the endoscopy department. So I don't know what to do. Everything is so expensive too and I am not working at the moment.

[Ju Ju]

I do not have coeliac disease, although I've been tested several times. I am intolerant of wheat, though my reactions to wheat have calmed down considerably recently.

Years back, it was far more difficult to avoid wheat products and I had to avoid processed food, but now there is far more awareness of dietary needs. There are far more free from foods on the shelves and ingredient lists have to be available in restaurants etc. There is far more awareness of cross contamination as well. But you do have to ask, but now I find that people usually fall over backwards to help you these days. There are a lot of excellent recipe books and you can adapt recipes. I experimented with different flours and use gram flour a lot for savoury dishes for example. By the way, I don't particularly enjoy cooking, but needs must. You get used to reading labels and recognising alternative names for ingredients that contain gluten, but now it's easier as it has to be highlighted.

 Once you get over the shock and you start feeling better, it won't seem so huge, just a way of life. Coeliac disease is better understood by people than intolerance.

I've had both colonoscopies and endoscopies. I found the thought of both procedures far, far worse than the reality, particularly endoscopy. No horrid preparation for that!

[SadLynda]

You can get a small amount on prescription but not that much.  If you can cook I would learn to bake your own bread and cakes, its cheaper - if not you might want to learn

I am not coeliac but I am an expert on the subject as Mum was diagnosed over 20 years ago.

Mum had all the 'oscopies' too

Apparently Tesco are getting much better with their selection, they even have an advert on tv on the subject now.

[Ju Ju]

Be careful you use oats that don't contain gluten, though. I think the normal oats do, but tescos free from selves, non gluten oats, I think.

[ancient runner]

If you go on a gluten free diet then the endoscopy won't be any use. They want to do one to make absolutely sure you are coeliac - they look at the villi in your small intestine which are damaged by gluten. If you stop eating it, the damage will reverse - people are told to keep eating it till the test has been done. Believe there are advantages in knowing for sure that you're coeliac, not least that it's a very difficult diet to follow if you don't absolutely have to. Gluten is in all sorts of things - malt vinegar, for instance. Soy sauce. I could go on!
I had endoscopy earlier this year with no sedation. Wasn't much fun but it was over quickly and yes, I had to work for the rest of the day. Would go for sedation if I had to do it again I think.

[pj44]

Thank you for replies. I really don't want test. So will just see what doctor says Tuesday and go from there.  Speaking to others some have had endoscopy others have not. I see what you say about stopping eating gluten before tests. I'm just going to see how I go and if I'm better then will carry on if I don't get better then will have the endoscopy

[Taz2]

Hi pj44 - would you reconsider? The test is really not bad at all - you can have sedation if you are really scared - but the benefits can be paramount in making sure that your diagnosis is correct. Have you watched the video on the Coeliac site which explains why the biopsy is so important? You can lose valuable months of treatment if your diagnosis from blood test alone isn't correct. This Professor explains it really well. https://www.coeliac.org.uk/coeliac-disease/getting-diagnosed/gut-biopsy/

Taz x

[ancient runner]

One thought PJ is that you may think you're avoiding all gluten but it's incredibly difficult to do this properly - so you may end up thinking gluten isn't the problem and you don't have coeliac disease when you do, but are still eating it inadvertently. The test REALLY isn't that bad.
PS I turned out to not have coeliac disease. I've never been so glad to get back to a normal diet (I'd tried going GF when waiting for results - I have every sympathy for coeliacs now). It's good to know absolutely definitively.

[andius]

FYI - If it were me, I would have the test....no question about it then.

That diet is not one I want to have to do unless I absolutely need it. The older I get, the more pleasures in life disappear...EXCEPT for food!

Keep eating regular and have the test!!! (before the holidays if possible  )

A

[Ju Ju]

On a lighter note, having had to avoid wheat for years, excluding a certain food or foods is not terrible. For me it was an easy choice. Eat the offending foods and be ill; avoid the foods and feel fine. It was a huge relief to find out what foods were the problem. It was more of a problem for others who felt awkward eating wheat etc in front of me!! I sorted that one out quickly! I'm not going to fall off the wagon or get upset! It does mean eating in fast food places is a big no no, but that's healthy. I miss bread and many substitutes cause a milder problem, but I found other alternatives. After a while it really was no big deal and things are so much easier now there is more awareness. DH says he hasn't eaten so well and healthily since all this started.