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

try re posting in the Allergies section there are a lot of people on there who are GF or whose kids are.

Fwiw my sister's vg friend is coeliac as is her son, they generally seem to be ok with eating out. Only time I remember them having to go home to eat was at a summer fair where the food was all hot dogs in buns.

It's def not in wine- my sister and her friends seem to get through a fair bit of that!

Thankyou

I have 2 sons who are intollerant.

I tend to coon from scratch and the whole family has a fairly GF diet now. Some foods are not to bad and other are a bit bleurgh!

Genius bread is a hit with my two boys. I have found in general that the stuff prescribed isn't that nice but quite a lot of the free from range isn't too bad. So I don't bother with the hassle of prescription food any more. Sainsburys has quite a good range of GF stuff.

Yes you can eat out, there are plenty of foods with out gluten at good restaurants. Take aways are a bit more difficult, though our fish and chip place will do the fish without the batter. No more McD's or Pizza Hut though.

The pain will disapear and you will feel so different. My 2 were different boys when they went GF.

Whisky and beer are made from grain which is what you have to avoid. Wine isn't neither is coffee.

Some people are also sentive to barley as well so watch that.

You just have to read labels all the time, but you soon get to know what is what ie: some soups contain gluten, some don't.

It can be a pain but it soon becomes second nature.

This is a brilliant site and someone will answer your questions

gluten free message board

To answer some of your question

Yes, stay on gluten, it helps to make sure the result is accurate especially if you know it won't be long.

Eating out can be difficult but there are a lot of restaurants who have specific GF menus.

Spirits and wine are GF.

Your test will be either positive or negative. If positive you can get some things on prescription.

It's my DH who has CD but when he was first diagnosed I did use that website I've linked to a lot for ideas for eating out etc.

X posted with mrsgokwan and as you can see there is conflicting advice already . Whisky is made from grain but the distilling process does make it OK. Some things are labelled as GF but contain barley malt which many people (including DH) can't tolerate. So, for example Kellog's Rice Krispies and corn flakes are not GF, but some other brands (Dove's Farm and Whole Earth are) McDonalds is possible - albeit without the bun - the liner they use on their trays has a list of allergens. I hate the place personally, but I know DH goes in for his dirty little fix of Big Mac, no bun, and fries.

I suffered a lot of unspecific bowel problems over the years and was tested by biopsy for coeliac. It came up negative but I went on a gluten free (GF) and lactose free (LF) diet on my own initiative after reaidng about it on MN and all the symptoms disappeared. I lost 10kg in weight over the last 12 months and feel better than I have for years.

After you ahve finished all the current tests you should try a GF/LF diet and see if it makes a difference. You will know within a fortnight.

Now if I eat any gluten or lactose by accident I feel ill within a few hours and it takes 2 days to get over it.

The thing is though, pelvic pain can be due to other issues so you do need to have it checked out very thoroughly to exclude other possibilities.

YES you absolutely must keep eating gluten/lactose until all the tests are finished.

Thanks everyone.

Bugger to the whiskey

(note more bothered about that than the bread - lol!)

I've posted on that gluten free message board MissAnneElk, thankyou.

If the test comes back negative I'll be gutted, I'm fitting so many of the symptoms...if it IS negative could I still be intolerant?

x-posted with others there.

ABetaDad thanks, I have always bloated with bread and if I eat pizza I don't go to the loo for days (sorry if TMI). Can also gain 1/2 a stone in a day if I eat bread or potatoes with every meal.

The operation I had last October found a small cyst on one ovary, and small amounts of scar tissue on the other side, but couldn't find any major cause for the amount of pain I was in...had my appendix out 25 years ago so it isn't that!

Yes you can stil be intolerant even if the tests are negative. I have read that happens to a surprisingly large number of people.

That is what happened to me. Tested negative but reacted positively to excluding gluten and lactose.

I found it took me about 3 months to find a full ange of foods I could eat. bake my owb gluten free bread and cakes or buy Cribles cakes form Holland & Barret or a few things form the Sainsbury Freefrom range.

It is important you stop all milk and milk products as well as cutting out gluten containing products.

I don't drink milk, makes me puke - have it about twice a year on cereal. Black coffee and mint tea are what I drink. I do like custard and cream though, on home-made baking

Only eat cheese cooked on the odd meal, ie home made cottage pie has some grated on top, or pizza. Can you get dairy-free cheese? I guess that's a contradiction in terms though!

I find lactofree products are good but never tried their cheese.

Not surprised milk makes you feel sick. Does make me sick too but so does custard. Alpro do a really nice vanilla soya custard in cartons available from Sainsbury. Keeps well in the fridge. Good lactose free Swedish Glace ice cream is available from Sainsbury too.

Thanks, I'll look out for them

Hospital rang earlier and I have US next Thursday, and then Gynae appointment next Friday morning, if the US is clear I guess he will refer me sideways to a Gastro man. Fingers crossed!

Abetadad my youngest is GI and LI and loves the Lactofree range, including the cheese, hard and soft.

And thanks for the icecream tip

My husband has coeliac disease, diagnosed just over a year ago. He felt massively better within a matter of days after going gf and the change was not as horrendous as we expected. Eating out is a little tricky, but not impossible. Most curries are gluten free as long as you avoid naan bread. We have also managed pizza hut - if you take in a gf pizza base they are often happy to do one for you. DH also eats McDonalds now and again - without the bun.
Most drinks are gf except beer, and you need to be careful about barley malt extract which is used as flavouring in some drinks. Hope you get good news, but don't panic if you test positive. Also, what abetadad says- don't go gf until the test as it will come back negative even if you have coeliac disease. Without a proper diagnosis you won't be able to get gf food on prescription.

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

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.

ilove, u are a lucky gal to have a sensible dr, b/c the advice to keep on eating gluten until u get more and sometimes irreversible damage is very outdated (the so-called gold standard to make you so ill than they can flog you a few more pills). Based on the severity of the problem and improvement on the diet it's possible to get dr to prescribe gf products. However, be aware that those are only basics substitutes and you will find that you need to eat a much wider variety of wholesome food to really get better.
Good luck, at least it's totally manageable with the diet alone, so no drugs AND you will probably feel better than you have for a long time.
Another brill source id celiac.com, inc quite awesome forum.