Is there a test to see how successful my gluten free diet is?

[Mikes]

As I do not suffer any obvious adverse reaction to eating gluten, and it's got me thinking of how do I know if I'm being glutened, or even if I'm being damaged by codex levels. Can my GP tell with just a blood test or do I need to undergo another biopsy .

[Irene Administrator]

Hi Mikes. Despite what you see published around what to expect if you have Coeliac Disease, many people are asymptomatic, often finding out they have CD when being checked out for some other condition.

If you are one of these people who doesn't seem to get an obvious reaction to ingesting gluten then you can have a tTG-Iga blood test which simply measures the antibody level to gluten in your bloods. Note: Be aware that this test will only measure your blood levels for the past 6 weeks. The ideal score is below 5 but it can take some time when newly diagnosed to get your levels to this level or below.

It depends on many factors; how aware you are of which product might contain hidden gluten, whether you eat totally gluten and wheat free and so on.

Some people who don't experience symptoms also prefer to avoid processed free from foods which contain 20ppm (a designated safe level for Coeliacs)

Hopefully you are receiving ongoing care in the management of your CD and receiving regular check ups with your doc, monitoring your vitamin levels, iron and bone density.

So the answer is yes, your doctor should be able to monitor how successful your diet is by taking a blood test.

[Mikes in reply to Irene]

Sorry if I'm repeating myself, as I thought I had already thanked you Irene, but I don't see my comments here so once again that you, and everyone else who has answered my questions so well. This is a really supportive group and helps me in getting to ask my GP the right questions in the limited time I have with her. Well done everybody, many thanks, mikes.

[Irene Administrator in reply to Mikes]

Gremlins get everywhere! Welcome to the site Mikes, glad you like it. Don't forget to look at past posts. Just put you're key word in the search bar and away you go. Feel free to write a blog about your personal experience with CD or create Q's.

[boxer]

Hi Mikes,

I was diagnosed cd about 4 months ago and like you I'm pretty much asymptomatic. Neither my gp nor consultant could give me a satisfactory answer to the question "How do I know if I have the diet right when I have no symptoms?". It was simply a case of "Stick to the diet and you'll be OK" and "You'll know if you get symptoms".

Fortunately my dietitian has "taken ownership" of me and will me monitoring my bloods and will push for the dexa scan. After 2 months of the diet my antibody count was down from 56 to 14 which was really encouraging and my B12 was also up [although I've since opted for injections]. I guess the only way of really knowing is a follow up biopsy but I know that isn't going to happen. As my dietitian said to me, blood tests tell tales.

Initially it will be 6 monthly blood tests but once the antibodies are down to within the 0-5 range it will go out to 12 monthly tests.

So far I've only had one instance of being glutened [I think] due to contamination from mixed handling spaghetti [I think].

Good luck!

[Mikes]

Thanks boxer much appreciated, particularly the blood scoring as it will help with my next discussion with my GP

[suzi_lewis]

It seems we all get such variable advice and care from our GPs and consultants. It really is luck of the draw as to how you are treated. This really is a concern of mine, and shows how little the disease is understood or taken seriously.

In my case, my consultant did a routine second biopsy after one year, plus blood tests, to check for progress. He didn't think I'd made enough progress when the results came back, even though my bloods had improved, and 8 months later I'm scheduled in for my 3rd!!

Push for what you need if your consultant isn't helpful. It's your body!!!

[weee]

I know that, whilst I was fairly symptomatic pre diagnosis, after sticking to a gluten free diet I am now much more sensitive to gluten and I am very ill if I eat it accidentaly. So it may be that you will become more sensitive to it the longer you are off it.

I know this sounds like the opposite of an incentive to stay off gluten, but preventing potential problems in teh long term will be worth it.

[fee333]

Hi, have just been diagnosed as coeliac & see dietician tomorrow so found this thread helpful. My blood test for coeliac was negative but have had positive biopsy so doe anyone know if bllod test would be helpful to me to see how things are progressing? Thanks.

[Irene Administrator in reply to fee333]

Fee333 do you know which blood test you had for diagnosis? Normally there are 2, one's for enzymes and one for antibodies. Some people have false negative to the blood test. I think you should discuss this with the Gastro doc/dietician and ask how they propose to measure your progress.

It may be that if they consider the blood test won't give the info required they propose carrying our a further endoscopy/biopsy a year on from starting the gf diet.

Your vitamin/iron levels should start to rise as you progress on your diet so you should definitely have these bloods taken to see what the starting level is.

[fee333 in reply to Irene]

Just saw your reply, many thanks. Don't know which blood test I had but will ask when next see consultant. GP been pretty useless I'm afraid, doesn't seem to know much about coeliac.

[ianwoowoo]

Hi all, don't have any answers to the question but just more questions!

I was diagnosed with CD about 17 months ago and never had any real bad 'usual' symtoms. I only suffered from feeling really full all the time which I guess was the bloating.

Now if I get zapped I get really bad bloating and pain so I guess this fits with weee's comment. My question is after being zapped last week on Tuesday could it affect me for several days after ? I felt really tired and lethargic afterwards and even now on Monday I'm still heavy legged.

I wonder if anyone has any possible similar side effects?

Thanks.

[Rhia]

I have been a coeliac for many years now-and it appears to me that not all GPs now much about the condition! I was told by one GP that if I had been on the diet for 5 years, it was safe to go back to eating a normal diet, which I did.. A few years later, by which time I had moved and had different GP-- when I was expecting my second child--the GP said to me O by the way you are still on your GF diet, aren't you-because its for life. Have never been offered any follow-up tests though!

[ctrshari]

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