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Boilermaker

What To Excpect At First Consult W/ Gi Specialist?

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Welcome to the forum, Boilermaker.

You've started with an easy question, but one that's not that easy to answer. There is a very wide range of knowledge and experience amongst GI doctors when it comes to celiac disease. The majority will just schedule you for an endoscopy with biopsy to search for damage in the small intestine. In this regard you need to make sure he is going to take at least 5 or 6 samples because the damage can often not be seen with the naked eye through the scope, and it tends to be patchy and easy to miss. So ask him how many samples he will take.

Once the report comes back: if positive, he will probably just tell you you have celiac, eat gluten free and send you on your way, or maybe refer you to a nutritionist. If it is negative, he could do one of two things: send you on the way and congratulate you on not being a celiac, or suggest a trial of the gluten free diet to see how it works for you. The latter is the more enlightened approach, because both the blood work and the biopsy have a 20% false negative rate.

P.S. By the way, no matter what he or anyone else tells you, keep eating gluten right up until the biopsy has been completed, and then begin a good, strict three-month trial of the gluten free diet because there are only one or two known false positives on the blood testing alongside all those false negatives.


Neroli

"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

------------

Caffeine free 1973

Lactose free 1990

(Mis)diagnosed IBS, fibromyalgia '80's and '90's

Diagnosed psoriatic arthritis 2004

Self-diagnosed gluten intolerant, gluten-free Nov. 2007

Soy free March 2008

Nightshade free Feb 2009

Citric acid free June 2009

Potato starch free July 2009

(Totally) corn free Nov. 2009

Legume free March 2010

Now tolerant of lactose

Celiac.com - Celiac Disease Board Moderator

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Welcome Boilermaker . . . just curious . . . are you talking the Purdue kind of Boilermaker or the alcoholic beverage?

. . . and Shroomie is right, keep eating gluten until all testing is done.

My daughter's blood test was positive but her biopsy was "officially" negative. Those quotes are there because of a little side test that I had asked for. We kept treating her like she was lactose intolerant. I asked the Doc if they could test that during the biopsy and he said yes.

Let me insert some history by saying the blood test was done on the same day as the scope. The endoscopy was looking for evidence of Eosinophilic Esophagitis, so the Doc was looking mostly at the Esophagus and only took two samples out of the small intestine.

Everyone was surpised when the blood test came back positive. The biopsy (only two samples taken because everyone thought the esophagus was the issue) came back negative. However, the lactose intolerance test that I ask for is what really showed us the hidden damage. I asked for the lactase enzyme to be tested, but that is just one part of the test, they also tested several of the other enzymes. Not only was the lactase enzyme low, but she was low across the board and it was called a "generalized disaccharidase deficiency". This was evidence to the Doc that although there was no visual damage in the samples he took, the villi had suffered damage as they were no longer producing adequate amounts of lactase, sucrase, maltase, and palatinase.

I don't think this is normally included in the testing. I bring it up as something you might want to discuss with your GI. My GI wouldn't have had it tested if I hadn't had asked for it, yet it proved to be informative.


Janet

Experience is what you get when you didn't get what you wanted.

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