I nearly fainted the other day when I read this case study in the BMJ (British Medical Journal) of all places:

The journal is the most mainstream of medical publications here in the UK and seeing a piece about gluten sensitivity in it is stunning enough. But seeing a piece from the perspective of a patient – whose 20 year multiple illness struggle sounds very much like all of ours – and the doctor’s response and recognition of it as non-coeliac gluten sensitivity is just so heart-gladdening!

Here’s the patient’s symptom list:

two decades of unexplained ill health with multiple symptoms including weakness, exhaustion, bloating, nausea, indigestion, diarrhoea, skin rashes, ingrown hairs, cracked skin, joint and muscle pain, anal leakage of undigested fat, oscillating body weight, numbness in my feet and hands, muscle spasms in my legs (especially at night), mood swings, mild depression, and disturbed sleep patterns. These symptoms fluctuated day to day, but the worst by far was a constant intense bladder pain that was eventually diagnosed as incurable and untreatable interstitial cystitis.

After going gluten and lactose free, he says:

The results were dramatic. Within a week of excluding gluten and lactose from my diet, all my symptoms had dramatically improved in just the same way as when I previously starved myself. I wasn’t starving myself now though, I was just not eating gluten and lactose. I felt better and had more energy than I had in decades.

On telling his consultant about it, he got our usual response:

He seemed quite uninterested but told me to carry on with the gluten and lactose exclusion diet “if you find it is working for you.”

He continues:

After experimenting with my diet, I have found that I react severely to even small traces of both gluten and lactose. Accidental exposure to either of them brings all my symptoms back in a matter of hours, and the symptoms take several days to subside again. 

That is just us, isn’t it?

It took several years of elimination diet, though, before he got a diagnosis of non-coeliac gluten sensitivity by a Dr Rostami.

Dr Rostami ends the piece by saying:

educating healthcare professionals about this highly prevalent and under-recognised condition is strongly recommended.

Absolutely. SO nice to see that, isn’t it?

Obviously, I don’t see this doctor considering that gluten foods means all grains, but you can’t have everything. I don’t know yet anyway: he may do for all I know.

A Mainstream Diagnosis of Gluten Sensitivity

So, why was I so excited? Well, I think it opens a door to getting a mainstream diagnosis of NCGS/severe gluten sensitivity. That means it will be on our NHS records, which means that GPs will have to take it seriously and, if we – God forbid – have to go into hospital, it should mean we aren’t treated like nutters. There will be a mainstream consultant physician for other health professionals to refer to/consult with.

It also means we may be able to see him.  I have been in touch with Dr Rostami already and explained our situation.  He is currently transferring to a new workplace and will be letting me know in the new year how we can get to see him. I’m not sure if that will be on the NHS or privately.

I don’t think it will really help in terms of treatment – and I know it shouldn’t really make any difference, but having your illness accepted by mainstream medicine is important. It is frustrating, of course, that we KNOW what the problem is and have to have an official label applied and a mainstream diagnosis to be taken seriously. But, that is life currently with it, I’m afraid, so needs must.

Good news anyway, don’t you think? 🙂 Let’s all keep our fingers crossed; it sounds like a door opening to me…