Gluten Free Guerrillas
8,497 members3,510 posts

help getting diagnosed

hello all,

I think I have a gluten intolerance, and i'm looking to get tested by my doctor. However I find it really difficult to get referred by my doctor, as they're very good at sending me away to try a new pill/to "go home and rest" etc.

I want to make a doctors appointment but I want to go armed with all of the information I need so I can't be turned away and I can finally be referred to a dietitian or testing. I was thinking of writing a food diary, and I wondered whether it'd be better to cut gluten out to show how I have had none of my symptoms since, or whether it'd be best to contain gluten in my diet to show how frequently my symptoms occur. Could you give me any advice on what you needed to present to the doctor when you were diagnosed?

FYI - my symptoms are - headaches, migraine, stomach cramps, tingling sensation in both arms, fatigue, irritable bowels.


5 Replies

Hi some gps just don't get it do they.I have coeliac went to gp with weight loss and tiredness I refused to leave the surgery until they tested my antibiotics which came back positive so was sent for a biopsy.You should be tested with those symptoms you have as dose sound like coeliac. If all fells I would get a second opinion just don't take any crap you need to push them. Good luck.



If you think you have a gluten intolerance, then you absolutely mustn't give up eating gluten until you've had a coeliac blood test (and any follow-up tests if it comes back positive).

I'm no doctor but your symptoms sound like they could also be consistent with a B12 deficiency. I have a friend who has pernicious anaemia and whose symptoms are similar to yours when his B12 injection is due.

Good luck.


Keep pushing at your GP's & the first step is a simple blood test for TTGA & if that comes back positive you will be referred for an endoscopy. It would be unreasonable for your GP to refuse the simple blood test. However if you are intolerant ie you have ncgs (non coeliac glunten sensitivity) the blood test will come up negative & the GP will probably not realise that the latter is just as problematic/damaging. However for the blood test you will still need to be eating gluten.

If it is negative then the best way forward is to give up gluten & keep a food diary etc. There is loads of info on a website Truly Gluten Free & Purehealth run by Micki Rose which is sooo helpful & can help point you in the right direction, I personally also found paleomom run by a Sarah Ballyntyne helpful, as I also had other food intolerances & the autoimmune paleo protocol helped me identify which ones & start the healing process.

It is a long journey, but the most important thing is to listen to you body & the final goal is to be well but to try & have as varied a diet as you can.

Good luck & stick to your guns with your GP. If he/she absolutely refuses to do the test, I would do it privately, it's not that expensive & if it is positive I would have great joy in telling him!


I would see a different doctor and as for a correct test usually a endoscopy it's not nice but better than blood tests because some blood tests my say you are ok. It took me 3 months to finally get diagnosed but you must keep on a normal diet to show.


Ask for the Coeliac blood test - if it comes back positive then you will be proved right. If not then you will need to explore different routes. Whatever you do, don't cut gluten out. You need to have gluten in your system for at least 3 months before the test. I wouldn't bother with a food diary as most of the time, as your belly is inflamed, it's hard to eliminate anything, and the symptoms normally persist after you have eaten gluten. When I had a blood test, it was the last possible thing that it could be. They thought I had a stomach infection, so had to send off loads of stool samples - not nice. Best wishes!


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