Endoscopy needed??

kb9oyo · Posted: Thu Oct 09, 2008 1:02 pm Post subject: Endoscopy needed??

I have a question for the group! Three years ago, when I didn't have any health insurance, I took part in the Univ. of Chicago screening in October. My score on the of the Human Tissue Transglutaminase IGA test was 27.7 with anything over 4 considered positive for Celiac. I had some other health problems at the time and without any insurance, I was forced to use Cook County Hospital with all of the fun and games that entailed. They looked at the test results and decided that a endocopy and biopsy weren't required at the time and just had me adopt a gluten free diet. They also prescribed some vitamins and calcium to deal with the other low figures in the various blood tests because the endoscopy was expensive and even if it were positive, they would only prescribe a GF diet. I am over weight and don't have any "acute symptoms". When I was a child (I am 63 now), it was thought that I might have celiac and my diet basically bananas and potatoes and milk. At that time, the thinking was that a child "outgrew" celiac, but might develop sprue later on as an adult. I never developed symptoms of sprue.

The question is now that I have health insurance, I need a colonoscopy for a different problem. I just asked my doctor if a biopsy and endoscopy could be done at the same time by the same doctor. He didn't have any particular objection, but said that it would be a problem because the biopsy and endoscopy were very specialized procedures and probably could only be done at a university hospital rather than our local suburban hospital. (I do live in the Chicago suburbs.)

Questions: Is there any point to doing a endoscopy and biopsy 3 years after starting a GF diet?
Is it such a specialized procedure that it couldn't be done in a "normal" hospital?

Thanks for any answers that you might be able to give me.

Sue B.
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Sue Beyer

ostrich · Joined: 30 Mar 2006 Posts: 4960 Location: Nebraska

celiacmaine-iac · Joined: 19 Dec 2007 Posts: 1352 Location: Maine

I can't imagine that any hospital in the Chicago area couldn't handle that procedure, esp. if done by a GI doc. The issue might be getting the biopsy interpreted correctly if the hospital doesn't routinely screen for CD. I think I would ask to speak to a gastro doc to see what they say first. Unless you go back on gluten the biopsy most likely would only show damage if you have been non-compliant with the GF diet, have refractory sprue, or have another condition unrelated to gluten, I think. Someone correct me if I'm wrong. The big question would be how long you would have to be on gluten again to see damage. I think you would have to decide how inconvenient you find the GF diet, to be willing to do a gluten challenge at this point. Also, how important is it to have a definitive answer for the sake of any first-degree relatives you have?
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Steph

kb9oyo · Posted: Fri Oct 10, 2008 4:07 pm Post subject: Endoscopy needed??

So, I had my consultation with the surgeon this afternoon. After what my primary care doctor had said, I was hesitant to bring up the subject of the endoscopy / biopsy with the surgeon. To my surprise, the surgeon brought it up first and asked if I had ever had one. I explained at the time, we had no insurance, so it hadn't been done. He said it was a good time to do it since we were already going to do the colonoscopy. It is now scheduled for Oct. 20. The surgeon said that there wasn't any point in doing a gluten challenge at this late date, so I should just keep on with the gf diet, but he would be sure to take multiple samples during the procedure. He has no problem doing both of the procedures at the local hospital close to my home.

Sue B.
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Sue Beyer

cultureslayer · Joined: 07 Apr 2006 Posts: 921 Location: NC

It can be done at a regional hospital, along with almost anything. At a regional hospital it depends mostly on the doctor's experience.

I had surgery to check for endometriosis and drove past two nationally recognized teaching hospitals (UNC and Duke) to go to the regional hospital because that's where the doc I liked had privileges. Problem with the teaching hospitals is the docs "know" they are the best and have a stick up their butt to prove it. Rolling Eyes

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Lauren
Pain is inevitable; suffering is optional.

ostrich · Joined: 30 Mar 2006 Posts: 4960 Location: Nebraska

Just like Steph said, I would question the doc's suggestion about sticking with the GF diet. Correct me if I'm wrong, but if you're truly GF your intestines would have (mostly) healed. Thus, when the doc takes samples he won't see any damage, and your test results will come out negative.

IMHO I would go back to a NGF diet as soon as you can.
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Ostrich :>--O==={

Time falls away, but these small hours
These little wonders still remain

kb9oyo · Posted: Sat Oct 18, 2008 10:43 pm Post subject:

So the endoscopy and colonoscopy was scheduled for Monday when I saw the doctor 2 weeks ago. I hadn't heard anything from the hospital since then, so I called them this afternoon about 1 pm. They did say that they were just now making their calls for the Monday schedule, but what was my name etc. They checked and I wasn't on the list! They said that my doctor didn't even have anybody scheduled. They suggested that I call his answering service. I did that and got an operator who said that he wasn't on call this weekend, but would be in the office at 9am Monday. He was only taking "emergency" calls and they couldn't contact him. I pointed out that I thought that I should be at the hospital by that time on Monday and that made this an "emergency"! Instead, they called the doctor who was on call whom I had never seen or talked to. (I had only seen the surgeon the one appointment.) She did finally call me back and listened to my tale. She must have managed to contact my surgeon, because an hour or so later, I got a call back from the head of the hospital's department who was very apologetic about the mix up. It seemed that he had only entered the info into his blackberry and nothing had been transmitted to the hospital. I should report to the hospital at 12:30 pm for a 1:30 procedure. At least I won't have to go through all of the prep for nothing. I was assured that he would be informed of the new time for the schedule. He had better show up or I am going to be really p****d at that point!

Sue B.
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Sue Beyer

aklap · Joined: 02 Oct 2004 Posts: 10608 Location: WI, USA

Holy crap Sue! I missed your update from yesterday. How frustrating!

I was coming here to wish you luck tomorrow. Looks like you'll still be going thru with it - GOOD LUCK!! We'll be thinking about you...sending good thoughts and positive energy your way.
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Al

“We cannot all do great things, but we can do small things with great love.” Mother Teresa

kb9oyo · Posted: Mon Oct 20, 2008 7:46 pm Post subject: Endoscopy needed??

I survived my procedures this afternoon, but I must admit that I have had more fun experiences. There was a small snafu with the check in which I did rather expect, but they did admit that they knew that I was supposed to be there, but the computer wasn't cooperating. They had more than the usual amount of difficulties getting an IV started with my "rolling veins". That may explain the rest of the problem which was even after 5 doses of the anesthesia, it didn't put me out and I was still wide awake for both procedures. I can tell you more than you want to know about what the inside of me looks like and just how it feels when they do that. It was survivable, though, just more than a bit uncomfortable. There wasn't unbearable pain, but I'm not in a hurry to repeat the process. I will get the results of the biopsies in a couple of weeks, I think . His first look at the endoscopy let him think that there wasn't too much permanent damage visible.

Sue B.
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Sue Beyer