Well, after months of doctor’s appointments, blood draws, tests and procedures – I finally have some official answers. A couple of weeks ago, my gastrointestinal doctor called me with the results of my blood test and endoscopy after consuming gluten for weeks to prep for the tests. My last investigative tests were done in October 2013 and everything looked great. But, I had been strictly gluten-free for almost 2 years. The only way to get accurate results is to consume gluten again. Let this be a valuable lesson to you that BEFORE you get any testing done, you continue to consume gluten and your normal diet. I can’t emphasize this enough. I write about it a lot on my blog and in social media. To get accurate results, don’t change anything before seeking medical help.
After years of thinking I have celiac disease, it turns out that I actually have non-celiac gluten sensitivity and Barrett’s Esophagus. There is a great article by Jane Anderson on about.com regarding this and it’s correlation to celiac disease and non celiac gluten sensitivity. I mentioned in a previous post that I was on a mission for an accurate diagnosis because of education from the International Celiac Disease Symposium. I didn’t believe the tests I had done were accurate or enough to confirm a celiac diagnosis. Obviously, I am frustrated and disappointed that yet again I went years without an accurate diagnosis.
The symptoms of non-celiac gluten sensitivity can overlap with celiac disease, but they also have different ones as well. According to the National Foundation for Celiac Awareness, “Non-celiac gluten sensitivity shares many symptoms with celiac disease. However, according to a collaborative report published by Sapone et al. (2012), individuals with non-celiac gluten sensitivity have a prevalence of extraintestinal or non-GI symptoms, such as headache, “foggy mind,” joint pain, and numbness in the legs, arms or fingers. Symptoms typically appear hours or days after gluten has been ingested, a response typical for innate immune conditions like non-celiac gluten sensitivity.”
I specifically struggle with the joint pain, inflammation, numbness and head aches, which looking back makes total sense. Even after consuming gluten again, I didn’t get the major stomach aches that I used to get before going gluten free. I was very bloated but I didn’t get sick to my stomach and that surprised me. It also reinforced my decision to go forward with the testing to get accurate answers.
So, what about the Pretty Little Celiac? Well, the reason I started this blog was to not only share my stories (the good and the ugly) but I wanted to advocate for this disease. This experience for me just reiterates how complicated getting a true diagnosis can be and the emotional and financial toll it takes on a person going through all of this. All of these experiences taught me so much about living gluten-free and celiac disease. Meeting all of you virtually through the internet and social media, along with all of the people I met at Expo’s taught me so much. Just because I don’t have celiac disease, doesn’t mean I will stop advocating for all of you and the gluten-free lifestyle. I am not going back to eating gluten because it really does make me sick and makes me feel terrible.
My experiences going forward will be more based on gluten-free living and the challenges and life lessons associate with that. I want to focus a lot on the challenges associated with gluten-free living but also the other auto-immune diseases that I struggle with such as Endometriosis and Hashimoto’s Hypothyroidism along with GERD/Barrett’s Esophagus. Obviously, with a name like Pretty Little Celiac, I would never want to deceive anyone to think that I have something when I don’t. I am going to spend the next few days or week brainstorming options, but if you have any ideas – let me know.
I’m sharing this information with you because I want to have full disclosure. I want you to know despite thinking I had all the answers 2.5 years ago, things change. New information is discovered and that’s okay. At first, I didn’t want to let all of you down but then I realized this is just part of the journey, part of the discovery and frustration that we all go through trying to find answers.
Have you had a similar story? I would love to hear about it. Email me or post it in the comments below for others to see we aren’t alone.
Thanks for being so loyal and such awesome followers.