Coeliac Disease

I have Ceoliac Disease and it is absolutely horrible. I was diagnosed over two years ago.
I had never heard of it until after diagnosis which took place in the Rheumatology dept. A smart Dr noticed some marking on my legs and ordered extra blood tests and this was how it was found.
There are a variety of symptoms and many complications. Even my nearest and dearest are not aware of everything and they are refusing to be tested.
If more people understood this disease it would be easier for those who suffer from it. There are so many people with it now. As soon as I mention it almost everyone knows someone who has it.
Thanks for highlighting this Nannieroz111
Sugarpufffairy

Thank you for the link nannieroz.

You're welcome GNers.

It is indeed a horrible disease, with a strong genetic component.
When I was first married and having children we had some friends whose first 2 babies were diagnosed with coeliac.
They divorced, remarried and had healthy children.

I think to have the disease must be bad enough without having to explain over and over again that this is NOT just a faddy diet!!!!!!

So many people these days (encouraged by slebs and faddy diet proponents) go around saying 'I'm gluten-free' that people who do have the condition are in danger of being thought 'faddy' unfortunately. However, many restaurants and hotels are much better at catering for coeliacs, and also
on the plus side, there is a lot more gluten free food available in the shops.

Thanks for the useful link nannieroz111

Sugarpuffairy. I wish your 'nearest and dearest' could have seen my friend when she collapsed and was hrs away from death because of Coeliac disease. Then they might think again. I know this sounds alarmist, but as you know it's very very serious.

My two daughters have said that they will get tested when they show any of the same symptoms that I had. I have pleaded with them to be tested and to have my 5 grandchildren tested. I have discussed this with my Gastro consultant and he advised testing my daughters and grand children but I can not force adults and I cant have the children tested.
It is such a nasty disease which sneaks up while you are so busy with other things i.e. mine was after the death of a person who was important to me but not a relative and 8 months after that my dad died. At first it was assumed to be the shock and stress of it all. I wish there was more testing.
Sugarpufffairy

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!

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.

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.

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 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.

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.

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.

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.

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.

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!

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

Off to google crunchie bars.

Bugger.

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

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 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.

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.