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Test Results Are In.

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Posted 08 August 2012 - 07:28 PM

Ok, the results for my endo are in and my small bowel biopsy is normal. I have no ulcers anywhere,although I still have blood in my stool. So if both my blood test and biopsy are negative that means what. Could I still have celiac or is this all in my head. I don't have diarrhea all the time and I can eat bread and not react all the time but then again when I do I end up having an accident and it is usually when I am out shopping or in my car. I am lactose intolerant and have leg pain and brain fog as well as the cramping in my gut and pain in my abdomen. So I don't understand how the tests came back normal.

The nurse told me the doc only took 2 biopsy's from my small bowel so could that be why it is normal he didn't get to the damage or is there even any damage. I am beginning to feel like I really am a hypochondriac.
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    "The past is the past...I've got places to be."

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Posted 08 August 2012 - 07:55 PM

Both blood and biopsy can be negative. Two samples is not very many. My Celiac GI takes 6, some say 3 is enough. Regardless, if you have symptoms that led you to Celiac testing, it seems the next step is to completely remove gluten for at least three months.

If it turns out you improve on gluten-free trial, you have your answer - don't eat gluten. All of my kids/grands tested negative, yet had improved symptoms gluten-free.

I know it can be very frustrating - the "normal"/negative medical testing system can make anyone feel like a hypochondriac - don't let it get you down, trial removing gluten - keep asking questions until you find your answers.
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Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS


ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)



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Posted 09 August 2012 - 06:12 AM

Two biopsies is not enough!! It is baffling that a GI would only take two biopsies when looking for celiac! I would NOT consider this biopsy to be valuable in your diagnosis. I was diagnosed with biopsy that she had taken 6+ samples, when my 8 year old had her scope done, they took a total of 8 samples.

Did you say you had celiac blood work?

If your testing is complete, go for the gluten free diet----- if you have relief, you may have your own "diagnosis". That is where we are with our oldest child, she has positive blood work for celiac but normal biopsy so doc won't diagnose her, we are not taking her totally gluten free to get our own answers :) sometimes you have to rely on yourself and your own experience!
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Posted 09 August 2012 - 06:04 PM

Please realize that you can have a serious problem with gluten that ISN'T celiac disease! If it makes you sick- don't eat it! You don't need to have a drs permission to feel better.
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