10 Most Common Questions about Coeliac Disease

3rd February 2020
Blog post

Here are the answers to the 10 most common questions about coeliac disease that I receive through my DM’s.

(1) I’ve just been diagnosed, what advice do you have?

Firstly, don’t panic. It’s tough to start with but I promise it’s going to be ok!!

Secondly, here’s some of my fave guides that will (hopefully!) make it all a bit easier:

(2) Can I eat barley malt vinegar/extract?

Always confuses people. However, Coeliac UK recently changed the rules and its now **more simple than ever**.

The new rule: We can only have a product that contains barley malt vinegar, extract or vinegar extract if the product specifically states its gluten free somewhere on the packaging. I won’t go into the millions of confusing reasons as to why they’ve changed etc here, but if you want more info just DM me.

(3) Do I need to worry about gluten in make up, shampoo etc?

Coeliac UK’s answer: “Gluten will only cause a problem if you eat it; it cannot be absorbed through the skin.” As such, unless you’re EATING enough of it, you’re not going to have a problem!

Specific examples from Coeliac UK:

  • Lipstick/balm: “It is unlikely that you would swallow enough to cause a problem.”
  • Toothpaste: “The British Dental Association has told us that they are not aware of any toothpaste that contains gluten. Even if toothpaste did contain gluten, it would be very unlikely that you would swallow enough of it to cause a reaction.”

(4) What alcohol can we have?

I’ve got a whole guide on that here.

(5) How do I read a label about oats?

This is a fab guide from Coeliac UK but long story short:

  • Oats themselves are gluten free BUT they’re usually grown/manufactured with other crops that aren’t gluten free (like wheat) so there’s cross contamination. This is like someone sprinkling their regular breadcrumbs all over your gluten free brekkie… your brekkie is no longer gluten free.
  • That means coeliacs have to have special oats that are grown/manufactured in a safe way. If a product uses oats, the packaging can only state its “gluten free” if the oats been produced in this special way.

Common point of confusion: What do you do when the packaging states “gluten free oats” but it’s still listed in bold so looks like an allergen? Answer: It’s safe to eat. If the product says it’s gluten free, they must be coeliac safe oats. So why list it in bold? Some people are allergic/intolerant to things like barley or oats, regardless of whether they’re gluten free or not and therefore manufacturers label them in bold.

(6) What’s the difference between soy sauce & soya?

  • Soy sauce is made of two things (1) soy beans AND (2) wheat.
  • Soy sauce is not gluten free because of the wheat, nothing to do with the soy element.
  • So why is soy listed in bold on some ingredients? Because its a separate allergen they legally have to declare, like celery, mustard or dairy… nothing to do with gluten at all!!!

(7) Why does my gluten free baking always go wrong? 

Couple of common problems with gluten free baking:

  1. Are you using good quality flour? I used Doves FREEE everytime & won’t use anything else
  2. Is it too crumbly? You need to add a little tiny bit of xantham gum. You get can it from the free from aisle in supermarkets, in a little tube.
  3. Something else going wrong?? Message me! 

(8) Do you eat “may contains” or “made in a factory with…”?

Nope, never. Would you eat something if it said “may contain poison?”. Bit more about that here.

(9) Gluten free cereal is so expensive. Is there an alternative?

There used to be 🙁 long story short, most normal aisle cereals contain barley malt extract. Coeliac UK used to help us decipher if the level of gluten from that ingredient was tiny and therefore safe to eat….and so many of them were fine!!! However, in a move to force manufacturers to improve labelling, Coeliac UK have removed this info from their app so we now have no way of knowing what barley malt containing cereals are safe or not. BOOOOO!!!

(10) How do you deal with people that don’t understand?

Hmm… everyone deals with this differently I have a 3 stage process haha…

  1. I try to explain it to them. Something like “even when I eat a crumb, the villi in my stomach (cue me waving my fingers around to show what villi are) get damaged which can cause me long term problems. It also makes me very sick it’s an autoimmune condition and my body tries to attack itself but also causes me long term problems”.
  2. I try to remember that I didn’t have a clue what coeliac disease was before my diagnosis either! They’re actually super lucky they don’t understand and I actually hope they’ll never have to!!
  3. …and then if they still want to be horrible, I just take a big deep breathe and let it go!

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