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

I am no medical professional, this is just what I’ve learnt along the way! If you’re ever unsure about anything, contact Coeliac UK – they’re fab!

(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 fav guides that will (hopefully!) make it all a bit easier:

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

In summary, unless you’ve got a separate barley allergy (nothing to do with coeliac disease):

  • You can always have barley malt vinegar
  • Barley malt extract & vinegar extract can sometimes be safe too.

I’ve got a blog post with more info – click here 😉

(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) Can we have all alcohol?

  • BALS. We can’t have Beer, Ale, Larger or Stout (unless they’ve been made into a gluten free version e.g. Peroni gluten free) 
  • Other spirits??? Experts agree that there is no physical way that pure distilled alcohol can contain gluten. This even includes Whisky (which is made from barley). They can only contain gluten if they’ve had stuff added (eg flavouring). And in that case, they MUST say what allergens are present on the label.
  • Mixers are where you have to be a little more careful. For example, some supermarket own cola’s contain wheat.
  • Dairy-free? Be careful with wine as some contain milk but it will say on the label.

More here on the Coeliac UK website.

(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.

Source of confusion: What do you do when the packaging states “gluten free” but oats is still listed in bold in the ingredients? Answer: It’s still safe. 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.

Want more help reading labels? Download the Coeliac UK scanner app and let it read the barcodes for you to tell you whether its gluten free or not. Info here.

(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? 

  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. Is it stodgy? If it’s a cake, could be that you didn’t cream your butter and sugar enough. Really go for it!!! I’d recommend 3-5 mins. If that doesn’t work, try a different recipe!
  4. 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?”. Even if you’re not seeing any external consequences, it will be damaging you internally. This is a Coeliac UKs advice too. If you’re struggling, message me!!!

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

Absolutely. Get out the free from aisle!! Loads of own brand cereals are safe. There’s a list of them here, along with other ways to make your weekly staples cheaper.

(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 very sick it’s an autoimmune condition and my body tries to attack itself”.
  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 I just take a big deep breathe and let it go!

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