prescriptions for babies.

Nicki

I am afraid if I was a doctor's receptionist or worked in a pharmacy and a coeliac burst into tears because her prescription wasn't ready I'd roll my eyes too. I have no problem with these foods being available on prescription as they are expensive to buy every day, but the fact is that most of them are also available over the counter or in an emergency it is possible to live for a few days quite comfortably without these foods. What's wrong on an occasional basis of a breakfast of yoghurt and fruit, lunch of baked potato with tuna or cheese, and tea of chilling with rice. All healthy, normal food choices for many and completely gluten free.

Specialist gluten free products do make life easier (my dd was on a gluten free diet for medical reasons for 6 months so I've been there with the meal planning) but they aren't essential and its nit on the same scale as someone's chemotherapy drugs not being in on time for example!

Indie_Kid

Nicki wrote: »

I am afraid if I was a doctor's receptionist or worked in a pharmacy and a coeliac burst into tears because her prescription wasn't ready I'd roll my eyes too. I have no problem with these foods being available on prescription as they are expensive to buy every day, but the fact is that most of them are also available over the counter or in an emergency it is possible to live for a few days quite comfortably without these foods. What's wrong on an occasional basis of a breakfast of yoghurt and fruit, lunch of baked potato with tuna or cheese, and tea of chilling with rice. All healthy, normal food choices for many and completely gluten free.

Specialist gluten free products do make life easier (my dd was on a gluten free diet for medical reasons for 6 months so I've been there with the meal planning) but they aren't essential and its nit on the same scale as someone's chemotherapy drugs not being in on time for example!

And eat what they go out? If I go out, I have to bring my food with me. 99% of stuff of food in cafes I can't have.

faithcecilia

sh1305 wrote: »

And eat what they go out? If I go out, I have to bring my food with me. 99% of stuff of food in cafes I can't have.

It is perfectly possible to eat out if you choose carefully and if necessary ask questions. Jacket and cheese/tuna/etc is gluten free.

I cannot have dairy, which is quite easy. But I am severely allergic to celery and avoiding that can be an absolute nightmare - its in most stock, sauces, soups, curry, chilli, etc. I just have to quiz staff carefully, explaining the food could kill me in minutes if it does contain celery. It can result in very limited choices if I am eating out at short notice, but if I am going on a planned meal out I just call the restaurant ahead and explain my requirements, choosing places sensibly.

Indie_Kid

faithcecilia wrote: »

It is perfectly possible to eat out if you choose carefully and if necessary ask questions. Jacket and cheese/tuna/etc is gluten free.

Not everywhere sells jacket potato.

faithcecilia

sh1305 wrote: »

Not everywhere sells jacket potato.

I'm sorry, i didnt have time to list every possible food available from every single eatery. It was just an example, likewise, omlette, salad,most soups etc, etc.

Nicki

sh1305 wrote: »

And eat what they go out? If I go out, I have to bring my food with me. 99% of stuff of food in cafes I can't have.

But the same thing applies even if she has her prescription food stuff at all times surely? I don't see how her script being late would impact at all either positively or negatively on her ability to eat in restaurants.

coolcait

Nicki wrote: »

I am afraid if I was a doctor's receptionist or worked in a pharmacy and a coeliac burst into tears because her prescription wasn't ready I'd roll my eyes too. I have no problem with these foods being available on prescription as they are expensive to buy every day, but the fact is that most of them are also available over the counter or in an emergency it is possible to live for a few days quite comfortably without these foods. What's wrong on an occasional basis of a breakfast of yoghurt and fruit, lunch of baked potato with tuna or cheese, and tea of chilling with rice. All healthy, normal food choices for many and completely gluten free.

Specialist gluten free products do make life easier (my dd was on a gluten free diet for medical reasons for 6 months so I've been there with the meal planning) but they aren't essential and its nit on the same scale as someone's chemotherapy drugs not being in on time for example!

Of course, as I've already stated, I'm not talking about 'a coeliac'. I'm not talking about foods which are available over the counter in the pharmacy, they appear to be ordered in. They're not available in supermarkets.

Of your suggested replacement meals, my friend can't have yoghurt; very limited amounts of potato are allowed; no tuna, no cheese, no chilli, no rice.

I obviously didn't explain the 'close to tears' part of it properly. It's tears of frustration over her dealings with the so-called professionals who clearly have no idea whatsoever about her condition, and have even less will to try to understand about it. They're almost certainly confusing it with coeliac disease, or lumping it together with coeliac disease or similar, and taking the "well she can just eat something else that's gluten-free" attitude. IKf only it were that simple.

As for your final remark, she knows she's lucky. Had she been born just a few years earlier, her condition wouldn't have been diagnosed, she wouldn't have been put onto the very restricted diet she followed throughout childhood, and she would have suffered irreversible brain damage within the first year of so of her life. If the diet isn't followed when a woman is preparing to conceive, and throughout the pregnancy, the developing baby can be damaged, even if it hasn't inherited the condition. Most experts recommend that the diet is followed for life, for better physical and mental health.

Most people simply do not understand just how restricted the diet is, or the importance of sticking to it rigidly at certain times in life. They'll offer well-meaning suggestions for 'nice veggie meals', containing nuts and/or pulses (no nuts or pulses allowed). That's fair enough - it's not a common condition, even though every baby born in this country is tested for it a few days after birth.

It does irk me, though, when people in the health industry, such as receptionists and pharmacists, who are dealing with this unusual case on a regular basis seem to have so little understanding of it.

And, having seen the views expressed in this discussion, I now also feel very sorry for those who need to follow a gluten-free diet, and face that kind of glib dismissal of their needs.

rachbc

coolcait wrote: »

Of course, as I've already stated, I'm not talking about 'a coeliac'. I'm not talking about foods which are available over the counter in the pharmacy, they appear to be ordered in. They're not available in supermarkets.

Of your suggested replacement meals, my friend can't have yoghurt; very limited amounts of potato are allowed; no tuna, no cheese, no chilli, no rice.

I obviously didn't explain the 'close to tears' part of it properly. It's tears of frustration over her dealings with the so-called professionals who clearly have no idea whatsoever about her condition, and have even less will to try to understand about it. They're almost certainly confusing it with coeliac disease, or lumping it together with coeliac disease or similar, and taking the "well she can just eat something else that's gluten-free" attitude. IKf only it were that simple.

As for your final remark, she knows she's lucky. Had she been born just a few years earlier, her condition wouldn't have been diagnosed, she wouldn't have been put onto the very restricted diet she followed throughout childhood, and she would have suffered irreversible brain damage within the first year of so of her life. If the diet isn't followed when a woman is preparing to conceive, and throughout the pregnancy, the developing baby can be damaged, even if it hasn't inherited the condition. Most experts recommend that the diet is followed for life, for better physical and mental health.

Most people simply do not understand just how restricted the diet is, or the importance of sticking to it rigidly at certain times in life. They'll offer well-meaning suggestions for 'nice veggie meals', containing nuts and/or pulses (no nuts or pulses allowed). That's fair enough - it's not a common condition, even though every baby born in this country is tested for it a few days after birth.

It does irk me, though, when people in the health industry, such as receptionists and pharmacists, who are dealing with this unusual case on a regular basis seem to have so little understanding of it.

And, having seen the views expressed in this discussion, I now also feel very sorry for those who need to follow a gluten-free diet, and face that kind of glib dismissal of their needs.

Sounds like PKU - I know of a family whose child has this and all his food is on prescription - and very rightly so. Such a shame that your friend has to experience the lack of understanding she does. I think many people assume, often wrongly, that because conditions are related to food its just faddiness or somesuch. You might excuse such a reaction from people on the street, but not from so called professionals

Indie_Kid

MrsE wrote: »

Regular Imodium has an active ingredient. You can but the look-a-like version in Tesco for less than £1 (same active ingredient).

Gaviscon, DH gets the pharmacy stuff (you use less) from Lloyd's - often on offer.

We pay for ours......

If my doctor prescribes it (as was the case last week due to acid issues) should I pay for it then - even though I'm exempt from prescription charges?

coolcait

rachbc wrote: »

Sounds like PKU - I know of a family whose child has this and all his food is on prescription - and very rightly so. Such a shame that your friend has to experience the lack of understanding she does. I think many people assume, often wrongly, that because conditions are related to food its just faddiness or somesuch. You might excuse such a reaction from people on the street, but not from so called professionals

You're exactly right, and I agree with everything you say. I don't think the word 'diet' helps either, as it has come to be so closely associated with weight loss, 'being skinny', 'fad diets' etc.

It is hard for people to fully understand just how restricted the diet is. Even though I've tried to learn as much as I can about it, I still put my foot in it all the time - like my recent conversation about a brilliant recipe that I'd found, which she might be able to adapt. Not really - half of the ingredients weren't suitable, and couldn't easily be replaced. All she could really have used was the salsa!

She rarely eats out, for the same reason. I think she gave up after the night when, having ordered a salad, and explained that it could only contain salad vegetables - no meat, no beans, no dressings, just salad - she was presented with a beautiful salad - liberally covered in grated cheese...

I wish the young lad who has PKU, and his family, all the best. And I hope that, as he grows up, he finds that there's a wider understanding of the reasons why he follows the diet he does. I doubt it will be of much comfort to him, but at least he will never have to face dealing with the even more restricted diet that has to be followed by women TTC and when they're pregnant!