This is one of those moments where you think, “Where do I start?” I understand it’s cliche, but a bunch of wise people have said that it is best to start at the beginning. So, I will.
I have been feeling sick for pretty well as long as I can remember. Not so sick that I couldn’t function, but just enough to be annoying. Lethargic all the time – no matter how long I slept, migraines (diagnosed nearly 10 years ago), skin rash (which I assumed was a simple metal allergy) that has kept me from being able to wear my wedding ring for the past year, stomach pains and problems, the list goes on and on. I didn’t really notice how annoying it all was until I looked at it collectively and realized something was really wrong.
I went to the GI doctor (Digestive Health Specialists in Gig Harbor/Tacoma – they are the BEST and I would highly recommend them to anyone needing anything gastrointestinal) and had a whole range of tests done and was scheduled for a colonoscopy (more information on that slice of heaven in another post). My bloodwork showed an “intolerance to gluten products” and I was set up with an upper endoscopy to confirm the diagnosis of celiac disease with samples from my small intestine. Last Friday, July 30, 2010 I got the call that I do in fact have celiac.
So, what does that mean? Basically, nothing with gluten (wheat, barley and rye products) forEVER. Even small amounts of wheat products or items that are cooked in a kitchen with flour floating around are enough to make me sick. So, that means lots of strict dieting and paying attention to every label and ingredient when buying groceries – eating out will be a challenge too. The good news is, there are tons of resources out there (some good and some not as good) with information on foods that are gluten free (GF), restaurants with GF menus and more.
Some interesting information about celiac disease:
- It is one of the most common autoimmune disorders – approximately 1 in 120 people have it.
- More than 90% of cases of celiac are undiagnosed – even though a mouth swab or blood test can show if you have gluten sensitivity or intolerance.
- The symptoms are diverse and vary from one person to the next – some people show no symptoms, which is why it is likely to go undiagnosed.
- There is a link between celiac, wheat allergies and migraines (why didn’t anyone suggest this to me before!?) and it is common that many people with migraines can eliminate a good number of their headaches if they stop eating gluten.
- Celiac is genetic, so if you have it, it is very likely that your siblings, children or parents could have it as well.
- Even though celiac is incurable, it is not intolerable to live with and if you control it isn’t life threatening.
I have been on the GF train for almost one week, and it isn’t too terrible. There are a lot of changes and it is definitely different, but I will be documenting it all in this blog to help the others with celiac disease, their friends and relatives or anyone who is going gluten free. Sidenote: my friends and family have been AMAZING through this time, and a support system is absolutely essential to being successful at surviving this transition and the new normal. I am researching the bejezus out of this thing and I know a lot about the disease already. If you have any questions, need a support system or need suggestions, please feel free to ask!
My celiac life is an open book.