Maybe you’ve starting at the beginning, or you’re into months or years worth of testing… and you still have no answers for your symptoms.
If you like answers, or if you’re really sick and can’t seem to feel better… it can be quite draining.
So, as a patient – what should you do?
In the book, Dangerous Grains, the author shares the importance of coming to your Dr. from a scientific stand point. The facts are, many physicians are very busy. They’re unable to read every book you might want them to read on your specific symptoms, nor every medical journal that is published. However they are usually more willing to look at some specific medical journals or publications, related to the symptoms you’re experiencing to help you find your way back to healthy. At the back of the books, are citations from each chapter. You can look those up online, and print out complete articles and studies from relevant sources your Dr. might respect. Your Dr. will be more likely to read something that has peer review – and then act on the laboratory testing, once he also sees your invested interest in the matter.
I failed so greatly in this area. I simply didn’t know better… to even begin looking. DO YOUR RESEARCH. (Do as I say, not as I do!)
Obviously we’re all limited to our own experiences, and understanding – but the last thing you want to do is go in to your Dr. diagnosing yourself off of one internet article you read, “but can’t remember where….”
Not to mention, this can be highly offensive to someone who has years and years of training, and lots of education – and sees a broad range spectrum of what could be wrong. Also, it’s their job is to help YOU.
I would encourage you to make sure they know you trust them, and value their opinion – but then share your concern with an open mind that they might not agree with you. Because all doctors are “practicing” medicine, that means they’re not perfect, nor do they have all of the answers. Most likely (hopefully), you’d be sent to a specialist for further testing to rule out different diagnoses and get to the bottom of things.
Recently, my husband’s uncle, a retired Pediatrician, who has practiced since the 1960s, sent us a medical journal on the changes they’re trying to implement in celiac and gluten sensitivity testing. With an autoimmune disease and GI issues himself (and wife), as well as children all with markers. I’m sure this is all quite interesting to him. The medical journal was basically saying what I already had discovered in my own research but it was nice to realize more progress is being made. Gluten can cause destruction in all systems of your body, and the testing isn’t always able to tell you want you need to know. They also encouraged the gene typing tests for HLA-DQ2/DQ8 – to add strength to a diagnosis for a gluten sensitivity or even celiac disease, because of the GI testing even being so inaccurate depending on how many biopsies taken, where they are taken, and who the pathologist is reading the results. I’m not sure why Europe seems to be the leader in celiac studies, and gluten sensitivity – but America seems very delayed in their studies and piecing gluten sensitivity issues together – while the numbers keep increasing and the variances keep broadening.
I really appreciated reading this, because God has put so many in my life with similar stories, and extended families – and I know there are more out there, like us. While the actual reported cases of “golden standard” tested celiac may be 1%… Our GI suggested many people go gluten-free and refuse to go back and be tested, they refuse a gluten challenge. It’s a no brainer – why would someone need that test, to tell them what they already know? Too many people test negative for years, with multiple biopsies, or worse – a negative celiac panel, leading a goose chase in a different direction with meds that only masked the symptoms, until they popped up again. When these people “finally” test positive with cancer, or something else and then be told – “yes you had gluten sensitivity this whole time.” It might not have been celiac disease per se… but the environmental factors of gluten + test, with their genes caused the damage throughout their body for years.
Read this on the broad spectrum. As with anything, I think if you are affected – it makes you look at things in a different light. I know I would have never connected this only with my GI symptoms, if I hadn’t had the dramatic ataxia and neuropathy for the first time this year. As I was at the top of my game and eating the best I had in years… I knew something was dead wrong for me to be so chronically sick again and more tired than when I had a newborn!
If you or someone you know has had thyroid problems, a new study shares the connection of other auto immune disease and gluten sensitivity. Here is another great article to read from the magazine I enjoy, “Living Without”. (Special thanks to another friend with celiac who told me about this magazine in April – it’s been a huge blessing to our family!)
“Look to the Lord and his strength; seek His face always.”
1 Chron. 16:11