Got a call from the gastroenterologist on Thursday with some potentially good news. She repeated the bloodwork that had initially been done by my primary care doc, which you'll recall revealed an elevated Tissue Transglutaminase level of 20, meaning "weakly positive" for Celiac.
The new results showed a level of 66, which is much more strongly indicative of Celiac. I have no idea how the same test can have such different results a couple of weeks apart (especially considering that I was "off wheat" for 10 days on the latter test). The gut biopsy is still the Gold Standard, so I'm trying to be patient and not get too excited. I'll have the endoscopy in a few weeks.
You might be wondering how potentially being diagnosed as having a terrible disease could possibly be considered good news. When you've been sick for a long time (18 years in my case) without any explanation for why you feel so sick, almost any kind of diagnosis is welcome. Especially when you've been told so many times that it's all in your head. The first step toward getting better has to be a diagnosis, even if it's a bad one. I don't think I'm alone in this thinking.
And as far as things go, Celiac Disease seems like it might be fairly manageable. Sure it's life-altering, and it means I'll never be able to enjoy some of my favorite foods again (pizza! Guinness!) But it's something that's almost entirely controllable by diet; it's something I can do for myself. I'd gladly give up eating my favorite foods if it means I can have my life back again.
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You can still eat pizza. There are good gluten-free pizza-crust mixes out there (I like the one Namaste foods makes), and in large cities, there are restaurants that sell pizza with a gluten free crust.
ReplyDeleteI've heard that going off wheat can cause a intolerance to milk, or maybe it was the other way around. So if you'll be going off wheat do some research for that fact and what you can do to prevent it or not have it affect you negatively (maybe you'll just need to lower your amount so you don't become intolerant). I was never able to find that paper again that indicated the connection.
ReplyDeleteA good friend of mine has Celiac disease. He's also diabetic, and was diagnosed with both as a teenager. He obviously has a lot of limitations to his diet. That being said, he routinely eats better than I do.
ReplyDeleteThe big limitation for him is eating at restaurants, which is understandably difficult considering his level of sensitivity (if he kisses his wife after she's eaten a piece of toast he'll be sick enough to miss work the next day). But he cooks very good food at home using gluten free ingredients, and we're currently sampling his first batch of gluten free homemade beer, which is really quite good, especially for a first try.
There are a lot of support groups and online forums relating to it that can help with menu and lifestyle ideas if that turns out to be the problem.
Good luck!
I saw your shutter comment about the colonoscopy. I am 31 and have already had 2. The prep is the worse part and even that isn't terrible. You won't even remember the procedure itself, in fact you will have a very nice nap.
ReplyDeleteGood luck with everything. I hope you finally get a diagnosis and are able to move on with your life.
If you like meat, try making a meatza (google for it)
ReplyDeleteKeep us updated! :-)
ReplyDeleteThat's great news to hear! Sorta. :-)
ReplyDeleteKeep us in the loop.
Heya,
ReplyDeleteI had struggled with fatigue and malnutrition for many years and it took for my condition to deteriorate to the point that I was being tested for lymphoma (a cancer of the immune system) before being diagnosed with Coeliac Disease. My Tissue Transglutaminase level was found to be 124 and the endoscope confirmed everything.
After the initial teething problems I now find the gluten free diet easy to follow and live a very active lifestyle as a professional cyclist... checkout my team website here www.3sixty.me.uk
My contacts are on there if you'd like any support in your transition to the Gluten free relm
Take care ya'll,
Ian