Anyone diagnosed in the Uk? I feel lost.

[Veralenn]

Hi everyone. I have a lot of celiac symptoms for years but never related to gluten until recently. So I made 12 days gluten free and then went to the doctor to ask for a test. The doctor told me to eat gluten for 2 weeks and then come back. She didn't mention how much of gluten or anything so I was having 2 pieces of toast bread daily.

In the day I went for the blood test I decided to also buy me a pharmacy one that can be made at home. The test gave a faint positive and the instructions say it doesn’t matter how strong the colour is to be considered positive. Here is a link to the picture https://ibb.co/Ln5TmKk

After a few days, I called the surgery to know my results and a receptionist told me it was normal. I asked again if I should book an appointment and she said the doctor was written there it was normal.

And I obviously have no access to see the values at all.

I have no clue on what to do at this point. Any idea or similar situations?

[trents]

Welcome to the forum, Veralenn!

The Mayo Clinic Guidelines for the pretest gluten challenge is the daily consumption of two slices of wheat bread (or the equivalent) for 6-8 weeks leading up to the day of the blood draw. How much your departure from daily regular consumption of gluten affected your test results is difficult to say. We also don't know what specific tests were run. There are a number of blood tests for celiac disease that can be run and not everyone will test positive on all of them. The most common test ordered by physicians is the tTG-IGA but some who test negative in that one will be positive in others. Here is a primer: https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/

Unfortunately, many physicians are fairly ignorant when it comes to gluten-related disorders and do not test thoroughly or they fail to give proper gluten-challenge pretest instructions to their patients. It is sad that your experience is a tale that has been too often told by others on this forum.

It is also sad that in the UK people apparently don't have online access to their medical test results. Can you call and get the information from the doctor's office about which test or tests were run and what the values were?

One option would be for you to start consuming gluten again daily for 6-8 weeks (see guidelines above from Mayo clinic) and test yourself again with a home test kit for confirmation.

Another option would be to assume you have either celiac disease or non celiac gluten sensitivity (NCGS) and commit whole-heartedly to eliminating gluten from your life. If in weeks or a few months your symptoms improve significantly you have what you need to know. Celiac disease and NCGS share many of the same symptoms. NCGS does not cause damage to the villi that line the small bowel as does celiac disease so there is currently no test for it. It is diagnosed by first ruling out celiac disease and symptom improvement when gluten is removed from the diet. But truly living a gluten-free lifestyle is more challenging than most people imagine at the outset. This might help you get started: 

 

[cristiana]

Hi Veralenn

Yes, I'm in the UK and I was diagnosed in Britain nine years ago.

The National Institute for Health Care and Excellence has published these recommendations for coeliac testing:

https://www.nice.org.uk/guidance/ng20/chapter/Recommendations#recognition-of-coeliac-disease

Some GPs may not be up to speed with these recommendations, so you may wish to copy out one or two salient points to discuss at your next doctor's appointment.

Or, as has been said, you can of course give up gluten regardless, if it makes you feel better. 

But you should also be aware that in the UK coeliacs are usually offered a comprehensive package after diagnosis through the NHS, to include: a referral to a nutritionist, DEXA bone density scans as well as annual (or more frequent) blood tests and gastroenterologist reviews, to monitor the condition.  

Personally I think a firm diagnosis is worth pursuing.  Even if it turns out you don't have Coeliac Disease, it would be good to rule it out.  I think in your position I would go back to your surgery and have a chat with your doctor as a starting point.

Cristiana