IBS diagnosis due to negative biopsy.

[Catusha]

Hi, looking for input and thoughts! 

Late 2016 I developed persistent D and other gastrointestinal symptoms. A GP assumed it was an infection and put me on Flagyl for 10 days. However I had recurrent symptoms for almost 6 months before I went to another GP. In that time I had followed a fairly low FODMAP diet as I found that it didn't irritate my symptoms. I also have never been a big bread or pasta eater too, so I may have been inadvertently avoiding gluten already for 1-2 months before I saw this next GP. She ordered the basic tests and coeliac came back negative. I believe she did ask me if I was consuming gluten at the time and because I wasnt consciously avoiding it I told her I was consuming gluten  (hindsight is 20/20!). 

She referred me to a specialist who did a gastroscopy and colonoscopy with biopsies, all of which were fine. By this stage I think I was definitely accidentally gluten free and the specialist did not ask me about this. So the official diagnosis was post-infectious IBS. He did a spate of hydrogen methane breath tests which showed that I was sensitive to lactose and sorbitol. I managed my symptoms alone after this, mostly by staying low FODMAP (and gluten-free). 

2 years later and I have been living overseas for a while in a country where bread consumption is high. My symptoms haven't been as under control as they were in my home country because of the difference in diet and food staples and accessibility of special health foods. 

In the past 6 months I have been diagnosed with B12 deficiency (not pernicious anaemia though), hypothyroidism (doesn't seem to be autoimmune related though),  low vitamin D, slightly low red blood cell count, ESR of 26, and have suffered anxiety and depression and been prescribed medication for this (first time ever). There were also symptoms associated with the hypothyroidism that have crossover with coeliac. 

There is something niggling in the back of my mind that perhaps my IBS diagnosis wasn't correct because upon reflection I realised I wasn't consuming much (if any) gluten when going through testing and to this day my preference is to avoid such things because of the associated feelings afterwards. 

My question is, is it worth doing a challenge and requesting a blood test?  Am I just in my head about this and should accept the IBS diagnosis? Has anyone else had false negatives? 

Thank you! 

[cyclinglady]

Hi!  

Only you can decide whether or not a gluten challenge is right for you.  One to two slices of bread (or equivalent) per day for 8 to 12 weeks for the blood tests.  If you are going to do it, please insist on the entire celiac blood panel (TTG, EMA and DGP).  Why?  Because I tested positive to only the DGP IgA and that includes several follow-up tests.  My diagnosis would not have been caught if my GI had not ordered the entire panel (biopsies confirmed diagnosis).  

If you choose not to do the challenge, you will need to determine if you want to stay gluten free or not.  It sounds like it will not be easy, but it can be done.  

False negatives?  I have seen plenty of members who report this.  I wish more doctors were aware that a full gluten diet is critical for all celiac disease testing.  

I wish you well.