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Scared Of What Colonoscopy Might Find


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#1 greenbeanie

 
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Posted 23 June 2014 - 10:21 AM

I'm having a colonoscopy on Friday, and I'm getting worried that something else is really wrong, in addition to the gluten problem. I'm not worried about the procedure itself, just the results. My previous doctors never referred me to a GI when the daily diarrhea, insomnia, and SI joint pain started as a teenager (22 years ago), telling me that this was just "normal for me" and that occasional blood in my stool wasn't a cause for concern as long as it was bright red, because it was probably just irritation from toilet paper and would only be a problem if I became anemic. I regret not pressing harder for a colonoscopy when I had my endoscopy last year, but I was so glad to finally have a doctor who agreed to celiac testing that I didn't want to push my luck, and she said it wasn't necessary at the time because I'd already had such a good response to a gluten-free diet. Then my celiac tests were negative (after an awful gluten challenge that might not have been long enough), and both of us were very surprised. But the diarrhea went away within a week of eliminating gluten and stayed away all year, plus my neuro, balance/coordination, and skin problems also improved hugely over the next few months. So I thought I'd found the underlying problem despite no definite diagnosis, and for the past year I have been pretty content to wait patiently and see what else clears up with time.

However, six weeks ago the diarrhea came back with a vengeance. My colon is so swollen that, er, it's hard to get even very loose stool out. I feel mildly nauseous all the time, and my SI joint pain and insomnia returned. No visible blood. I cook most of my food myself, from unprocessed ingredients, and I triple-checked all condiments, vitamins, and toiletries. I really don't see how this could be a gluten reaction - except that it did start around the same time my daughter had a resurgence of her celiac symptoms, which coincided with possible exposure to minuscule amounts of inhaled gluten for several weeks (but this seems more likely to be a coincidence: see http://www.celiac.co...traw-a-concern/ ). Anyhow, my daughter improved again shortly after that while my diarrhea is still going strong weeks later...which is why I'm worried that something unrelated is really wrong in there.

For those of you who had colonoscopies, were they able to tell you right away whether everything looked okay? Do they automatically do biopsies, or only if they spot visual problems? I'll certainly request biopsies when I see the doctor before the procedure, but she assured me that she'd do "plenty" of biopsies during my endoscopy last year, and I later found out that she only took four. And can they even do the colonoscopy if your colon is really swollen? I just want a clear diagnosis once and for all...but I am scared they're going to find something seriously wrong (and not correctable by diet) in the lower end...
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Daughter: Positive tTG-IgA, DGP-IgA, and DGP-IgG. Celiac confirmed by biopsy in June 2013, at age four. Clear gastrointestinal, behavioral, and neurological/sensory symptoms since very early infancy, even when exclusively breastfeeding.

Me: Diagnosis still unclear after extensive testing: Atypical wheat allergy, severe NCGI, or false negative celiac tests? Doctors disagree.Gluten challenge caused acute gastritis, esophagitis, and angioedema that lasted 4 months and was eventually determined to be a sulfite allergy. Gluten light for 15 years, then gluten free since June 2013.
Long history of eczema, chronic diarrhea, steatorrhea, ataxia, peripheral neuropathy, infertility, chronic insomnia, low cholesterol, vitamin deficiencies, and joint pain. Improved greatly within six months of going gluten-free.


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#2 GF Lover

 
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Posted 23 June 2014 - 12:23 PM

Hi Beanie.  Turn your thinking around.  You FINALLY will find out if there is a serious problem "down there"  It is always better to know, then you can take appropriate actions.  Keep a positive attitude going and try to relax some.  This really is a good thing!!

 

Good Luck.

 

Colleen


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#3 greenbeanie

 
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Posted 24 June 2014 - 03:11 AM

Thanks, Colleen. I know you are right - there's nothing to be gained by worrying about it, and I'll have the results soon enough.
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Daughter: Positive tTG-IgA, DGP-IgA, and DGP-IgG. Celiac confirmed by biopsy in June 2013, at age four. Clear gastrointestinal, behavioral, and neurological/sensory symptoms since very early infancy, even when exclusively breastfeeding.

Me: Diagnosis still unclear after extensive testing: Atypical wheat allergy, severe NCGI, or false negative celiac tests? Doctors disagree.Gluten challenge caused acute gastritis, esophagitis, and angioedema that lasted 4 months and was eventually determined to be a sulfite allergy. Gluten light for 15 years, then gluten free since June 2013.
Long history of eczema, chronic diarrhea, steatorrhea, ataxia, peripheral neuropathy, infertility, chronic insomnia, low cholesterol, vitamin deficiencies, and joint pain. Improved greatly within six months of going gluten-free.


#4 1desperateladysaved

 
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Posted 24 June 2014 - 06:42 PM

Yes, me too.  I have one scheduled in July.  We just discovered blood in stool.  I might have really freaked about it, but found out my problem use to be worse before my diagnosis.  I believe it was about the time we did our sheet rock mudding project.  I remember blaming the new low flow toilet for my problems.  Learned this week that tar like stool shouldn't be ignored!  Live and learn and let your family know.


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#5 luvs2eat

 
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Posted 25 June 2014 - 08:46 AM

When you say "blood in stool" do you mean bright red blood that's clinging to the stool or coloring the toilet water? Or do you mean black stool that indicates bleeding higher up that's completely mixing w/ stool and turning it black? The first is common and often blamed on things like internal hemorrhoids while the other shows the need for more study to find the cause. Like the others have said... knowing is what's important!


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luvs2eat
Living in the beautiful Ozark mountains in Arkansas
positive blood tests and later, positive biopsy
diagnosed 8/5/02, gluten-free (after lots of mistakes!) since that day
Dairy free since July 2010 and NOT happy about it!!




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