Tuesday, June 02, 2009

Gluten: The NICE guidelines for UK diagnosis

For UK readers who want to go the mainstream route here are the NICE guidelines as supplied by Ali in the comments after the Gluten and MS post.

This is part of her comment:

"I am sure you will be pleased to note that the care pathway now includes the referral to a gastroenterologist of those with negative tests but persisting coeliac symptoms."

Yes, too right. I'd personally still go LC as part of my gluten free approach but not everyone wants to go that way. I suppose I went gluten free without anything other than reading the literature! But being armed with the information you are positively coeliac is an opportunity to avoid so many auto immune diseases. If you need a positive test to make the change, these guidelines will help you.

Thanks Ali.



Jake said...

I tested positive for celiac disease on one set of blood tests and negative on a another set. I am glad to read the tests are worthless.

I investigated what foods I would have had to give up and I decided it would be too difficult to be gluten free as is gluten seems to be in most American foods. So I believed the negative result tests.

Six months later, I went on a low carb diet restricting myself to 30 grams of carbs a day. Now it was easy to be gluten free as I avoided everything that had carbs in them. Well, I must have celiac disease because since I have been low carbing, I feel much better with much less gastric distress and a lot more energy.

So I would tell anyone who has to go on a gluten free diet, just go low carb as it is so much easier.

Nick said...

Hi Peter,

I'm curious what your thoughts are about gluten intolerance vs. wheat allergies? I stopped grains about four months ago and have had a huge change in the level of inflammation in my face, sinuses and legs.

I started LC eating at the same time, so I am not really sure if it might be sugar that causes my issues. I still have not experienced the level of pain-free joints/muscles that you have written about for yourself. I am just a bit older than you are.

Unlike Jake, I don't think I have celiac disease, but I have not tested for it. I am concerned that I may have other food intolerances that I am not aware of. I eat a lot of dairy, so I will likely see if I can get tested for any issues I may have with it.

Toxic said...
This comment has been removed by the author.
Toxic said...

PS Low carb and gluten-free are very different things. You get gluten in plenty of processed, low carb foods. I was once ill for a week - glutened by a pack of cooked bacon strips marked "100 per cent bacon", and with no allergy warning. Gluten is used in flavourings, and as a means to make processed food flow along conveyors. Even foods which don't themselves contain gluten can acquire gluten if they are processed in factories where gluten-containing products are made. Not all gluten has to be declared on labels. You need to be very focused to comply with a gluten-free diet.

Anonymous said...

Hope you enjoy this:


Stuff thy face with phytate;
Abuse thy bowels with bran.
Frying pans are evil
And butter should be banned.
Trust them not to heed thee;
Go feed the plebs by hand.
Shove it down their throats
And make them understand.

We are what we eat, so
Consume insipid plants.
God made them to feed thee;
Declare not that you can't.
Cure they every cancer,
Though evidence be scant,
Hid by Satan's helpers
Who do our flock enchant.

Now you're what you eated,
Now cholesterol-free,
Small, dense and depleted
With added VAT.
All your hope defeated;
No health-back guarantee.
Throat aflame, gut leaky:
A patient's never free.

Peter said...

Tom Lehrer would be proud of you. Can't make it scan to the tune of Poisoning Pigeons in the Park though...


Peter said...

Hi Nick,

As Toxic points out, gluten is everywhere and going gluten free is no small undertaking, particularly until you really start to prepare your own food from scratch. Wheat free doesn't mean anything to me, barley and rye do the damage equally well. Several people have told me that barley, as in beer, is worse than straight wheat for them. My joint problems resolved with LC but before going fully gluten free. My skin needed total gluten elimination.

Coeliac disease is a useful label if it provides you with a specific benefit, even if that benefit is the certainty that compliance has to be 100%. Most people need this, but some of us can go that way on the basis of response to elimination.

BTW we tried gluten free normal eating before LC, for my wife's arthritis, with absolutely no effect. Although LC gluten free did work, we were very innocent about gluten during the first trial and were using malt vinegar, crisps powdered with gluten to hold the flavouring on, pub chips dipped in gluten, pork scratchings powdered with gluten, all the usual hidden sources and thought that gluten elimination was useless. LC made it much easier and compliance was much better, but we dropped carbs at the same time, so variables were certainly not controlled!


Thackray said...


For those who may not know who Tom Lehrer is:



Philip Thackray

Naomi said...


Can i have your opinion on a case?

A friend of mine had constant diarrhea for over a year. Then he finally decided to go to the doctor, who of course first put him on a dose of antibiotics.. Meanwhile, I speculated to him about gluten allergy, told him about the paleo/primal diet etc. Which inspired him to cut back heavily on the gluten- but due to lazyness and eating at work etc still having the occasional bit.

Symptoms went down a bit, but still remained (for me conspicuously always after a gluten meal, and especially after a beer night). Then my friend's doctor, after ruling everything else out, got him an appointment to get his bowels tested. First through the mouth, then through his erm, behind.

Both tests were negative, as in- everything was just fine. Diagnosis= not enough fiber, lifetime prescription for fiber supplements.

Since, i've been trying to convince him that those tests aren't 100% fool proof. He's inclined to believe me, but his lazyness wants to believe his doctor.

What do you think? What are options for him to get that diagnose he wants so badly? Do you think it even IS gluten?

Thanks for your time :)

weetabix said...

According to NICE guidelines only 10-15% of celiacs in the uk are thought to have been diagnosed-works out to be 90,000. this is based on cook et al. study of 2001 on a figure of 1% of the population. As we dont yet know how celiac manifests itself in humans it seems a staggeringly low number and poor result by doctors.

gluten is in a lot of foods and u should be v sceptical of anything processed. Delicatessen meats are one source of contamination. Even when the label says 100% aberdeen angus with salt, the process of slicing the meat will be done in a machine which more than likely was used to slice breaded meat..avoid deli meats..i was tested for allergy to meats as i had difficulty taking meat at one point..bizarre to test someone for this but hey they had to do something instead of nothing and literally no doctor in aberdeen has heard of celiac. i think they believe it affects only a very tiny minority of people!