Daily Archives: June 20, 2012

Inattention? What’s the Cure? Testing: Part One

What an “on the nose” letter to the editor this was in the Wall Street Journal a few weeks back. (See wording below)

When I was at my lowest point this last spring. I kept doing the exact thing you’re NOT supposed to do.

“Googling” the internet for answers.

It appeared all of the tests for my gall bladder and abdomen were coming up with a whole lot of, “nothing is wrong with you.” But I knew they were wrong.

Left side pain *click*

Upper left side pain *click*

Ribs feeling bruised *click*

Then I would read articles of people who had all of these troubles… for months, years… sometimes 10-20 years, and still no answers.

It left me feeling like I might die in the process of figuring out what was wrong.

When I Googled gall bladder symptoms, NONE of them fit my symptoms. I knew that wasn’t it… but as a patient, how could I figure out how to get things pointed in a different direction.

I found myself feeling similarly to how I felt when my mom’s cancer was carrying on with no “plan B” of a stem cell transplant.

Do I request to go to Mayo? Is this all just in my head? Do I just need to deal with this like I have all of these other symptoms for years?

It was draining.

I’m so thankful that God filled me up, and continued to put just the right person in my life, the right comment to be made, the right book for me to pick up… everything. According to His plan. When my friend suggested celiac disease, I actually went to the library, and got books on crohns, celiac disease, and other gut issues. It was that prodding that led me to REAL answers… and now I just want to help other people find THEIR answer too.

Similarly, The View’s co-host – Elizabeth Hasselbeck was on Dr. Oz yesterday. I don’t watch tv ironically… but my mom wanted to let me know it was on. I was thankful – #1 that more information was going to be nationally touted regarding gluten sensitivity and celiac disease, and #2 that my mom was wanting to see it…

So while I think it was too short of a segment, and could have been a lot deeper in information (as they still say 99% of people STILL aren’t diagnosed, and are struggling – That’s TOO many people with a solution that is AVAILABLE!) I was grateful she shared HER struggle publicly, and that they went over a handful of the 300 symptoms out there. Hopefully it helped some people. What she didn’t really touch on though, was her testing process… and I feel like that is one MAJOR flaw in this whole game, and the reason why SO many people are left suffering, undiagnosed. She just happens to have one of the BEST doctors in the nation helping her, which is awesome. I’d love to go to Houston and have him help my family.

Suspect gluten sensitivity/celiac? What do most doctors do? The “simple” blood test… which tests for antibodies that shows if your body is attacking gluten.

The problem? Only some 7% of patients with celiac are showing positive on this test.

The “gold standard” (biopsy) through an endoscopy – only helps 30% of people get diagnosed.

What about the other 70% of people?

What do you think happens when BOTH of those KEY tests fail?

They give up. They move on, and look elsewhere for answers… when the answer STILL might be gluten sensitivity or celiac disease.

I believe this is where gene/DNA testing is so vital. Not just to get some specific (hard-earned) label of “celiac disease” – but to let the patient know… YES, you indeed have a tendency for either A) gluten sensitivity, and here is the havoc it can cause in your body if you continue to eat gluten (mainly celiac, cancer, thyroid issues, asthma, endocrine problems, behavioral issues, migraines, anxiety, and depression to name a few…) OR B) You have a higher probability for celiac disease – so those symptoms you have, indicate an autoimmune disease as well, caused by that gluten sensitivity.

Either way – that chronic inflammation response that gluten creates in someone who is either gluten sensitive, or also has celiac disease… isn’t good a good outcome.

Wouldn’t you avoid cancer and a host of other medical issues if you could?

The only answer is to be gluten-free for life!

Regarding the inattention of observation in the medical field, I want to say that this seems to be across the board, and I don’t blame my doctor for not putting all of the pieces together sooner, after all – he was really only my doctor for 1 year, and didn’t have many past records to go off of. However, I also know of several people who went to large, research hospitals – who were unable to find out the root cause of their “mystery illness” – was also gluten sensitivity, or celiac disease. It seems the technology that was invented to advance our world, has also deteriorated that face-to-face discussion we once had. That is why being your own advocate is SO important. If you don’t feel right – speak up, until you get the answers YOU need.

{from article above}

“It’s a sad day for the medical profession when instruction in observation, the most basic skill, is assigned to a museum curator. Any doubts I had about the demise of classical medical education have been removed.

Apparently medical-school professors have been so caught up in clawing their way up the academic ladder and applying for grant money that they have forgotten to teach medical students this primary method of diagnosis.

I had a traditional professor who told all of the students: “Look at the patient. The patient will tell you the diagnosis.” I’m no professor, but that advice has proved valuable over a 30-year career.” Leo A. Gordon, M.D. – Los Angeles

“Then you will know the truth, and the truth will set you free.”

John 8:32

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