Is MRI of bowels or gall bladder scan warranted?

[brandy]

Hi everyone,

Overall I'm doing pretty well and have been off of Ento for 6 weeks now and have submitted stool for Enterolab. As a reminder I've been GF Oct 1 2011 and DF Jan 1 2012 and soy and the other thing free forever.

I have the following questions.

In July 2011 I had an ultrasound of gall bladder at emergency walk in clinic due to CD. Emergency doc (former Nasa astronaut doc) said gall bladder is normal just have a polyp but it is normal and not causing CD. Nasa doc referred me to GI doc #1. I got disc of gall bladder scan but did not have a "report." GI doc #1 wanted another gall bladder scan. I basically refused because I had just had one two weeks previous and it seemed like a waste of money but I gave GI doc #1 a disc of the gall bladder ultrasound. In recovery room after colonoscopy July 31 2011 GI doc #1 told boyfriend I needed to have a gall bladder scan so that the radiologists in town could make their "boat payments." At mandatory site visit 4 weeks later to get on Entocort again I was pressed about another gall bladder scan. I refused to do one again as I had just had one and thought the Nasa doc was credible. We agreed that I would get one 6 months later. At this visit GI doc #1 told me that joint pain "did not exist with CC." and he cut me off b/f I could even talk about the extreme dizziness, anxiety and tingling I was getting up my arms (pre entocort.)

Question #1. Is baseline gallbladder ultra sound warranted? i.e. do I need another one to get a "report" to measure polyp.

In January 2012 despite the fact that I am hugely getting better I caved to getting a 2nd opinion from GI doc #2 due to EXTREME PRESSURE FROM FRIENDS AND WORK.

Here is GI doc #2's Clinical Interests:

Inflammatory Bowel Disease Autoimmune Gastrointestinal Disorders
Eosinophilic Esophagitis Eosinophilic Gastroenteritis Eosinophilic Colitis
Mast Cell Activation Syndrome Mastocytic Enterocolitis
Food and Environmental Allergy and GI disorders

GI doc #2 did not like the fact that the pathologist report did not list mast cell numbers so GI doc #2 wants the slide of biopsy to look further. I knew from this forum that that was a good sign. GI doc #2 is doing blood gene test for celiac genes. I knew I could get that from Enterolab but whatever. GI doc #2 is doing "deeper" blood testing for celiac which I knew would be useless as I've been gluten free since Oct 1. GI doc #2 also did bloodwork for food sensitivity--hopefully MRT but I was not on my "doctor visit game" so I could not remember the blood test that everyone is getting. GI doc #2 also wants to do an MRI of the abdomen to "further test for celiac." It should be noted that my mother has been diagnosed celiac for 25 years. GI doc #2 also went down the list of autoimmune diseases that are frequently mentioned here so I knew that was a good sign.

Question #2 is the MRI of the abdomen warranted?

The toughest thing to date has not been the CD that has healed or the months and months of neurological symptoms it has truly been the extreme pressure from friends and employer to go from doc to doc for a magic pill or do the Mayo clinic thing. Overall I'm much improved but for me it has "taken awhile."

GI doc #2 possibly might be a resource for someone with mast cell issues but it is too soon for me to make a recommendation and GI doc #2 is at a teaching institution and really they should give you a discount or see you for free for training the medical students. Appointment with GI doc was at 2:00 pm on Friday afternoon and the boyfriend and I did not leave the institution till 6:30 pm Friday afternoon---kind of ridiculous for only a consult and having blood drawn.

Your feedback is appreciated, Brandy

[tex]

At this visit GI doc #1 told me that joint pain "did not exist with CC."

GI doc #1 doesn't know what he's talking about, obviously.

Question #1. Is baseline gallbladder ultra sound warranted? i.e. do I need another one to get a "report" to measure polyp.

Are you sure the report is not on that disk? Usually they are.

Question #2 is the MRI of the abdomen warranted?

I wasn't aware that CD, (celiac disease), could be diagnosed that way. Surely, that's just a convenient and expensive way to rule out other issues. With all his "interests", maybe he's just looking for patient data to add to his repertory. At least he seems to be interested in new developments - that puts him head and shoulders above at least 90% of his peers, I would think.

and GI doc #2 is at a teaching institution and really they should give you a discount or see you for free for training the medical students.

That's what I think, but the hospital I use is also a teaching hospital, and if anything, they seem to charge extra. I'll say this, though, since my last surgery was for a somewhat rare condition, they put me in a super-nice room, that was easily accessible, (for their own convenience, I'm sure), rather than one of the cramped, hole-in-the-wall rooms in the back 40, that they stuck me in earlier.

Tex

[Deb]

and GI doc #2 is at a teaching institution and really they should give you a discount or see you for free for training the medical students.

Oh, I don't know.....I always felt pretty special when I'd have my feet in stirrups and 14 residents would come to look!

[brandy]

Hi Tex,

Thanks for the feedback. When I googled MRI to diagnose CD the only the thing I came up with after going thru 15 google pages is seems to be rarely used to look at the brain for damage in the brain due to CD. So after my googling I thought perhaps I misunderstood GI doc #2 and she was going to look at my brain. (From my google research I learned you can get brain damage from CD that show up as white spots on MRI. Then I got the MRI prescription in the mail and sure enough it said MRI of abdomen. I'm going to get another copy of the gall bladder disc and look at it myself and cancel the MRI for now.

I'm doing well on GF, DF so will just stand by for my Enterolab and what is hopefully MRT.

Brandy

[tex]

(From my google research I learned you can get brain damage from CD that show up as white spots on MRI.

My brain shows those white spots, but when I tried to convince several neurologists whom I have consulted with, that those spots, and the peripheral neuropathy that they diagnosed me with, that those symptoms were from gluten damage, they all adamantly denied that it was even possible for gluten-sensitivity to cause such things. None of them could find a reason why I would have peripheral neuropathy, (or the white spots on the brain scans), but they still refused to even consider that gluten might be involved. Apparently their training is antiquated. One, (the head of the department), even had a student in tow, who also examined me, so you know it ain't likely to get any better at that hospital.

I'm doing well on GF, DF so will just stand by for my Enterolab and what is hopefully MRT.

That sounds like a good plan to me.

Tex