Diagnosis Trouble In The Uk

[Kyalesyin]

Proof the UK system sucks.

Wheat/gluten has made my partner feel awful for ages. We went backwards and forwards to several doctors, and got all sorts of misdiagnosis- IBS, stress, anxiety, all the above. In the end, we paid out to get a private test done, which finally diagnosed her intolerances.

Despite this, the doctors are STILL refusing to even do a basic food allergy test, claiming that it isn't neccesary. We're only 18 and 20 and really being treated like children in this. What do we need to say/do to convince the doctor that this is something we need to do, without actually pulling a gun on the poor guy? There is a lot of help available for people who have been officially diagnosed I know, but they won't even take the first step in diagnosis.

As it is, we've cut out all wheat/gluten and she's getting a lot better, but we could use the financial help and acess to dieticans/support groups.

[gfp]

Proof the UK system sucks.

Wheat/gluten has made my partner feel awful for ages. We went backwards and forwards to several doctors, and got all sorts of misdiagnosis- IBS, stress, anxiety, all the above. In the end, we paid out to get a private test done, which finally diagnosed her intolerances.

Despite this, the doctors are STILL refusing to even do a basic food allergy test, claiming that it isn't neccesary. We're only 18 and 20 and really being treated like children in this. What do we need to say/do to convince the doctor that this is something we need to do, without actually pulling a gun on the poor guy? There is a lot of help available for people who have been officially diagnosed I know, but they won't even take the first step in diagnosis.

As it is, we've cut out all wheat/gluten and she's getting a lot better, but we could use the financial help and acess to dieticans/support groups.

First suggestion is change Dr..... easier said than done ! But you can visit friends/family and see their Dr. as a guest. cost = minimal

Otherwise

I suggest taking a vacation to Italy and then visiting an emergency room.

cost = £29... + cheap hotel. riskis they might not want to do tests which involve follow-up. You would have to be specific and say you are usually gluten-free but because you were visiting Italy you couldn't resist Pasta and since your GP wouldn't test you and it wasn't confirmed you had tried some...??

or

come to Paris and just see a Dr. I can give you the names of 2....

Cost ... £29 + hotel... + about €40 for the Dr. which you can claim back via NHS if you have a lot of time/patience. + price of testing. (Don't actually know but I can ask)

I can guarantee you in Paris that you will be tested... either same day or next day.

[Kyalesyin]

First suggestion is change Dr..... easier said than done ! But you can visit friends/family and see their Dr. as a guest. cost = minimal

Otherwise

I suggest taking a vacation to Italy and then visiting an emergency room.

cost = £29... + cheap hotel. riskis they might not want to do tests which involve follow-up. You would have to be specific and say you are usually gluten-free but because you were visiting Italy you couldn't resist Pasta and since your GP wouldn't test you and it wasn't confirmed you had tried some...??

or

come to Paris and just see a Dr. I can give you the names of 2....

Cost ... £29 + hotel... + about €40 for the Dr. which you can claim back via NHS if you have a lot of time/patience. + price of testing. (Don't actually know but I can ask)

I can guarantee you in Paris that you will be tested... either same day or next day.

Wow... I think I'm in love. Her birthday is in October... I may well have to take her to Paris. That is fantastic. Thank you so much.

[aikiducky]

Just thought I'd point out that if you want to pursue testing, you're risking a false negative if she stays gluten free.

Pauliina

[Deb O (UK)]

Just thought I'd point out that if you want to pursue testing, you're risking a false negative if she stays gluten free.

Pauliina

Hi Kyalesyin

I agree with Paulina's comment above and I also want to say that I think your girlfriend is very lucky to have such a caring a supportive boyfriend!!

Does your g-friend get free prescriptions being a student? If not then I can't think of any financial benefits to being dx. As the comment above, she would have to start poisoning herself with gluten again for quite some time before a doc would test her. The diet is proof enough of a need to be gluten-free. Plus, I've read here that many gluten-free breads are not great so it might be better to buy gluten-free flour, a loaf tin and experiment. There are recipes here or you could use your local library for books - and there are many recipes on line.

My advice would be not to worry too much at the moment about an 'official' dx. gluten-free obviously suits her / you too, and I would just say to persevere with it. You can get a directory of UK safe food products via the coeliac uk site - you can pay £8 or if you tick the box to say that you've had a test then they'll send you it for free - they can't check with your GP. It really is like a little 'bible' and is invaluable to take shopping with you. Through that site you can also get in touch with local coeliac support groups, I have one in my area, and you don't have to be 'celiac' to go along - your girlfirend is obviously gluten-intolerant - symptoms and gluten-free diet have proved that - that is grounds enough to go along - and you can get local details via the site.

One of the best forms of dietary and advice is right here on the site. See the threads for recipes etc for some great ideas. You could start a thread asking for gluten-free ideas on a budget. Put some time into research now while you're both on a break from uni and I'm sure that you'll both be on track by the time you start your next semester. I live in the UK, am also new to this and also go to uni and am more than happy to chat about it anytime!

Good luck to you both - you sound wonderful!

[taz sharratt]

Proof the UK system sucks.

Wheat/gluten has made my partner feel awful for ages. We went backwards and forwards to several doctors, and got all sorts of misdiagnosis- IBS, stress, anxiety, all the above. In the end, we paid out to get a private test done, which finally diagnosed her intolerances.

Despite this, the doctors are STILL refusing to even do a basic food allergy test, claiming that it isn't neccesary. We're only 18 and 20 and really being treated like children in this. What do we need to say/do to convince the doctor that this is something we need to do, without actually pulling a gun on the poor guy? There is a lot of help available for people who have been officially diagnosed I know, but they won't even take the first step in diagnosis.

As it is, we've cut out all wheat/gluten and she's getting a lot better, but we could use the financial help and acess to dieticans/support groups.

was also dx with ibs 10 years ago and depression altho telling them i wasnt i havent had endoscopy for officail dx as when i did see the GI doc at the hospital he said ok you had a good reaction from the diet but we want you to go back on gluten for 8 weeks to have endoscopy, the prob being i didnt survive past 4 days, i was so sick i have to pay for my prescriptions so i dont see te need for formal dx to prove to them im celiac i know i am, and that is the hardest thing to come to terms with. i know how you feel its like haveing a piece of paper with you to prove to everyone that you are celiac " there see i tol you " kind of thing. if you feel better being gluten-free then you know you are celiac. excuse me but F*** um. do what you need to feel well. it took me a long time to realize this. i know celiac uk is pro testing at all costs but you must do what you feel healthy with. ide suggest you change docs or take a visit to accident and emmergency present with symptoms( severe) and ask for the test there, they can allways send the test to your surgery. its worth a shot, you can only be told no. hope i havent dribbled on to much or being a mum and wagged my finger at you, sorry. best of luck.

Proof the UK system sucks.

Wheat/gluten has made my partner feel awful for ages. We went backwards and forwards to several doctors, and got all sorts of misdiagnosis- IBS, stress, anxiety, all the above. In the end, we paid out to get a private test done, which finally diagnosed her intolerances.

Despite this, the doctors are STILL refusing to even do a basic food allergy test, claiming that it isn't neccesary. We're only 18 and 20 and really being treated like children in this. What do we need to say/do to convince the doctor that this is something we need to do, without actually pulling a gun on the poor guy? There is a lot of help available for people who have been officially diagnosed I know, but they won't even take the first step in diagnosis.

As it is, we've cut out all wheat/gluten and she's getting a lot better, but we could use the financial help and acess to dieticans/support groups.

oh by the way, your totally right, the uk systym is crap!!!!!!!

[gfp]

was also dx with ibs 10 years ago and depression altho telling them i wasnt i havent had endoscopy for officail dx as when i did see the GI doc at the hospital he said ok you had a good reaction from the diet but we want you to go back on gluten for 8 weeks to have endoscopy, the prob being i didnt survive past 4 days, i was so sick i have to pay for my prescriptions so i dont see te need for formal dx to prove to them im celiac i know i am, and that is the hardest thing to come to terms with. i know how you feel its like haveing a piece of paper with you to prove to everyone that you are celiac " there see i tol you " kind of thing. if you feel better being gluten-free then you know you are celiac. excuse me but F*** um. do what you need to feel well. it took me a long time to realize this. i know celiac uk is pro testing at all costs but you must do what you feel healthy with. ide suggest you change docs or take a visit to accident and emmergency present with symptoms( severe) and ask for the test there, they can allways send the test to your surgery. its worth a shot, you can only be told no. hope i havent dribbled on to much or being a mum and wagged my finger at you, sorry. best of luck.

oh by the way, your totally right, the uk systym is crap!!!!!!!

It sux... the thing is CUK is automatically informed (anyone wondering about privacy here) when postive biopsies are done. They steadfastly refuse any other sort of diagnosis but .... I know they do make exceptions on membership... at one point they wanted to get rid of all parents who were not themselves diagnosed ?? (strange since to work for them in HQ you need to have "Basic computer knoewledge of office software" but no prior knowledge of celiac disease.

CUK like to think they control the prescriptions and they certainly want their members to think so but the reality is its your Dr and your NHS trust that does that. Anyone can have a pre-paid prescription for about £80?? a year ... (unless this has changed - you just fill out the form, you can use it for asprin if you wanted and your Dr. prescribes it!)

The problem is its a bit of a catch-22 .... Your NHS trust is unfortunately primarily concerned at saving money.

For some reason the NHS pay about £5 for a basic gluten-free loaf... that you can buy in a supermarket for £1.50 ...

So while anyone can get a pre-paid sub and the gluten-free industry and its lobby group are benefiting from the price hike on NHS buying... (reminds me of independence day) -

President Thomas Whitmore: I don't understand, where does all this come from? How do you get funding for something like this?

Julius Levinson: You don't actually think they spend $20 thousand on a hammer, $30 thousand on a toilet seat do you?

Dr.s are "highly discouraged" from making positive diagnosis on blood tests! Obviously selling a £1.50 loaf for £5 is a huge profit margin... and it is obviously unsupportable if 1:133 people were actually diagnosed.

Equally biopsies are very expensive, anything with a general or semi-general anaesthetic is... in the thousands .. if anyone can give an actual price please say.

Now on the other hand... if you can get a dr. to positively diagnose you in the UK then all good and a Dr. from a different NHS trust is going to get less of a ticking off and threats this way. There is nothing stopping him/her except the NHS trust ... just like the choice of triple vaccine... its not illegal its just the trust will make life difficult for the Dr.

[Deb O (UK)]

was also dx with ibs 10 years ago and depression altho telling them i wasnt i havent had endoscopy for officail dx as when i did see the GI doc at the hospital he said ok you had a good reaction from the diet but we want you to go back on gluten for 8 weeks to have endoscopy, the prob being i didnt survive past 4 days, i was so sick i have to pay for my prescriptions so i dont see te need for formal dx to prove to them im celiac i know i am, and that is the hardest thing to come to terms with. i know how you feel its like haveing a piece of paper with you to prove to everyone that you are celiac " there see i tol you " kind of thing. if you feel better being gluten-free then you know you are celiac. excuse me but F*** um. do what you need to feel well. it took me a long time to realize this. i know celiac uk is pro testing at all costs but you must do what you feel healthy with. ide suggest you change docs or take a visit to accident and emmergency present with symptoms( severe) and ask for the test there, they can allways send the test to your surgery. its worth a shot, you can only be told no. hope i havent dribbled on to much or being a mum and wagged my finger at you, sorry. best of luck.

oh by the way, your totally right, the uk systym is crap!!!!!!!

I completely agree with Taz's comments above, especially about doing what you must to feel healthy.

Good luck to yer!

[taz sharratt]

It sux... the thing is CUK is automatically informed (anyone wondering about privacy here) when postive biopsies are done. They steadfastly refuse any other sort of diagnosis but .... I know they do make exceptions on membership... at one point they wanted to get rid of all parents who were not themselves diagnosed ?? (strange since to work for them in HQ you need to have "Basic computer knoewledge of office software" but no prior knowledge of celiac disease.

CUK like to think they control the prescriptions and they certainly want their members to think so but the reality is its your Dr and your NHS trust that does that. Anyone can have a pre-paid prescription for about £80?? a year ... (unless this has changed - you just fill out the form, you can use it for asprin if you wanted and your Dr. prescribes it!)

The problem is its a bit of a catch-22 .... Your NHS trust is unfortunately primarily concerned at saving money.

For some reason the NHS pay about £5 for a basic gluten-free loaf... that you can buy in a supermarket for £1.50 ...

So while anyone can get a pre-paid sub and the gluten-free industry and its lobby group are benefiting from the price hike on NHS buying... (reminds me of independence day) -

Dr.s are "highly discouraged" from making positive diagnosis on blood tests! Obviously selling a £1.50 loaf for £5 is a huge profit margin... and it is obviously unsupportable if 1:133 people were actually diagnosed.

Equally biopsies are very expensive, anything with a general or semi-general anaesthetic is... in the thousands .. if anyone can give an actual price please say.

Now on the other hand... if you can get a dr. to positively diagnose you in the UK then all good and a Dr. from a different NHS trust is going to get less of a ticking off and threats this way. There is nothing stopping him/her except the NHS trust ... just like the choice of triple vaccine... its not illegal its just the trust will make life difficult for the Dr.

its funny cos its true i honestly dont understand how on earth they can charge you £3 ( im in wales so cheaper) for a loaf and again like you said can get it from tecso for less than half the price. when my doc first gave me my scrip for gluten-free bisciuts i looked at them and thought " uhh i dont think so" not when i can get nicer taisteing and cheaper ones from the free from section at teco.

[Debbie65]

its funny cos its true i honestly dont understand how on earth they can charge you £3 ( im in wales so cheaper) for a loaf and again like you said can get it from tecso for less than half the price. when my doc first gave me my scrip for gluten-free bisciuts i looked at them and thought " uhh i dont think so" not when i can get nicer taisteing and cheaper ones from the free from section at teco.

Don´t you get 6 loaves and 6 pkts of bics for your one prescription charge? That´s what I used to get from my UK doc.

[gfp]

Don´t you get 6 loaves and 6 pkts of bics for your one prescription charge? That´s what I used to get from my UK doc.

It depends what the Dr. will write on a single prescription I think.... If he/she words it as a 6 pack of loaves then it counts as one item ... and also 'guidelines' from your NHS trust. It can be affected by things like the same Dr. having a speciality in something requiring very expensive meds so having more than the average number of patients on high cost meds.

The thing is its all very vague.... mostly its guidlines as opposed to strict rules.

or more simply as Kyalesyin said (Proof) the UK system sucks.

I have lived in a lot of countries in different continents and I have to say "The UK system sucks"

It costs a huge amount of public money but stops short of actually making it work in many cases.

Just a old but true story:

My father needed a heart bypass, a long time ago now and the UK led the world in this but he got told that the budget for his operation was finished for the year and he would have to wait for the next financial year but put simply he wouldn't be around in the next financial year.

He managed to cough up the money (try getting a second mortgage when the Dr's say you have 3 months to live) and had the op .... when he came round from anaesthesia the consultant had the good news that once they opened him up they found it was actually a different operation ... and that this still had budget left on the NHS so he could have it for free....

[gfp]

Open Original Shared Link

neither drug represented a good use of "scarce NHS resources".

"We are now the only nation in the EU not to offer cetuximab and bevacizumab to bowel cancer patients in the disease's advanced stages,"

In tests, it was found to extend life expectancy by at least four months for 50% of patients, and to shrink tumours by 50% in a quarter.

I guess no comment is really needed ?

[lesley]

Proof the UK system sucks.

Wheat/gluten has made my partner feel awful for ages. We went backwards and forwards to several doctors, and got all sorts of misdiagnosis- IBS, stress, anxiety, all the above. In the end, we paid out to get a private test done, which finally diagnosed her intolerances.

Despite this, the doctors are STILL refusing to even do a basic food allergy test, claiming that it isn't neccesary. We're only 18 and 20 and really being treated like children in this. What do we need to say/do to convince the doctor that this is something we need to do, without actually pulling a gun on the poor guy? There is a lot of help available for people who have been officially diagnosed I know, but they won't even take the first step in diagnosis.

As it is, we've cut out all wheat/gluten and she's getting a lot better, but we could use the financial help and acess to dieticans/support groups.

Hi

I'm new to the site. Has your partner been diagnosed yet? I was ill for 20 years before someone spotted that I was coeliac. No test will be positive if not on a gluten diet for approx 2 weeks.

If you want a GP to test for coeliac, tell them that there is alot of mucus in the stools and that they float. If they still don't do a blood test then your partner needs to change doctors. If the test comes back positive then a biopsy is required-still need to be on a gluten diet. The question is can your partner stand to eat gluten for that length of time?

Good luck.

[Sophiekins]

Start with your doctor - make an appointment, take a copy of your private results with you and explain that you have been diagnosed privately as celiac, and ask your doctor what, if anything, you need to do to get the celiac diagnosis into your medical records. Personally, I didn't even have to show my doctor anything (though she has since requested my complete medical records from when I was living abroad for other reasons), I explained that I was diagnosed as celiac, and on a strict gluten-free diet and that was that.

If your doctor refuses to do anything (either to test 'you' or to accept the external results), you need to ask him or her to put their refusal in writing. Once you have this, call your primary care trust (you can get the number from the NHS website) and ask about the procedure for making a complaint against a doctor. Make a formal complaint about the doctor's refusal to treat/test you for a recognised medical condition which has the potential to be life-threatening if untreated (and which you have proof you have). Once you do this, your PCT has a legal obligation to provide you with a physician who will treat you or run the necessary tests to obtain treatment for you.

A word of warning - if you are students and registered with a university GP, you most likely need a new GP (again, call your PCT for suggestions). . .my university GP was such crap that when I went in to get antibiotics for a sinus infection he asked if I was allergic to any drugs, and I said yes, Penicillin. Three guesses what he prescribed.

Don't give up! There are excellent GPs out there. . .(though to be honest, the 'financial support' is virtually nonexistent, and you'll probably learn more from this site than you will from a dietician on the NHS. . .they just don't see enough of them.) BTW, it is perfectly possible to eat gluten-free in the UK on a tight budget without NHS support. . .I did it. Think lots of fresh veggies; and rice is an awesome staple. . .cheap cheap cheap (skip the boil-in-bag stuff. . .I promise you'll get the hang of cooking it really quickly) - put milk and sugar on it and eat for breakfast! Pad Thai noodles are usually gluten-free and almost as cheap as real pasta, and check your local pharmacy - some of them double as 'health food' shops and sell the same stuff they give out on prescription, but for not much money. Dove's Farm does an excellent flour mix (the gluten-free bread flour is better than the baking flour), and usually cheaper than buying bread (I make a dozen muffins most weeks - the bag of flour costs

[Tash-n-tail]

Think lots of fresh veggies; and rice is an awesome staple. . .cheap cheap cheap (skip the boil-in-bag stuff. . .I promise you'll get the hang of cooking it really quickly) - put milk and sugar on it and eat for breakfast! Pad Thai noodles are usually gluten-free and almost as cheap as real pasta, and check your local pharmacy - some of them double as 'health food' shops and sell the same stuff they give out on prescription, but for not much money. Dove's Farm does an excellent flour mix (the gluten-free bread flour is better than the baking flour), and usually cheaper than buying bread (I make a dozen muffins most weeks - the bag of flour costs

[nikki-uk]

Thanks for the tips. Where can I find the Pad Thai Noodles? Are they to be found in a store such as Tesco's? Isn't Dove's great? I worship their Buckwheat which is my staple flour. Mind swapping your muffin recipe too? I've been living off buckwheat pancakes/flapjacks for the last three years and it gets a bit boring.

A word of warning !!!

Doves Farm Buckwheat flour is no longer gluten free (tests showed it was contaminated) and so now removed from the CUK handbook.

...Yes,what are Pad Thai Noodles?? ....are Blue Dragon Rice Noodles the same???

[Tash-n-tail]

A word of warning !!!

Doves Farm Buckwheat flour is no longer gluten free (tests showed it was contaminated) and so now removed from the CUK handbook.

...Yes,what are Pad Thai Noodles?? ....are Blue Dragon Rice Noodles the same???

I think that I am going to scream! It does explain why I'm feeling so out of sorts since I picked up the last batch of Doves in Wales two weeks ago. Gggggrrrr I've only got 3 kilo's camped out in the fridge!

Nikki - do you know whether Doves Millet or a Sorghum flour are also contaminated? Here in Birmingham we have a lot of Indian Stores and I've been seriously thinking of stopping by and picking up some of the sorghum but I'm concerned about quality standards.

[nikki-uk]

I think that I am going to scream! It does explain why I'm feeling so out of sorts since I picked up the last batch of Doves in Wales two weeks ago. Gggggrrrr I've only got 3 kilo's camped out in the fridge!

Nikki - do you know whether Doves Millet or a Sorghum flour are also contaminated? Here in Birmingham we have a lot of Indian Stores and I've been seriously thinking of stopping by and picking up some of the sorghum but I'm concerned about quality standards.

Hi Marcus - I found Open Original Shared Link (scroll down and it lists what of their flours are gluten-free)

Not sure about sorghum flour but we get gram flour either from Tesco's (in the asian food bit) or our local Indian store.

Hope that helps!!

[Tash-n-tail]

Hi Marcus - I found Open Original Shared Link (scroll down and it lists what of their flours are gluten-free)

Not sure about sorghum flour but we get gram flour either from Tesco's (in the asian food bit) or our local Indian store.

Hope that helps!!

Thanks for the input much appreciated. Gram is out since it's chickpea flour and I can't cope with beans or lentils at all But I did find Sorghum today in Tesco's and very cheaply priced too but from India and NO gluten-free or processed in a non wheat contaminated environment guarantee. Guess I'll check at a Healthfood store. My reaction to barley has been violent so the millet I may wait a bit on. I did find several varieties of mixed flour from Doves that were gluten free. I might experiment a tad later since rice and potato featured as main ingredients and I can eat only specific varieties.

Um how did you link the Doves diet data? I tried it and it flopped.

Again -- sincere thanks,

Marcus.

[nikki-uk]

Um how did you link the Doves diet data? I tried it and it flopped.

Try again! Open Original Shared Link

[darlindeb25]

Health care in America quite often stinks too. If you do not have insurance, you usually can not afford to have even blood work done. When I found out about celiac disease, I was recently divorced, had no insurance, was making just enough money to barely get by on with 2 kids still at home and could not afford testing. I did try to get insurance coverage through the state, but they said I was making too much money. I was not yet working fulltime and making minimum wage, definitely not too much money. So, I just went gluten free and now, I can't be tested because I will not ever do a gluten challenge. I do not need a paper to tell me I am celiac, my sister is, our father is, no doubt in my mind that I am. My neuropathy diagnosis finalized any confusion on the celiac matter.

I now have insurance through my job and can afford the testing, but have not had gluten for almost 6 years and I will not ever have it again. I have been tested for neuropathy, and have regular blood test done. We can deduct the difference in cost of gluten free items compared to what they would call "regular food" yet that cost is not enough to add up to the regular detuction anyways, so there isn't much sense in doing it. There are no true breaks for Americans who are celiac either. Life goes on huh?????