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Questions about Celiac's Disease

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Old 02-24-2009, 06:13 AM   #1
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Forensicmom HB User
Questions about Celiac's Disease

I've been reading a lot of posts about this on this site and a few others and I'm really confused.

I have read that the blood tests AND biopsies from an upper endoscopy give false negatives ALL the time when trying to diagnose Celiac's. There is only one test (somet type of stool test) that can give you a true diagnoses. The only other way is to go TOTALLY gluten free for at least 3 months to see if there is any change.

If these tests aren't accurate, why do the doctor's do them? And why do so many GI specialists not consider this as a cause for so many people's symptoms?

I've dealt with nausea and stomachaches for years, as well as fatigue, headaches, dizziness, shakiness, heart palpitations, etc. Since I'm a 38 year mom of 4 they automatically tell me it's stress and anxiety. I know it's not that. They tried me on a number of acid blockers with no relief and finally tested my gallbladder. They said it wasn't working and needed to come out. Feeling so sick, I was desperate for relief and had it out almost 2 years ago. Now I'm worse then I was before and have lots of bloating/gas, stomach gurgling, a lot of foods make me feel sick and I just feel a lot worse then I did before. The doctor's finally checked my blood back in January and found that I'm anemic, which could be the cause of a lot of those symptoms. It was also negative for H pylori and Celiac's. An endoscopy was done a few weeks ago and red irritated areas in my stomach were biopsied. The dr told me that I had acid reflux and put me on Nexium. She said the biopsy was negative for Celiac's. I told her that when my stomach is really bothering me the only thing that makes me feel better is ginger ale and crackers or bread. She said that's a clear indicator that gluten is NOT the problem. However, I've read on several sites that gluten is a comfort food and doesn't react right away.

I'm trying to wait at least a month or more to see if the Nexium is working before I try something else but it does make me wonder about things. I'm not ready to try the drastic gluten free diet but I'm wondering what questions to ask my dr when I go back for my follow-up???

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Old 02-24-2009, 10:23 AM   #2
Join Date: Jan 2008
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nscrbug HB User
Re: Questions about Celiac's Disease

Hi...well, I'll definitely be following this thread I just got tested for Celiac's a few days ago (have not got the results back yet). I certainly hope the test doesn't come back a "false negative", seeing as how dang expensive it is to do the blood screening for Celiac's! When my doctor told me that it was almost $500 for the test, I was quite hesitant about doing it. However, I did reluctantly, agree to it and now I hope I don't regret that decision.

I have many of the same symptoms as you, so I understand the frustration of trying to figure out why we feel this way. I've been doing some of my own researching, and I'm beginning to think that my digestive problems might be due to Candida or SIBO (small intestine bacterial overgrowth). I've started taking a probiotic (with 3 strains of good bacteria) to see if that will make a difference. I'm also thinking about trying a Candida Cleanse product...but haven't chosen one yet.

I too, am hoping not to have to resort to trying the totally gluten-free diet I pretty much live off of whole grains, cereal, & oatmeal! I honestly don't know what I would eat if it came to that.

My doctor said that if the Celiac's tests come back negative, then he will be sending me off to a gastro doc, who will probably want to do an endoscopy. I just want some answers and want to get to the bottom of my stomach issues. I can't live with this discomfort anymore.

Old 03-04-2009, 11:05 PM   #3
Join Date: Mar 2009
Location: Chicago, IL, USA
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DDSM04 HB User
Re: Questions about Celiac's Disease

I've actually had numerous tests done for Celiac in the last few months. It runs in the family, my grandma had it along with many other family members who had sensitivity to gluten but never actually tested positive for it. I had a blood test, which I was told rarely shows up positive anyways. I then had an endoscopy with biopsies, which came back negative on everything. I had a colonoscopy and another endoscopy done, on the same day, all coming back negative for Celiac again. I was told for the tests, atleast the endoscopy I know, you MUST be eating grains, wheat, etc. or else the test will come back negative. Don't go on the diet unless you've found out, that delays everything. I did eventually get a diagnosis, after close to 6 montha of tests, and for who knows how many diseases/disorders. Hope you get to the bottom of everything!

Old 03-05-2009, 09:57 AM   #4
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Location: Illinois
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nscrbug HB User
Re: Questions about Celiac's Disease

Hi...yes, when my doctor did my Celiac's blood test I was definitely eating grains (still am, actually) and it came back negative. I haven't had an endoscopy yet...might be one in my future, though. Although, I have to say that since I started taking a heavy dose of probiotics and digestive enzymes on a daily symptoms DO seem to be diminishing ever so slowly. The stomach churning/gurgling has lessened to the point where it is no longer keeping me awake at night. I still have the bloating and gas, but that too, seems to be marginally better than it was a few weeks ago. So maybe it was just a severe imbalance of bad/good bacteria in my digestive least I hope that's all it was! I plan on continuing with the probiotics and enzymes awhile longer to see if my symptoms continue to improve.

Last edited by nscrbug; 03-05-2009 at 09:57 AM.

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