No celiac testing

[CindyC]

Hi, I've never been on a forum before but thought I might find some answers here.  I have never been tested for celiac but a nurse practitioner I saw a few years ago told me she thought I would benefit from a gluten free diet.  At first, I thought I could never do this but after some encouragement I did try.  I did feel much better after going gluten free.  She never tested me for celiac. I turned 50 years old last year and I had a colonoscopy for the first time and had three polyps removed.  The surgeon said that my colon looked like I was a chronic laxative user.  I haven't used a laxative for a very long time.  I was at the time drinking a natural tea to help me to have bowel movements.  Before starting the tea I had always had difficulty with bowel movements and never had them once a day but with the tea I was able to go once a day.

At the end of last month I developed severe pain after I would eat (I had my gallbladder removed at the age of 19).  One night the pain got so bad my husband had to drive me to the ER.  My liver functions were high as well as a few other things.  They did a CT scan of my abdomen and pelvis that showed wall thickening of my transverse colon and minimal irregularity involving the transverse colon.  My descending and sigmoid colon were collapsed.  There were a few tiny mesenteric lymph nodes present on the right.  They diagnosed me officially with colitis but said that most likely I had a gallstone (even though I don't have a gallbladder) that had come from the liver and had gotten stuck in the common bile duct (it did not show up on the CT scan).  I usually have a high ferritin level too.  I've been home from the hospital stay for about a month now and still have tenderness in the epigastric area.

Some of this may not have anything to do with celiac but was wondering if anyone has been diagnosed with celiac by CT scan or colonoscopy or if anyone has had the same problems that I have had and found out what has caused it.  I cannot see the gastroenterologist who saw me in the hospital for a couple of months.  Can you have celiac and not have diarrhea as I am just the opposite?

Any help would be appreciated!  Thanks!

 

[PinkyGurl]

As a GI specialty nurse who also has celiac I can tell you that it can not be diagnosed by CT and rarely unless you have severe disease can it be diagnosed by colonoscopy.  Those that have had it diagnosed by colonoscopy have such because their MDs were above to get into the small bowel from the bottom and take biopsys.  Celiac damage is not seen in the large intestine.  Also many people do not have diarrhea, many have constipation or a 50/50 mix between the two.  Celiac has 300 connected symptoms and sometimes no symptoms at all.  It's called the " great pretender" because of this.

[CindyC]

Thanks for your answer.  It's good information to know.  I see a gastroenterologist in October.  In your opinion, should I contact his office now and ask about celiac testing and if I need to start eating things with gluten in it now so that he can test me when I go in?   Or do you think it's best that I wait until I see him first? I sure hate to start consuming gluten now and then go in to see him and he says he doesn't need to test me for celiac!

[ravenwoodglass]

If you want to be tested for celiac you do need to be eating gluten. You don't have to have it at every meal. You can simply have the equivelent of a couple slices of bread a day.  It would be a good idea to start back on gluten ASAP as if you have been strictly gluten free iit can take time for the antibodies to build up enough to show on blood work. You could also have your GP do the blood work a week or two before the GI appointment so the GI has the results when you go.