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Dublin: 12 °C Sunday 26 May, 2013

Coeliac Society “seeking clarification” on product allowance cuts

The society says it was not contacted directly by the HSE about the changes, which would affect coeliacs under certain State schemes.

Gluten-free foods
Gluten-free foods
Image: JIM MCKNIGHT/AP/Press Association Images

THE COELIAC SOCIETY has said it is “seeking clarification” regarding the cuts to the gluten-free product allowance that were publicised yesterday by the Irish Pharmacy Union.

The HSE said that gluten-free products will no longer be covered under State schemes such as the medical card, drug repayment schemes and long-term illness schemes.

It said that it is estimated that the decision to remove gluten-free products from the list will result in savings of around €3.6m on an annual basis.

The HSE commented:

Many European countries do not reimburse for gluten-free foods. Such products are considerably cheaper in a supermarket. For Medical Card holders, a Social Welfare Allowance is available. For non Medical Card holders, monies spent are taken into account for tax purposes.

Today, the Coeliac Society said that it had not been contacted directly by the HSE about these cuts.

We are working with the INDI (Irish Nutrition and Dietetic Institute) to strongly highlight the adverse effects of these possible cuts to the relevant bodies and as soon as we have more information we will be making a statement and keeping members updated in this regard.

One in every 100 people in Ireland suffer from coeliac disease, meaning the country has one of the highest incidences of the disease in the world.

The IPU said that the news of the cuts came with notice of the removal of three drugs from the list of those which can be reimbursed under certain State schemes. These are:

  • Glucosamine – which deals with wear and tear of the joints in osteoarthritis patients;
  • Omega 3 triglycerides – which are beneficial win conjunction with cholesterol-lowering drugs, and are often prescribed by cardiac doctors;
  • Orlistat – known as Xenical  here – a weight-reduction drug available on prescription.

A HSE spokesperson said that the cuts would total €6 million, but she did not know exactly what percentage of this the gluten-free products represented.

The cut came into effect last Friday (September 1) and the notice of the cut was circulated at midday yesterday (September 3).

Read: Gluten-free product allowance cut for coeliacs>

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Comments (60 Comments)

  • I have a severe gluten intolerance, and I’ve been very ill for a number of years. I can barely afford to buy gluten-free food, it’s so expensive. This Government has failed it’s citizens. Between HSE cuts, these cuts, and cuts elsewhere – the country is going down the drain. I hate to be negative all the time, but I’d be gone on the first plane out of here if I was not so ill.

    Rob: My gluten intolerance is not an ‘allergy’. If I consumed even a crumb of a product that contained gluten, I would be bedbound for days with lethargy, stomach problems and muscle flares. Lot’s of foods are not OK for people with gluten intolerances.

    When I go shopping, I have to check every single label of every product before I buy it. Even at that we have the problem now with mislabelling – as the current codex standard is 20ppm, but some producers are still labelling their food as gluten-free, when in reality it isn’t.

    Shopping is a chore – living with gluten intolerance is a chore. And it’s the least of my medical problems!

    :(

    Reply
  • Joey i find your ignorance astounding. I would refrain from making any comments on the subject as you have no idea what you are talking about. There is a lot more to Coeliac disease, seems like you have made up your own version as to what it is, next thing you will be advising my consultant!!. really im embarrassed for you.your comments are idiotic and i pity you that you seem to have such a complete lack of empathy. It is not just adults that suffer with this, there are babies who are born with this condition and as it is hereditary can affect entire families making the cost of living huge.
    quite obviously you don’t suffer from this illness yourself..the emotionally devoid remarks are enough to tell us that. your ‘it’s okay because it doesn’t affect me’ attitude just emphasises your small mindedness!..you need to educate yourself and learn some compassion..

    Reply
    • Joey 04/09/12 #

      Jessica, I can’t believe you just came out with the remark about babies. “Will someone please think of the children”?!

      It’s food that has been removed from the State schemes. Food is not a medicine, especially food that is available in supermarkets which everyone else has to pay for. Biscuits, pizzas, bread – what a joke.

      Next we will have obese people claiming that they should get diet coke, low fat milk, weight watchers meals on their medical card. Or eczema sufferers will want their want non-bio washing powder from their doctor.

      Get real and stop expecting the State to pay for everything.

      Reply
  • @William Grogan – Porridge is Not ok for coeliacs! All oats are contaminated by gluten. Some coeliacs can tolerate a small amount of specially produced GF oats, at about 5+ times the cost of normal oats. Some coeliacs cannot even tolerate these GF oats without an immune reaction.

    There are a total of 4 cereals that are not gluten free – wheat, barley, rye and oats.

    To b honest I doubt u really are a coeliac if u can announce that about porridge being ok. :(

    Reply
  • Blog with scans of HSE letter and list of GF products which will no longer be available:

    http://glutenfreephotos.blogspot.ie/2012/09/hse-restrictions-for-coeliacs-important.html

    A bit dodgy that the letter runs on about Glucosamine and then just lumps a whole other bunch of other stuff at the end. I would have thought that the clinical benefits of avoiding gluten for coeliacs would be pretty clear!

    Reply
  • Very short sighted move…
    More coeliacs calling in sick and clogging up our health system for something that is realivatively cheap to avoid.

    This makes preventive care a joke.

    There is 40,000 coeliacs in Ireland. How many days could they call in sick over this because with the best will in the world without the the proper information they will accidentally end up eating gluten.

    Reply
  • The actions of the HSE are very underhanded but not surprising. The society is a charity representing coeliacs in Ireland, yet there was no notice or consultation of new policy impact!
    To just wipe an existing policy without due process and consultation with those being impacted speaks volumes of this government. Who’s next? Asthmatics?
    Gluten free food is expensive (especially from the pharmacist) it’s our medicine though. For some people, not being able to get this on prescription or medical cards is going to have a negative impact on their quality of life.
    I’m really disappointed on this policy move.

    Reply
  • Some comments on this are hilarious, not mentioning names. Put it this way, there are 2 non coeliacs in my house and then me. Weekly shopping consists of buying normal bread( 80c) for them, normal cereal and so on. Then I need t buy gluten free bread for me(3.59) for 6 slices and cereal nearly 5 euro. ps I realise aldi do gf bread for 1.99 but non coeliacs need to buy a loaf of gluten free bread and try it cos it ain’t like fresh bread you can get daily, it is disgusting and needs to be refreshed before you can eat it.

    Reply
    • Joey 04/09/12 #

      My weekly shop for bread, cereal, etc costs €0. And it’s not becaues I’m a sponge expecting the government to pay for it. It’s because there are alternative foods out there.

      Reply
    • i see CalChew with D has been taken off too, another product some coeliac’s need and whats a joke . some pen pusher again not seeing the big picture , this product is €21 to buy in chemist yet the reimbursement cost is €5.49 whose making all the money?

      Reply
  • Ditto my dear. By the way, ignorance is commenting on a disease you obviously know nothing about :-).

    Reply
  • Where do you get alternative food for ?0. Would love to know. Coeliacs would not complain as much if our food was same price as your food, but it’s not. I’d give anything not to be coeliac but not gonna happen. So what alternative s do you suggest there?? Do enlighten me

    Reply
    • Joey 04/09/12 #

      Meats, eggs, vegetables, fruit, fish, etc. You do know that farming is only around 10,000 years old. How do you think humans survived before then? Continue buying your gluten-free products like everyone else in the country buys their own food. However, maybe you can use this as an opportunity to enlighten yourself on the huge amount of dietary alternatives out there.

      Reply
  • exactly Emer..i never was able to avail of it myself but there are many people who will be hugely affected by these cits.. as i mentioned in my above comment that there are often several family members suffering with C.D very hard to manage

    Reply
  • @Joey Not every coeliac was entitled to this scheme so don’t be thinking we’re all “sponging” off the government. I was never entitled to it so these cuts aren’t going to make a difference to me but for others it is. Hang around with a coeliac for a week and live as they do. . so how long you last.

    Reply
    • @ I actually before Dunnes Stores gluten free range to be honest.

      Says that, doesn’t mean they stick to their word. Told me since I was under the age if 25 I wasn’t entitled to it as my parents are apparently still supposed to provide for me.

      Now who’s chatting BS.?! If you don’t know anything about it, then keep your nose out if it.

      Reply
    • Joey is correct on this point. Everybody is entitled to a DPS Card once they have a PPS Number, irrespective of age. Lots of people got supplies of GF food on DPS system and claim tax back on it too.

      Reply
    • @ Brian Well that s what the hse told me. Just saying.

      Reply
  • Right I’m sick of this ! For all those self righteous idiots who think that its SOOOOOO easy to change their diet and not eat gluten, go on and try it, I dare you, next time your out shopping make sure you look at every tin every packet, even salads and tell me how bloody easy it is.

    Oh sure change your diet its easy, well go on do it, join the rank of the Coeliac brigade and walk a mile in our shoes, some of the post on here are shocking in their gross ignorance.

    Word of warning to those who post negative comments about CD, I wll answer any objections and trust me you dont wont me as an enemy

    Reply
  • @William Grogan . I am not exaggerating.
    No porridge oats are gluten free and suitable for coeliacs. There are a few specially-grown and milled GF oats but these are declared GF and most cost 5-6 euro for a 500g box.
    May I direct you to the information from the Irish Coeliac Society here http://coeliac.ie/webboards/viewtopic.php?f=12&t=2864

    Reply
  • You miss the point altogether there. Alternative s to gf bread , pasta, cereals etc. Obviously what you mentioned is bought regularly. Put your thinking cap on and get back to me.

    Reply
    • Joey 04/09/12 #

      Fruit, vegetables, meat, fish, poultry, eggs.

      Look up “food” on google. You’ll be surprised that you can actually live without processed gluten free chocolate.

      Reply
  • joey try eating a totally free diet and come back and do report , that means no beers at weekend (even those there are gf beers ) at €4.30 for a 359ml btl …. NO DRAFT you wont be getting drunk anytime soon.
    I suppose you could if you drank spirits all night but the spirit has to be GF, so the likes grey goose and wild swan out of the question
    no takeaway ( no chips, burgers, deep fried sausages etc, you get at the chippy and only pizza you want to travel a great distance to the only pizza restaurant that serves GF pizza.

    and i cud go on and on and on

    Reply
  • Oh yeah, in relation to your last comment about the government buying my food if you actually read my comment there is nothing mentioned about that so your point is nothing.

    Reply
  • well said David..

    Reply
  • *sorry that was *cuts*

    Reply
  • Rob 04/09/12 #

    ok apologies in advance if i’m oversimplfying here!

    but are Coeliacs not people who have allergies? i wasnt aware at all that they are given allowances to buy food. surely they can just to to a shop? lots of foods are ok for coelics to eat i thought?

    what exactly is it that they need from a chemist?

    Reply
    • Aoife Barry 04/09/12 #

      Hi Rob, coeliac disease isn’t an allergy – it’s a disease where eating (and sometimes, using) anything with gluten (a protein in certain grains), triggers an immune reaction in the body and can make sufferers feel very ill. Gluten is in wheat, barley, rye, spelt and their derivatives – it’s often used where you wouldn’t expect, like mixed in with spices, in gravies, in soy sauce, etc.

      The effects of eating a few grains of gluten-containing food can vary according to the person, but internally it affects the villi in the small intestine, for example, which in turn affects how nutrients are absorbed. People can display all sorts of reactions to gluten.

      The only treatment – yes, only – for coeliac disease is not eating anything with gluten in it. So there are special processed foods that some coeliacs eat, such as bread, pasta, cereal, to replace the other gluten-containing products they used to eat. These products are often more expensive and have to be packaged differently so that no cross-contamination can occur.

      People eat these alongside the other naturally gluten-free parts of their diet (fruit, veg, meat/fish if they choose, nuts, pulses etc)

      Some coeliac disease sufferers are on medical cards and other schemes where they can get such products through their card/scheme at their chemist’s.

      People with CD can also claim tax back from the gluten-free products they buy – this is a medical condition after all and if they did not have it they would not have to spend the extra money.

      http://www.coeliac.ie is a great site for more information on CD.

      Hope this was of help.

      Reply
    • having been a coeliac over 40 yrs i have seen huge changes in product creation and the bottom line is always profit .
      Example of gluten free diet ( toast for breaky and sandwich for lunch weekly )
      bread GF apporx 8 slices is €1.99 (not the usual 19 slices in a slice pan) so 4 sandwiches later your buying another loaf just to do the toast and no lunch on day five, six or seven… that’s now approx €4 spent on bread a week, and that’s only if aldi have it in stock otherwise your paying €8 a week for bread in dunnes or tesco.
      that’s €206 to €312 on bread annually

      Example of non GF diet ( toast for breaky and sandwich for lunch weekly)
      Bread 19 slices is .98cent so that covers 7 breakfasts and 6 lunches before you have to spend another euro.
      that’s €51 to €102 annually

      and don’t get me started on either of these sample diets about nutrition

      a €200 euro difference annually on one product , one of the so called stable ones so multiply that with approx 50% of all the products in the cupboard at home.

      an expensive life long disease

      Reply
    • Rob 04/09/12 #

      thanks Aoife. i guess even with your explanation I would still have to admit to being surprised that coeliac sufferers have been so well looked after to date by the state. I would never have realised this was necessary as I do know some coeliacs who seem to be able to function quite normally by just being picky with what they eat – similar to veggies!
      i guess it depends what our rule of thumb is for a disability. surely this is towards the nanny state end of the spectrum??

      Reply
    • @Sherbet Bell, I just checked the Aldi bread made by Lynch`s today and although it clearly says Gluten Free, the first ingredient is wheat starch. I have checked online and in some countries, wheat starch is acceptable but most people are saying that it`s not. I`m afraid to chance giving it to my daughter, have you had any symptoms from it?

      Reply
    • @ mariead cheak with the 2012 food list from the coeliac society, they send out update on products to it members, http://www.coeliac.ie, check under the section food or codex standard ” A product labelled ‘gluten-free’ must contain less than 20mg gluten/kg (< 20 parts per million(ppm)). This level is suitable for the most sensitive of coeliacs.

      the coeliac society staff do a great job and a huge amount of work so too do all the volunteers over the country

      Reply
    • Aoife forgot to mention that if a person with CD eat small amounts of gluten too often they not only feel ill, but after a time they can develop cancer in the intestine :-( God forbid it happens with any of us!!!

      Reply
  • Joey 04/09/12 #

    Good to see these products being cut – loaves of bread, pizza, biscuits. And they’re all available in supermarkets.

    The rest of us have to go out and buy our food. We don’t get it on medical card or through a government drug scheme. Good to see the HSE finally starting to cut out the nonsense.

    And who is forcing these people to eat breads, pastas, etc. Just eat food with no potential gluten in them – it’s not that hard.

    Reply
    • Wow it’s not that hard! Are you serious?? It’s near impossible to eat out. Most places don’t have a clue and many assume it’s just a silly fad diet. The only choice many people have is to bring gluten free sandwiches. I presume you don’t realise what foods have gluten in them. Imagine a life with no bread, cakes, pasta, pizza, crisps, sauces etc! This is why we need gluten free foods. These alternatives are very expensive, I have never got them on prescription but I can understand that people on low incomes would find it hard to afford these foods.

      Reply
    • Joey 04/09/12 #

      Yes Niamh, I’m aware what foods contain gluten. Im not even a coeliac and yet find it easy to avoid.

      You find it hard when you’re “eating out”. Should the HSE cover your restaurant bills now also?

      People on low incomes have social welfare and numerous other allowances. The State shouldn’t pay for their food also.

      Reply
    • How would you know if you are finding it easy to avoid? It is not written on most foods if they are gluten free or not. The only way to know if they have been cross-contaminated with gluten is trial and error. The agony that you would suffer if you ate the wrong thing would teach you what to avoid! Also the long term side-effects like cancer and infertility are very dangerous. As for your comment about the govt paying for my restaurant bills, I said that I bring sandwiches as opposed to eating out, e.g. it is not possible to get a roll from spar for lunch. I merely meant this as an example of where we need to use these specific products.

      Reply
    • I hate people with your attitude. you have absolutely no idea. as the saying goes walk in their shoes. I have 3 people who are celiac. and whom suffer severely if even have contaminated food we are talking a 4 year old hospitalised due to sickness and dehydration. We are a family on an exceptionally low income. We have no problem if they would bring these gluten free products down to the same price as your so called food you buy from your local supermarkets. This are not luxury items we are talking basic bread and flour at €6.00 a go when ordinary flour is €2 bread rolls €4 for 6 when you can buy 6 for €2. Please do not make judgements on this you know absolutely nothing about please close your narrow minded mouth.

      Reply
    • Joey take your head out of that dark smelly place and try to listen to what people are telling you and stop being a reactionary, its kinda sad

      Reply
  • My wife has CD and the idea that they should get subsidised or free food is 100% insane. You don’t need flour… Great decision.

    Reply
  • Joey 04/09/12 #

    The picture on this article says it all – gluten free products readily available in Tesco, yet people moaning that the government won’t pay for their food. What next – get washing powder or petrol on your medical card. With the rotten sense of entitlement prevalent in this country, the scale of sheer waste is of little wonder.

    Reply
  • Joey 04/09/12 #

    Ah Jessica, well done. Name-calling and abuse. Now that’s how you debate.

    Reply

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