Hi,
It started about 1.5 years when I had my first flare.. After eating a pizza (would not usually eat a whole one to myself!). I woke up in so much pain about 4 in the morning…felt like I had a massive inflammation in my abdomen that moved into my intestines and then my bowel as food moved down. Because this was the first time it had happened doctors though some kind of food poisoning..
Anyway has repeatedly happened. Feels that it happens: usually when I have a combination of gluten and feeling a bit stresses. The last major episode, had me in hospital the pain was so bad, I was rocking on the floor with stomach cramping, tired to take a paracetamol stomach too tender, vomited it up. Again inflammation moved from abdomen to bowels, a lot of pain. But this time it didn’t go away for a while. Had such bad diarrhoea, was incontinent for 2 days and had to wear adult nappies. My bowel movement eventually went back to normal, but pain got worse in my pelvis.I lost about 5kg in 4 weeks as had no appetite and was in pain. MRI scan showed a 6 cm abscess in my pelvis next to ovary- drs thought caused possibly from inflammatory bowel disease that moved through to pelvis. Anyway this has been treated with antibiotics (and it wasn’t an inflation due to an STI as these tests were negative).
Cut a long story short I have now cut out gluten as I don’t seem to get flare ups when I’m off it. And I do seem better- could it be celiac diseased? Problem is now, my symptoms were so bad I don’t want to risk eating gluten again- which I would need to do to get the test (as I read you need to have gluten in your diet for 4 to 6 weeks?). I am on the waiting list to see a gastronomist on the NHS in January and get a colonoscopy for suspected IBD. Anyway anyone else had severe symptoms like this with celiac…? Does it sound possible? Any advice appreciated as this is all a bit new to me. Thanks.
I am in the process of sorting out my, what i think is, IBS. I was reading up on celiac disease today (as i feel i may have this and not ibs as i get diarrhoea often) and i read the same as you about having to keep eating food which contain gluten in the diet in order to have a blood test. I think for the sake of some (putting it mildly) discomfort it is worth eating these foods so you can be tested. If the results come back positive to celiac disease at least you will have your answer and you will be able to better manage your symptoms. I am going through the same thing myself, and am going to request a celiac disease blood test in 2 weeks when i next see my dr. Until then I am just going to have to suffer