Gluten...my theory!

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!

[Hidden]

What a very good post David and so very helpful.

Funny thing is after reading your post and where you mention fructans, this is a thought I've had only over the past few days. After seeing a Nutritionist I find myself questioning her diagnosis that I'm sensitive to rye, wheat and barley. Reason is I'm still getting nausea and an upset stomach even though I'm having none of those foods.

Another reason is that last week I had bought a honeydew melon (low FODMAP on the list I printed off) and sliced it into 4 and had it 4 days on the trot (I'm the only one that eats it in my house). About a day after finishing the melon I started to feel poorly again.

After hardly eating anything for a couple of days, yesterday and today I've been eating but again had to rush to the toilet this afternoon and am now feeling nauseous again tonight.

I see what you're saying above re doctors not recognising SIBO, non Celiac Gluten intollerances etc. Some doctors need to look at diet.

Once again, a very good and helpful post do thank you.

Alicia

[Hidden in reply to Hidden]

Hi Alicia...glad you found my post useful.

I would look at Honeydew Melon again. Monash suggests a serving of 150g as high in fructans...though the Kings College app suggests its ok, but it doesn't mention portion size! Confusing, as always!! 😊

David

[Hidden in reply to Hidden]

I certainly did and it was very interesting. Once all my tests, Colonoscopy, Ultrasound and Endoscopy plus a myriad of blood tests came back clear my doctor didn't want to know anymore.

Yes the fodmap diet can be so confusing. I am thinking that fructans are a problem with me, I'm not 100% sure about gluten.

[asbayford]

Hi! I'm almost certain I have fructan intolerance,how did you get rid of your sibo? X