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Adventures in Gluten

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Last week was crazy. Actually, all month seems like a blur. I can hardly believe it’s already the 25th of October. Where has the month gone?

I have spent a good part of this month feeling rather crummy, which prompted the visit to my GI doctor last Monday. I have had some high notes to my month, one in particular was zip-lining at a ladies retreat weekend. Have you done this before? WOW! Now, some of you who are nodding your head yes have probably cruised down the side of a mountain, or through a jungle, dangling hundreds of feet above the ground – or water?!?! YIKES! This wasn’t quite as adventurous, but thrilling just the same. It forced me to step out of my comfort zone and I am so glad I did. What a blast. I think I had as much fun watching the faces of my fellow thrill seekers as I did actually going down. You really should do a zip line someday!

So anyways, last week. Oh last week. It was much like another thrill-seeking ride that we’re all familiar with – a roller coaster. Up and down, this way and that…I enjoyed roller coasters in my teens, not so much now and not so much when it comes to my health.

As I mentioned in my last post, I wasn’t experiencing the side-effects I expected to after eating gluten again after 11 months. I made a quick mention of some off feelings in my arms and some weakness, but that point, I felt it was a fluke. A fluke it was not. That warm, numb, tingling feeling and weakness in my hands got worse. A couple of hours after writing that post I was in some significant pain. My joints ached and my body hurt, with the strongest discomfort being in my neck, across the back of my shoulders and down my arms into my hands. Still no stomach issues, but a very noticeable discomfort like I just explained. I didn’t eat anymore gluten after the sandwich.

It turns out I was experiencing neuropathy side effects from the gluten. Sound weird? Yup, I thought so too. But, it’s not that weird. Dr. Peter Green, a leading expert in Celiac Disease in the U.S. dedicates an entire chapter in his book, Celiac Disease – A Hidden Epidemic, to the topic of neurological manifestations. I’ve read this book before and had it tucked away on my bookshelf (note to self: return book to Beth – hi Beth!). After getting some input from some celiac friends, I decided to take my symptoms a bit more seriously. It wasn’t until the next day (Wednesday) that I picked up the book to see if Dr Green had anything to say about what I was experiencing. Honestly, I was very surprised to see so much discussion about it! I was really hurting by this point and pretty discouraged. What was I supposed to do now? Keep eating gluten? Was I causing damage to my body? There are some pretty serious side effects listed in Dr Green’s book and were my symptoms going to escalade to a more serious condition?

It wasn’t until Thursday that I had multiple conversations with my DRs office to toss around a few options.  I couldn’t find any research that says the side-effects I had would grow into anything damaging or threatening and my DR didn’t think they would either. So, we planned for me to keep eating gluten and to have the endoscopy sooner. But, that still wasn’t sitting right with me. Now, let me remind us all of the golden rule of celiac/gluten intolerance testing…you have to be eating gluten and the standard for testing is having gluten in your system from a minimum of 1 month up to 3 months. Wow. Ok, not 5 days like I was planning. The test is going to be expensive for us, and it didn’t seem very smart to go ahead with the test with only 5 days of gluten under my belt (no pun intended) since damage probably wouldn’t show up within so few days. If we are going to shell out the bucks for the test, I need to be set up for success to have the most accurate test possible.

As it stands today, I don’t have the endoscopy scheduled. I am hoping to gather more information and possibly get a second opinion on my side effects to see how I might manage them while in the gluten-eating stage for the test. Until I can commit to a full 3-4 weeks of eating gluten, I am calling my testing “on hold”.

Have any of you experiences side effects like I did? What did you learn about them?

Also – how many of you are going to find a zip line to cruise down?!?! 🙂

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