Coeliac Disease: Gluten free

Only last month my daughter was diagnosed as having Coeliac Disease. She had the initial blood test and was told that she definitely had it and was then referred to a specialist who organised a colonoscopy.

Now after the GP gave us the initial blood test results telling us that my daughter had Coeliac Disease, she gave us the wrong information and told us that she could/should now go gluten free.

Wrong wrong wrong!!! This was in fact incorrect as you have to have gluten in your diet when you have the colonoscopy, otherwise they cannot make a proper diagnosis.

So after a false start and about 7 days gluten free, we added gluten back into the diet while awaiting the appointment for the colonoscopy. Phew!!!

The day of the appointment arrived and because of the severity of her symptons, she was 2nd on the surgery list. The surgeon even said to my daughter before the surgery 'I believe you have Coeliac disease'. After the surgery he confirmed that his prognosis was correct. He also confirmed that she did not have irritable bowel disease, crohns or any other nasty which was a huge relief.

So we started eating & researching gluten free meals, receipes and restaurants etc,. Now my husband and I have by default gone mainly gluten free as making two separate meals is a waste of time and also too hard trying to make sure that there is no cross contamination. It's hard enough when I make my oat porridge and her rice porridge at the same time.

At 6am in the morning my brain struggles to keep the fuzziness away and I have to remind myself to not mix the mixing spoons up and make sure I put her porridge, milk and sultana's into the saucepan BEFORE I do my own!! Yeeks!!!   - (see Coeliac Australia site - in Australia Oats are not recommended on a gluten free diet)

So after going gluten free for about 4 weeks my daughter decided (and specialist was agreeable) to going lactose free as well, as after having some gluten free (but not lactose free) ice cream, she felt sick almost immediately with an upset tummy and nausea.

So week one of gluten and lactose free is a bit bumpy. The local store does not always have what we feel like eating! So a little bit of normal sour cream went ok, but definitely need to source a lactose and gluten free brand.

One thing that was discussed with our amazing specialist (he has been treating me for my PBC for about 12 years) was a FODMAP exclusion diet. Daughter is still considering this as her favourite vegetable is broccoli and it would apparently be excluded.

So daughter tells me that she has diarrhea and feels nausea most or about 70% of the time. Her stomach feels bloated and sometimes sore; and she says she feels as if she wants to burp, but can't. She described it as 'bubbles expanding in her stomach, going up and down constantly'. She feels tired all the time and has maintained her weight loss of about 12 - 14 kilos since last year.

One thing the specialist did say was that going onto a gluten free diet, will not remove or even reduce the symptons immediately. It could take between 6 months to 2 years. This is because the small bowel and small intestine need to become healthy again - and this takes time.

As she had been sick for a few months with diarrhea, nausea and a general feeling of 'yuckyness', we incorrectly thought that suddenly going gluten free would get rid of these symptons straight away.

I have to say that while the GP is very good at his/her job, they only deal with general illnesses. Dealing with someone who specialises in that field makes you feel so much better, more empowered and in charge.

So, one of the things we did do was check our health insurance, change it slightly and then we joined Coeliac Western Australia.

We joined over the phone, after scanning the letter from the GP confirming that she had been diagnosed with Coeliac disease. They were extremely helpful. Our membership is renewable and is for 12 months - we received a starter/welcome pack in the post about 5-10 days later and monthly magazines and newsletters.

They have so much helpful information. We are currently using an 'app' called 'FoodSwitch' which we came across in their magazine. You can download in onto your smart phone. They even have a Facebook page.