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CuriousG 
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Joined: 01 January 1900
Location: Raumati South
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 Topic: Coeliac Disease
Posted: 11 September 2009 at 8:13am |
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I am sticking this in the General Section - I have seen topics about this before but can't seem to find any this morning....
I have been suffering for a while with many of the symptoms that *could possibly* be attributed to suffering from this. After being in the Delivery Suite last week with awful pains, my OB has recommended I be tested for this (based on my history).
I have been doing some research about it and its all rather freaky. Luckily I know a couple of people with it so will be hitting them up for information but my main question is, has anyone ever had the Small Bowel Biopsy to test for this? I have to have bloods done but this came up in conversation. Obviously I can't have it done at the moment but it is something that I may have to have done in the near future. If you have had it done, what was it like? How do they do it - is it painful, does it have a long recovery time etc etc.
I have started looking at changing my diet, which again is rather overwhelming although on the Coeliac's website they don't recommend doing this until you have had the tests otherwise it might render a false negative result. I can not believe how many things have gluten in them!
Any advice gratefully received!!!
Edited by CuriousG
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littlestar
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Location: Auckland
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Posted: 11 September 2009 at 9:16am |
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Hi
I had my biopsy 5 years ago. Definitely don't make any diet changes before you finish the tests - you'll end up getting a negative result when it might have been positive.
Talk to your GP about getting the blood tests first - they pick up antibodies in your blood. Then you'll be able to decide whether to go for the biopsy (its not fun but is over pretty quickly)
The gastro biopsy: you don't eat anything for I think 12 hours - they give you some stuff to make you all a little lahlah. They spray some stuff at the back of your throat to numb everything, then they stick the tube thing down and take a biopsy from the beginning of your small intestine. It doesn't hurt, but you do have a scratchy throat afterwards - I went privately for my tests and I have heard things are nicer going that way than publicly. DH held my hand during my last one (they do checkup biopsies) so it can't be that gross to watch on the TV screen.
PM me if you want any info.
Edited by littlestar
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GuestGuest
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Posted: 11 September 2009 at 9:47am |
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I am gluten intolerant, possibly coeliac but have never bothered testing for it because I know that gluten makes me feel ill and I don't need a (somewhat horrible) test to tell me that!
I cut gluten out of my diet back in 2004 and have never looked back, I can't believe I used to eat gluten and don't even see products with gluten in them as food anymore!
There are a few gluten free threads in the food section and I think some website links in the allergy section. It is daunting to begin with but it does get easier and as a positive it means that you are eating healthier (no cakes, takeaways etc)!
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Bexee
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Posted: 11 September 2009 at 10:16am |
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I've had the small bowel biopsy and while it's a bit uncomfy, it's not terrible.
My advice is to have the blood tests first, which will give you an indicator, and go for the biopsy from there if it looks suspicious.
My blood tests looked very suspicious (and my dad was diagnosed with coeliacs jsut before he died) so I had the biopsy which came back normal so still don't know whether the irritation is further down or not.
They can also do a tissue typing test (which is just a blood test) which will tell you whether you are a certain tissue type as only a certain tissue type (which 30 per cent of the population has) get coeliacs. If you're not that tissue type then you won't get it.
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AandCsmum
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Location: Palmerston North
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Posted: 11 September 2009 at 10:49am |
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Getting blood tests is quite simple. My Dr has just told me to feed Alia a high gluten diet for 2 weeks & then get the blood test done.I did this all over the phone but have to make an appointment a couple of days after the test.
Google Dr Gluten, that is a hand website as well.
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Kel
A = 01.02.04 & C = 16.01.09 & G = 30.03.12
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NewPhoenix
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Posted: 11 September 2009 at 12:22pm |
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Guests
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Posted: 11 September 2009 at 12:53pm |
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I had my biopsy about 5 years ago, cause the hospital was running late I had no sedation just the throat spray and it wasn't pleasant but by no means painful or anything.
They put a gastroscope down your throat into your stomach and then small intestine and take a biopsy. On the plus side you get to see your stomach/intestine which is really interesting
Def don't change your diet beforehand and this website www.mfd.co.nz has a really good list of "normal" foods that are gluten free.
Also depending on where you are Foodtown makes a gluten free bread thats pretty good and not too $$$ I think its bout $5 a loaf ,
Edited by misscheeky
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cuppatea
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Posted: 11 September 2009 at 1:17pm |
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I'm not gluten free but I do have to deal with allergies cos of Spencer and I always wish there were as many dairy free options as there are gluten free ones. Our local fish and chip shop and pizza place even do gluten free options.
I keep wondering about getting retested myself, my blood test came back as high but normal but I didn't know that it was dependant on what you had eaten and i don't eat that much gluten. One day I might get retested.
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jaz
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Posted: 11 September 2009 at 3:50pm |
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My nieces partner has coeliac's disease and she seems to be managing the change of diet well now, although I think it took her awhile to change her way of thinking, eating, and living. Initially she found it difficult to think of things to eat and have variety in her diet, she really missed the cakes and deserts, and she found it impossible to eat out. Even coming over for dinner etc was difficult. There seems to be more and more gluten free products on the market and restaurants and cafe's seem to be catering a lot more now than when she was first diagnosed, although you do pay more for it. We make the effort every time there is a family meal, its the simple things like don't stuff all the chickens, or use a rice stuffing and thinking about dressings, sauces and marinades.
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Ceres
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Posted: 11 September 2009 at 4:36pm |
I've been through it too, not too unpleasant since you're mostly out of it!
It turned out not to be coeliacs, but gluten intolerance (and IBS). I have all the 'symptoms' of coeliacs barring the official diagnosis (e.g. very poor nutrient absorbtion, energy levels and constant tummy upsets). In any case, I found since eliminating gluten that I've had far less trouble. Less tummy upsets, less issues with nutrient absorbtion and more energy too.
It's not too difficult to do the gluten free lifestyle once you're used to it either - it just makes you be a little more prepared, and if anything, eat a whole lot healthier  .
Goodluck!!
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CuriousG
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Posted: 12 September 2009 at 4:59pm |
After researching it more, I am not convinced it is Coeliacs but more of an intolerance. I started today GF just to see how things go. Am going to give it a go for a while and hopefully it makes a difference. If not, Ill put it down to being pregnant (because while I already have IBS - previous diagnosis - things have definitely been worse since being pregnant). 
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MrsMojo
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Posted: 12 September 2009 at 6:26pm |
I had my diagnosis biopsy 5 years ago and then another one 3 years ago to ensure the gluten free diet was working. I was sedated both times and in and out very quickly. They suggest you don't make any major decisions the day of your biopsy because the sedation can fog your brain but the first time I just took the day off and the second time DH stayed home and helped out with the baby. I was fine though.
I know it's seems overwhelming but you'll be surprised how easy it is to be gluten free, especially now that it's so recognised and a lot of people choose to eat gluten free, not just those with coeliacs or gluten intolerence. www.mfd.co.nz has a huge list of supermarket foods that we can eat and there are new products all the time, it's becoming cheaper too as mainstream brands start making GF products.
If you are diagnosed I have heaps of recipes that you can use and I can help you adapt old faves so they're GF too.
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busymum
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Posted: 15 September 2009 at 1:05pm |
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I went through this last year. My dr gave me a blood test first (but I had already reduced my wheat intake, so it came up negative). He said it's not a given that you can just be referred to the hospital for a endoscopy. IMO there's no point knowing whether you have coeliacs or plain gluten intolerance cause the treatment/implications are no different. Anyway, my way forward was to go gluten free for 4-6 weeks then re-introduce gluten first then wheat (to rule out wheat allergy). I did that and it took just 3 days to be sick as a dog again - and that was a clear enough "diagnosis" for me. Coeliac society doesn't like those kinds of diagnosis but I'm not interested in belonging to their paid club!
It takes a good 3-6 months to get used to living gluten-free. You will need to source a good bin inn or similar so you can buy pre-mixed flours or individual flours such as potato, rice, and tapioca. There is heaps of info out there on the www but if you want more help, PM me your email and I'll chuck you some good info. (I'll do it by email cause I don't come on the forums much these days).
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MrsMojo
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Posted: 15 September 2009 at 2:29pm |
 busymum wrote:
IMO there's no point knowing whether you have coeliacs or plain gluten intolerance cause the treatment/implications are no different.
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If you are diagnosed with coeliacs you qualify for prescribed flours and pastas which makes them a lot cheaper (same kind as you can buy from the supermarket, only cheaper) you also may qualify for a disability benefit to help you pay for gluten free foods.
It also makes it easier to get a diagnosis for your kids if any of them start showing symptoms (it is hereditory) this can be quite important when it comes to getting daycare, school or holiday programmes to adhere to their diet.
Your specialist will also be able to keep an eye on you to ensure that the GF diet is working and can refer you to the dietician for assistance with your initial diet changes plus you can go back anytime dietary reqquirements change like during pregnancy and breastfeeding (this is all done for free through the public health service if you are a coeliac).
For all these reasons if either of my children start showing symptoms they will be properly tested.
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littlestar
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Posted: 16 September 2009 at 3:23pm |
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Have to say I agree with MrsMojo - having a diagnosis of coeliacs meant they didn't need to keep looking for other causes (coeliacs was just one on a list of things they were testing for). Also the impact gluten has on your body is different, CD damages/inflames your small intestine, whereas GI doesn't (which is what the biopsy tells you)
You can get stuff on prescription - its a PIA but is much cheaper (although the selection isn't anything to write home about)
The Coeliac society is a great source of info when you are first starting out - I'm no longer a member - but would recommend joining if you wanted a good source of information. (they may have a crap website but their mag is really good)
But each to their own and I don't mean any offense to anyone.
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Muz
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Posted: 01 November 2009 at 8:14pm |
busymum wrote:
IMO there's no point knowing whether you have coeliacs or plain gluten intolerance cause the treatment/implications are no different. |
There is an increased risk of cancer for coeliacs, and the gluten actually does damage to your intestines, but this does not happen with gluten intolerence. So some gluten is ok for intolerence but for coeliac it is not. For this reason we have just had our 5 1/2 yr old biopsied, she was asleep for the proceedure - it was very quick and painless for her. Now we wait for the results - all her blood tests were very high and she has the gene for coeliac too, now the process of getting blood tests done for the rest of the family.
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Babe
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Posted: 02 November 2009 at 9:44am |
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I'm with the 'don't go on the diet til you get tested' posters. We had Jake on a dairy-free diet coz he was too young for the actual tests when we realised there was a problem and the tests came back negative coz he'd been 'clean' for so long which was a PITA. Luckily we have a great doc who kept us on the child disability allowance.
Having a proper diagnosis really does help with finances coz it gets very expensive being on a restricted diet!
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Treen
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Posted: 02 November 2009 at 12:04pm |
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I was very sick for years and doctors just told me to drink more water and eat more fibre which made it worse. I put myself on a gluten free diet about 2 years ago and have never felt so good. If I want to do the tests, I obviously need to put myself back on a gluten diet for at least 2 weeks which is something I'm not prepared to do. Sitting on the toilet for hours on end and keeling over in pain in public places is certainly not something I miss!
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Muz
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Posted: 02 November 2009 at 7:59pm |
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Today myself and DD aged 7 1/2 had our blood tests done, so now just waiting for the results. I agree - once you go gluten free its so difficult to get tested to get a diagnosis.
Babe - do you get the CDA for dairy allergy? We know that DD 5 1/2 is gluten intolerant fromt the tests, do you think the CDA would apply for intolerence or coeliac? She has had terrible excema for 5 years due to the gluten (so the specialist says!)
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Coeliac Disease
