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msutherlin

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msutherlin Newbie
msutherlin
Posted

Not sure where to start. I have had digestive problems for so long I don't remember what it was like being normal. I am in my mid 40's now. At age 23 I had thyroid cancer. I am on synthoid and always high doses. For years I blamed my "diarrhea" problems on to my synthoid. I was so thin my whole life even before the thyroid problems. The last 10 years or so I have finally put on some weight to where I look the rest of America. The last several years I was also blaming my digestive problems on a large fibroid tumor that was removed a year ago. After it's removal I had hopes that things down there would get better but they did not. This fall they got even worse.

At first I thought I had a bug. I would eat and then have to run to the bathroom. I was getting so bad I didn't want to leave the house. If we did eat out, I knew I had about 30 minutes to get home before it would hit. I was starting to wonder if I was going to have to wear some Depends! This went on for a couple months. One morning I woke up in so much pain. It was worse that child birth. I ended up at the emergency room. They did a ct scan on me, told me they could see nothing and released me. But when my doctor got the ct report, it said I had ileous and air filled small bowel loops. She said that could indicate a blockage. An appointment was made with a GI doc but of course I couldn't get in right away so have been waiting for weeks. That appointment is tomorrow. In the meantime my doc had given me a blood test for Iga and Igg. My Iga was negative but my Igg was positive so she felt a strong possiblity of celiac and told me to start on a gluten free diet.

I started on the diet for 3 days but after reading on several sites I called her back and asked for more blood test and started back eating the gluten again. Four days after eating the gluten she did an Ema and Ttg. The Ema came back negative so the lab didn't even run the Ttg. They said with the Ema being negative my insurance might not even pay fo the ttg. Right after that blood test was taken I started eating gluten free and did so for two weeks until I got the results back.

I am confused as to why they wouldn't run the ttg because I read the Ema has a high chance of false negatives. So I will be real interested in what this GI doc thinks tomorrow. Will he think there is a good enough chance I have this to even want to do a biopsy? Will he even know much about celiac? What I do know is the two weeks off of gluten I hardly had any gas or bloating. I started eating it again yesterday in case he wants to do a biopsy. But I don't know if the two weeks free I did will mess things up or if that's not enough time to really heal things. Last night after eating it all day I felt sick at my stomach all night. Tonight I am bloating again. I am so sick of this.

So that is pretty much my story. Just waiting to find out what the heck is wrong with me.

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Helena Contributor
Helena
Posted

Well, it certainly sounds to me like you should be investigated for celiac disease and also that your doc isn't up on how to proceed! I sure hope you have better luck with your GI doc. I'd recommend printing off info. from authoritative sources in case you don't. The NIH has good info. on testing for celiac as does Dr. Green's centre for celiac research at Columbia.

see:

Open Original Shared Link

and Open Original Shared Link

It is entirely possible to test negative for EMA and positive for anti-tTG. These two tests are considered more reliable than the older antigliadin tests.

If everything comes back negative, you can either try the gluten free diet on your own or ask for a biopsy (which should be done before you go fluten free) depending on how important it is for you personally to have an "official diagnosis."

Some test negative for the serological markers for celiac but have a positive biopsy.

Welcome to the board :) Feel free to ask any questions---I haven't been in the 'celiac boat' for long, but there are lots of folks here who have been.

msutherlin Newbie
msutherlin
Posted
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I saw the GI doc yesterday and they are going to schedule a colonoscopy and an upper endoscopy with biopsy to see if I have celiac. So we shall see. Just the waiting and eating lots of bread now. Thank you for the information!

Helena Contributor
Helena
Posted

That's good to hear that the GI doc is pursuing this. Good luck--keep us posted.

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