coeliac disease

My mum is gluten intolerent.
- Its not always easy to avoid the stuff, but theres no reason why it should affect you life in any signifcant way though. Although one thing she does say to other people/patients with coeliac is that one thing that does help a lot is if you cook your own food. Because a HUGE amount of processed/precooked food has gluten in it.

I tell you, some of the things that have it in are quite scary.
- Theres things like sausages etc, most of them have wheat rusk i them as bluk filler (saisburys top-of-the-line ones are fine, and what we mainly use)
- Then things like crisps/peanuts, most of which use a gluten-based binder to attach flavourings.
- Then just all sorts of other crasy stuff that you just wouldnt beleave! Check the lables!!

But yeah, theres much more avalable now than there was even 5years ago, all sorts of gultenfree biscuits/cakes, glutin free flour etc at supermarkets Guliten free bread
- Although her main staple is still potato salud. Shes gets though a jumbo-sized hellmans mayo jar on a weekly bassis!!

Daniel

Reply 2

I thought you needed to have a biopsy to be diagnosed...

Reply 3

Louenn

Definitely try to make your own food, as it'll also work out cheaper.

There are a large range of gluten free foods (eg Sainsbury's Free From range) but they're a bit more expensive than the regular stuff, and the loaves of bread are tiny. However, if you have a breadmaker, you can get the speciality flour and make your own bread.

It'll take a little while to get used to organising it all, but once you're into the routine, it'll be a doddle.

And, when you go out to a restaurant, you can request that they prepare a meal in a slightly different way - eg leaving a sauce off to avoid the flour in the sauce, and they'll usually be ok with it.

Reply 4

Revenged

I thought you needed to have a biopsy to be diagnosed...

You do.

The blood test is a screen (coeliac serology usually looks for anti-tTG and anti-endomysial antibodies - some places look for anti-reticulin or anti-gliadin).

For diagnosis you need a "d2 biopsy" obtained by OGD (oesophogastroduodenoscopy) in laymans terms a small piece of small intestine taken during a 'camera test'. You need to be on a gluten containing diet for a month - 6 weeks before the test to make sure that the surface of the gut doesn't recover (else the test may look negative) - and they look for three things: villous atrophy, crypt hyperplasia and intraepithelial lymphocytes...

Initial treatment is to correct any deficiencies that have arrisen through malabsorption (i.e. iron, folate, B12, calcium etc), main treatment is to avoid gluten (no wheat, barley or rye) and avoid oats cos usually cross contaminated with aforementioned items), then fairly regular DEXA bone density scans (as increased risk of osteopeania and osteoporosis).

Reply 5

isabella

9

Revenged

I thought you needed to have a biopsy to be diagnosed...

My Aunt had the biopsy, as the blood test wasn't enough. The result of the biopsy was that she was a coeliac. She used to get really bloated & stomach cramps, but now she's fine :smile:

Reply 6

isabella

My Aunt had the biopsy, as the blood test wasn't enough. The result of the biopsy was that she was a coeliac. She used to get really bloated & stomach cramps, but now she's fine :smile:

That's bacuase the blood test is not a diagnositic test - it is a screening test. It is very, very, very unlikely that you have Coeliac if the blood test comes back negative, therefore in that circumstance they would never send you on to OGD - it's much more expensive to do, and isn't an entirely pleasant test...

Reply 7

Juno

It's a blood test and a biopsy. I think they usually do the blood test first as it's less invasive and depending on what it shows you might not need the biopsy. There's a bit on the coeliac society site which explains things

ok... i read that website information... i am in a similar position to you juno because i was diagnosed coeliac when i was a baby... but i never was told anything about a blood test... perhaps they never had it 20 years ago...

but i completely don't agree with the website... i think it is absolutely ridiculous that people should be made to eat gluten just to get a positive result... if you are symptomless with gluten free diet then this alone should be sufficient... i know that my aunt is on a gluten free diet and is much better with a gluten free diet even though she has not been formally diagnosed... in such a case, making a person eat gluten for "at least six weeks" is tantamount to torture... i thinks its absolutely ridiculous...

Reply 8

Fluffy

You need to be on a gluten containing diet for a month - 6 weeks before the test

If that is the advice then all i have to say is that the medical profession has got it wrong...

Patient care should never come second to ridiculous protocol...

Reply 9

Yeah, my mum has never been offical diagnosed.
- Shes says its fairly pointless, becuase at the end fo the, coeliac or not, when she eats guiten containing foods, she feels ill. And not else triggers it.

Shes a GP btw.

Daniel

Reply 10

Revenged

If that is the advice then all i have to say is that the medical profession has got it wrong...

Patient care should never come second to ridiculous protocol...

Don't talk *******s/be a plank! If they remove gluten from their diet pre-endoscopy, then the test will probably be negative, as the mucosa recovers... Then the patient is back to square one. Great, huh :rolleyes:

Also, there are more things than Coeliac that could be wrong. If you miss the diagnosis, you risk butting your patient at an increased cancer risk.

Reply 11

Fluffy

Don't talk *******s/be a plank! If they remove gluten from their diet pre-endoscopy, then the test will probably be negative, as the mucosa recovers... Then the patient is back to square one. Great, huh :rolleyes:

I'm not saying that someone should take gluten free diet prior to endoscopy... You misunderstood...

Ideally, you aren't put on a gluten free diet until you are diagnosed but all too often doctors get patients to try a gluten free diet and then they have no more symptoms and feel brilliant again... I'm saying that when someone has already cut gluten from their diet and then has no more symptoms (as often happens) then making them eat gluten for six weeks just to get a diagnosis is horrific... They know they feel fine without eating gluten and all their symptoms have gone...

It's different if you have not been on a gluten free diet because you are still extremely ill... but if you have been put on a gluten free diet to try before being diagnosed and you feel absolutely fine... It just seems completely ridiculous to me that you then have then endure six weeks of torture by eating gluten just to make yourself really ill - just so you can be diagnosed...

You really think its fine to be made extremely ill just to be diagnosed...?

Reply 12

coeliac is incidious in presentation - a few more weeks of gluten isn't going to harm you, and means you get a real diagnosis. Treating for CD when it isn't can lead you to real trouble, especially if the disorder is much more serious... The 'cure' might work, but isn't diagnositic - not sensitive or specific enough.

My brother is coeliac, so I do know how horrid it is.

Reply 13

ok, i see what your saying... i guess the real problem is only created by people being told to try a GF diet before diagnosis... and the other problem being that GPs think they are seeing some hypochondriac with IBS that has nothing wrong... i've heard that they are making diagnosis better though... and i see what you are saying that you have to have gluten to stop you getting a false negative result... i was just a bit surprised because it's the first time i've ever heard of having to made ill to get a diagnosis...

i don't have any problems with it in real life actually... the two most annoying thing is not being about to eat out and having people question you about it... i got asked "so what happens if you eat gluten" so many times that i used to invent things that could go wrong... lol...

Reply 14

My bother tells people it corrodes his bowel and leaves a big hole in his abdomen - a bit like after the alien pops out in Alien... Some people are mucheos too gulible!

Reply 15

suicidal_dream

1

i have a family friend who is gluten intolerant and as has already been said - gluten is present in so many random foods -
take... pringles for example - you'd think all or none would have gluten in - but no, some REALLY random flavours have gluten in, though some stuff you would never guess has no gluten in - the family friend made a chocolate cake (obviously gluten-free flour) and it was quite possibly one of the best cakes i've ever eaten!!

its tough at first but eventually you get used to it, but definitely double-check the most random of foods for gluten!

Reply 16

suicidal_dream

...the family friend made a chocolate cake (obviously gluten-free flour) and it was quite possibly one of the best cakes i've ever eaten!!

We do deila's "truffle torte" chocolate cake.
- Its basicaly 50:50 darkcholate and double cream, with a splash of rum, and a few amaretti biscuits to stop it sticking to the tin!

Its absolutly gorgous, and you certainly cant eat more than two slices, bit of cream ontop...
- Only thing you have to watch tho is that cheaper amaretti biscuits are bulked out with wheatflour too!!

Daniel

Reply 17