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lilbit

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About lilbit

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  1. Also do get a hard copy of the biopsy report. Some gastros won't diagnose celiac unless the villi are totally destroyed. You may actually have villi damage but not enough for him to say 'yea that's celiac'.

    I whole-heartedly second that! I've only been diagnosed for about a week now, but my GI told me I didn't have Celiac EVEN THOUGH I had damaged villi! I had to take the pathology report to another doctor before I could get answers. Always! Always! get your labs. Blood tests, biopsy... everything.

    You can google just about everything you read on the report and get answers. Wow... lol this lab result thing really gets me going :)


  2. I recently underwent alot of testing and part of it was a small bowel biopsy. The GI doctor told me that in his oppinion I did not have celiac. I requested the pathology reports and thank goodness I did. The biopsy results actually showed villous blunting. I took the rports to another doctor who confirmed Celiac.

    The one thing I have learned on this forum is that doctors are not infalliable and Celiac is difficult to diagnose. Don't take anyone's word for it, look at your test results yourself.

    OK. Rant over :)


  3. just thought id let everyone know about my biopsy, they found nothing wrong so any ideas what i should ask my gi doctor next?

    Question- Did you actually see your biopsy lab results? My GI doc told me that there was nothing wrong and I requested my lab results... and whaddya know... I had celiac!

    Don't forget- Celiac is notoriously difficult to diagnose! Best of luck!


  4. Amazing. I'm not the only "freak of nature" out there who has to pee every 20 minutes! :P It started when I was 20 and slowly got worse and worse over the years

    I feel like jumping up and down and waving my arms in the air yelling " ooh! ooh! Me too! Me too!"

    I love this board! For me it started when I was 25 and just kept getting worse! (33 now) and I went to the doc who said well, its not diabetes... Don't drink so much!

    I try to force myself not to drink alot because its frustrating to get up every hour to pee! During the day its easier to hold it for longer...

    I have my upper endo next week and if its not celiac I'm gonna be very annoyed. Not that I want a disease... But I DO want an answer!


  5. im not a diagnosed celiac but i have been developing problems that fit the bill, just last week i got my blood test results and now the doctor wants an upper endoscopy, i was prepared to go gluten free and help my self get healthy in fact im avoiding already breads and watching products that have gluten, but now that i've read that when you go gluten free you will gain weight it nearly drove me to tears i was a skinny kid all my life and had gained 200 pounds from the ages of 19-21, lost the weight (nearly 80 lbs) mostly from what i thought was hard work diet and exercise. im so scared because the thought of being my old self i couldn't stand it please someone help me....

    I'm going through the testing for Celiac right now... I've had a CT, colonoscopy and next week is the upper endo. I had never even heard of Celiac until a few weeks ago! I haven't been diagnosed yet, but the doctor is pretty sure that's where we are headed and I just had to respond to you because 10 years ago I went through a crazy weight gain I could've written your post back then: I was incredibly thin til I hit about 25 (I weighed 95 pounds!) and I gained 80 pounds in a very short time. At the time the doctors all treated me like I was an insane liar. I have stretch marks all over my body from gaining the weight so fast...

    I practically starved myself and excerised like a crazy person to get it off and finally got down to 140- it took forever :)

    Then about two years ago I started having GI symptoms and I was exhausted all the time. The docs told me i was just getting old!

    So now it looks like I'm finally headed for a diagnosis... and while online looking for info on this disease I found an interesting article about celiac and weight gain... Maybe it will give you a little hope... it did for me :)

    http://blog.glutenfreeworks.com/2010/01/21/weight-gain-in-celiac-disease-how-to-lose-weight-on-the-gluten-free-diet/


  6. I had my abdominal CT scan (normal)and earlier this week I had my colonoscopy... The EGD/ small bowel biopsy is next week.

    The visual exam showed diverticulosis and internal hemorrhoids. The doc took a bunch of biopsies including of my colon (looked abnormal)

    The question: Has anyone else had this show up on a colonoscopy prior to going glutten free? and did it get better on its own after going glutten free?

    Thanks!


  7. I still haven't had the EGD (that is next week) but I had the colonoscopy and the initial word is:

    diverticulosis

    internal hemorrhoids

    biopsies done including biopsy of the mucosa...

    I'm fairly young (early 30's) and in shape and I eat pretty well- I read the diveriticulosis happens with a high fat low fiber diet (def not me!)

    so, what do the experts think? could all that be caused by celiac?


  8. First they did just a chem panel (I think) noticed that I was really low on B12 (started getting shots) and calcium was really low. I don't have the blood work in front of me but most of my viatmins and minerals were either low or in the normal low range except sodium that was in the normal high range...

    I haven't been diagnosed with anything yet... I had some rectal bleeding with bothered the doctor so that's why the colonoscopy I think.

    The first dr did do blood tests for celiac but came back neg. but since my dad (type I diabetic) was recently diagnosed as well as a paternal aunt, he decided to send me to the GI...

    I have a really sharp pain in my right side I thought was from gas, that's prob why he did the CT? I feel like I'm playing catch-up trying to understand all the testing and whys... I never even heard of celiac until a few weeks ago!

    For the past few years I've avoided the dr since I always get told; "You are just getting older... deal with it" or its all in your head... lol!


  9. OK, so this might be a really dumb question but I figure it's easier to ask here than to call my doctor AGAIN :)

    Earlier this week I had my first GI appointment. After listening to my symptoms and reviewing blood work from the referring doctor, he tells me he can't diagnose me based on just that and he needed to run some further tests: He orders a CT scan, colonoscopy, and EGD.

    I had the CT scan yesterday and was horribly ill afterwards. naseau and violent vomiting. I did a quick search on the net and didn't see anything saying it was "normal or common" so I called the doctor's office... They said they had to run it by the doctor and would call me back. I finally got the call in the evening from the doctor, but by this time I was alseep and was so surprised that the doctor called me back himself that when he said its not common but not unheard of so not to worry. He also told me that the CT came back normal no inflamation and no blockages. He said it was important to do the other tests now. I said ok see you Monday and hung up before I even THOUGHT to ask.. Why?? Why is it important to do the other tests if the CT came back normal?

    I was sent to him to check for IBD and celiac. I know the small bowel biopsy is important for celiac but if there is no inflamation why the colonoscopy...

    Any insight is appreciated. If a simple CT caused that much grief, I'm not looking forward to the other stuff...


  10. I'm pretty sure he did the IgG as well, but he wasn't too concerned that the results came back negative. He just referred me to the GI right away (granted I had to wait 6 weeks to get in). He actually said he could still be Celiac's or some form IBD... I'm kinda voting for Celiac's since I'm not a big fan of taking all kinds of meds.

    I tried to get in earlier, but it just wasn't happening. I go next week now. I also just learned that my paternal aunt has celiac's- neg blood work... 1st biopsy negative... 2nd positive. Apparently she tried to nag my dad into getting a biopsy (he has type1 diabetes) and he refuses... He did get the blood tests, and showed positive, but hasn't done the biopsy yet.

    I have to say its helpful to read these posts and know that other people are having the same symptoms and struggles... makes me feel alot less insane :)


  11. I'm pretty new to Celiac's, I didn't know it even existed until about a month ago! I will ask my question up front incase noone wants to hear all the gory details :)

    How common is it to have negative test results and end up with a positive biopsy?

    I went to the doctor in early March becuase I was throwing up everything I ate. I ended up getting scoped and there were ulcers blocking the hole to my small intestines. The doctor put me on nexium and sent me home on leave for two weeks. After about a week I finally stopped throwing up, but I felt terrible.

    I had some symptoms before the ulcer that I didn't think of so much as symptoms as really annoying. I'm gonna list some of them just for comparison's sake:

    Muscle Spasm and Cramps (cramps in legs- wake me up in the night)

    Muscle Weakness (by the end of the day legs can