Posted 13 October 2012 - 08:13 PM
I am new to this forum and just wanting to ask a few questions
I have had long term tummy troubles since getting a bad gastroenteritis as a teenager (now 23y) - intermittent diarrhoea/loose stools, chronic nausea usually after eating, epigastric and pelvic pain, fatigue, gas and 2 episodes of iron def. anaemia.
I have been tested for gliaden, antiendomysial antibodies and tissue transglutaminase and all came back neg. I have also had 3 positive faecal occult blood tests, raised faecal calprotectin and raised CRP.
I had a colonoscopy last year with biopsies and Dr said it was mild Crohns disease. Since moving to a new job I have a new specialist and he isn't convinced it is Crohns after all.
I have recently had another colonoscopy and gastroscopy - the Dr said everything looked normal but the biopsy results still have to come back.
So... my questions are can you have negative blood work but still have coeliacs disease?
Where do others with diagnosed coeliacs get pain? All through abdomen or specific places?
Im starting to get a bit fed up with all this!
Thanks for any help
Posted 14 October 2012 - 09:06 AM
I tend to get the pain in my stomach area first (just south of my ribs) and then the bloat is more of a generalized belly area thing. Everyone presents differently though; for instance I had chronic C rather than diarrhea. It really varies.
Have you considered that you have Non-celiac Gluten Intolerance (NCGI)? It's about twice as common as celiac disease, and sufferers have exactly the same range of symptoms as celiacs except for the GI damage. Some researchers are starting to think NCGI is linked to latent celiac disease. The treatment is still the same: gluten-free diet for life.
I do hope you feel better soon and find some answers... That's a long time to feel unwell.
"Acceptance is the key to happiness."
ITP - 1993
Celiac - June, 2012
Hypothyroid - August, 2012
Celiac.com - Celiac Disease Board Moderator
Posted 14 October 2012 - 10:50 AM
Yes, you can still have Celiac Disease with all negative tests. Getting diagnosed with Celiac Disease with all negative tests is not often possible.
There are all types of abdominal pain and digestive problems associated with Celiac Disease. Your symptoms are consistent with either Celiac or NCGI.
If all tests are negative, the best next step is to remove ALL gluten for at least three months (six is better) to monitor symptom improvement/resolution. Elimination of gluten is often the best test for Celiac Disease and the only test for Non-Celiac Gluten Intolerance. As Nicole mentioned only remedy for each is the same - remove all gluten.
Just checking to make sure you've had all necessary blood tests before removing gluten. Did you have a Total IgA or IgG based tests - tTG or Demiated Gliadin Peptide (DGP)?
I hope you are feeling better very soon
Undiagnosed Celiac Disease ~ 43 years
3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive
10/25/13 - MCAD
Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile
My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free
Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS
Get PROPERLY tested BEFORE REMOVING GLUTEN.
ALWAYS independently research health related information found on internet forums/blogs.
"LTES" a Gem
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