Maybe a diagnosis

by Jimmie
(Lutz, FL)

Ten years ago (2000) I weighed 103 lbs, which is my average weight throughout adulthood. I was 47 years old then. For the last 10 years I have had issues relating to my digestive tract. I have also suffered bronchitis/bronchial pneumonia several times per year for the last 10 years.

My symptoms then were diarrhea lasting several weeks at at time, inability to eat much breads (including biscuits and cornbreads), unable to drink milk, eat ice cream, cream type soups, salad dressings, etc. without stomach aches and sometimes vomiting, and the inability to enjoy fried foods without digestion discomfort, and occasional anal blood spotting. I also would feel nauseous when I ate even a few bites of pies, candy bars, sweets in general but was able to drink sweetened ice tea by the gallons with no discomfort.

I underwent a colonoscopy and endoscopy and stool sampling and enough blood work that nearly prompted me to begin wearing the garlic necklace and carrying a wooden stake. All results showed 'nothing wrong'.

I gave up on doctors and went about my life trying to avoid foods that made me feel nauseous, created stomach cramps, very loose stools most of the time, etc. Not knowing what was happening to me, I continued to eat foods that caused less of the symptoms rather than to completely eliminate them as I had to eat something!

I lost down to 88 lbs. No one was concerned about the weight loss and my doctor said it was probably stress related.

In 2005 I suffered a blood clot in the right calf area and spent 4 days in ICU where they checked out every orifice of my body as well as took enough blood samples to fund the nearest blood bank for a year! I lived, weighed 88 lbs. and they sent me home on blood thinners and pain meds.

Four years ago (2006), I was in a major car accident and all kinds of tests were done to make sure that I was going to live and they patched me up and sent me home with wonderful pain meds, neck brace, stitches, staples, and referrals to other doctors for follow up.

In January 2010, I weighed 84 lbs. and could barely eat anything that would keep a normal person at a reasonable weight. I had practically become a vegetarian and thought at least then I would get the nutrients my body needed even though I had to eat 6 or 7 times per day.

The weight loss escalated and I now weighed 80 lbs. Back to the gastroenterologist (same one as before) and more testing resulting in 'nothing wrong'.

I found a new primary care physician, who sent me to a hematologist whose first question was "Have you ever heard of Celiac Disease?" Of course I had and was learning about it due to trying to self diagnose myself. :) It seems I was suffering from malabsorption of vital nutrients from my food and daily vitamins.

It seems all of my symptoms were related, and the fact that my iron level was now almost transfusion state, B12 well below the average, folate almost non existent, and I now had severe osteoporosis in my left hip and spine.

She also told me that my blood work from each testing, car accident, blood clot, etc. showed that my B12 and iron had been below normal limits for the last 10 years and that the platelets were so high, 546,000, that I was close to stroking or heart attack. I was having difficulty breathing most times as well and this had become progressively worse in the last 6 months.

The tests that had been done through all those years showed osteoporosis in 2006, spot on lung that had calcified (not a threat of cancer), and many other things that should have raised concerns with any physician.

I was thankful for my new primary care physician who emphatically stated to me (after she had me do a Well Woman exam, blood work for current limits and status, and chest x-ray for a comparison to Jan. 2010) that she had reached the end of her knowledge base for clarity of a diagnosis and referred me to more capable specialists.

She is in constant touch with the hematologist and the rheumatologist now and keeps track of me as if I was her child. What a doctor!

I immediately went on a gluten free diet and since then I have gained 5 lbs., my breathing has improved, I had an iron infusion, B12 shots daily, weekly and now monthly. I eat about 2 loaves of gluten free bread a week, enjoy gluten-free pastas, drink/use lactose free milk, make my own butter, and use range free eggs. I still can't eat eggs by themselves but in recipes they are not a problem. Can't figure that one out yet.

Have I been professionally diagnosed? Nope. Has the blood work in the past proven anything? Nope. Do I feel better now? OH YES!!!
Do I have Celiac Disease? Who knows? :)

Further testing to follow after 3 months from the iron infusion. We shall see but in the meantime....I am gluten-free!!