turbie replied to turbie's topic in Celiac Disease - Pre-Diagnosis, Testing & SymptomsI'm actually not sure which blood tests they ran on me, I'd have to look into that. But during both of the tests I had definitely been eating and gluten and was not any steroids. My GI now wants me to have a capsule endoscopy done so that she can have a better look at my whole small intestine for both the Crohn's and Celiac. I should be having that soon so when I'm back in the office I'll try to find out about my blood tests. A second endoscopy after I've been 100% gluten free for 6 months is also a very nice suggestion, I'll probably end up requesting that, both, to make sure I'm healing and double check the biopsy. I've never thought of my gluten-free diet as another tool to fight both of my diseases, but I really like the sound of that. A year ago I was so desperate for anything (I was taking so many probiotics/vitamins) and now I have my Lialda and a gluten-free diet. It's truly amazing how much can happen in a year and how much I've improved! I have gone through all the cabinets though and gotten rid of anything either containing gluten or that had the possibility of being cross-contaminated, bought all safe food, multiple gluten-free cookbooks/magazines and have slowly replaced the cooking ware. (By now I have all new cooking ware). I've really been struggling with this and accepting it since being diagnosed, perhaps I do need that little motivation but I do want to be healthy. So perhaps for now I'll play it safe, and be as gluten-free as possible then talk to my GI about having my endoscopy redone early next year and just see how it all goes from there. Thank you so much for both of your responses! I sincerely appreciate all of the advice! This was my first time reaching out to a Celiac community, or even anyone for that matter. I feel like it helped a lot, and I'll be sticking around because I need this positive support and motivation especially if this is to be my life from now on.
turbie posted a topic in Celiac Disease - Pre-Diagnosis, Testing & SymptomsI've been having a bunch of digestion problems and stomach pains that started around a year ago. I ignored it for a long while, convinced it was just in my head, but in November I gave in and went to get it checked out. They ran a bunch of tests, one of which was a celiac disease blood test that came back negative. I ended up getting sent to a GI doctor, where I had a colonoscopy on March 28th and was diagnosed with moderate Crohn's Disease. I started medication right away and have been on it ever since (Lialda, 2 pills twice a day). By May my stomach pain had gone way down and the pain I used to feel at least 4 times a day became very rare. My digestive issues (diarrhea multiple times a day and high urgency) also started dwindling, first the urgency went down and then the diarrhea got better. My doctor said my digestive system will never be completely "normal" so while my stools are still not completely normal, it's far off from the horrible diarrhea I suffered from. In order to make sure my doctor didn't miss any of the Crohn's since it can be anywhere in the digestive system and it had only been found in my large intestine, bottom of my small intestine, and anus so far, she scheduled me for an endoscopy at the beginning of June. After which she told me there was some mild inflammation, nothing very concerning, but they took a biopsy just to check. By this point I had been on my Lialda for a little over 2 months (and as I said above, was feeling much much better). Which is why I was completely shocked when a week later they called back to say my biopsy showed celiac disease. They ran another blood test on me which again came up negative, but since the biopsy is the gold standard for diagnosis, I was diagnosed anyway and ordered to begin a gluten-free diet, sent to a nutritionist, etc. Yet as I read more about celiac disease, I can't help but feel that this isn't me. They said my biopsy "strongly showed" celiac disease, but that just means I had villous atrophy, right? Crohn's Disease can cause villous atrophy, and my blood test for celiac disease was negative. So who's to say that this isn't more Crohn's as opposed to celiac disease? I haven't felt any different on my gluten-free diet, and I will admit to having a gluten filled roll 2 days ago yet I've had no symptoms or reactions to it. My stomach and digestion remained normal, I didn't get fatigued or have any other strange symptoms. I was just wondering if anyone can give me advice on whether or not you believe I should talk to my doctor and investigate this more? It just all seems too strange for me, because cross contamination seems to make some very sick yet I had a full roll and was fine. I'm not completely sold on the biopsy diagnosing me since I am 100% certain I have Crohn's which I know can cause villous atrophy as well...thoughts?