Please read, Hosp appointment after diagnosis by Tilly
The most gentle, supportive, caring understanding uplifting responses I have ever read here.
Great examples of the best of this site
Great post Tilly
Last thing you want on top of everything else you have going on is coeliac! But yes you can go gf if you have had a 'camera down' because they will take a biopsy then and confirm your if villi are flattened, therefore not absorbing food nutrients. As far as i can assertain if you havent had this as a confirming diagnosis you are unlikely to get prescription foods but that could be area dependant anyway.
Have you had bloods done for b12? You mention the possibility of PA.
Many thanks for your constructive information and support. Just been to GP to bring her up to date on all happenings as she has been on hols.
She told me i was anti body negative for Coeliacs. She encouraged me to go gf on Saturday as ct Friday. When I asked if neg result ruled out prescription for gf products she said, brain fog, words to the effect that
NHS STOPPING PRESCRIPTION GF FOODS AS WIDELY AVAILABLE NOW AND nearly SAME PRICE AS ORDINARY FOODS IN SUPERMARKETS.
THAT WAS A BIT OF A BOMBSHELL. WHAT IF YOU CANT AFFORD NEARLY SAME PRICE AS ORDINARY FOOD. Have you heard this? Made me wonder of that food company cutting their losses if they have lost NHS contract so letting stocks run out rather than being left with stock wasted. I know Im a cynic but this sort of thing happens all the time with contracts and the govt before things get announced.
Anyway, she did say biopsy in Duodenum gold standard as you said, but what do you think? Is it worth still eating non GF if it is making me ill? Should I wait? Should I just go for it? Chasing my tail a bit. Do you think CT as useful? I dont believe anything sinister going on, no usual symptoms and had the poo test through post which was ok recently too.
Yes I had B12 done, sneaked it onto regular full blood test. Came back 246 which no amount of conversation and knowledge would budge my now dumped Rheumy, (Lupus) from saying it was ok.😡. Just looking at all possibilities for ferritin low, which no one investigating despite Lupus specialist picking it up and requesting investigation. just told Heam is 4.6, should start at 10 she said so not rock bottom yet! Can you believe these people? And shes a good GP.
Id be so grateful on your take on this with your vast experience and great communication skills.
Thanks for reading this.
If you can get it on script do so for as long as possible!
If gf bread was £1 same as normal bread and the same size and taste and consistancy i probably would pay for it too!!!!!! Lol
Some areas have cut it i know. Look at the coeliac uk site you have to pay to have full access but you can browse some bits.
Have any test they offer then try gf it may help. It might pay you to hop into the pernicious amemia site they will more than likely say your b12 is in grey area where you have symptoms but dr wont treat because you are in range😁
"NHS STOPPING PRESCRIPTION GF FOODS AS WIDELY AVAILABLE NOW AND nearly SAME PRICE AS ORDINARY FOODS IN SUPERMARKETS."
Surely the GF food prescription has to stop? It made a bit of sense over 10 years ago when there were no GF breads, pastas flour etc in the shops. But these days they even sell it at small CO-OP at the end of my road. OK it's more expensive but the breads bad for you anyway (have you seen the calories in it). It's better to find alternatives to pasta, pizzas and bread.
This GF food is costing the NHS far more than you would pay for it in the supermarket bbc.co.uk/news/health-17755552
There are LOTS of things which are overpriced to the NHS!
Which is an issue in itself. But when its GF food you can get anywhere its unnecessary for an already overstretched NHS.
I guess that's relatively easy to say if you are not watching every single last penny (I would include myself in that description and count myself very lucky). However if you are up against it financially it could easily be the last straw. There is absolutely no doubt that weight for weight gf stuff is much more expensive. And much as we can argue people should eat wholefoods rather than gf I would hate to argue that with a young child with coeliac.
Yes, but most of us would believe we are up against it financially, but the the NHS is defiantly in that boat.
Would it not be fare to say that if you are up against it you eat less GF foods and find cheaper alternatives. Or is it that you should be looking for another job or even ask your boss for a pay rise? If you're on benefits perhaps it's a government issue.
sorry I was rather unclear - I don't consider myself up against it (luckily) but am aware there are a lot of people much worse off than myself. And I do think it's much harder to convince a child not to eat the same sort of stuff their mates eat. I fear we won't agree on this one Tillyxx
Sure, I wasn't trying to be contraversial. I just have great respect for the NHS and the miracles they perform. They saved my life for sure. But they have finite resources, and I think people should consider this when they're asking for their GF prescriptions.
What I'm tryibg to say is that this subject is definately open for debate.
I'll avoid the huge political debate we could both probably enjoy about where funding for the NHS does (or does not) come from and just say I do think it's interesting that the press has picked up on GF prescriptions as a cost-saver - I wonder if it's because CD is such a peculiar thing - i can't think of any other 'condition' which can be reversed (hopefully) by diet alone (I may be wrong here - anyone?). There's a good argument too that the costs for the NHS of the longterm damage to those who fall off the GF wagon would be greater than the costs of GF prescriptions - but a hard one to quantify.
I think we've definitely gone off topic from the original thread here
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