Coeliac Disease

I was wondering how many people on here have been diagnosed with Coeliac Disease?

As I am seemingly super sensitive I'm not able to eat out unless I have booked in advance and been reassured that they understand about cross contamination! The slight thing upsets my tummy.

rosequartz The kits are blood tests and clearly state that, if a positive result shows, then you should see your doctor. They also tell you to make sure that you are still eating 'normal' foods and not gluten-free.

They are just a starting point for you to decide whether to take matters further.

As GP appointments are often unavailable for two or three weeks, then there's the further wait for the test to be carried out and for the results to come through, the kits are a way of finding out the result more quickly.

Thanks, I shall try that I think. I hadn't thought of buying it ready-made, it's bound to be better than my experiments.

Cookery books - I find I have loads, but always use recipes from the internet instead. However this is a whole new world. Also, many use ingredients that simply aren't available nearby. I would never buy a Jamie Oliver cookbook because his ingredients simply don't exist out here in the sticks.

There are lots of good cookbooks out there, janer - for gf cakes etc!
The only thing is that I found the pastry I made for DD could have knocked someone out as it was so heavy and hard. You can buy gf pastry in the frozen section of most supermarkets, I think!

The only sure diagnosis is by a blood test which gives an indication, then an endoscopy would show definitely, with an indication whether or not the villi have been destroyed by gluten.

To find out from a proper medical diagnosis you have to eat gluten products or else the test will be inconclusive.

I do think that if you fear you have coeliac disease it would be better to go to the GP than self-diagnose from a kit bought from the chemist. .

That sounds good, minimouse. Maybe I will be able to persuade DD, then.

nannieroz I love you! I want to be able to eat one sweet a week, and one cake. I'm on a diet anyway, so being gf suits me very well, but I don't want to feel totally miserable about it. My favourite sweets are maltesers so it came as a huge blow. What on earth am I going to have for breakfast in bed at 6am on xmas day in future? They were the perfect start to a day of non-stop small-child frenzied activity. Along with the small bottle of prosecco or buck's fizz supplied by DBH in my stocking. Turkish delight, maybe...

OK. Thanks, MiniMouse

merlotg The test I used was a kit from the chemist in town - a reputable kit! Simple to use blood test and the results are ready within five minutes.

There was an online test mentioned on telly yesterday - Caroline Quentin was being interviewed - but I can't find it.

I've noticed that since giving up wheat based products I only have to walk down the bread aisle in a supermarket to feel bloated and have stomach cramps.

I've just done the coeliac test and it was negative. Good news in one sense, but now leaves lots of ??? I've just been reading up more on the subject and there is more and more evidence of gluten sensitivity as opposed to allergy/intolerance. It all gets very complicated, doesn't it?!

I'm going gluten-free for a while to see if it makes a difference. I was diagnosed with ME eighteen years ago, but am wondering if some of my difficulties may be gluten-linked.

Hi ladies........ I need to clarify. Crunchie bars and Toblerone are both listed under section 2 of the Coeliac Food Directory 2015.

Section 2 reads:
Whilst products are not labelled GF, the products in this section are made without gluten containing ingredients and the manufacturers have taken steps to control cross contamination with gluten.

Just had a thought, please check carefully, DD said toblerone is ok but the uk version may be different!

That directory sounds most helpful nannieroz111

Hi Janer crunchie bars are GF. They are listed in the Coeliac Food Directory for 2015. Enjoy!

Toblerone! Excellent. I don't like thorntons, sadly. I am a hard and crunchy centres person.

Off to google crunchie bars.

Bugger.

Beer is no good either, janer

Some wines are refined with wheat gluten, but the amount is very very low, only the most sensitive would react.

Toblerone is OK apparently - and I think Thorntons chocs are gluten free!

I'm still so new to it, and making such stupid mistakes so can completely understand how relatives and friends fail to understand. A friend offered me her bag of maltesers this afternoon, and I took a couple. This evening I had such pains while I was out. I came home and googled maltesers - I had forgotten about the 'malt' part.... the same as in malt vinegar, which I love in various sauces. And I almost bought Horlicks last week.

My friend has Crohn's and one of her DD is has coeliac.

I have just made gluten free bread; it is better than a lot of gf bread that you can buy but still not the same!
Many eating-out places are brilliant now at providing gf food but there are still a lot that have a long way to go to catch up.

Every time I go out for a meal, I now contact them if I haven't been able to find anything to eat. I ask them to make it plain that gluten-free breads are available, pastas if possible, and to mark it on the menu boards. Many have been very helpful, all have said they will try to accommodate, if asked, and make substitutions but that it will increase the waiting times for meals in most cases. It's a start, though. I began doing it when I heard a family turn away from the queue at RHS Hyde Hall, they said there was no point in having to queue for a table only to get there and find out that half of them couldn't eat.

I have established sensitive gluten enteropathy. When I was diagnosed I had never heard of it. I am also intolerant to lactose but I can have some but too much upsets me. So anything that mentions milk I have to be cautious of. I have decided when I next go to the GP for a check up I will ask if I can have some Lactase Enzyme to see if that might help. I have Lactofree milk, cheese & cream. I am so glad this is on the market now as I don't like any dairy alternatives so I had to do without. I have a problem with yeast too so gluten free bread and rolls are a problem. I was told by the Gastroenterologist that it was an autoimmune condition. I have several other autoimmune conditions too.
Everyone with Coeliac has to read the ingredients label on everything to make sure there is no 'hidden' gluten in the product. e.g. starch, breadcrumbs etc. I order my grocery shopping online and the other week I included meatballs in my order. There was no mention online that they had gluten in them so I thought they would be 'safe' for me but when I received my order I checked the ingredients and there was wheat in them! Not good I may add!
I find eating out a problem so only eat out on special family occasions. I try to look on the bright side of life and try to be positive after all there are lots of others worse off than me.
When I was first diagnosed with this condition I knew no one with it but I have learned through the years and the information from Coeliac UK is a help too. I'm happy to try to help others struggling with this condition as I know exactly what it's like! My best wishes to you all.

My DD has coeliac disease. Last winter, before diagnosis, she lost so much weight she was almost skeletal! I was so worried about her. She went to see her GP about an unrelated problem. He did a barrage of blood tests, and one of them flagged up gluten intolerance. She now has her own prep. area in the kitchen and her own toaster. Recently, she has discovered that if she makes her own bread and cakes with spelt flour, she can eat these without trouble. (At the moment). She has put on weight, has tons more energy, just as well with four children under 8! She looks much better too.

Though Crohn’s and celiac disease may be related, having one condition doesn’t mean you will develop the other. “Both are common conditions, and there is an overlap between the genetic risk factors, indicating there is a slight link between Crohn’s and celiac disease,” Ausk says. But no matter which condition you have, a gluten-free diet can make life a whole lot easier.

Copied from a health website re: Crohn's Disease

My DiL is Coeliac and her son (my DGS, aged 13 - on another thread) has Crohn's Disease. I have read that Crohn's is likely to be genetic but could it be connected to having a mother who is Coeliac? Rest assured, I am not looking for someone to 'blame' here, I would just be interested to know.

A simple blood test will give an indication of whether you are likely to have it.
DD must have had it from birth without any of us realising; it was only discovered a couple of years ago after years of misery healthwise. Now she is on a gluten-free diet she is so much better.

I've only just persuaded, after much denial on her part, DD to go to see her doctor. I can't blame her, I was in denial too. It does turn your life upside down until you accept that you are going to have to change things. And gluten is in such weird things. Soy sauce!