Positive Reticulin Antibodies Test

[KBird01]

Hi All. Thank you for adding me to your forum. I've also posted this on the Gluten Free Guerrillas forum, as I'd appreciate any help or insights.

I've been on a bit of a health journey this last few years, with very unhelpful GP's. I had lots of symptoms of fatigue, brain fog, aches, numbness and tingling (peripheral neuropathy), low mood, which have had a very debilitating effect.

I joined the pernicious anaemia forum to find possible answers and finally sent off for some private comprehensive PA blood tests. These appear to be negative, although I'm awaiting any insights from the PAS forum members.

One of the things that came back in my test was a positive Reticulin Antibodies result (40 titre). The Dr's notes said:

'There is a positive reticulin antibody result. Reticulin antibodies are found in up to 85% of sufferers of coeliac disease. That does not mean that all sufferers have these antibodies, however. Furthermore, a number of chronic conditions are also associated with these antibodies - such as Crohn's disease and dermatitis herpetiformis - and indeed individuals with no evidence of any chronic disease may harbour reticulin antibodies. If not already undertaken, a coeliac disease screen would be a sensible next step.'

I have had previous coeliac tests (last one IGA TTG - Feb 23) and these have all come back negative.

I have for many years however, had ongoing issues with intermittent bloating (tummy puffing up like I'm pregnant) and acid reflux. I seem to have identified at least one cause of being white refined flour.

I have also discovered my ferritin levels have been consistently below 30 for years (GP insists they're 'in range' so OK) and have a constant struggle to get my vit D levels up.

Could you advise on what this result may mean and possible next steps? My GP's are very unhelpful (whilst still being the best in my area, so no point moving) and are unlikely to want to investigate further seeing as they did a negative test 2 months ago (TTG).

Thanks! 😊

[SuzyQ67]

Everything I've read at medical sites such as the Mayo Clinic points towards possible celiac disease. If you were gluten free when you tested then you will get a negative result. I have crohns & never had this test elevated. I also belong to another crohns forum & no one there has heard of this either. If possible ask for a consult with a gi dr & get his/her opinion.

[KBird01 in reply to SuzyQ67]

Hi SuzyQ67 and thank you for your response. I wasn't gluten free at the time of any of my testing, but have always had a 'negative' result. The medichecks test was the only one with any scale and this gave me a result of 0.3 U/mL [0 - 10]. This was in 2019, which gives you an indication of how long I've been struggling with my health.

My GP is adamant there's no coeliac or absorption issue going on and with all the battles I've had over the years with them, it will be pretty fruitless going down this route. Hence the reason for taking my health into my own hands really. There does appear to be some benefit in a trial period of going gluten free though and see if that makes any difference. Thank you again for your help here, it really is appreciated. 😊