The only way to know for sure if you have Celiac vs NCGS (Non-Celiac Gluten Sensitivity) is to have tests run. I will tell you my blood work showed up negative for Celiac, but when my GI doctor did a biopsy of my small intestine, my villi were pretty much completely flat – a sure sign of Celiac Disease. I knew I was feeling better a bit better most days on my gluten free diet (well… I thought I was going gluten free anyway – more on that later!) but was still having symptoms and pain. My doctor made me go back on a gluten rich diet for 2 weeks before my test (and since I hadn’t really been avoiding gluten like I thought I had been) and I didn’t feel that much different, I was sure gluten wasn’t my problem… but I did it, had the endoscopy and colonoscopy done and sure enough… BINGO. While I was relieved to finally, after more then 20 years, have a diagnosis for my pain and symptoms, I didn’t like the idea of being labeled…. Plus as I stated earlier, I thought I had already gone gluten free months before, and still had trouble. My doctor gave me some educational literature, and I bought several books and spent hours searching the internet and starting educating myself. Boy… was I wrong about going gluten free. I had been poisoning myself on a near daily basis without knowing it – that’s why my symptoms, while a bit improved, hadn’t gone away. I was still ingesting Teriyaki sauce, salad dressings, taking the toppings off a pizza prepared on a gluten filled crust… eating around noodles from dinner, taking croutons off salads, using gluten filled lipsticks. My idea of gluten free eating was not eating the bread… I didn’t understand cross contamination or where gluten was hiding.
No one can do this work for you, it is up to you to become educated. Get involved in online support groups, read books, watch webinars, talk to a nutritionist. Find out where gluten hides… you’ll be surprised! Lean about cross contamination. Just because you don’t see a gluten containing ingredient in the food… if it was processed on a line that also processing a gluten food… it could make you sick!
Here is a list of great resources that have helped me – dive in and feel free to ask me questions!
I try to re-post a lot of good information on my facebook page http://www.facebook.com/thetwistedceliac so feel free to like my page.
many of these resources have facebook pages as well, but I do try to repost on my facebook page, so if you follow me you’ll kind of get one stop shopping on a lot of these!
This is a great smart phone app for finding somewhere to eat when you are out and about, I use it all the time, but it is always best to call ahead (during non-busy hours) and talk to the manager and make sure they can accommodate you, if they don’t make you feel comfortable, or they aren’t well informed on gluten free eating… stay away!!!
Remember, these are things that have worked for me, you need to figure out what works for you!
Have a great, healthy, and pain free weekend!
xoxoxxo The Twisted Celiac