Sunday, July 4, 2010

Lesson learned

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?


MedicMatthew said...

Well, Blogger-Formerly-Known-As-NinjaMedic,

I would think that at this point in the game doing a capsule biopsy is nothing more than defensive medicine. Because, after all, It isn't a diagnosis until there's pictures!

From following the blog & Facebook & Twitter it sounds to me like you've managed to mitigate your symptoms by removing gluten from your diet.

I know I ain't do doctor or nothin' but it don't take no fancy book learnin' fer me to see that gluten is the root of the problem.

Eileen said...

The coeliac expert consultant in my husband's former hospital was of the opinion that if your symptoms were controlled by removing gluten (or in my case wheat) there wasn't any point going any further with other tests. OK - I know that's the NHS and they don't like to waste money on doing unnecessary tests but his argument was because I'd asked if, as my symptoms were suggestive of a dermatological form of coeliac disease, my concern was should I maybe have that investigated. Some people think you should have it confirmed as there is an increased incidence of colon cancer in coeliacs. This consultant is of the opinion that it isn't non-compliance with diet that's the problem but the genetic link is closely related for the 2 diseases - hence his attitude of: if your symptoms are controlled don't go making life even more unpleasant by looking for something else unless there are grounds for it. So, if it were me, I'd wait and see if it all clears up with diet.
And sheesh! DO read ALL the labels - I know it's boring but it's the only thing that works and even then there are pitfalls. Does the American Celaic Society (or whatever they might be called) have lists of safe foods? The UK one does and many of the bigger grocery store chains also have lists. Only trouble is they put everything in - so raw chicken, steak and fish etc appear and make the lists really rather long!
Hope you avoid another occurrence!