Last week, I went to my dermatologist for my regular six-month follow-up. (I had some melanoma removed three years ago.) While there, I mentioned that I had another question. She listened, looked, and said, "Hmm." When your doctor says, "Hmm," pay attention.
She called me yesterday morning to tell me that the lab tests confirmed what she'd initially suspected, Dermatitis Herpetiformis, autoimmune disorder with symptoms that are triggered by a gluten sensitivity. She'd written the name of the condition for me at last week's visit. During yesterday's call, she asked me if I'd had a chance to read about the disease/condition/whatever we'd call it. I had done so. She gave me a synopsis of the condition and then outlined a treatment plan, asking first if I had any questions and then if I wanted to proceed with the plan. I'll be glad to provide the rest of the details off-line.
A couple of points about this and that. First of all, I have included several discussions about my health and medical adventures [1][2] [3] in this journal. It's not that I particularly enjoy discussing medical details in public, but there are times when my story might be a) interesting to some readers or b) illustrative of wider issues. This topic is mostly about b).
- Although my doctor was careful to make sure that she provided me with the details of my diagnosis and treatment plan, she also assumed and encouraged that I read about the condition myself. I am sure that medicine-by-Google is a mixed blessing for doctors. MBG gives patients important information and so encourages the patient to participate more actively in the treatment, recovery, and maintenance processes. We're not just passive recipients of information and instructions. We can know stuff, ask questions, and explore related issues, just as if we were in charge of our own health.
I am also certain that doctors often have to deal with the extreme variability of the quality of information available in MBG. "I read it on the Internet, so it must be true."
Toward that end, I'm pretty careful about using information from reputable sites, places that either have an overall high stature, such as Medline from NIH or WebMD, or places that cite peer-reviewed studies. This article, “How to read articles about health” – by Dr Alicia White, summarizes some of best practices for MBG.
- Good doctors and good health insurance are more than the sum of the parts. Without a good doctor, such as Dr. Camille Roberts, it's doubtful that this condition would have been identified. Without a good health plan, such as the one we have through Fallon, I wouldn't have been able to have these regular visits that made the diagnosis possible. As I've noted before, the initial discovery of my melanoma came during the free annual physical that's a part of the Fallon plan.
3 comments:
Wow. Tough news, but there are some bright spots: you know what you're dealing with and the "cure" is relatively easy (at least as compared to other cures).
I think it's always challenging to adapt to a new diet. Fortunately, these days, there are lots of people eating gluten-free.
I imagine there's plenty of ideas out on the web about it and even some good cookbooks. (Just looked at amazon and there are a number of cookbooks.) A good health food store can help with ideas. Whole Foods has shopping lists for specialized diets. And restaurants such as Elephant Walk are extremely aware of specialized diets.
So I guess the good news is that while this will be challenging for you, you live in a world where at least some people have met the challenge before you.
I'm glad you have a diagnosis and I hope you feel better soon.
My mom did gluten-free a few years ago when the doctor diagnosed her with lupus, which we still don't know if that's what she had/has. The silver lining of that was that THAT was what got her into cooking. She had to get creative with recipes and that's how she developed her interest. (If it were me, I'd probably starve). Anyway, she stopped doing it after a few years, and it hasn't seemed to matter. In the meantime, I know that there are a ton more of gluten-free options in terms of ingredients and recipes than there were just a few years ago.
MBG is a real issue, several years ago I went through being diagnosed with Hepatitis C, performing research on the tubes is ovten overwhelming. The folks with the most to say often have it the worst, or think that they do in any case.
Reading things that you mention, peer reviewed articles are great, but it can be like a quick sip from a fire hose.
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