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Coeliac Disease
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15-08-2017 3:46pm#1Hi all,
I found some old threads 7/8 years old in the diet section and I've no doubt that we've come a long way from then so new thread.
So after 10 months of elusive symptoms, a blood test was positive for coeliac disease. LGA - positive, TTG - 90.0.
While the doctor giving the results was relatively satisfied that it's coeliac disease, while waiting for the endoscopy, the Coeliac Soc. Ire. seems to advise holding off for the biopsy.
What kind of TTG scores did everyone else get? Did anyone get a positive TTG score but a negative biopsy?
Having read many posts from sufferers on here, I see varying reactions to cross-contaminated foods and how much you have to adhere to strictly GF-diets. I've been on a GF-diet for 3 weeks now, on the whole my stomach has been more settled but I think there has been 1-2 cases of cross-contamination each week. This week it was peanut butter, with a very slim ingedients list, on GF bread, I think it was the peanut butter that has caused trouble.
Can anyone recommend reliable scanner apps? I'm trying a few but they seem to be mostly UK-orientated and many products here don't come up so I can't tell if I can eat them.
What about supermarkets? I'm trying hard to 'fit in' with my favourite local, big supermarket. Tesco does have many own-brand GF products which are far cheaper than the pricey brand names. I've no trouble buying brand names normally but GF prices can be ridiculous. On that note, on my next GP appointment I will talk about that Drugs Payment Scheme for GP-prescriped GF-diet assistance. What supermarkets do you find best? Does anyone shop online in one of those stores like Nourish etc.? Holland & Barrett seems to do gimmicky side-stuff and not a proper grocery shop IMO.
Also...I'm vegetarian. A vegetarian ceoliac. I do this because I just thought I had too many dietary choices before ...
:pac: 1
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Hey thanks for the info. all
Yeah I read about that 6-week thing. At least one meal per day for 6 weeks. The thing is, nobody has told me so far to do that.
Can I ask how quickly everyone got their biopsy? Everyone got a biopsy rather than relying entirely on the blood results I guess?
For me, the info./advice given recently has been as follows:
Doc 1: who ordered my blood test: goes on holidays
Doc 2: 'you tested positive, you have it, a standard biopsy follows', no medical advice otherwise
Coeliac Ire: 'wait for the biopsy, anything else? Bye'
Doc 1: back from holidays,' don't go gluten-free yet because it's so expensive and blood results aren't always completely accurate. You 99.9% have it but because the food is so expensive, eat normally'.
I find that very strange; my normal doc. highlighted the costs of GF-eating, nothing about the requirments for the biopsy which I asked very explicitly and she kept diving away from direct questions, like being treated by a shady lawyer.. So if the biopsy confirms, I'm supposed to eat something that's likely harmful for my body, as she highlights, not to ensure a correct/realistic result from the endoscopy, but because GF-food is so expensive?
I've eaten GF for the past 3 weeks since I got the results and some days my stomach has been very calm, but other days not really. I find that odd because I really doubt cross-contamination given the fresh meals I was cooking.0 -
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ginger_hammer wrote: »I've had coeliac (relatively mild) for about 10 years and also have ulcerative colitis - however after years of blood tests and eating G/F food my last test the blood markers for coeliac have disappeared and the doctor said that it is in remission - I didn't even know that coeliac could go into remission! So I've been experiencing normal food for first time in a long time (although taking it easy). Only reason I can think of is that I'm on immune-suppressants for UC that maybe affected coeliac.
Congratulations! That's wonderful news! I had no idea that was possible either. I kind of hope it wasn't the immune-suppressants as I hope the body can adjust. I was just reading last week about gene therapy for cancer in the US has just got approval, they take out some of your white blood cells, re-program them to attack cancer only and the success rate is very high. The implications for this type of approach of course has potential across all of human health and I'm convinced we'll see progress in our lifetime. I'm delighted for you!Powerfairy wrote: »Hi sorry for just hijacking this thread here. But is it possible to only discover you are coeliac at the age of 30? Or can you develop it in later life? I am having trouble with my digestion and I think it might be related to wheat. i feel really unwell with it. I have a doctors appointment Monday. Hopefully they point me in the right direction.
Yes. I'm 30 and just got diagnosed!
Separately, I'm really surprised that the strongest advice that's coming to me about continuing to eat gluten to ensure accurate results in a forthcoming endoscopy are coming from here, and not my GP or explicitly from Coeliac Ire/UK.
I have an appointment with a gastro doctor in 2 weeks which was arranged long before I had these results, and I'll be passing on all the info. I have to wait and see if she/he concurs that an endoscopy is the next best step. I did find some gastro doctors websites which believed that high enough blood tests wouldn't warrant an endoscopy but we'll see.
Something else I thought of was that my previous GP who was based at my previous job did a stool and urine test, one of which was to detect issues with gluten which came back negative. Why that negative but blood yes. Who knows.
Also, has anyone else signed up to Coeliac UK? They are far older, have a lot more research and resources, a great barcode scanner app etc. If I understand correctly Coeliac Ire. seems to think you shouldn't eat anything that isn't specified in that book they send out, but the UK counterpart seems to think if that scanner app they have says no gluten ingredients it's probably OK. Any thoughts?0 -
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NewsMeQuick wrote: »Congratulations! That's wonderful news! I had no idea that was possible either. I kind of hope it wasn't the immune-suppressants as I hope the body can adjust. I was just reading last week about gene therapy for cancer in the US has just got approval, they take out some of your white blood cells, re-program them to attack cancer only and the success rate is very high. The implications for this type of approach of course has potential across all of human health and I'm convinced we'll see progress in our lifetime. I'm delighted for you!
Yes. I'm 30 and just got diagnosed!
Separately, I'm really surprised that the strongest advice that's coming to me about continuing to eat gluten to ensure accurate results in a forthcoming endoscopy are coming from here, and not my GP or explicitly from Coeliac Ire/UK.
I have an appointment with a gastro doctor in 2 weeks which was arranged long before I had these results, and I'll be passing on all the info. I have to wait and see if she/he concurs that an endoscopy is the next best step. I did find some gastro doctors websites which believed that high enough blood tests wouldn't warrant an endoscopy but we'll see.
Something else I thought of was that my previous GP who was based at my previous job did a stool and urine test, one of which was to detect issues with gluten which came back negative. Why that negative but blood yes. Who knows.
Also, has anyone else signed up to Coeliac UK? They are far older, have a lot more research and resources, a great barcode scanner app etc. If I understand correctly Coeliac Ire. seems to think you shouldn't eat anything that isn't specified in that book they send out, but the UK counterpart seems to think if that scanner app they have says no gluten ingredients it's probably OK. Any thoughts?
I was 36 when diagnosed.
To be frank, after the first while, and when the panic and frustration settles down, the diet is a piece of cake (pardon the pun).
Stay away from 'free from' isles as much as you can. Granted you'll probably need to pick up a couple of items every now and then, but you'll learn over time how to eat/cook safely without having to resort to overpriced 'gluten free' food.
I'd also recommend changing your whole kitchen to a gluten free environment. It's not as difficult as it sounds.
Re the UK app and list - it's going to be different because of different processing in the UK to Ireland, so some items will be fine, others, not so much, but you won't really know for sure - so best stick to the CSI list (also something I only need to use once in a blue moon now).0 -
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So I had my gastroscopy and here's how it went if anyone needs to get it done.
The leaflet says if you plan to get sedated, bring your pyjamas. I did but didn't need them. I got this done in the Mater hospital in Dublin, and the staff were all very attentive and friendly.
I was lying on a bed for 10-15 minutes with a drip, a nurse asked me a few short medical questions then I was brought into the procedure room. I had a brief chat with the nurse and the doctor. The doctor also recommended the UK Celiac Society because of their scanner app which helps you figure out food quickly. She didn't know that Kelloggs Corn Flakes has a malt barley flavouring which Celiac UK says makes it unsafe for us. Tesco own brand does not have this and is safe.
The nurse said I would be awake despite the sedation but on something 'like valium'. I got a throat spray, leaned on my left side as they instructed and the next thing I knew, I woke up in the recovery room 90 minutes later. The procedure is supposed to be 4-5 minutes, or an extra 5 minutes or so if you need a biopsy, which I did. Most people I saw that day got sedated. So much for not sleeping!
My throat felt a tiny bit like I swallowed something too big without chewing properly but not painful at all. I felt a bit tired and slow to start like a bear waking up after winter. They say you must have someone to collect you if you get sedated. You cannot work that day, cook, drive etc. They gave me tea and toast as soon as I woke up but later realised it was gluten bread lol. The doctor said I would be going gluten-free now.
They discussed my results after, they said inside the colour was a very healthy pink, and from what I saw of the pictures, there was no obvious damage, I've seen some example pictures before and it can look like a war zone but not in my case. They did discover that I have what's called a Hiatus Hernia which means a part of my stomach has and odd shape, but I have no symtoms and they said is harmless in my case. I've an appointment in 6 weeks to discuss my biopsy results.
Going back to my blood test results in the summer, I got a TTG score of 90.0. The doctor said that the results themselves don't tell how sensitive a person will be to gluten, only it's a benchmark of your progress when you go gluten-free. She wasn't overly concerned about cross-contamination. She said she expected that I would have a 'medium sensitivity' in my case.
Hope this helps. Over-thinkers like me might like the detail lol. 1 -
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