Should I test?

[SueMD]

Hi there,

I'm 53, with a long long history of "upset stomach" problems (basically diarrhea every morning, often 3 or 4 times, every day for probably 6 years, but in a lesser version about 20 years. It got a lot worse about a year or so ago and after basic scans for anything really scary (which were thankfully negative) I decided it must be "just" IBS. So took myself off onto the low-fodmap diet which had astonishingly quick results (like within a couple of days I had my first "normal" stool in probably 30 years - I didn't actually know they could be like that  ).

Fast forward a year and I'm failing dismally to come off the exclusion bit of the low-fodmap diet (anytime I try it all starts up again), and after a very VERY near accident when away with my 6 year old  (I'm a very late starter  ) at Disneyland as just had to eat normal food decided had to do something about it. I'm also exhausted the whole time and have developed acne which I've never had in my life. So really do feel like my diet is not healthy

So went back to the docs who said that my last tests for celiac (which I didn't know they'd done) were "borderline positive". I have Hashimotos (for 25 years) and am aware both are autoimmune conditions so wondered. I also suspect when they did the celiac test I was already on a pretty low gluten diet.

So (thank you, if you are still with me  ) am now trying to eat as tho i'm celiac (i was being absolutely rubbish i now realise, having looking at this site, and have been daily consuming the stuff) - and I am starting to feel better. But doc says I need to go back on full gluten for 6 weeks to test properly. I suspect having the personality I do that I probably need to know for sure otherwise I will be constantly tempted to cheat. 

SO a few questions 1) should i test? 2) do you think it sounds like celiac (at the moment I almost want it to be just to have an answer, so wonder if I'm just convincing myself). 3) do celiac symptoms get worse the longer you are undiagnosed?

Thanks for any answers. Sue 

[SLLRunner]

Welcome, Sue MD.

Your doctor suspects you have celiacs and did not set up an endoscope to check for intestinal damage?  If I were you, I'd ask to see your results for celiac and have him explain why he did not set up an endescope. Either you have celiac disease or you don't, and the only way to really tell is via an endescope.

You must eat gluten until all testing is complete.  Recommendations are to eat gluten 8-12 weeks prior to blood tests and 2 weeks prior to endescope. The easiest way is to just continue eating gluten until all testing is complete. 

[SueMD]

thanks SLL - much appreciated. Is the protocol the same in the UK I wonder? Seems to be that they don't do endoscope unless there is a definite positive blood test (which mine wasn't), but I could be wrong. I need to be more assertive about all this I think.

I've been off the gluten in a half-hearted way for over a year (assuming IBS) so am rather daunted by the idea of going back on it. But needs must I know.

thanks again

Sue

 

 

[cyclinglady]

Exactly what celiac antibody testing was done?  If only the TTG IGA and an Iga deficiency test were done, you could ask for the entire panel.  The TTG IGA screening is good but does NOT catch all celiacs.

To answer your questions:

1) only you can decide if you want to get tested.  I personally needed it because I just had anemia and no intestinal symptoms.   Plus, my hubby had been gluten-free for 13 years and I knew how hard it was to maintain a gluten-free diet.  

2) there are 300 symptoms attributed to celiac disease.  Many overlap with other diseases.  So only testing can help determine celiac disease.

3) symptoms can get worse over time.  Damage can be occurring and you might not know it.   I had fractures two months after my diagnosis doing nothing (Osteoporois due to celiac disease).  

Here are the British GI guidlines for a celiac disease diagnosis that you could share with your doctor:

 

Dang!    Can not do the link on my iPad.  But you can google.  

 Be sure to ask for a complete panel  (I would pay out of pocket for the extra tests if you have NIH).  Keep eating gluten daily 8 to 12 weeks prior to the blood draw or you are wasting time and money.  

Good luck!  

 

[cristiana]

Hi Sue

I'm  in the UK, land of the Coeliacs with an 'o'!   A friend of mine did not get a positive blood test but had an edoscopy done privately. It cost about £800 about two years ago.  She did not have coeliac disease in the end but was diagnosed with non-coeliac gluten intolerance.  She was just glad to have the peace of mind that nothing had been missed, and peace of mind is important.  

But definitely make sure you get the full panel, I know that two out of three of the tests I had were not convincing but the third was off the charts.

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All the best!

 

[SueMD]

thanks both of you - it is really helpful and is motivating me to try to get this properly sorted.

i'm afraid I don't know which test was done - all I  know (from reading over doc's shoulder) that it was "8" when she considered it to be borderline positive (and when i was definitely reducing my gluten intake). When another was done (later in the year when i was pretty much gluten free - or gluten free as I then defined it *rolls eyes*) it was "5" which was considered negative for celiacs, unsurprisingly I guess if minimal gluten intake. But I guess if i don't know which test it was this isn't very helpful.

I am a bit freaked to read about recurrent miscarriages (many, many of them), luckily we now have our daughter so much less raw than it easily could have been   

So the answer is, get myself to the doctors and start asking questions - THANK YOU