Positive Reticulin Antibodies

[KBird01]

Hi All. Thank you for adding me to your forum.

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). 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) and are unlikely to want to investigate further seeing as they did a negative test 2 months ago (TTG).

Thanks! 😊

[Researchfan]

Hi, welcome to the gluten intolerance forum 🙂 .

There’s usually some nice and knowledgeable people on here that can relate and echo the health journey regarding the spectrum of gluten related disorders - autoimmune Coeliac Disease, Wheat allergy, and non-coeliac wheat sensitivity.

I’m not a Dr but I’ve done a lot of research and reading of the scientific literature. It took years for me to rule out Coeliac Disease - with the help eventually of an NHS Gastroenterologist and Dietician. I’m sensitive to wheat and other foods and the treatment was the same in the end - keep following a gluten free diet. Before that though I spent years trying to figure out my own health journey, many food diaries later and quite a few elimination diets. Plus allergy testing. I learnt a lot.

Everybody is different. It is important if youre still on a gluten containing ‘normal’ everyday diet to get tested for Coeliac Disease. You’re right to pursue that. Even if the test was normal range previously Coeliac can still be possible. If you can, explain to your dr your ongoing symptoms and show them that comment on reticulin antibodies.

From what I’ve read antireticulin antibodies are not very specific and suggestive of an inflammatory condition. Possibly autoimmune. You should follow it up with your gp. It may or may not be Coeliac.

Also I can relate to the low ferritin. Fatigue and brain fog is definitely related to iron, folate and or B12 deficiency with or without anemia. Your GP should be investigating this anyway if you have a history of it. as it can point to an absorption issue which can be caused by damage to the gut. Any number of conditions not necessarily Coeliac. Assuming you have a good diet providing plenty of these nutrients too.

If after that, testing is still negative. an elimination diet is still the only sure fire way to know if gluten is an issue. Trial a strict gluten free diet for two to four weeks and see if you notice improvement in symptoms. Then reintroduce gluten again and record symptoms. Keep a detailed food diary if you’re not already. It’s still the gold standard to figure out if certain foods are a culprit of symptoms.

Hope that’s a helpful reply.

[KBird01 in reply to Researchfan]

Thank you so much for your reply Researchfan and thank you for the warm welcome! I suggested to my GP at my last appointment that I perhaps had an absorption issue. She was adamant that I don't 🤷‍♀️ and that my ferritin levels were fine at 26. Since then (4 weeks), I've been supplementing with Gentle Iron and B12 self injections and feel better than I have in months. So much for that eh? But this does indicate how closed-minded my GP's are, which I know is something that leads many of us onto these forums. With that in mind, I think I'd prefer not to discuss the test result with the GP at this point in time. I really don't think I'll get a good reception. That's why I decided to take my health into my own hands 4 weeks ago.

Thanks for your insights re: the antibodies. It's so complicated isn't it?

From what you've said I think a sensible next step would be to cut out gluten for a while and see if it makes a difference. I guess in one sense, the diagnosis - even if one can be found - is not completely necessary if the right response and treatment is found (in this case whether I have a gluten intolerance).

Thank you again. It helps to much to be able to connect with people who understand. 😊