Ok, spoiler alert, I have no medical qualification but I do have lots of experience as a IBS and SIBO sufferer, and I've read a fair number of studies and other scientific papers on the subjects...I really need to get out more!
During the course of my diagnosis I had a colonoscopy and biopsy results showed I did not have Celiacs, phew!
My GI's response to what about "gluten sensitivity?" was "absolutely no evidence, forget that notion". I sacked him without delay!
Well what explains the dire reaction I had to wheat then?
I trolled through many reports on PubMed, the Lancet and British Medical Journal and it started to become apparent that there was a significant body of work surrounding non celiac gluten sensitivity (NCGS). Some blinded, placebo controlled trials showed many peoples IBS symptoms worsen with gluten. Many observation trials also showed 'suffers' reporting reactions to the placebo too! So not conclusive.
So for some time I avoided Wheat, Barley, Rye and Oats because I believed I was a NCGS sufferer. I even had severe drops in my usually healthy blood sugar levels to the point of fainting on several occasions after gluten food!
Fast forward to my latest treatment after finally finding a mainstream GI and dietician who accepted SIBO and IBS existed. And, that NCGS was a possibility. They claimed the reason that most clinicians ignored it was that there isn't a conclusive test for it at present.
We know how doctors love a test and the prescription pad for our treatment! Having read some years ago that the medical profession considered Alzheimer's and Asthma a hypochondriacs complaint 100 years ago I can start to understand why progress is so slow!
My dietician suspected I had NCGS but she had her own 'test'. Because she, like me, had discovered a growing body of evidence to patients have similar reactions to the FODMAP Fructan (and fructose) as gluten she suggested the following.
Waitrose No 1 Spelt Sourdough bread! (No, I haven't got shares in Waitrose). Having seen an analysis of this bread it turned out to be moderately high in Gluten but low in Fructans.
Over the course of 3 days I worked up to several slices...surprise, no reaction!! The verdict was that in fact I had fructan sensitivity. Later on in my reintroduction phase with my symptoms almost gone I was able to eat wheat, garlic and onions etc..all fructan high.
The theory is that I had sensitivity whilst I was suffering with my IBS/SIBO but once those conditions evaporated so did my sensitivity. In the professional's experience patients had showed NCGS, Fructan and Fructose sensitivity during times of IBD/IBS/SIBO, some lucky soles like me were 'cured' others less fortunate continue to suffer.
On an aside there are many other compounds that may cause temporary or permanent reactions. For me Histamines and Sulphites are still inflammatory...maybe it will pass in time...or maybe I will still have to ask for organic wine on a night out! (no sulphites...unless its from SA!!).
So maybe a simple test for gluten sensitivity...my only advice is wait until you are free of IBS symptoms and have completed the restriction phase of a FOD diet before you try it...you don't want to complicate the results!
SIBO
Cutting out gluten tips?
Help with Food
Have a hydrogen breath test
Gluten ?
