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Original poster

Any coeliac disease sufferers?

45 replies

mrsmillsfanclub · 10/10/2010 17:58

After suffering with what was originally diagnosed as I.B.S. for the last 6 years, my doctor has now suggested I have a blood for coeliac disease. What are the symptoms?
I suffer mainly with bloating,trapped wind, indigestion,loose bowels,constipation and colicky spasms.
I take coloflac on a regular basis which helps slightly.

OP posts:

CMOTdibbler · 10/10/2010 19:04

I have Cd, and I know lots of people that have been told they have IBS, that turns out to be coeliac disease - your symptoms are very common CD ones

Original poster

mrsmillsfanclub · 10/10/2010 19:54

Thanks cmotd. I hope that this blood test throws some light on things. It is a miserable existence for me at the moment, at least with a proper diagnosis I could feel I have slight control over my symptoms.

OP posts:

BeenBeta · 10/10/2010 20:05

mrsmills - yes that sounds very coeliac.

The blood test is not infallible though. Nor is the gut biopsy.

Once you have been through the whole range of tests they may or may not diagnose you as coeleiac.

If you get no joy just go on a strict gluten free and lactose free diet and se eif your symptoms stop. You must wait until your tests are over befoe you do this though.

I was not diagnosed coeliac (sme people arent) but going on a strict gluten free and lactose free diet massively improved my health and those symptoms went away.

Keziahhopes · 11/10/2010 14:53

Hi - newly diagnosed coeliac here, though it has taken about 5yrs to get to this stage! Agree blood test helpful, but you have to still be eating wheat and gluten then .. if it doesn't show anything you can ask to be referred to a gastroenterologist who can do a biopsy which is more helpful! Just like BeenBeta posted ~(just read all posts, oops!)

It has taken some time for symptoms to improve but they are!!

MaryBS · 11/10/2010 14:56

I have been tested for CD, and am awaiting the results.

On Friday (was tested last Tuesday) I cut out gluten from my diet and since then have felt SO much better! My stomach is still sore, but no cramping, bloating, spasming - that has all gone!

LisaLouise73 · 11/10/2010 15:08

I think you MAY have cracked it Mary!

Good Luck x

BeenBeta · 11/10/2010 15:18

MaryBS - that sounds great. It was a revelation going gluten and lactose free.

You may well find you lose weight too. I was quite bloated rather than fat and it all just dropped off me.

MaryBS · 11/10/2010 17:30

Still early days I know, and my stomach is still sore, but the weight has already dropped off me! I just hope the blood test proves something though, as the Dr never told me to keep eating gluten, and although I didn't avoid it, I wasn't eating much food either, because I felt so ill!

Keziahhopes · 11/10/2010 18:14

Oh glad you had that test first and that your symptoms are going/gone

nightcat · 11/10/2010 22:03

Mary, I was once at the chemist and there was a lady customer literally yelling at the counter for extra strong water tablets as she said she had really bad water retention - which in most cases is really bad inflammation due to wrong diet.
I can't believe what people put themselves through before trying diet.
Before I stopped eating gluten (thanks to my ds who had to go g/free), I was always tired and always bloated. It's actually quite amazing how much better you feel w/o wheat. I also think that wheat is no longer processed as it used to be, which exacerbates the problem.

Original poster

mrsmillsfanclub · 12/10/2010 08:11

Thank you all for your comments. I will have the blood test on friday and then try the elimination of gluten and lactose and see what happens.
I also feel very lethargic, but just assumed this was because I almost constantly feel unwell, didn't think CD could make you tired too.

OP posts:

MaryBS · 12/10/2010 08:38

Nightcat, it was hard to believe that something I'd been eating all my life, and is such a staple part of my diet should be affecting me so. Not only that, but reading every packet to make sure it doesn't contain gluten is tough when you're not used to it!

Last week for example I ate tapioca which upset me (ingredients didn't mention anything gluteny that I could see, but elsewhere on the packet it said not suitable for a gluten free diet, and I'd missed that) and also oatso simple also upset me (has a warning, produced on a wheat line, even though it doesn't contain wheat, although I guess it could be oats too).

Now I know of course, I'm a reformed (if slightly disgruntled) character!

I phoned the Tesco helpline yesterday. I knew I couldn't have the tortillas, but I wanted to know if the other products in their fajita meal kit (salsa and fajita seasoning) were safe for me to eat. They couldn't tell me!

higgle · 12/10/2010 16:59

MyDH has most of the symptoms of coeliac but tested negative a few years ago. I think he was already off gluten by the time he had the tests. He keeps saying that he wonders if it is true coeliac because his reaction to any food with wheat or containing gluten is pretty well instantaneous - it can't have got very far into his system by the time the diarrhoea starts. Does anyone else on here have this type of reaction? He can drink beer without side effects, but hardly ever does. Ordinary bread, pasta, produce serious reactions.

Keziahhopes · 12/10/2010 19:02

mrsmillsfanclub - cd can definitely make you tired!!

FlyingInTheCLouds · 12/10/2010 19:10

mmfc- i thought I had ME before being diagnosed deffo makes yoy tired.

MaryBS · 14/10/2010 14:14

Had a minor blip yesterday, with stomach cramping etc, but feeling better again now. Think it was some contamination somewhere along the line (eg crumbs in the butter from the kids' breakfast, although didn't see any)

nightcat · 14/10/2010 16:31

hi Mary, another thing I like about gf is how flat your stomach feels :)
I also noticed that whilst wheat makes me bloated, if I have any baked gf with soya, I feel like I have eaten razor blades, so now I don't have any bread and if stuck, would have a rice cake.

MaryBS · 14/10/2010 17:07

I know, my trousers keep falling down :o

nightcat · 14/10/2010 17:35

MaryBS · 19/10/2010 13:24

ALl the blood test results came back negative :(. Yet going GF has DRAMATICALLY improved my health!

I feel really really crap about all this.

I have an appt with a gastroenterology clinic in a month's time. In the meantime, I am to eat gluten and keep a food diary and what effects the food has.

So, for lunch I had a bacon sandwich. Lets see what happens...

notapizzaeater · 19/10/2010 13:33

My DS is coeliac and he reacts quickly !!! In gob it goes - out bum it comes .... 90 mins later.

nightcat · 19/10/2010 20:15

Hi Mary
U decide if it's worth the pain eating gluten, but in the meantime read up on gluten sensitivity in BMJ/pubmed and when you go to drs ask if they can do a gene test.
Tests only pick up very severe end of the spectrum, biopsy takes a microscopic sample of the gut which is 6m lon, so you can have parts of it damaged and still test OK.
My ds bloods were negative, but he had the gene test (long story) and has a gene associated with gluten sensitivity. His improvement on the diet has been completely amazing and far exceeded all my expectations.
Some drs recognise diet trial.

FlyingInTheCLouds · 19/10/2010 20:24

might be a wheat intollerance

Mooos · 20/10/2010 06:10

Mary, as an earlier poster said, the blood test is not infallible and neither is the biopsy.

There is a company that does food intolerance tests...not cheap but something to consider.

www.yorktest.com/

MaryBS · 20/10/2010 08:22

Thanks, appreciate this... I hate not knowing!

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