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Coeliac Disease

  • 15-08-2017 2:46pm
    #1
    Closed Accounts Posts: 643 ✭✭✭


    Hi 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 ... :):D :pac:
    Tagged:


Comments

  • Registered Users Posts: 166 ✭✭LaLa2004


    You need to be eating gluten for a while in order to get a result on the endoscopy.

    There is a closed Facebook page Coeliac Parents Ireland which is very active.

    The drugs payment scheme no longer caters for coeliacs. You need to keep all supermarket receipts for specifically manufactured gf items (bread, pasta, cereal) & claim tax relief, at the low rate, on the med 1 form.


  • Registered Users Posts: 1,393 ✭✭✭stooge


    the recommendation before biopsy is that you are eating Gluten for 4-6wks beforehand at least in order to get a reliable result. The Biopsy checks the degree of damage due to the Gluten so if you are not taking it the Biopsy is almost useless.

    As for GF foods, Supervalu are supposed to do some own brand GF bread and basic food but depending on which branch is nearest they may or may not have it. Dunne is ok for GF, Tesco have a greater selection. Aldi and Lidl have a small selection spreadh out all over the shop but generally lower priced. Asda in the north have a great low value selection. Still looking for a reliable and up to date app for Coeliacs.


  • Closed Accounts Posts: 643 ✭✭✭NewsMeQuick


    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.


  • Registered Users Posts: 166 ✭✭LaLa2004


    After the scope shows damage to the villi from gluten, you will go totally gf. It will take time for your system to adjust - months. I found my child had cramps & pain in the first months. It's like she got worse before she got better. Patience & perseverance are necessary!
    Cooking from scratch is best & cheaper.


  • Registered Users Posts: 147 ✭✭ginger_hammer


    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.


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  • Registered Users Posts: 176 ✭✭Powerfairy


    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.


  • Registered Users Posts: 166 ✭✭LaLa2004


    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.

    I am no doctor by my child's TTG levels are low because she is on s gluten-free diet, if she eats gluten or cross-contaminated foods, I expect the level of this antibody to go back up again.

    She will be a coeliac for life. I haven't heard of coeliac disease going into remission,


  • Registered Users Posts: 166 ✭✭LaLa2004


    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?

    Yes, my friend was diagnosed around this age. Her family were tested as a result of her diagnosis. Her mother was found to be coeliac also.

    Coeliac diseae and gluten-intolerance are 2 different things. I would read up on them before Monday. Hope you get sorted.


  • Registered Users Posts: 2,753 ✭✭✭g0g


    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.
    Yeah I was diagnosed at 32, and my sister (older) and mother (obviously older!) both since then too. I was (and assume still am) a "silent coeliac" - i.e. I ate as normal my whole life and never noticed a reaction. I had a bad bug at one stage (possibly not even coeliac related) and the doc recommended getting checked and I was tTG something like 122. Since then it's right down, but I still suspect I wouldn't react. Don't want to test it though after a few years on the new diet just in case!


  • Closed Accounts Posts: 643 ✭✭✭NewsMeQuick


    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?


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  • Registered Users Posts: 166 ✭✭LaLa2004


    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.

    Coeliac.org.uk does recommend continuing to eat gluten after the positive blood test and before the biopsy.

    https://www.coeliac.org.uk/coeliac-disease/getting-diagnosed/


  • Closed Accounts Posts: 643 ✭✭✭NewsMeQuick


    LaLa2004 wrote: »
    Coeliac.org.uk does recommend continuing to eat gluten after the positive blood test and before the biopsy.

    https://www.coeliac.org.uk/coeliac-disease/getting-diagnosed/

    Hi, I followed this up as my current GP failed to mention this and when I did meet her again, I asked about this and she kept dodging the question.

    I've met with a gastroenterologist and the head of the GI unit. They said I was right to continue to eat gluten temporarily and it allows me to get an "urgent endoscopy". Thank you for your insight.

    By the way, I pointed out to the GI and the head of the GI unit that all of the GPs I saw in Ireland in the past year said I had IBS and more than one basically inferred that I was simply looking for bigger problems where there was none. The GI and his boss saw my blood test results for coeliac disease and while they're proceding with an endoscopy, they've confirmed it really is coeliac disease. They were horified by the way GPs treated this on the path of diagnosis. I mentioned this to Coeliac Ireland - the more that this is mishandled by GPs the more undiagnosed sufferers continue to have their long-term health chipped-away at. Ireland in the 21st century ffs.


  • Registered Users Posts: 2,501 ✭✭✭irlirishkev


    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).


  • Moderators, Category Moderators, Politics Moderators, Recreation & Hobbies Moderators, Society & Culture Moderators Posts: 81,310 CMod ✭✭✭✭coffee_cake


    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.

    Yeah it is, it was only a few years ago i got the bloods.
    Never got the biopsy as the doc advised I'd have to eat it again for a couple months and couldn't face the pain!
    Anyway yeah you can show it late so worth going getting bloods done


  • Closed Accounts Posts: 643 ✭✭✭NewsMeQuick


    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.

    Hi, so did you get your test done? How did you get on? As you can see from a few stories, yep, 30 is common. I read somewhere that in Ireland men and women diagnosed tend to be much older, so by no means have we missed the boat at 30-ish.

    Just yesterday I got my 'urgent gastropathy' for 2 weeks time. I've overall been eating gluten and the head of the gastro. unit said I should give reliable results given what he asked.

    Has anyone been awake for that? Is it that unpleasant if you choose to be awake for it?


  • Registered Users Posts: 2,501 ✭✭✭irlirishkev


    Hi, so did you get your test done? How did you get on? As you can see from a few stories, yep, 30 is common. I read somewhere that in Ireland men and women diagnosed tend to be much older, so by no means have we missed the boat at 30-ish.

    Just yesterday I got my 'urgent gastropathy' for 2 weeks time. I've overall been eating gluten and the head of the gastro. unit said I should give reliable results given what he asked.

    Has anyone been awake for that? Is it that unpleasant if you choose to be awake for it?

    I've never been unconcious for it. You don't tend to be. You'll be asked if you want sedation or not. I've always gotten it, but next time I won't bother. For me it never really kicks in properly until after the procedure, and then I'm stuck sitting around til it wears off. You also need someone to come get you if you opt for sedation.

    The procedure itself isn't as bad as it sounds. And it doesn't last long. The important thing is to try and relax. Bit of a sore throat afterwards is all.


  • Closed Accounts Posts: 643 ✭✭✭NewsMeQuick


    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. :):D


  • Closed Accounts Posts: 1,080 ✭✭✭Don Kiddick


    Just a quick post...this thread doesn't look very active which surprises me....doc just rang me, my 9yo daughter is coeliac...any tips from parents who are in the same situation? ... think it's going to be a steep learning curve for me


  • Registered Users Posts: 1 GGilbert


    Hi there, I'm newly diagnosed with CD and delighted to find an Irish discussion board on it. Would be delighted to get any tips or advice so hopefully it stays active x


  • Registered Users Posts: 3,292 ✭✭✭0lddog


    GGilbert wrote: »
    Hi there, I'm newly diagnosed with CD and delighted to find an Irish discussion board on it. Would be delighted to get any tips or advice so hopefully it stays active x

    Coeliac.ie used to have an active open access discussion board. They closed it sometime ago.

    The old content can still be browsed from ( for example )

    https://www.coeliac.ie/webboards/viewforum.php?f=17

    There is probably a new discussion board restricted to CSI members.

    Why not join CSI, get their food list & see what wonders await in the restricted area ?


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  • Registered Users Posts: 15,310 ✭✭✭✭AMKC
    Ms


    Anyone here ever try gluten free wheat grain? I seen some biscuits in Super Valu and they had this in them. I would not chance it myself as Buckwheat and gluten free oats do not agree with me so I doubt this would either.

    Live long and Prosper

    Peace and long life.



  • Registered Users Posts: 724 ✭✭✭cobham


    Just posting here to check out if anyone still reading this.... It is only myself GF in household so am guilty of buying 'gluten free' products. I do get frustrated at not being aware of new products arriving in supermarket if buried amidst other items. At present my 'go to' bread is McCambridges soda bread and now the price is creeping up along with alot of other stuff. I used to have a breadmaker. make a biscuit from three ingrediants, peanut butter, egg and sugar and add in ginger as that is what I missed most with coffee when I first embarked on the diet. Occasionally I buy a pizza base in local deli = too big for one but I have the leftovers later. Aldi used have a great GF pizza ... and an apple pie, sadly long gone.



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