Monday, December 13, 2010


December 10 – Wisdom

Wisdom. What was the wisest decision you made this year, and how did it play out?

(Author: Susannah Conway)

Oh, this one is super, super easy.

I went gluten-free on September 1st. To say my life has changed would be the understatement of the year. I'm never looking back, not ever. Sure, I'm tempted sometimes by the last few bites of "pizza bones" on my kids' plates, which I always used to eat. I'm a little sad at gatherings when the hostess brings out the plate of homemade cookies and, like a leper, I sit there and don't take any. And gluten-free bread is disgusting. Not even worth the attempt, I've learned.

I had been suffering from multiple vague (and sometimes not-so-vague) physical symptoms for years -- I'd say things got really bad during my second pregnancy, in 2004. That pregnancy was incredibly stressful for a variety of reasons, and other than bearing an amazing little boy who lights up my life every day, it really wrecked me. During that pregnancy, I developed a rash. It was like islands of tiny blisters in various places on my body. I had no idea what caused it, and was told first that it was a common condition of pregnancy (this by a very prominent and talented dermatologist). My midwife disagreed but suggested it might go away after my son was born. It didn't. It got worse, at times covering 2/3 of my body, then waning, then taking over my skin again. I was prescribed potent steroid ointment to alleviate the itching so that I could sleep at night.

Sleep. Oh, how sleep eluded me. With a newborn and a toddler (my first two babies are less than 22 months apart), both nursing, plus a full-time job I had to return to at 12 weeks postpartum, plus no family or real support network nearby, I was exhausted. Is there another word for exhausted? Cooked. Done. Nothing left. And, I was in pain, constant pain. Some suggested I had postpartum depression. I was certain I did not, since I felt incredible joy when I was with my children, even through the debilitating exhaustion. My doctor visits, tests, and dead-ends started in mid-2005, and they included:

  • bloodwork (found serum ferritin to be dramatically low so began liquid iron supplements)
  • thyroid, checked probably 7 times in 5 years. Normal.
  • My blood pressure at one visit was 70/45. Was told to add salt to my food and drink licorice tea.
  • Tests for Addison's disease, which came back "subclinical" but still within normal limits.
  • a colonoscopy, because of severe rectal bleeding
  • a colposcopy, even though I'm HPV-negative, because a Pap came back "abnormal"
  • several checks of blood sugar and pancreatic function ... pre-diabetes at one point when fasting sugars were between 100-120
  • nutritional evaluation because my weight, after my 3rd baby was born, refused to come off despite smart eating and lots of exercise
  • repeated biopsies of this unbearable rash: looking for fungus, cancer -- both negative
  • tests for rheumatoid factors and other markers for rheumatoid arthritis
  • questions about whether I might have contracted an STD (which I understand is smart from a public health perspective ... but anyone who knows me sees how incredibly ridiculous this tree is and doesn't bother to bark up it ... alas, the tests were run and of course, negative)
  • stool samples (always a good time)
  • tests for kidney function, which came back "mostly normal" but no doctor would attribute the variations to anything other than dehydration or other commonplace variable
  • bone scan, to rule out osteoporosis
  • x-rays of my pelvis and lower back, because standing and marching hurt like crazy, as did sleeping
I had been treated for the skin condition, which they considered "autoimmune" and told me to expect it to last 18 months to 5 years. When it raged through my 3rd pregnancy, the "autoimmune" theory was shot full of holes, because most autoimmune things go into remission during pregnancy. This got worse. I was also treated for systemic fungus and or yeast, neither of which I actually had.

Finally, in late 2009 and early 2010, I had a doctor who promised "I won't rest until you're feeling better." Sure, he initially recommended Time Management for Dummies at an early appointment, but I didn't get angry at him. He suggested that I had an exhausting life. He wasn't wrong, but I knew my body wasn't just tired.

He arranged for me to spend 3 weeks at home, unbound by the band's crazy schedule, so I could sleep. I slept solidly, 9-10 hours a night for 22 nights. I still felt like I had been hit by a truck. Some mornings, I wondered if I actually felt worse for having slept so much. He also listened to my pleas and ordered a vitamin D panel. Finally, something came back with a result to fix: I was decidedly deficient in vitamin D. Perhaps this would explain a lot of the vague problems I was experiencing? I began mega-dose supplements. My level rose, and I began to feel slightly better. I thought we had cracked it, but then, a plateau. A big one, that wouldn't budge. My doctor, who was leaving for a new duty station, referred me to an endocrinologist. She ran a lot of tests, to include a 24-hour urine cortisol test that required me to collect and refrigerate all of my ""voids" for a 24-hour period, then bring the big jug of "void" to the lab for turn-in. (Came back within normal limits but sure was memorable.) She asked whether I had ever been evaluated for celiac disease.

Within hours of returning home from that initial visit with the endocrinologist, I had scoured the internet and realized that, at the very least, I had a gluten intolerance. An endoscopic biopsy of my small intestine would be necessary to conclusively diagnose celiac disease, but I decided to skip that and remove gluten from my diet on my own.

I had a searing headache for nearly a week.

I lost 6 stubborn pounds in 10 days. My fitness test score jumped by nearly 40 points, which is huge for me.

My body stopped hurting, except for my right lower back and hip, which still hurt a lot.

I no longer have ANY gas (no, really, I just don't have gas anymore, and before, I had A LOT!!), bloating has gone way down, and GI issues after meals have completely stopped. No more wondering before a meal whether something bad is going to happen later. Now I can eat with confidence, most of the time. (Eating out is hard.)

My vitamin D levels are rising. I'm sleeping so much better. My mind is clear, no more of the debilitating exhaustion, confusion, and brain fog. It's gone. Sure, I still get tired, but I think I get "normal person tired" and I can recover from a busy week with a few good nights of sleep.

I'm happier. Is there a price on that?

I've been advised that a conclusive diagnosis is probably a good idea before I leave the Army. That would mean going back on gluten for a month before the endoscopy. The thought makes me want to cry, so, for now, I'm going to not think about it. Instead, I'm going to revel in the best thing I've ever done for myself: going gluten-free.

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