Well I haven’t been posting as much lately as that thing called life is getting in the way. PPfft.
Not oly are we in the midst of moving house we have been up and down to the hospital with feral3 who is currently 5 years old. Il tell you a little about it and how it has got a little stressful.
Feral3 has been displaying symptoms of belly cramps, sickness, diarrhea, excessive mood swings, and more recently weight loss and fatigue for the last few years. I know a few years seems a long time but these were at first sporadic, and constantly put down to ‘virals’. So in the new year I pushed it further with the GP explainging everything and said I suspect Coeliac disease (their aunty has it, so it makes sense to rule this out). After the initial blood test I was told by a GP receptionist that his test came back fine NFA. 4 weeks later we had to go the GP as his ears started bleeding, and was questioned and almost scolded to the fact we hadn’t returned to sort out his blood test! I MEAN WHAT?
It turns out his bloods had come back positive for coelicas disease, after getting ‘referred’ we waited another 5 weeks. Nothing, I kept calling. nothing. In the meantime i had to make sure he still had gluten in his diet for the results to come back positive and he is refusing a lot of food. His safety food was apples and occasionally bake beans. The kids has lived off apples for the past 6 months I need this sped up!
As it was a gross mistake made by the receptionist I called every other day telling them to speed it up and fix the problem. Eventually I was told that he will be referred but the hospital want another blood test. AGAIN WHAT? I thought he was referred ? I thought that’s what we was waiting for? no! Its between 6- 18 weeks referral wait AFTER A SECOND BLOOD TEST! which we couldn’t get for another 2 weeks! FUCK! After all this I was losing my shit, i mean my kids clothes are hanging off him, he is 5, not eating things and started having almost 2 naps a day! This is not ok.
In the end we bit the bullet and went private at the Wellesley hospital and what a difference. Instant advice, he checked his result to also mention that feral3’s Thyroid test has come out a little too high too! Great another thing my GP failed to tell me. He explained everything and advised us that after his second blood test we need to go gluten free, as he has most likely got coeliac disease, and to get his thyroid and a genetic bloods done to hopefully prevent him from needing a biopsy on his stomach.
Yay! We are getting somewhere and even the difference of being gluten free for a week is astonishing, less belly aches, and sickness. He is trusting me with what to eat now which is great!
So the challenge now is Gluten free vegans! We will all be going GF as we want to minimilise contamination.
Coeliacs disease : What is it?
It is an Autoimmune disease, the immune system reacts wtih Gluten. a protein found in wheat, barley and rye. When someone with coeliac disease eats gluten, their immune system reacts by damaging the lining of the small intestine.
These can range from mild to severe: bloating, diarrhoea, nausea, wind, constipation, tiredness, mouth ulcers, sudden or unexpected weight loss (but not in all cases), and anemia.
The classic symptoms of coeliac disease in children include:
- failure to thrive
- muscle wasting
- poor appetite
- abdominal distention
- change of mood and emotional distress.
How common is it?
Coeliac disease is common and affects one in 100 people. However only 24% who have the condition have been diagnosed which means there are currently nearly half a million people who have coeliac disease but don’t yet know. If a first degree family member (such as mother, father, sister or brother) has the condition then the chances of having it increase to one in ten.
How its treated:
This is treated by simply going onto a gluten free diet. It can take a while for you stomach lining to heal. Be sure to avoid any contamination of the smallest kind this will set you back.
Remember that being Gluten Free due to coeliac disease is not a diet fad, its not something you can treat yourself too for being good, It is a life long disease, it means you can not have any gluten in your diet. You will be surprised at what foods have been laced with gluten products!.
If you have CD you will be more likely to have another Autoimmune disease. Such as Type 1 Diabetes, and Autoimmune thyroid disease.
Being Lactose intolerant
Lymphoma and Small bowel cancer. (after 3-5 years your likliness lowers to that of the general population)
Autism spectrum disorder.
These are thing you should be aware of but not scared of. Its good to know what could be and how to best look after yourself.
I will be still posting recipes whih will now be GF Vegan. Hopefully I will be adding more information and home education adventures here too!
I hope this has helped anyone but mainly for people to understand how serious it is to not feed gluten to people with Coeliac disease!
For all the info you need Check out Coeliac UK