Week 17: Healing

The line between illness and healing has been a wide and blurry one for me. There has been no particular day that I can say “this is the day I began to heal.” Rather, it has been a process of careful decisions, conscientious effort, and my body’s unique timeframe. It is a process that I suspect will continue for some time, and may take many more weeks or longer. But I can say, that life is slowly returning to “normal.”

This past week was not a bad week. My sleep has actually improved (if only by minutes) and even though there were a few quirky things that occurred this week (see ODD THINGS), there was nothing to really worry me enough to consider mentioning to any health care personnel.

Early in the week I received a phone call from the gastroenterologist who performed my EGD, the stomach and small intestine biopsies, and the genetic screen for celiac disease. She told me that she had done the screen for the two genes that most commonly show celiac and that I had neither gene. She went on to tell me that even though celiac can be found on other genes, in her opinion the likelihood of that was extremely unlikely and rare. She stopped short of saying I did not have celiac, and in fact said it could still be a possibility, but she was feeling it may be gluten intolerance or even an allergy to wheat. Regardless, she recommended a follow-up with the internist who diagnosed the celiac and further recommended a visit with a dermatologist regarding the rash on my right forearm.

Not having the gene for celiac made me rethink all of my symptoms from the family history of digestive disorders, the onset of the rash five years ago, to the visits to the ER, the myocarditis, the osteopenia, the general symptoms of malnutrition and malaborption (inability to absorb nutrients which went on for years). What other illnesses or diseases could cause these types of symptoms? Why, after almost four months of going gluten-free, is my skin beginning to feel soft and supple again (after a lifetime of rough and bumpy skin)? Everything still seemed to point to celiac disease. Could a gluten intolerance have the same affect on the small intestinal villi?

I believe that I was at my sickest in mid-January of this year—about a month after going g-free, and about two-and-a-half months after radically changing my diet. Originally thinking I had GERD, I had stripped my diet of all dairy products, fatty and/or fried foods, sugar, citrus, and acidic foods. Six weeks into the GERD diet, I further eliminated all gluten. A month later, I was suffering from congestive heart failure, and an almost nonexistent immune system. Could a radical change in dietary habits cause this type of strain on my heart?  Is it normal to get sicker on a gluten-free diet before getting better?

Being a member of two different celiac disease support groups, I posed this same question to the members there and received a resounding YES! I was surprised by the number of people who experienced the same story, some of which had the exact same symptoms that I experienced. Coincidence? Maybe, but it is something to think about.

Also, still having issues with the Vitamin D (ergocalciferol) and its propensity to make me feel bloated and distended, I did some research and found that large doses of magnesium may be helpful until the distension passes (http://www.easy-immune-health.com/is-constipation-a-side-effect-of-vitamin-d-comments.html and www.ctds.info/magdiet.html), so I determined to ask the doctor about this during my follow-up appointment. Could I be slightly magnesium deficient? Toward the end of the week I resorted to the good ole’ fashioned milk of magnesia cure, which worked beautifully by the next morning.

My follow-up appointment with the internist went very well, and though he gave me the option of testing myself with small amounts of gluten, he stuck to his original diagnosis of celiac disease. There are just too many other factors that point to the disease (not discounting the possibility of a gluten intolerance), and the genetic tests are not the best diagnostic tool, which made sense to me.

He also told me that the Vitamin D capsule I’m taking is made from pig’s feet (the shell coating) and that I may be having difficulty digesting it, and that when I take the Vitamin D, I should cut it open and put it in applesauce. He also told me to take 600-800 mg Magnesium with it-- that high a dose because only about 10% is actually absorbed through OTC supplements.

ODD THINGS THIS WEEK:

• Random hives mostly on my fingers
• Inner trembling returned this week, though fairly mild.
• Pain under mandible off and on for a few days.
• While at dance performance, my right ear started aching. It was a generalized ache—one I at first mistook for the beginning of a headache. But it occurred later and was more distinctly in the right ear and not a headache. This has been happening every day since then. I hope it has nothing to do with the prosthesis. In the 21 years since the prosthesis was put in place, I have never had a problem with that ear.

My “physical therapy” continued to go very well this past week. All treadmill walks were perfectly normal and without stress. Totals for the week include 180 minutes of Pilates, 100 minutes of weight-bearing exercises, and 18.94 miles walked.

So even though the road between sickness and health has been bumpy beyond belief at times, and sometimes the road nearly imperceptible, the rocks and potholes are gradually thinning out, and I am beginning to see more smooth pavement than gravel.

It is a good feeling.