Many years ago I was diagnosed with IBS (constipation). I was also diagnosed with eczema. I have had issues with fatigue, fogginess, depression, to name a few other symptoms. Last August I had surgery to remove a cyst on my pituitary gland. In October I started having severe abdominal pain. I visited the ER and they thought it was due to an ovarian cyst, ovary was double the size it should have been. They were going to perform surgery that night but I declined and opted to see if it decreased in size in one month's time (no immediate danger to my health). I understood that if the pain got worse, I was to go in sooner. Anyway, after that month the cyst had disappeared but the pain remained. The doctors did a CT scan and found nothing. They were going to do a colonoscopy but the GI doc said it was not necessary. I was referred back to my GYN and he wanted to open me up and do a diagnostic surgery. I was put on the schedule for 2 months later. While at that appointment my husband asked about going gluten free (we had heard a story from someone we know who was experiencing similar symptoms) and the Dr. said it couldn't hurt. They DID NOT test me for celiac disease before going gluten free. I even consulted my PCP who was out of the office but the Dr. filling in for her said, "it couldn't hurt." The pain, along with other symptoms, disappeared after about 10 days of going gluten free. My surgery was cancelled and I am still gluten free and symptom free!! I just wish they would have done a simple blood test to start. Do many doctors look for celiac?
My question is how to proceed with a diagnosis? The blood test is no longer an option as I started my gluten free diet in December 2012. An endoscopy might not show anything, perhaps any potential damage started to heal after being gluten-free for 5 months. Will a Dr. even refer you for an endoscopy if no blood work? I had a weekend in March where I thought I would test it by consuming gluten and I was sick (pain, constipated, lethargic, depressed) for a week! I never want to have gluten again (even though I want it, nothing is worth the effects!) so I'm not sure how to get tested or if it is really important. This is why I brought up the eczema...could eczema and DH be mixed up? The "eczema" has been clearing up slowly since removing gluten and I read that a dermatologist can do a skin biopsy to determine if it is DH. Combined with my other symptoms would a diagnosis of DH be enough to diagnose me with celiac?
I didn't have pain from gluten (even though I had many other symptoms) until after my brain surgery last year. I've read that certain stressful experiences can trigger celiac disease. Does anyone have any experience with this?
One other thing: before I knew to check medications, I took some Advil Liqui-Gels. I had a reaction about 12 hours later. I knew it was from the Advil because I was keeping a very detailed food journal. I checked online and sure enough, they contained gluten. This might sound dumb, but can I be that intolerant to gluten without having celiac disease? I mean, how much gluten is really in 2 capsules of Advil??
At my last appointment, my doctor basically said if you know that gluten is causing issues, just keep to a gluten free diet. While I plan to do this for the rest of my life, an answer either way is important to me, for some strange reason. Any thoughts/suggestions would be much appreciated.
Thanks for taking the time to read my wall of text and any insight!!