Share this page: 
Subscribe to FREE Celiac.com email alerts
Got a battery of blood tests, hydrogen breath test, capsule endoscope, consultation with Neurologist (some tests), consultation with ENT (scope of throat, hearing test).
I was originally DXed Celiac in late June 2011, with negative blood test and severe damage noticeable with naked eye when scoped. Went gluten-free and had some improvement of symptoms, but continued to lose weight and grow weaker. Reacting badly to many additional foods and having to omit them. Night sweats, anxiety, angina, muscle weakness continued.
Had a second scope by a different GI at 6mos gluten-free and was told my damage was severe and possibly refractory sprue. Had gene test done (DQ2.2) and gallbladder function test(30%). I asked for a SIBO test and was mocked "Did Dr. Google tell you to ask for that?"
Was told I couldn't have Celiac with those genes and to consult a surgeon about having GB removed. That GI was done with me. I got my results of the tests by calling them. They canceled my follow up appointment after getting my gene tests. Test result said "equivical" NOT negative which is what I was told.
Was referred to Mayo in MN. Dr's office screwed up and arranged my visit with FL Mayo. They did an extended endoscope and tested for Whipple's disease. It was negative and they said negative for refractory sprue. Was put on steroids and referred to Mayo MN.
Don't know what blood tests were done, hydrogen breath test captured a high methane reading, gallbladder ultrasound showed no stones or blockage, capsule endoscope showed greatly improved villi from steroids, no evidence of Crohn's, slow transit time.(capsule should pass in about 8 hours. It's been 6 days and it hasn't passed.)
Failed some of the Neuro tests, (balance, short term memory, cognitive issues) but was told that would be consistant with a gluten exposure I had Mar 20, and still recovering from.
I slowly healed after a gluten cc in January, so was told if I heal over time it's more consistant with Celiac than a Neuro problem. Told to come back in 4 months if not back to normal from the more recent exposure.
ENT found no outward evidence of ear problems, but wants me to come back May 22 for a week's worth of balance tests. I'm not sure if I will go or not? It's an expensive trip!
Dr. Murray said he's unsure of my Celiac Dx with the genes I have. He said DQ2.2 is unlikely to be Celiac, but he's not ruling it out.
The high methane reading would indicate SIBO, and C would indicate SIBO.
SIBO could explain additional food intolerances. The bacteria emit toxins as they feed and cause reactions in the body and brain. It could also cause villi damage..severe if left untreated for a long time.
BUT..if my problem is only SIBO, the villi wouldn't heal from being on steroids, so there's something else going on.
I was on PPIs for years, and took myself off them in the hopes of healing my GB. Turns out, I'm more likely a low acid producer and shouldn't have been on PPIs? Dr. Murray said he wouldn't advise having the GB removed. It may improve.
He prescribed an increase in the steroids, an RX digestive enzymes, and a round of Xifaxin. I told him I was given a 10 day treatment of Xifaxin in Jan, and apparently it didn't work? He said we're trying it again, followed by Cipro, and another, etc. until the bad bacteria are gone. (I don't know how I'll know if it worked or not?)
I *should* get some foods back if the bacteria that were causing toxins from them are wiped out.
One of the blood tests he did had to be sent out and takes 4 weeks to get the results. I don't know what it tests for, but got the impression that we want it to be negative!
He said he wants to get me healthy and then maybe try a gluten challenge down the road some time to see what happens. Since my symptoms have changed to very severe Neuro, which lasts for a couple of months, I don't want to challenge! He agreed that it might not be a good idea, and to continue gluten-free.
About 5 hours into our trip home my hubby noticed there was a message on his phone. It was Mayo wanting me to get an additional blood test before I left. When we called back they said it wasn't neccesary to turn around and come back. She'd check with the Dr. and see if I could get the test here and have the results sent there. I haven't heard back.
I agreed to be a part of a Celiac study. They drew extra blood for tests. They're looking at more genes, and looking for AI diseases that go with Celiac.
At our first meeting, Dr, Murray askd about past medications I had taken. Some *can* cause ongoing problems even after going off them. The tests I had seemed to rule that out as a cause?
My local pharmacy doesn't have the strength of Xifaxin he ordered, or the digestive enzymes, so I'm waiting for them to come in. Fingers crossed that they help!
