When gluten-free fails:let’s talk about Refractory Coeliac Disease

A few months ago, I shared a post on living with vaginal Crohn’s; written by one of my readers. So many of you resonated with it that I thought I’d shine a spotlight on another rare condition, refractory coeliac disease, in a bid to help raise awareness of that too. To do so, I chatted to Gluten Free Frankie who realised she had refractory coeliac disease a year or so after being diagnosed with coeliac disease.

What is refractory coeliac disease?

$When gluten-free fails:let's talk about Refractory Coeliac Disease$

Refractory coeliac disease is a rare type of coeliac disease where the body does not respond to a gluten-free diet over a period of time (usually defined as more than twelve months). Coeliac UK estimates it only affects a small percentage (2-5% of those with coeliac disease) and in most cases, is usually diagnosed in those 50+ (although not in Frankie’s case).

Some people with coeliac disease feel better instantly once they give up gluten. For others, it takes longer, and that’s to be expected. For example, I’ve blogged before in my post –Why going gluten-free might not be enough– that some coeliacs might suffer from lactose intolerance or various other allergies even after they’ve given up gluten.

However, this is not the same as refractory coeliac disease. Refractory coeliac disease is usually diagnosed by undergoing more tests (e.g. additional endoscopies) in specialist centres to prove the villi are still damaged after eliminating gluten; differentiating it from things like IBS and lactose intolerance which might cause symptoms even if the intestines have healed. It is also important to check the coeliac has done everything in their power to avoid gluten and are not unintentionally ‘glutening’ themselves. A study suggests that many coeliacs who think they’re not responding to gluten-free are actually persistently ingesting gluten. However, in a small group of cases, this may not be the case. There are two types of Refractory coeliac disease:type 1 and type 2.

Patient Experience: My Interview with Frankie

Me: Hi Frankie, can I ask when you first realised you had refractory coeliac disease?

Frankie: I realised about a year after I was diagnosed a coeliac. I felt slightly better after giving up gluten but was still being ill; which led me to discovering allergies to soya, milk, egg and high FODMAP foods.

Me: How was your refractory coeliac disease diagnosed and treated?

Frankie: About a year after diagnosis, my symptoms still persisted. I ended up being in hospital for three months straight; I dropped down to five stone because my intestines were so damaged that I couldn’t absorb any nutrients. I had lots of endoscopies and I had to be put on a TPN feeding line through my neck as I wasn’t absorbing anything.

$When gluten-free fails:let's talk about Refractory Coeliac Disease$

Frankie was fed by feeding tube.

Nothing can be done to treat refractory coeliac disease. The doctor palmed me off with drugs such as immunosupressants and I’ve been on 30 different tablets but none of them have benefited me (Note, because refractory coeliac disease is rare, there is little known in the way of potential treatments. The drugs Frankie has described are very similar to what I’ve been treated for with Crohn’s disease). I was one of the first ever people to be trialled on Azathioprine for refractory coeliac disease but it just made me feel sick.

Me: How has refractory coeliac disease affected you?

$When gluten-free fails:let's talk about Refractory Coeliac Disease$

At her lowest, Frankie was hospitalised with refractory coeliac disease and weighed 5 stone.

Frankie: I am constantly unwell and suffer with fatigue, messed up bowel movements, headaches and bloating. It’s been two years so I’m almost used to it by now but I’m just left to manage through my diet which simply isn’t enough.

What should I do if I suspect I have refractory coeliac disease?

Refractory coeliac disease is rare, so don’t jump to conclusions. Of course, it’s well worth monitoring your food intake to check you are not inadvertedly consuming gluten and also considering whether you might have additional intolerances. Remember, the digestive tract does take time to heal-so having symptoms weeks after giving up gluten, does not point to refractory coeliac disease. But if you do have symptoms months after giving up gluten, it might be worth talking to your GP to arrange additional tests.