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Bethinjapan

Just Got Back From Gi Appt.

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I had my appointment today to get the results of my pill cam that was done on Wednesday. First of all, she thought my villi looked okay. She seemed shocked at the speed at which the pill cam went from my mouth to my colon and said it was the fastest they've seen. I had to be there eight hours for it, as that's when the battery runs out, but she warned me that sometimes it doesn't even make it through the small intestines in that amount of time. Mine went from my mouth to my colon in two and a half hours. She didn't say that was a bad thing, just seemed surprised and we laughed about it. I didn't even think to ask if it was good or bad!

Then she said I have "multiple duodenal erosion". She showed me I have red spots all over that area...whatever it is? The duodenum perhaps? We were dealing in Japanese, so I'm missing some of the technical English terms here. It's the part that connects the stomach to the small intestine. She showed me in a medical book how it is something to look for with celiac.

I've also started losing weight quite rapidly, 15 pounds in the last month or so, which has her attention, so she's working hard to find some answers. She originally said if the pill cam came back clean, we wouldn't do the endo and blood tests (very expensive from America), but after looking it over she scheduled me for an endoscopy and is ordering the blood tests from America. She also scheduled me for thyroid and Sjogren's (per my request based on other symptoms) blood tests. I know this is all a little backwards from how things are done in countries that are familiar with celiac, but I'm just so impressed with her vigilance at researching and testing for the issues I've come asking about! Of course all of this will take over another month to hear back.

Also, I don't feel like I have a high metabolism. I'm tired all the time! Any and all thoughts are greatly appreciated!!

Beth

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Hi Beth,

Here is an interesting article:

http://www.nlm.nih.gov/medlineplus/ency/article/000206.htm

You might consider having an endoscopy exam to biopsy the effective areas. Or try the diet for a month or two to see if you have a positive dietary results.

I am not certain how prevalent Celiac Disease is in Asian countries or how current the medical field would be in diagnosing and testing.

Continue looking until you have answers.

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Be thankful you've got a good doc! At least she's moving onto the next steps to try to arrive at a diagnosis. I had WAY too many years of doctors doing some kind of test, then saying, "nope, results all negative" then hanging up at the end of the message! Finally got one last year who used tests as a way to rule things out, then finally got to celiac disease blood tests. Thankfully. At least now I'm on the road to recovery.

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You might be just in early celiac disease, where villi damage is not so visible yet.

Are you eating enough gluten for damage to show clearly?

I found out the hard way one needs to consume a lot of gluten for the crude tests to show up positive.

I have seen recommendations of 0,3 grams per kg per day, but I have also seen new recommendations of at least 0,5 g per kg per day. That would be 32 grams for a person weighing 75 kg. When I did the math for 0,3 g, it amounted to 21g a day, that was at least 8 slices of the bread I did the maths on....

Now blood tests would be only positive with considerable villi damage too.

So mayb you have not been eating enough gluten?

About more subtle villi damage, check out www.thefooddoc.com and his explanation on how many IEL's there should be on each villi tip. They never reported mine, just wrote no sign of villi damage.

One should be on the gluten challenge for at least six weeks, or more.

How much gluten have you been eating?

Here we have this tissue transglutaminase test you can do at home, it costs less than 20 dollars, and it is just as accurate as the lab test provided you are not IgA defcient. We have seen here at the local forum that it is so sensitive that weak positives when repeated at the hospital lab show negative....so one cn check when one has eaten enough gluten for the lab test so show positive....

You do sound celiac, and the tiredness is typical.

nora

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