Any doubts I may have had about this NOT being Celiac disease have been removed. I made a huge mistake yesterday and I'm paying for it.
We were supposed to go to a friend's house for a cookout yesterday afternoon. Yesterday morning, I made some macaroni salad with gluten-free pasta to take with us (I wasn't going to tell anyone it was gluten-free to see if they would be able to taste a difference) and I decided to have a cup of it as part of my lunch.
I didn't read the ingredients on the jar or mayonnaise; I just assumed that it would be gluten-free. That was a BIG mistake.
Half an hour after I ate it, my belly started aching. All I could do was curl up in a ball on the couch - it was so bad I had to take prescribed pain medications and Hubs made what he called a 'command decision' and called our friends to let them know we wouldn't be attending the get-together. He asked me numerous times if I needed to go to the ER (something he doesn't usually do).
It wasn't just the belly ache, I felt lousy in general . . . just like I had been feeling before I got diagnosed. I had my kid read the ingredients off the mayonnaise and pickle relish jars:
Her: " Eggs, oil, vinegar....."
Me: " Does it say 'distilled vinegar?"
Her: "Nope, it just says vinegar"
Me: "Oh no....."
Today I have spent more time on the loo than I have off of it. My belly still hurts, I'm mildly itchy, my fingers, knees and hips ache and whilst I don't feel as bad as yesterday, I don't feel great either.
Lesson learned: when in doubt, don't eat it - and don't assume that something is safe. From now on, if it's got a label on it, I'm going to be reading it. If it's something somebody else made, I'm going to be asking questions. If there's any doubt whatsoever about whether it's safe or not, I'll just go without.
My doctor wants me to do a capsule biopsy test so he can visualize the rest of my small bowel (he wants to make sure I don't have a colitis as well as celiac and to nail down the celiac diagnosis. The biopsy results were 'highly suggestive' of celiac disease, but I was sero-negative)), but in order to do that and get accurate results I'd have to eat a full (meaning gluten included) diet for at least 2 weeks prior to the test. After yesterday's experience, I'm incredibly reluctant to do it. To me, it's pretty clear: I went gluten-free and saw a cessation of some symptoms, a minimization of others and a steady overall improvement. I ate food containing gluten (albeit inadvertently) and the symptoms came back. I don't want to go back to feeling like crap all day every day again.
Will the benefit of having the capsule scope outweigh the drawback of feeling ill and downright miserable again? If he suspects a colitis, can't we just start treating it? I really don't know what to do.
Anyone have some advice?