What I Wish I Had Known When I Was A New Coeliac

As if it isn't complicated enough finding out that you have coeliac disease and will have to live on a gluten free diet for the rest of your life, there's one thing that I wish I had read about to make it even more complicated for myself, as it would have saved me so many months of being sick even though following the diet, or so I thought.

Something that every new coeliac should know and be very aware of is that foods labelled gluten free may still contain gluten.

See, told you it was complicated.

I'm going to write this post like a stand alone piece because if it helps one person from suffering the way I did through eating a gluten free product that wasn't actually gluten free I'll be happy.

As of January 1st 2012 pre-packed gluten free products have the following labels:

Gluten Free = Products with 20ppm of gluten or less.

Very Low Gluten = Products that have been treated to remove gluten that have a ppm of 21 - 100.

No Gluten Containing Ingredients = Products that do not have ingredients that contain gluten and where cross contamination precautions have been taken.

Suitable For Coeliacs may appear on products that contain 20ppm or less.

Suitable For Most Coeliacs may appear on products that have 21 - 100ppm


PPM means parts per million. This is how many milligrams of gluten there is per kilogram. In visual terms, for 20ppm think of a peppercorn sat in 3 kilos of sugar.

So when you buy a gluten free product, it may actually contain as much as 20ppm of gluten. I can only speak for myself, a very, very sensitive coeliac, but my body cannot tolerate anywhere near that much and this is why I'm providing this information, to at least give people the facts and not to scaremonger as some would have you believe. Getting glutened by a gluten free product is scary and confusing, I didn't know that gluten could be in gluten free products and I don't think I was foolish to think that way either. At least if you know there could be some but still choose to eat it and do have effects, you'll know what caused it and know not to have it again, I was clueless when it happened to me.

I've knowingly been a coeliac since January 2009 and since then I have eaten lots of gluten free labelled products with no ill effects.

Brands that have my trust and are frequently eaten by me are:

Hale & Hearty
Mrs Crimbles
DS Gluten Free
Trufree

Plus I've never personally had an issue with any of the supermarket own brands.

If I had known at the beginning that gluten free packaged products can contain gluten I wouldn't have been as hasty to try them. This means that yes, I would have missed on on some wonderful treats that I do eat on a regular basis, but it would also have saved me from so much pain and suffering that went on for far too long as the result of eating what I now call the pie of doom.

What I would do now if I were just starting out on the gluten free diet is for starters join twitter and talk to people about their experiences with gluten free foods. If some have had problems, stay away from that product just to be safe. Also, read blogs, if you have a look around Free From G you will find loads of product recommendations that have been tried and tested by me. Every coeliac is different, some can tolerate more gluten than others, I happen to be super sensitive.

To the best of my knowledge, I have only ever been glutened by one gluten free labelled product. That's not bad going seeing as it's been 3 years now and is another reason why it's best to know the fact that gluten free products can contain gluten, if I hadn't established that fact last year who knows how many times it may have happened since, I've been much more cautious. I always thought gluten free meant gluten free and maybe you did too.

Free From G posts that may be of interest:

The Pie of Doom

The Gluten Free Labelling Law

What Is PPM?