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AhhhNold

Preparing for EGD and Celiac biopsy.

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I'm 3 weeks away from my EGD and Celiac biopsy. I wish it was tomorrow. I started having stomach pain a few months back, had ultrasound, Bloodwork, H-Pylori test. Ultrasound normal, blood work normal, H-Pylori test negative, diagnosed with gastritis and given Nexium. It went away completely for about 3 weeks then came back with this constant belching, when I say constant I mean like sleeping 2 maybe 3 hours at night, the stomach pain would kinda come and go but the belching was non stop. Finally got referred to a GI specialist. While waiting on my appointment I decided to see if it could be an intolerance. First went dairy, no help. Then finally gluten. Within a week I was much better. Finally relief. I saw my doctor told him the diet was helping, he ordered an EGD and Celiac biopsy. But since I saw him a week ago I feel like I'm getting worse again. So yesterday I ate gluten free waffles and had a horrible day, so much gas and belching all day. I couldn't understand, so I looked at the box and found it's got soy. I read that people who have Celiac have trouble with soy as well. So today I've been, gluten, dairy, and soy free which mean I can't eat crap. But I've felt much better today than yesterday. In the mean time I'm curious, when they go in with the scope and do the intestinal scrape for the biopsy, how long do you have to wait for results? I'm so ready to do these tests and get some answers.

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Hi Ahhhnold (is that like Shwartzenegger?! :D ), I am also waiting for my endoscopy. In the meantime, the people on this message board suggested that I request the celiac antibody panel to be drawn. Do you know if that was included in your blood work? If not, you can ask your primary care doctor to order it while you wait. That might shed light on just what's going on in your body. I had mine drawn yesterday and am waiting for the results, but they typically can be back within a few days. Why not give it a try?

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56 minutes ago, AhhhNold said:

So today I've been, gluten, dairy, and soy free which mean I can't eat crap. But I've felt much better today than yesterday. In the mean time I'm curious, when they go in with the scope and do the intestinal scrape for the biopsy, how long do you have to wait for results? I'm so ready to do these tests and get some answers.

Unfortunately you need to keep eating gluten until all celiac testing is complete.

 

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If I was the big guy, there's no way I would have to wait 3 and a half weeks for a test lol. My GI doc never recommended the antibody test. He said doing it with the scope was the only sure way to know. Does anybody know if I should eat a little gluten the day before my test to see if I will get an accurate enough test? Or will it not matter, once the damage is done it's done?

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You have eat gluten every single day until after testing. And the celiac blood test is supposed to be done as well.

 

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Learn more about testing for celiac disease here:

http://www.cureceliacdisease.org/screening/

You do have to be on a gluten diet for ANY of the celiac tests (blood and biopsy) to work.  While the endoscopy (with biopsies) can reveal villi damage, many other things besides celiac disease can cause villi damage too:

http://www.cureceliacdisease.org/faq/what-else-can-cause-damage-to-the-small-intestine-other-than-celiac-disease/

So, both the blood test and endoscopy are usually ordered.  There are some exceptions, but those are not common.  

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I'm still really new to all this but is it common to have trouble with sleep? I swear since my symptoms got really bad a few months ago I can't get 1 good nights sleep, like a 5 hour stretch is doing real good. Wake up at 3am wide awake almost every night. Told my doctor and they've recommended melatonin, that doesn't work. Tried chamomile and lavender tea, no help. Tried zzquil, that will knock me out but maybe for like an extra hour then I'm really drowsy the next morning from it. I don't know what to do.

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10 hours ago, AhhhNold said:

If I was the big guy, there's no way I would have to wait 3 and a half weeks for a test lol. My GI doc never recommended the antibody test. He said doing it with the scope was the only sure way to know. Does anybody know if I should eat a little gluten the day before my test to see if I will get an accurate enough test? Or will it not matter, once the damage is done it's done?

Celiac disease is an autoimmune disease that happens to have a known trigger -- gluten.  Flare-ups develop  (antibodies) causing damage. Not just in the small intestine, but systemically.  One gluten exposure can cause antibodies to increase for days or months!   Antibodies are being measured during the celiac blood tests.   If there is no gluten exposure, there will be no antibodies.  These antibodies can come down in some people in as little as two weeks.  Recommendations require gluten 2 to 4 weeks daily for the biopsies taken via endoscopy in order to be sure to catch damage, but 8 to 12 weeks for the blood tests.  

The endoscopy is considered the "gold standard" in helping to diagnose celiac disease, but there are other things that can damage the small intestine.  So, the blood test helps solidify the diagnosis.  

So, if you want a good result on your endoscopy, you need to be eating gluten daily for two week prior at a minimum.  I know it is tough and you are feeling sick.  Wish there was a better way to catch active celiac disease.  

 

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Called my GI doctor today to make sure he is going to look at my small intestine and do biopsy for Celiac for my EGD and he is. Thanks for the tip everyone about have to start eating gluten again. The office told me to break my gluten free diet and start eating gluten everyday until my EGD. Here's to being miserable again for a few weeks ???

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