Generally speaking, Rose’s guts were hurting and uncomfortable on a regular basis (especially when we traveled), but doctor after doctor told us that they couldn’t find anything wrong.
Her CBC blood panels always looked “fine.”
Her liver enzymes looked “fine.”
Her endoscopy looked “fine.”
Her colonoscopy looked “fine.”
Her gallbladder function test looked “fine.”
The confusing part was that she didn’t feel “fine.”
Her uncomfortable tummy kept us intensely focused on digestive issues, but none of our efforts ever seemed to provide any insight regarding the source of her pain. She struggled her way through college and eventually graduated and moved away for her first internship – and that’s when her health completely fell apart! But that’s also where her story FINALLY took a turn in the right direction …
Video Capsule Endoscopy
A new doctor with fresh ideas and better testing equipment ran a series of tests over the next two months, including a Video Capsule Endoscopy (VCE), where Rose swallowed a tiny wireless camera (the size of a large vitamin) while wearing a harness with a device which recorded the camera’s journey through her digestive system.
Video Capsule Endoscopy, MayoClinic.Org
With this video, the doctor was able to see extensive inflammation and other damage in the duodenum (which is located near the gallbladder and is likely the cause of her pain in that area) and throughout her small intestine. These images confirmed what the blood work and other tests suggested – Celiac Disease. Thankfully, there was no indication of cancer, and the scaring that was caused by years of untreated Celiac Disease did not appear to be serious enough to threaten a blockage of the intestine.
According an article in the August 2014 Gastroenterology and Hepatology medical journal, Video Capsule Endoscopy plays an important role in diagnosing Celiac Disease in patients with severe symptoms such as those who are not responding well to a gluten-free diet and those who have alarm symptoms, such as blood in the stool.
There is a small risk, which is elevated in patients with Crohn’s Disease and those with strictures in the digestive tract, that the camera capsule could become lodged in the small intestine. For this reason, Rose’s doctor chose to do some preliminary tests before proceeding with the capsule endoscopy. Several days after the endoscopy, a follow up x-ray was done in order to confirm that the capsule was gone. If a capsule camera becomes lodged, it must be removed either by surgery or through an endoscopic procedure, depending on where it is stuck.
Greatly Improved Health
Years and years of unanswered questions and unresolved health issues were finally answered! Rose was treated with two rounds of steroids to bring the extreme inflammation under control. We understood the risks of steroid use, but there are times when there is no better option available.
We bought her a Nima Gluten Sensor so that there would be no more guessing about what has gluten and what doesn’t, and she began a very strict gluten-free lifestyle which she will have to adhere to for the rest of her life – because just eating less gluten does not equal “healthy” if you have an Autoimmune Disease that reacts to gluten!
Moving forward, I began researching the best possible healing strategies for those with Celiac Disease and Gluten Intolerance. I’ll be sharing more about the steps we have taken in future posts and in our Celiac, Gluten Intolerance, And Wheat Allergy Support Group. We invite you to join us there as we encourage and inspire each other in this journey!
Rosy Road Adventures With Celiac Disease 