My GP seems clueless when it comes to Coeliac, any advice?

My youngest son became very ill this summer with classic coeliac symptoms, I saw several doctors at my GP surgery who continually told me he had a virus and it was normal for these symptoms to last for up to 6 weeks ( a 20 month old lying down ALL day, vomitting, losing lots of weight etc.). Eventually I realised his symptoms matched with coeliac, when I raised this with my GP they disagreed with me and I only got referred to day clinic at hospital because I refused to leave GPs surgery. That same day hospital realised something was wrong and in less than 2 weeks he was under care of gastro team and gluten free.

After this I got my oldest son tested, even though he has shown no symptoms. His blood test showed elevated ttg levels but GP (not the one I had te row with) said as he was symptom free we shouldn't worry about this. I queried this with him and he agreed to take advice from a paediatric consultant. This resulted in my oldest son being referred to the gastro team.

He has his appt at the end of December, but has been under the weather for a few weeks and has been getting bouts of the runs. I took him to GP today and there advice was to cut out gluten until we see the gastro team. I couldn't believe, I pointed outhe needs to keep having gluten for any testing and GP just shrugged her shoulders.

Are all doctors this ignorant to coeliacs or am I just unlucky?

Any advice on how to manage this greatly appreciated.

8 Replies

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  • I think you're just unlucky! I've had 3 GPs since diagnosis and they've all been clued up. I would suggest either (or both) changing GPs (!!) or getting hold of some press/ professional documents from Coeliac UK and putting them in front of them!

    Hope your eldest improves soon. Make sure your GP is giving you prescription food for your kids - free to diagnosed coeliacs - you can get a list and PIP-codes (a bit like bar code numbers) so that you can order food. Tesco and Sainsbury will do a represcription service for you, free of charge, so that you can reorder and collect your foods regularly without seeing the rude GP.

    Depending how cross you are about your sons' treatment, you could also complain to the Patients' Group through your local NHS. I think I would be inclined to if I were you.

    Best of luck.

  • I'm not so sure that you're just unlucky. None of the GPs I've seen at my surgery were interested in or seemed to know about coeliac. Bizarrely, the skin specialist I went to to determine whether I had Dermatitis Herpetiformis (a skin reaction to gluten) actually suggested that I try eating Spelt Flour (???!!!) because it was so good. Whatever. So I can say that I've not exactly had great response through my journey here in Fife. Even once the skin specialist decided that I probably did have DH (my tests were inconclusive but indicative...never mind the fact that my skin clears up completely when I don't eat gluten, and the minute I ingest any I get sick and the skin problems come back within in barely 20 minutes of eating...) my surgery has never called me in to have any followup consultation, I've never been assigned any kind of gastro specialist and I most certainly do not get GF food on prescription. I was even put on a very high doseage course of Dapsone with NO information other than to return a year later! All the medical information about Dapsone says patients must have regular blood tests to check that all systems are working fine and not being damaged by the medication. I flagged this up with yet another of the GPs at my surgery and eventually they decided to do a blood test. By then my strict GF diet had had such a positive impact I rarely used the Dapsone and I have subsequently stopped altogether. So I'm basically floundering about doing as much research I can on the net and relying on groups like this to deal with my coeliac disease. So far, touch wood, it's going ok, but I am really beginning to wonder about my iron levels and other essential vitamin and mineral levels...

    Good luck with your sons. Keep pestering your various medical professionals. I hope you get some good care.

  • I think you are very unlucky in your allocation of GP.

    But your two boys are very lucky to have a mum like you.

  • I second that. This forum's really helpful - more so than the official Coeliac UK thing for me - but what your sons really need is a mum who's prepared to do all the tedious special shopping/cooking/cleaning, etc. involved and you sound pretty dedicated. Best of luck.

  • I really do sympathies with you my partner had the same problem he ended up an emergency admission before diagnosed. the important thing is you have been refered to a consultant, don't what ever you do put him on a gluten free diet otherwise his biopsy will be negative. Two of my sons were tested after my husbands diagnosis and they came back negative although my eldest does suffer from the odd bout of DH the skin form. Your other son may not be so sensitive to Gluten but then untreated it can blow up into a higher sensitivity. Persivere and don't take no for an answer. They are very lucky to have you xx

  • get on NHS choices rate the poor service and change gps. My new one WONT let me have any blood tests (hair falling out, nails splitting skin looking ill) but they did make up for it by giving 16 boxes of pasta. Me to get new gp and develop a love of pasta. can I donate some to food bank?????

  • All NHS GPs are ignorant in my experience. I feel i know more than they do - they have failed to manage any of my diseases effectively for years: Coeliac, Pernicious Anaemia, Neutropaenia, Hashimoto's. As a result i am literally managing my own health without support. That includes self medication. I'm doing a far better job than they ever did. I tried switching and found each NHS GP more useless than the next.

    And - i've never been wrong with a self diagnosis, whereas they have misdiagnosed a number of diseases, and missed others totally. Even when i got private diagnoses to confirm my own , NHS GPs refuse to recognise it. They're untouchable and they know it. No one is ever accountable for their botch ups.

    About NHS Choices - my previous surgery actively prevented my negative feedback being published on the site, so good luck with that! I have reason to believe they write their own positive feedback. (yes i have reported it and them to the Ombudsman)

  • My doctor told me after blood tests that I had a gluten intolerence but not to worry about it. Then two weeks later told me I had ceoliac disease and I had to go for endoscopy. She then had no idea about gluten free prescriptions and even asked me if I would like bourben biscuits on prescription. I ended up downloading the list of products allowed and my monthly allowance and took it to her.

    I wonder how many ceoliacs are undiagnosed due to the lack of GP knowledge.

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