What has been your experience of Doctors' understanding of Coeliac Disease?

[FionaGFG]

Do you find your GP knowledgable? Your gastro? Other hospital doctors when you have been admitted?

Or have you come across some shocking ignorance? Share your comments.

What would you like to see to improve your experience?

[jan44]

Well this is a really interesting question, I have experienced things from shocking ignorance ie the gastro who diagnosed me and thought it was fine to eat oats and a crumb of carrot cake wouldn't make any difference. To a GP who whispers across the desk did I know that some GF flours can be contaminated by other grains and on another occasion tells me it's a good thing that my next blood test is due before xmas because that will enable me to eat exactly what I like over xmas without anyone knowing apparently that is what he would do in my situation as he wouldn't be able to stick to the constraints of the diet.

My GP also asked me whether I would be willing to go and talk to medical students about coeliac disease and the gluten free diet as I was his only patient who had managed to get their antibody levels within normal limits.

To improve the experience there would need to be more initial training possibly with more input from a dietitian to remove some of the myths which seem to exist.

[carlyb]

Hi Fiona!

I have to say I've had a very mixed experience, so I'm fortunate to be on these sorts of communities so I could find my own way.

From first GP visit to coeliac diagnosis was nearly 2 years and being off work with 'stress' for months. She advised me to go GF based on a +ve blood test, and told me that hopefully eventually I could reintroduce 'a little bit of gluten' now and then.

I was eventually (after a year of being GF) referred to a gastroenterologist who did a biopsy after only 1 week of gluten-eating. He took only one sample which was subsequently damaged so inconclusive, and unsurprisingly blood tests came back also inconclusive as hadn't been eating gluten again for long enough.

My second GP refused to refer me to a dietitian or write me a prescription for gluten free foods. "you don't really need it, there's plenty of free from things in the supermarket these days".

Luckily I now have a new GP who has managed coeliac patients before. He now has me under annual review, had referred me to a dietitian, and to a new gastroenterologist who is testing for secondary lactase deficiency and has tested bone density.

It really is pot luck - I feel a bit stuck between feeling like I have to demand what I want, whilst being concious of constrained NHS resources and not wanting to be a pain in the backside with internet printouts every time I go to the surgery!

Carly

[maidforit]

ooh, this question's going to get a lot of responses isn't it?!

I think that there's a distinct lack of understanding amongst GPs. When I became ill last year the doctor I saw originally said it was a stomach bug and following that I was going to be written off with IBS. It was only on my mums suggestion that I try not eating wheat and passing this info on to the doctor that I got tested for coeliacs.

Since then, when I've been back to the doctors for further tests I have had to supply all the information and tests that I want, information that I've found through this site and other places on line.

One of the biggest problems appears to be that doctors know very little about diet and how it relates to health. Having spoken to many other people with various allergies and intolerances it is apparent that GP's just don't have any training in this area which leads to little understanding of coeliac disease or how foods can affect people on so many levels.

Despite all the times people reiterate that you should get doctors supervision with diets and so on I really don't feel that they can help me and I suss things for myself based on what I know makes me feel good or bad.

In an ideal world I would like GPs to understand coeliac disease well and also non coeliac gluten sensitvity and look for this much sooner. In my ideal world people wouldn't have to go through the hell of eating gluten for 6 weeks to get tested either as I think this is extremley damaging.

So, here's my short answer:

Train GP's to learn more about food, diet and how it affects people and how to diagnose food related illnesses promptly and correctly.

[Hidden]

Dont have a clue, Was prescribed bread etc and that was it. After 2 ish years following diagnosis deveoped abdominal pains real bad for 6mths then prescribed various meds which didnt really help. Coeliac clinic just said see doctor....anyway long story. Eventually rang Coeliac uk...wow at last some understanding...said try going on Soya milk and lactose free as this can trouble coeliacs. Pleased to say I started to get big decrease in abdominal pains. My doctor didnt agree saying I would have to have lactose problems at birth. Not back to being ok but near enough. Havent been told its IBS so have to think it is. Expected more help from coeliac clinic but seems as long as I stick to gluten free food thats all the clinic was interested in. Had a failed colonoscopy after over 2yrs pain, just to confuse things had rectal bleed and post menopause bleed so really tough going as one is only expected to have one problem at a time. Thank goodness Coeliac uk gave helpful advice. should be more care given foodwise. Gather that some rekon the brain controls food bowel problems..so some will think same about coeliacs. (or anything else no doubt) easy answer.

[Hidden]

My ex gp last visit said hows that gut problem you have going. Thats why the ex bit.

[Mia1057]

Most GPs don't seem to have a clue, my dietician is ok and my gastro is somewhere in between. There seems to be a lack of understanding that we are off gluten for life as my GP keeps trying to get me to introduce a little to see how it goes. The effect of the slightest cross contamination is so bad that I can't even imagine why anyone would think that is a good idea.

[roobiedoobie]

I went to my gp last year having lost a bucket load of weight.

All I said to him was that I had tried to eat healthier, starting with eating breakfast, I told him once I started eating Shreddies my stomach hadn't been the same.

He told me to go that day to have the coeliac blood test.

The blood test and biopsy confirmed my diagnosis.

After a few months of being gluten free I fell off the wagon but found eating gluten didn't give me any outward symptoms.

I told the gp and he said if I didn't feel ill after eating gluten when I could include it in my diet again.

So in the end my gp doesn't know much about coeliac disease but he is learning with me.

[Strawb]

My consultant suggested that if I was really bothered about the rapid weight gain I'd experienced from my gf diet, I should have the odd slice of toast occasionally.

[Hidden]

Consultant in what, kidology

[weee]

Pretty good I have to say.. When I was diagnosed the endoscopy doc pretty much told me there and then I had coeliacs and I was referred to a dietitian who signposted me to Coeiliac UK ..

Mind you my GP, well one of them I don't see the same one all the time, appeared annoyed that I dare ask for some food on prescription and I felt I was wasting her time.. 'Oh go to the chemist she said they'll give you a print out of what you can have, they had no idea what she was talking about.

But my GI clinic and nurse specialist are fab..

[JGG-ITSEC]

I have found it very common through my own experience with my wife and kids having CD and the CD groups I have been involved with that it is still very common that many GPs, Emergency responders, and only a few dieticians have little to outdated information or CD and Gluten Intolerance issues of the patients in their care.

That is why I emphasise the point to "See a specialist or request one" if you suspect it to be CD or a Gluten Intolerance issue not an allergist or general practicioner. We have way to many CD or Gluten Intolerance individuals being diagnosed later in life after years of physical and mental damage is done to their body system and quality of life.

I feel it is better to find out early in life because over the long run it:

- Would be a smaller monetary price you end up paying,

- Less damage to the individual system,

- Easier and have more time for the body to recover (especially in it's growth stage).

- Not weaken your system more where it is easier for other illnesses and diseases to get a hold.

- If you have a Gluten Intolerant or Celiac child it is easier to teach them the life style change and habits they will need. As everyone knows it is harder to change tastes and habits once they are acquired or developed!