Working without a diagnosis

We took Ellie in for an abdominal ultrasound and to get some bloodwork done on Monday to look into the theory that she is having some type of problem with her liver, gallbladder or pancreas. The only other experience I've had with an ultrasound was the one I had when I was pregnant with Ellie, in which the ultrasound tech explained what we were looking at and was generally a wealth of information. So I was surprised and frustrated when the tech on Monday wouldn't tell us a thing. She said they'd write up a report and send it to Ellie's doc and only then could I find out the results. Well that took 2 days and the waiting drove me up the wall. Finally I got this email today from her doc:

"Labs and imaging are normal. I know that is frustrating... I will go ahead and get the GI referral initiated today."

I was shocked. I thought for sure we were onto something. I spent several hours wanting to crawl into a cave and give up, but after a long talk with Ian and an exchange of emails with our nutritionist I'm feeling better. Our nutritionist wrote:

"I'm not sure the ultrasound is the be all, end all. The symptoms are leading us somewhere and I feel like we need to continue to pursue it. I'm going to talk to several others about what we might not see in the scan."

The reason I was feeling so frustrated was that I was just sure in my bones that we were really figuring this thing out. And the truth is - positive test or negative test - we are figuring things out. We know that Ellie is not digesting saturated fats well. That is a lot more information that we had a couple of months ago. So we will keep following the symptoms and see where they take us.

I've been feeling some frustration lately that Ellie obviously has "health issues" and yet no diagnosis. It's really hard for me to have a conversation with someone - who only means well - and to have them ask if she's been diagnosed with anything. Even if the person doesn't intend this message at all, the message I internalize is "why are you subjecting your child to this diet if she hasn't even been diagnosed with anything!?!" I think my push to get Ellie diagnosed with something is more about my need to look legit to the outside world and less to do with effectively treating Ellie's symptoms. The desire to look like a "good mother" is a hard thing to escape.

I've been reading a fantastic book called The UltraMind Solution by Dr. Mark Hyman. In it, there is a passage about the usefulness of a diagnosis. It's so funny how books find me just at the moment I need them to speak to me. Hyman wrote:

The Myth of Diagnosis: If You Know the Name of Your Disease, You Know What's Wrong with You

This myth is pervasive throughout medicine not just in psychiatry and neurology, and it is the single biggest obstacle to changing the way we do things and finding the answers to our health problems. 

The problem is simply this - we are in the naming and blaming game in medicine. It is what we were trained to do. Find the name of the "disease," then match the drug to the disease. You have "depression," so you need an "antidepressant." You are "anxious," so you need an "antianxiety" medication. You have bipolar disease or mood swings, so you need a "mood stabilizer." 

 Unfortunately, this approach or method of thinking is outdated, increasingly useless, and often dangerous ...

 ... these labels or diagnoses are just names we associate with a collection of symptoms. This name has nothing to do with why you have those symptoms - with the root cause of the "disease." 

 I love this passage and I think it applies beautifully to all the gastrointestinal and behavioral/developmental issues that lead a person to the Specific Carbohydrate Diet or to GAPS. For example, overgrowth of bad bacteria (the only real piece of information we have about Ellie's health besides our observations) is associated with myriad diseases including Crohn's, Ulcerative Colitis, Irritable Bowel Syndrome, dyspraxia, Attention Deficit Disorder, autism and more. One cause - many diseases.

Dr. Hyman talks about how one disease can have many different causes and how one cause can lead to many different diseases. The examples he gives are depression and gluten. Depression can be caused by many factors, such as nutritional deficiencies, low thyroid function or an autoimmune response to gluten that inflames the brain. On the other hand, gluten intolerance can lead to myriad health issues, including anxiety, depression, epilepsy and migranes.

Dr. Hyman writes:

The future of medicine is personalized treatment, not "one size fits all." The outdated method of naming the disease and then assigning a drug to fix it clearly isn't working.

Unfortunately, few in the medical industry today seem to understand this. The truth is that medical practice is virtually predicated on the myth of diagnosis.

 I'm going to take some comfort in this idea and continue pursuing healing, even though we don't know - and may never know - what "disease" we're trying to heal.