I’ve had a hard time finding anything online where people talk about symptoms of celiac and how to deal with them – this is most likely because there are lots of different symptoms and it affects people in different ways. I consider myself relatively lucky to be diagnosed as many people go through years of problems before finding an answer. In retrospect, I can think back to many times that were most likely caused by gluten.
This time, this “flare up” shall we call it, has been the worst. I got sick while we were on vacation in the Dominican over Christmas and although the worst of it went away in 24 hours, the stomach ache didn’t seem to go away. A week into the new year and it got worse. That’s when I started going to the doctor. I thought I caught something in the DR – h-pylori. My stomach hurt, a burning, throbbing, and sometimes stabbing pain. It got worse when I ate. It felt better when I laid down flat. It hurt more when I laid on my side. It was debilitating. I’ve missed work. I’ve worked lying flat on my back, in my bed. I had to take an extension on the last class of my degree… it sucked.
As for dealing with the symptoms – this is only my first experience, but I think the only answer is clean eating and patience.
The doctor prescribed me different medicines over the past six weeks of pain. At first, because we thought I caught something in the DR I took five days of antibiotics. I think that made it worse! The stomach pain got progressively worse, not to mention other lower down things I won’t go into detail about. I was back to the doctor weekly. Next was acid-blockers and a referral to a gastroenterologist for a scope and biopsy thinking we were dealing with h-pylori – and more blood tests, including one for celiac disease.
When I heard the positive results for celiac disease I was shocked. But not really surprised. I’ve had unexplained stomach aches for years. I assumed stress was the cause, and a weak immune system caused by mono at 22, but now that I know I can see the connection – I’ve had celiac disease for years, and this was just the culmination of years of damage to my small intestine.
It has been three weeks since the positive blood test. From there I had to wait a week and a half with the odd orders to not change my diet too much, even though it’s what was making me sick, because it would change the biopsy results if I removed the gluten before the test. It has been almost two weeks since the scope, and one week since the confirmation that yes, I do have celiac disease and I’m finally starting to feel better – a little every day. I was impatient though and wanted the doctor to give me something to deal with the pain. He gave me a stronger acid blocker and I had a BAD reaction – severe abdominal pain, racing hard, difficulty breathing and dizziness. I made the conscious decision that day that “FOOD IS MY MEDICINE” – the only cure is a clean diet. I stopped taking both the acid blockers and anti-spasm medicines and have focused on eating small amounts frequently throughout the day, tracking the calories on Myfitnesspal to get to 1200 calories a day as dictated by the doc.
I’ve been frustrated about what I can and can’t eat, but I can FEEL it making a difference. It does take a lot of work and planning and an open mind, but I can’t wait to feel better than I have in years.