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Gastro Said I 'probably' Dont Have Celiac Desease? Please Read

Miss-Marie

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Miss-Marie Rookie
Miss-Marie
Posted

Hi all, Just to recap from all thats been happening with me, I had positive blood tests for celiac desease and went for an endoscopy but that was normal. so my gastroenterology specialist said I do not have celiac desease and that I have gluten intolerance, I was really upset because I truly believed I had this and he was telling me I didn't have it, in that appointment he asked me to do a stool sample to check for inflammatory bowel desease, and I just received a letter saying the results were abnormal and the fecal calprotectin test showed that my bowels are probably inflamed :/ it had a result of 92 when the normal range for that test is between 0 to 50, does anyone know anything about this test and what this means if my result was 92, because it sounds scary, its a lot over 50 :( in the letter he wrote 'the evidence is that you still probably do not have celiac desease but you might have another condition causing your diarrhoea which might possibly be triggered by gluten-containing products. i would therefore like to organise a large bowel examination called a colonoscopy where we will take photos and biopsies afterwards if required. it might also be beneficial if you go back on a gluten containing diet for two to three weeks before the bowel examination.' 

 

I'm kind of in shock at this letter because in the last meeting we had, he was sooo sure that I 100% did not have celiac desease and that it was just gluten intolerance, but in this letter he seems not so sure.. hmm. So I 'probably' don't have celiac desease.. :( I'm confused, oh and I would like to ask what other conditions can cause my bowel to be inflamed that is caused by gluten? Because I've never heard of any other conditions, just gluten intolerance and celiac desease. also to anyone who has had a colonoscopy before, what is it like? does it hurt and should I ask for general anaesthetic because I had a really bad experience before when I was awake through my endoscopy :(

 

Also can someone please explain to me about inflammatory bowel desease, because I googled it and it said that its not just one desease, thank you very much for reading xx

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nvsmom Community Regular
nvsmom
Posted

Celiac disease affects the small intestine (after the stomach). It's the villi that get damaged from our bodies overreaction to gluten... It's like a shag carpet in there, and in celiacs the fuzz can get worn off the shag and then it just gets smoother. It's where a good portion of our food is digested and absorbed. Endoscopies are used to look at this area; the doctors go in through the mouth.

 

The large intestine is usually considered the bowels, and it's the -ummm, poop  maker that empties out the waste. The main job of the large intestine is water regulation, and the result is how solid our BM's are... Sorry if that's too much. A colonoscopy goes up the rear and looks at that area, but I think you knew all that.  :) The state of our bowels is unrelated (usually) to celiac disease.

 

Crohn's is one that can seriously affect the intestinal area - I don't know a lot about it. Colitis too, although that is mainly the small intestine. Hopefully more experienced people will be able to tell you more.

 

(hugs)

NoGlutenCooties Contributor
NoGlutenCooties
Posted

I don't know about IBS or Crohns, but it is possible to have a positive Celiac bloodtest and not actually have the disease, although it's rare.  It is even more rare to have a normal endoscopy result if you have Celiac, but from what I've read the inflamation in the small intestine can be spotty, so they have to biopsy several places and get one that is being affected in order to see it.  In my case, the inflamation was enough that the wall of the small intestine was actually bumpy - so the doctor was able to diagnose Celiac before the biopsy results even came back.

 

Another possibility is that your good/bad bacteria balance is way out of whack - which happens more often than most people think.  They can do a stool test for that.  They should also test for Candida (yeast) overgrowth in the intestinal tract.

shadowicewolf Proficient
shadowicewolf
Posted

which tests were you positive on for celiac?

Miss-Marie Rookie
Miss-Marie
Posted
  • Author

Hi thanx for the replys, i was positive on the endomysial antibody test and the anti ttg test, but when I had my endoscopy I was pulling the tube out alot so the person who did the procedure said she couldnt really get a clear view in there, and she only biopsied 1 area too.

Thank you for the info nvsmom, its helped abit but do you think they would be able to notice anything in a colonoscopy that would be signs of celiac? or is that just for the inflammatory bowel? and nogluten cooties - thats interesting, I might consider asking for a candida stool test because Ive had recurring thrush for about 2 years now and its never gone away even with the thrush medicines, ive just got to wait for an appointment now to have my colonoscopy but I'm super nervous lol x

nvsmom Community Regular
nvsmom
Posted

I hate to say it, but I think your doctor is wrong... Without a doubt. I believe that you do have celiac disease. The tTG IgA test is about 95% specific to celiac disease which means that 95% of the time a positive test will be caused by celiac disease.... That's pretty accurate and reliable. The EMA IgA is even more specific to celiac disease; a positive EMA IgA indicates celiac disease 98-100% of the time. If you combine those two results, there is literally no doubt that you have celiac disease.

Those are the tests I had done too and my doctor declared me a celiac without even bothering with a biopsy.

Besides, those two tests do not test for gluten sensitivity, they test for damage, or attempted damage, being done to the small intestine's villi, and that is usually from a celiac response to gluten. You doctor sounds like he is out of date with current celiac info. :(

This is where I got my stats from (pages 10-12):

Open Original Shared Link

As for your question, a colonoscopy does not check for signs of celiac disease, but it could show crohn's. The endoscopic biopsies test for celiac disease, but to do a good job a doctor needs to take six or more samples and not one! The doctor missed the damage - I think they made a mistake.

I hope you are gluten-free in spite of what the doctor has said. A new doctor might be in order. :(. Best wishes.

cyclinglady Grand Master
cyclinglady
Posted

Is there anyway you can get copies of your lab tests and make an appointment with another doctor to review the results?  It would be worth paying out-of-pocket for a visit or discuss it with your GP who might not be an "expert" but could discuss with other doctors in the practice (or research it).  

A colonoscopy isn't bad if you are sedated (knocked out) and usually you are.  The prep's a pain (ewww....I still haven't been able to eat jello since my last one....) :wacko: but I survived.

 

I hope you find your answers!  Don't give up!   

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