Coeliac disease - anyone?

[ilove]

To cut a long story short, the consultant I have been seeing for pelvic pain that resulted in an emergency operation last October, last night said he thinks the pain is bowel related, and that I may have problems with gluten.

He is repeating the ultrasound scan within the next week to rule out any cysts and then referring me sideways to see a gastroenterologist for blood tests etc.

He said the stomach biopsy isn't a conclusive test as it can miss the affected areas of the stomach, throwing up false negatives.

I had a look on the Coeliac UK website when I got home last night, and was staggered to find I tick so many of the boxes for symptoms. A couple are quite vague but others very specific.

So, questions!

Do I need to carry on eating gluten until I see the gastro man (should be quite quick as this is private healthcare)?

What are the gluten free foods like?

Can I ever eat out again???

How easy is it to get the GP to prescribe the foods if I test borderline positive?

Will it eradicate the pain I am getting?

Is gluten in things like coffee, whiskey (he mentioned beer and thinks it may be in whiskey) or other drinks/liquids?

I have loads more questions but can't think of them right now!

Thanks

Do I need to carry on eating gluten until I see the gastro man (should be quite quick as this is private healthcare)? Yes, very definitely. However long it takes you must continue to eat a lot of gluten.

What are the gluten free foods like? Different. Tend to be a bit drier and more crumbly. If diagnosed as coeliac you'll want to get a breadmaker if you don't already have one. Panasonic is good and ABEtaDad seems to get good results with a different one - recipe posted in last few days.

Can I ever eat out again??? Yes. Restaurants serving British/American food are good as meat and veg are fine, although you do need to watch gravy/sauces. Those made with maize (corn) flour are OK. There are even a few restaurants offering gluten free menus. Some restaurants have symbols on the menu to indicate what is gluten free. I've even seen a fish and chip place that did gluten free once a week. However your choice will be more limited, you will need to be more organised and some restaurants are pretty useless. You may want to have tablets like Peptizyde to take in case of contamination.

How easy is it to get the GP to prescribe the foods if I test borderline positive? If you're diagnosed as coeliac they'll prescribe. If not and you find being gluten free helps (worth a trial after the tests) there are lots of gluten free products in supermarkets now.

Will it eradicate the pain I am getting? If you are coeliac it's likely.

Is gluten in things like coffee, whiskey (he mentioned beer and thinks it may be in whiskey) or other drinks/liquids? Gluten gets in a lot of things. Wine is OK, there are gluten free bears/lager but most I think are not (check that). Never drink whisky but try coeliac society

hmmm, I'm a poor typist. There are gluten free beers (and probably a few bears )

Thankyou tatt

Thankyou twopeople

My mum is a Coeliac and lives in a very rural area, so I know she does a lot of her shopping for things like pasta/bread on the internet - think the Coeliac society has links.

One thing she noticed was that she actually gained a little weight once her diet moved over to gluten-free, because her body was absorbing more nutrients. It settled down though, because she naturally ate less bread/pasta so less butter, cheese etc. Lots of rice and potatoes instead!

Overall restaurants seem to have been pretty good - one of the most thorough was Carluccios, when we mentioned that her risotto had to be gluten-free, the manager rushed over with a MASSIVE book of all the ingredients/components used in Carluccios food to cross-reference it all. Falling over themselves to be helpful.

I'm going into hospital tomorrow for a "top and bottom" - endoscopy and colonoscopy. Yuck!

Unpleasant, but the only way to know !

I've been diagnosed coeliac for 12 years, and though it can be a pain at times, I've spent the last 10 years travelling the world for work, eating out all the time, and its been totally workable.

My dad has been diagnosed coeliac for about 25 years. He finds it much easier now than in the 1980s - loads available in supermarkets, better stuff available on prescription, restaurants much more aware of it.

He avoids Italian restaurants as they are hard unless you want endless mushroom risottos! But Indian and Chinese are negotiable enough, and general British type restaurants are fine. He has found that restaurants are usually great about it - e.g. he often takes bread out with him and has that instead of the rolls with his soup and they never have a problem, hotels will always toast it for him for breakfast etc.

I think some coeliacs can tolerate a little gluten occasionally whereas others just can't - so dad got better by cutting out gluten from day to day diet, but doesn't suffer unduly by having one or two pints of beer or a snifter of whiskey. My dad can also tolerate oats quite happily whereas some people I know can't - I think the gluten is slightly different. So I think if you are officially diagnosed you might just have to see if you can tolerate some things or whether you have to be really really strict. He is someone who just gradually goes downhill if he has lots of gluten rather than having lots of pain immediately, so can luckily allow himself the odd beer or whiskey, and I think even had a small piece of my wedding cake .

I agree with the person who says that you should focus on what you can eat rather than what you can't - we never felt we had a restriction on our diet growing up even though mum cooked gluten-free for all of us.

good luck with the hosp appt too

Urgh I feel grotty. Basic news is that he (consultant) went to have a chat with my husband while I was in recovery, to tell him I must go wheat free immediately. DH asked him what the likelyhood was of it being neither Coeliac or severe wheat intolerance, and was told 0%.

I guess the only upside to it being Coeliac is the fact I'll get some stuff on prescription.

My throat is really sore though I don't really remember that bit, but the pain or having the bowel one done isn't going to fade easily...it bloody hurt and two nursing staff were holding me down.

Went and got a few bits of gluten free stuff on the way home, and will see how I et on with it.

oh ilove - sounds all a bit grim but glad you have the diagnosis straight away as now at least you know that a new diet should help a lot. it takes a while to get used to it but it will become second nature to you and your family fairly quickly. i just switch onto auto-pilot when cooking for my dad now, even though i haven't lived with him for 14 years, because it has just become normal for me and my family. you should also have the huge advantage of feeling tonnes better quite quickly

coeliac society is good - they used to do a book listing all sorts of gluten free products which made life an awful lot easier for my mum when shopping as she could check whether it was in the book or not rather than having to read every bloody label. so they are worth contacting - google them.

spend the time going through the labels of everything in your cupboards and freezer now and chuck out anything that contains any wheat or gluten so nobody makes a mistake by adding it later. things like stock cubes and soy sauce spring to mind as obvious ones to check. you'll find there are substitutes/alternatives for most things, e.g. kallo stock cubes are okay and widely available, and one or two soy sauce brands are gluten free too. Cornflour is good to have in your cupboard for gravies and sauces etc. as it is g free.

i know that a lot of supermarkets will make gluten free bread in the bakery for you if you pre-order so worth checking with yours.

also do an archive search on mumsnet because lots of people ask about coeliac/wheat free eating regularly and you're bound to find lots of tips this way.

i've actually just cooked lunch for a friend's 2yo coeliac and can report that corn pasta doesn't really taste hugely different to the real thing

best of luck, and hope the memory of the colonoscopy recedes quickly!