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Endoscopy Results
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Hi,

My question to everyone is that my 9 year old daughter tested postive on 2 of 3 antibodies on her Celiac Panal. We had a GI doctor peform her endoscopy last week. He said that she did have enflamed and enlarged intestines but NOT to change her diet until the biopsy comes back. My question is that the GI doctor said that visually he could see she had Gastro Duodenitis. In laymens terms that means ulcers or pre-ulcers in the upper intestine/lower stomach. Has anyone else had this problem before they were diagnosied with Celiac. I guess as a mom I just worry about multiple ulcers. We were given medication to begin immediately and just like everyone else the multiple days of waiting for her results.

Thank you.

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I understand your worry...I have an anyphlactic reaction to gluten along with the GI symptoms and migraines and a bunch of other things.I had lesions when they first performed my biopsy. My biopsy came back negative, but had enterolabs results and was proved.Also had gluten challenge where I developed the anaphylactic reactions.

Word of Caution:the biopsy is not 100% true!!Human error and many other things effect it.

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MLO,

First, Gastro Duodenitis is not an ulcer. It is an inflamation of the stomach and the first portion of the small intestine called the Duodenum. While I am not familiar with inflamation of the stomach being related to Celiac (it might be, I've just never heard of it - I'm not a doctor), inflamation of the Duodenum certainly can be. However, several other things can cause these inflamations, including ulcers.

Your doctor might be concerned that this inflamation is being caused by early ulcerations and that is why he prescribed the medications for that. I feel he is correct in advising you to wait for the biopsy results before changing her diet.

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First I would Like to Thank Dewey for his response. I guess under the pressure of your child under "the scope", I probably did not ask the appropriate questions and probably did not understand completely what he was explaining to me. My daughter was diagnoised today with Celiac Disease. I cannot tell everyone how I glad I am that it is finally over. I was told that 9 years olds are KINDA rare. I was told that Celiac Disease is generally determined at a much younger age. My daughter first will remain on her medicine for her ulcers but she is to be removed from Wheat and gluetin immediately. Her lactose test is still not in. My response to anyone that has "different" symtoms, my daughter does show that it DOES happen.

MLO

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MLO> Glad that you got your results back and can begin treatment!

Scopes> I have a question about those: I had a colonoscopy, CT scan of my belly, and a scope and all were normal. The CT picked up an ovarian cyst, but the colonoscopy was normal the bipopsies from there were normal, and the endo and those biopsies were normal. An irritated spot was found, but the GI doc said that was from all the throwing up I'd been doing (related to symptoms that were later found to be a dairy allergy).

He also said it could be the start of an ulcer, but seemed certain it was just related to the throwing up. Would it hurt to contact him about celiac? I"ve never been "offically" diagnosed, just told that there's a good chance, given my symptoms, that I'm intolerant to gluten/wheat by an allergy doc.

-Kel :huh:

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MLO, no problem. I certainly understand, I was just trying to clear away some of the fog! I know what it is like. When I was first diagnosed, I knew nothing about this disease, since that time, I have been an information sponge - reading everything I can find on the topic.

As for your daughter being a rarity because she was not diagnosed until 9, I don't agree. I was diagnosed at age 44! B) Also, there are two requirements for Celiac Disease - the gene and a trigger. The gene is identified, the trigger is not. Not everyone who has the gene will develop Celiac because they do not ever encounter the trigger. It could very well be that your daughter did not encounter the trigger until relatively recently. I know this does not help you now, I'm just trying to clear some of the fog again!

Kel, it is possible to have Celiac Disease and not have it detected through the biopsies, either because of the biopsies taken from the wrong places, or from an inexperienced pathologist examining the biopsies. However, if you have been gluten free since January because of intolerance and/or alergy, depending on when the biopsies were taken, this could make it more difficult to determine Celiac. If the biopsies were recent, there may have been sufficient healing since then to make the tell tale villous atrophy normally associated with Celiac Disease undetectable.

Having said (all of!) that, if you are gluten free anyway, you will know on your own whether or not you have Celiac by staying on the diet a few more months. If your symptoms go away, you probably have it. The only alternative would be to go back to eating gluten for several months and then get the Celiac panel blood tests and if they are positive, repeat the endoscopic biopsies. I know that's not what you would like to hear, but it is the unfortunate reality.

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    • I was diagnosed this year and I live on Oahu. I have yet to meet another celiac, so that tells you something about our limitations here. I work in Waikiki and do frequent Rouffage. It is nothing fancy, small place, but keeps me fed when I need something. I also like Greens and Vines. It is a vegan restaurant and worth every penny. Greens and vines sets up at the KCC farmers market on Saturdays too. Places in Waikiki that do offer a gluten-free menu include, PF Changs, Dennys, Big City Diner and California Pizza kitchen. I do not trust those places due to the risk, but they "offer" gluten-free options. I did try and order a beer at Yard House in Waikiki. They label clearly states that it contained wheat, so yeah sent that back with the waiter. I have also tied Doraku in Waikiki. I called ahead and spoke with management. That went well and they offer gluten free soy sauce. There is a deli at Down to Earth Grocery store in Honolulu that has gluten-free options, but the whole foods here do not offer hot food that is gluten free. They do have a hot food bar, but you have to stick to the whole plain salad and veggie options. It's good to hear the hotels here are getting better, beyond Waikiki hotels there is no one really interested in being gluten free.
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