We have been gluten free since September 2011. It has been a steep learning curve.
If you are planning to do this too, here is my 2c.
Writing a list, checking it twice
Find a reliable "gluten containing" list for your country - it should include all of the numbers for starches and fillers, as well as the more straightforward grain lists and the trickier areas like malts and soys.
Armed with this list, go through your cupboards, fridge and freezer and read every label. Discard anything you are not sure of. Donate this food to your local homeless or community centre - this somehow lessens the pain of seeing all of those dollars of shopping expenditure vanish from your house!
Don't get too caught up on the Celiac diagnosis
This part has been hard for us. We have known for a few years that wheat was possibly an issue for 3 of the 4 of us, so Mike and I had aimed to reduce it in our regular diet - only eating sourdough bread and rarely eating packaged foods.
This meant that celiac screening blood tests which are based on the levels of anti-bodies to gliadin (the gluten protein) aren't useful - well, they weren't in our case when we took them in September. They came back negative. Yet when we got unknowingly "accidentally glutened" within two or three hours July and I had headaches, fatigue, intense gut pain, bloating etc. Maybe this is just "gluten intolerance"?
The thought of 6 weeks of 4 daily serves of wheat to re-test is just impossible - how sick and cranky and in pain we would be. But even once the anti-body blood test is taken, the only definitive diagnosis is based on a bowel biopsy to check the villi for flattening. I couldn't justify a general anaesthetic for our 6 year old to find out is it truly celiac (coeliac) when the treatment - exclude gluten in your diet - was what we needed to do anyway.
Why does the celiac label matter?
Well, sadly, it seems that some people don't take you seriously if you don't say the "c" word (celiac coeliac that is). With 3 generations of auto-immune thyroid disease in play, once I was informed about the strong link between that and celiac I just couldn't muck around. Throw in my gestational diabetes (with July - the severely adverse to gluten kid) and my mother with osteoporosis as well as ongoing issues with Vitamin D, Folic Acid, and Iron deficiencies despite a nutrient rich organic diet, I found I was ticking a whole lot of symptoms of the celiac list.
Celiac is seen as an immunity issue where the gut is breached and the blood-brain barrier is crossed by the gliadin setting off lots of issues - one of which is mistaken identity in that gliadin looks a lot like thyroid hormone and triggers an auto-immune response where the immune system attacks your thyroid. Urk.
Apparently gluten intolerance doesn't actually involve the immune system but is specific parts of the body reacting to the gluten. Well that is the state of play as of this moment.
Labels aside, what's happening
Once I stop intellectualising, the reality of stopping the gluten has been uplifting. July's daily arm, gut and headaches stopped immediately (once her gut was cleared out - thanks to an excellent paediatrician who worked with us for months). Joint pain I have had for years went after 3 days - I thought it was just inevitable getting older aches and pains...my energy level is back to before hypothyroid days. All four of us are a lot less cranky : )
A place to check-in
So I thought I'd use this page as an update - ideas - gluten free joy making place. And as I refine my gluten free recipes I'll post 'em here.
What is happening with your gluten?