Self diagnosed Gluten intollerance, should I still see a doctor?

Hi Tom

yes you should go to the doctors for a correct diagnosis. Coeliac disease is completely different to gluten sensitivity so it's important your diagnosed correctly. Nothing to worry about but if you are coeliac you need blood tests and your bones need to be scanned and checked to make sure your healthy. Coeliacs don't absorb vitamins and minerals so well so you may be deficient that's why your blood and bones need checking.

A simple blood test for Coeliac disease and then a endoscopy to confirm and check your small intestines!both test are needed to confirm diagnosis.  Endoscopes are quick and nothing to worry about. Once coeliac is confirmed you then get support from your Gp and a dietitian. You'll receive points for percription foods I'm on 18 because I'm active so 1 loaf of bread = 1 point.

Importantly I'm afraid you will have to eat gluten again for both tests to get a correct diagnosis.

On gluten sensitivity I don't know much about really, other than gluten upsets your digestion. Coeliac there's much more to it. Nothing to worry about it can be controlled as long as you exclude gluten once diagnosed.

All the best

Debs 

Hi Tom,

BY ALL MEANS REQUEST A FULL BLOOD PANEL TESTIING FOR CELIAC.  However, you CANNOT BE GLUTEN FREE before testing.  It will cause a false negative.  Just feeling better for a celiac does not mean that organs are not being damaged.  Remember, this is NOT an allergy.  This is a non-specific autoimune disease.  

Waste the doctor's time?  YOU are the consumer; apply his or her time to your benefit.

Laurie

Hi Tom,

Whilst it is true that you do need to be tested and Coeliac is a disease not an alergy I would certainly not rush to eat gluten again.

I was also told I needed to eat a gluten rich diet for at least 6 weeks before being tested. My original test came back negative even though I'm 'a text book case'. Senior Gastroenterologist at Southampton General Hospital's words. The same guy then did genetic testing and confirmed diagnosis.

Genetic testing is not done everywhere and is apparently expensive but if you dig your heels in. As for GP support......I wouldn't hold your breath on that. Most GPs are clueless about Coeliac and after years of illness including pleurisy 4 times,pneumonia once not to mention all the unspecified ailments attributed to 'a virus', 'the menopause' I was finally told it was depression and given antidepressants. I continued to be ill and grew weaker and weaker. I fell over, couldn't see properly, felt like I couldn't breathe,the list is endless. I was lucky enough to be referred to a gastroenterlogist at a main teaching hospital and finally someone listened to me. I was not depressed I was slowly poisoning myself. Gluten to a Coeliac is poison. 

2 years on it's been a difficult journey but I really do feel so much better. Being gluten free was only part of my story and I now manage on a FODMAP diet. My gut was so badly damaged that I could tolerate very few foods initially but gradually things are improving.

I hope you get sorted soon. Your health is invaluable. Please don't be fobbed off by know-all GPs who are more interested in their financial incentives than their patients. Get referred to a good Gastroenterologist asap. Good luck.

Lyn

Thank you all -

I just wanted to make sure I wasn't going to go though loads of test and costing the NHS time and money if the advice at the end either way would be "continue to avoid gluten" but if there is more to it than that I'll call my doctors

Thanks again for the help.

Tom