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Symptoms And Testing


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#1 pebbles12

 
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Posted 22 June 2013 - 11:51 PM

Apologies in advance for the long-windedness of this post!...

 

Last year I suddenly started experiencing awful gastric problems - severe bloating, horrific gas with eye watering smells (sorry to be so graphic) and bowel movements that were not normal. I thought I might have IBS so self-treated with various over the counter remedies and alterations to my diet, but nothing made a difference, so eventually went to my doctor for help.

 

An initial diagnosis of IBS failed to respond to drugs so a series of blood tests were done, including the one for coeliac, which came back negative. At the time I was severely limiting my intake of bread, cereal etc. as I wondered if that might be that I had picked up an intolerance (as I exercise a lot and fill up on toast and cereal in between meals). I am not sure if stopping all of this could have affected the test?

 

After a series of negative test results, I was back to a diagnosis of IBS. Four different drugs later and no response to any of them and I asked for a referral to a gastroenterologist. A variety of tests including an endoscopy and biopsies. The biopsies were lost and my consultant said not to worry as I 'probably didn't have celiac disease anyway'.

 

Bounced back to my doctor who yet again stuck the IBS label on me and prescribed variations on a theme of drugs I'd had before, which yet again I have not responded to.

 

My symptoms are so similar to many of those described with coeliac that I decided to try an elimination diet to see if that made a difference. Didn't notice too much of a change after two weeks, so returned to normal eating and went to town on toast, pizza, cereal, all the things I'd missed! But oh holy goodness did I pay the price. Was in so much pain with the bloat and gas.

 

So my question is should I request another endoscopy to rule in/out celiac (even though it's a singularly unpleasant procedure!) or does the fact that I wasn't massively better after two weeks an indication that it is not coeliac?

 

Thanks in advance to anyone who can help!

 


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#2 nvsmom

 
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Posted 23 June 2013 - 10:48 AM

At two weeks into the gluten-free diet, only my stomach aches and bloating were improved. My migraines were actually worse, hairloss was still bad, no change to fatigue, leg cramps still happened, joint pain was still bad. At 3 months gluten-free, overall I still felt pretty bad.... It took well over 6 months for some of my symptoms to start improving, and I'm still waiting for other symptoms to start getting better. It can take a long, long time to get better. I'm afraid that a two gluten-free trial is nothing.  :(  You would need to commit to the gluten-free diet for at least 3 months, more is better, before assessing how eating gluten-free has affected you.

 

Have you had all celiac tests done? DGP, AGA, and tTG (both IgA and IgG versions); EMA IgA, and total serum IgA (control test)? Not all tests work for each person, a variety of tests is the best way to detect celiac disease.  This report (pages 11-12) discusses the tests and how good they are: http://www.worldgast..._long_FINAL.pdf

 

So, no one has a copy of the bipsies? Not the hospital or anything? That's pretty poor management on their part.  :(  It's up to you if you wish to do it again.  You'll have to pursue whatever path will benefit you the most.  

 
Good luck with whatever you decide to do. If you decide to do more testing, don't start the gluten-free diet until testing is complete or it could affect your results.

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#3 notme!

 
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Posted 23 June 2013 - 10:51 AM

two weeks isn't a very long time - also, how long have you been sick?  if your intestines are damaged it will take a while for them to heal.  wow -- they lost your biopsies....  good thing they weren't testing for ANYTHING IMPORTANT - sheesh....

 

your experience with your doctors sounds like mine:  IBS <the elusive and mysterious 'catch-all' diagnosis, they gave me a ton of pills over the years, which, if they worked i have no idea because most of the time the side effect was 'drowsiness' - i didn't have any time for that, i worked full time and was raising 4 kids (husband on the road most of the time) by myself!  so, ow, i just suffered through it.  lolz if i want to remember anything about their childhood, i have to ask them (j/k but sometimes it feels that way!)  good luck :)


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arlene

misdiagnosed for 25 years!
just as i was getting my affairs in order to die of malnutrition...
gluten free 7/2010
blood test negative
celiac confirmed by endoscopy 9/2010

 

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#4 pebbles12

 
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Posted 24 June 2013 - 07:59 AM

Thank you for your replies.  I have been unwell now for approaching 15 months.  The diet I did wasn't specifically gluten-free, it was an elimination diet to see if I had an intolerance of any description.  The first two weeks was very stringent and the guidance said that if you didn't see any change in symptoms after the initial two weeks (after which you start reintroducing food groups) then there was little chance of a food intolerance and you should return to normal eating.  Which is what I did, with horrible consequences!

 

I've looked at all those tests but am not sure what I had!  I just know I had a blood test and it came back negative.  Then I had an endoscopy.  The biopsy samples were not labelled up properly by the consultant doing my procedure, so they were destroyed by the laboratory without being analysed :(


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