When can I stop poisoning myself? #celiac

By | October 23, 2015

When can I stop poisoning myself? The short answer to that question is today! When I first tested positive for the anti-bodies (IgA Anti TTG) that indicated that a celiac diagnosis was “highly probable”, I did the research and decided to stop eating gluten. I had a two month wait to see the celiac specialist. I didn’t want to continue poisoning myself while I waited for that appointment.

At the appointment (and I realize I haven’t blogged about it), I decided to do the endoscopy. This isn’t so much about getting an official diagnosis, but rather to get an assessment of the extent of the damage. The celiac doc did recommend that I eat a small amount of gluten in order to ensure that we do get a positive diagnosis.

In addition to the endoscopy order, I also did a full micronutrient blood panel. They took eight vials of blood! The panel showed that my IgA Anti TTG “was positive for IgA antibody to tissue transglutaminase (TTG) at a high level. However, it represents a decrease when compared to the previous result and is consistent with adherence to a gluten-free diet.” This is good news. It means that my attempts at gluten free diet over the last two months have been mostly effective.

The original booking for the endoscopy wasn’t until December 7th. When I tried eating gluten again (it was really difficult to get over the mental shift of being gluten free), I found that I felt terrible. My stomach hurt. I had cramps and diarrhea. I emailed the doctor and explained that I could not spend the next two months eating gluten and feelings like crap. I now have an appointment for the endoscopy on Wednesday (Nov 28). The timing isn’t ideal, but I will be glad to have it done.

In preparation for the endoscopy, I’ve been eating a small amount of gluten. I’ve also been learning my bodies signals. I don’t often get an immediate response to gluten. I thought I was having some pain associated with my surgery reconstruction and nerve regrowth, that actually appears to be pain caused by some swelling in my stomach/intestines as it processes (or fails to process) gluten. The next day I get smelly and loose stools/diarrhea. Then comes the blisters (dermatitis herpetiformis) on my elbows, hands, and/or knees. The good news about this is that I can now identify when I have been exposed to gluten (the celiac community refers to this as being “glutened”). It means that when I’m back on a gluten free diet (starting tomorrow), I will know when I’ve accidentally been exposed, and I can then analyze the past 24-hours and find the source – like our favourite hemp protein powder which is very much NOT gluten free :-(

This process of going gluten free, then intentionally exposing myself and watching how my body reacts, has been useful. I am learning that many of my bodies quirks were caused by the gluten. I’m also learning that when I’m on a gluten free diet, I can eat a lot of things that I could not eat before. I’m happy to report that I can now eat tomatoes (I so missed them). I am also able to eat quinoa, although I’m cautious about it – at the moment I’m limiting my quinoa intake to things I prepare myself, so that I know it has been properly soaked. I don’t want to re-create the allergy I originally developed. Once I’ve been gluten free again for several months I’ll try bell peppers again.

This is definitely a time of navigating the new me. I’m thankful that I enjoy cooking and baking. I’m thankful to have learned how to make my own chocolate from raw ingredients. It means that I don’t feel like I’m missing out. Instead, I am choosing to explore new tasty foods which are naturally gluten free.

 

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