Likelihood of other auto immune diseases

From all that I have read it seems that the onus is on the Coeliac patient to take hold of their health situation and be very alert. Do you know if doctors are supposed to routinely check you for vitamin deficiencies, other auto immune diseases e.g. thyroid disfunction or are Coeliacs always to take responsibility, note their new symptoms and go on yet another visit to the doc, sometimes feeling like you're too frequent a visitor?

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  • An interesting question. There are a variety of reports online linking Coeliac Disease and the genes with other auto-immune diseases including these:Thyroid, Diabetes Type 1, Lupus, Addison’s disease, Sjögren’s syndrome, Rheumatoid arthritis. Here's some interesting research here:http://www.wellcome.ac.uk/News/2009/Features/WTX054138.htm

    The strongest links appear to be with Thyroid and Type 1 Diabetes, between 2 and 10% of Coeliac patients will also have Diabetes (source Coeliac UK). However, many Coeliacs don't go onto develop these so please don't be alarmed.

    Our own experience and that of other members of our facebook group appear to show that there is gap in how Coeliac Disease is managed in the UK.

    Diagnosis:

    The good news is that NICE (the UK body for Clinical Excellence) recently issued some guidance on the approach doctors should take to diagnose Coeliac Disease see guidance.nice.org.uk/CG86/G... This is very welcome as this will hopefully unify the process and approach across the NHS to ensure that anyone suffering from CD is caught early. Which in turn should help save the NHS money through identifying patients with CD much earlier and avoiding their repeat visits with ailments whilst CD went undetected.

    Follow up:

    There doesn't appear to be universal consensus in the UK on what the after care and process for Coeliac patients should be. When you put this into context it is understandable as Coeliac Disease is still relatively new in medical terms and the blood tests to diagnose for the anti-bodies markers to flag potential Coeliacs only came into place 2 years ago. Nevertheless it is still frustrating. Most Coeliacs find that Gastro teams focus on the stomach and not the whole person. So you may require a referral to see an Endocrinologist who will assess any other hormonal/ immune problems you have due to CD. Likewise awareness of Coeliac Disease is growing amongst GPs. Yet be prepared that many think that going gluten free is easy and is just about not eating wheat. So see CD as a journey to get your health better and politely help raise awareness amongst any medical staff who are not aware of it. We're sure that that down the line another Coeliac will be pleased that you took the time to chase and ask questions and explain CD. We're very happy for any medics on this site to jump in and comment on this too.

    Guide:

    The NHS Map of Medicine Guidelines set out a handy guide for GPs and Patients as to what the follow up after diagnosis should be see healthguides.mapofmedicine.... Our experience and our groups has shown this varies.

    Hospital team:

    Often the Gastro team within hospitals want to follow you up in 6 months to a year after diagnosis and then leave you to get in touch when you feel you need to. The hospital team will normally monitor your weight and height and set up a Dexa Bone scan to check for any bone damage due to Coeliac Disease, this will then be done again when you reach 50 years old. They will also normally do blood tests to monitor your anti-bodies to gluten are declining, which is an indication that you are sticking to the gluten free diet. If you have a proactive team they will also check for common vitamin deficiencies eg iron, ferritin, B12, Vitamin D and check your Calcium and Cholesterol levels. It is pretty common for new Coeliacs to have vitamin deficiencies as nutrients aren't absorbed properly as the stomach is damaged by CD. Vitamin injections and tablets may be required to help boost your levels. The hospital should monitor you in the first year to see that you are responding well to the gluten free diet and ensure that you do not develop Refractory Coeliac Disease (which is rare). They may also recommend a repeat endoscopy to assess that your stomach villi are healing and are better than the first biopsy.

    GP:

    Likewise it's useful to update your GP on what the hospital is monitoring as we know that sometimes communication can break down between busy organisations. Your GP can arrange for you to have injections against these to help your immune system fight them: influenza, Swine Flu, Haemophilus influenzae B and pneumococcus jabs. It's also wise to ask your GP to check and monitor your blood pressure and the vitamins above if these aren't covered by the hospital check ups. As Coeliacs we often end up eating less grains that other people for obvious reasons so our blood pressure and chloestrol should be checked each year.

    We recommend you have a look at the map of medicine guide and use this to discuss at one of your appointments if you feel anything is being missed.

    Although you may not want to seem like a repeat visitor to the doctor, it is your health and you know if you feel right or not. So make a list if it helps and discuss your symptoms/ concerns. As we're still in the early days of Coeliac Disease we need to be proactive as patients and we're sure that most doctors will understand that. The British Journal of Gastroenterologists also issued some new guidelines this year for their members on treating CD, so things are looking up.

  • Thanks very much for such a thorough response.

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