Posted , 4 users are following.
Hi all. I'll apologise before hand for the length of my post. Here goes.
For as long as I can remember, I've always had a nervous bowel. Would always manifest as loud noises and diarrhoea. I useually had no other symptoms that went alongside this apart from occasional acid reflux and heartburn. Last may, I started to get abdominal pains on the right hand side under my ribs. Docs thought it could be my gallbladder and sent me for an ultrasound. I got the ultrasound in June. No stones found. A couple of polyps but otherwise ok. Radiologist that done the us could not see my pancreas so she sent me for a ct of abdomen. I got this done the next week and It came back fine.
During June and July, the right abdominal pain started to shift to the centre and left upper abdomen. I began to feel week and tired. I was constantly hungry. Felt like I was not getting enough energy from my food. I was referred to a gastroenterologist in July. They took a load of blood tests from me. Coeliac blood test was included in these. They all came back normal. No other tests were done and I was discharged with a diagnosis of ibs.
I was not happy with being fobbed off as a lot of my systole didn't fit with ibs. I persued other potential causes of my symptoms such as chronic pancreatitis. Had faecal elastase sample sent to the labs. This was fine. Also, my blood work didn't lean towards pancreatitis. I paid privately to see an endocrinologist in October. He was good. I have an under active thyroid that I have known about for a long time. He said that people with under active thyroid have a strong chance of developing coeliac and that the blood tests miss a lot of people. This piqued my interest. He told me to go gluten free. I was hesitant to do this as if I was going to have any further tests, I would need to include gluten in my diet. I cleaned up my diet a little and cut down on gluten. During this time, I returned to my go and asked for another referral to a gastroenterologist. I seen the gastro in November. He again said that I have IBS but I convinced him to offer me an mrcp and an endoscopy. Had the mrcp done on December. This was entirely normal so no problems with bile ducts, pancreas or liver. Except a fatty liver and raised alt that I've known a list for 2 years. I've just had the endoscopy 2 weeks ago. He took samples from stomach and duodenum. Said I have gastritis and duodenitis but I return for my biopsy results and to discuss a colonoscopy next Monday. I'm hoping that they find coeliac in my biopsy. I know that sounds a little strange but for 9 months, I've been in daily discomfort and I just need a diagnosis so that I can get on with my life.
Here are my symptoms.
Dry itchy skin and dry eyes that comes and goes
Diarrhoea every Morning
Aching joints/muscles. Muscles get tired easily.
Abdominal pains mostly above belly button on both sides but feel it more on the left side. Sometimes twinges when I move in certain directions on left side only.
Low vitamin D levels. Doc prescribed bit supplements
Beltching and lower gas a lot.
Bloating. Feel like a balloon being blown up and let down on left side of abdomen.
As you can see. Most of my symptoms fit for coeliac.
You guys have similar experiences of negative blood test but positive biopsy? I'm Interested to know how often this occurs.
Thanks for reading and apologies for the length
1 like, 15 replies