Please can you help me again with recent test results?

Hi gfgs' , I know I am being a pain but I need some more of your expert advice before I see the consultant next Monday. I have had blood tests for cd which were negative on two separate occasions in the last 5yrs,Hb,ferritin,calcium,urea and electrolytes all normal and no vitamin deficiencies. Endoscopy showed villous atrophy not sure if this is partial or complete but Dr said it was reversible. Have had indigestion for years but am always rushing around working and with a very sporty family. Problems only started in May 2012 when on holiday in Spain( upper central abdo pain radiating thru to back under ribs and to the right,nausea ,frequent soft stools and feeling really unwell). Went to Spanish clinic all bloods normal except neutrophils raised. Had ultrasound which was normal. Stool specimens sent for guirdia and salmonella and guess what all negative. Have just spoken to consultants secretary to make sure all results back because I hate to get to the hospital to be told to come back when the Dr has got the results and she told me that the results for HLA DQ2 and 8 are negative. I was sure that they would be positive! CT scan also normal. Had a course of antibiotics in Spain as Dr there thought I had stomach infection.

I am managing well on the gf diet but am struggling to put on some weight after loosing 1 1/2 stone. I feel less depressed but after being really strict and cutting out the gluten and having lacto free stuff my guts don't feel much different . Bowels fine and don't feel sick anymore. still have abdo pain.

I feel that I have to get to the bottom of this as my twin sons were born prematurely and the youngest had his ascending, transverse and descending colon removed when he was one week old. He has short bowel syndrome and manages really well on no medication just high carb and high calorie diet. My boys are 19 now and going to uni in September. I am worried sick if they might have cd.

What do you think with my test results being as they are and what would you ask the consultant ?

I know you are all really knowledgeable and you have been really helpful to me in the last few months. Thank you

Caron x

2 Replies

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  • Hi Caron,

    Thanks for your query but I suspect we can't be of much help as you really to need to have a good chat with your consultant about your symptoms and what could be causing them.

    You say you have had blood tests for CD - which ones? Did they test for:

    Tissue transglutaminase antibody (shortened to 'tTGA')?

    Endomysial antibody (shortened to 'EMA') ?

    These are generally thought to be the most accurate CD tests at the moment.

    From what you have said the plus side is that the general CD blood tests have been negative i.e. "Hb,ferritin,calcium,urea and electrolytes all normal and no vitamin deficiencies".

    However, given your ongoing symptoms it's understandable that you'd like a diagnosis. Did they run a test for colitis / stomach ulcers when they did your biospsy (they normally do this as a standard).

    There are lots of things that can cause bowel issues - which is why asking your Dr:

    - what else could be causing these issues?

    - are there any other tests that are worth doing?

    - is it worth repeating any of the tests to rule out errors during the lab testing?

    - how can we monitor the situation?

    Are all good valid questions to ask.

    What else could it be:

    Of course IBS or IBD (irritable bowel disease) can all cause similar stomach problems and these shouldn't be ruled out. IBS should only be considered once other more obvious causes have been ruled out - and the good news is that the NICE guidelines in the UK do suggest that all Drs should screen suspected IBS patients for Coeliac Disease.

    Obviously it's disappointing that you don't feel any better on a GF / Dairy free diet (I'm assuming all your blood tests & endoscopy were done whilst you were eating gluten otherwise these can provide false results).

    Could their be any Gyny issues that are causing you problems? Endometriosis can cause IBS type symptoms and a lot of female patients with coeliac disease appear to have Endometriosis. The latest research from Gyny Profs is that Endo is being considered an immune system problem.

    Gastritis can show inflammation and flattened villi and cause dyspepsia (burping) and indigestion.

    Unlikely - as this is rare is NET (Neuro Endochrine Tumours) which are slow growing and cause a variety of stomach problems: see royalfree.nhs.uk/default.as... The good news is that these are usually benign and are closely monitored as they are so slow growing. As I say these are unusual so do not worry about them but feel free to run this by your consultant so that you feel you've covered all bases.

    Good luck with the appointment and do keep us posted.

  • Thanks Fiona, really appreciate your reply. No gynae probs as hysterectomy 11yrs ago. EMA and tTg all ok . It's the HLADQ2 and 8 that I thought would be positive which are negative that has really thrown me. Am I right in thinking that to have cd these tests have to be positive ?

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