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Crohn's Disease Forum » Support Forum » Undiagnosed Club » Baffled: Blood Tests Positive For Celiac But Biopsy Is Negative.


08-07-2013, 10:40 AM   #1
KnightRobby
 
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Baffled: Blood Tests Positive For Celiac But Biopsy Is Negative.

I had blood tests done nearly a year ago for Celiac Disease, which revealed 138.0/30 as a definitive positive result. The GI Doctor that ran the tests I no longer see because he was terrible. My current GI doctor said I had possible Crohn's and or Celiac but found it extremely odd that I didn't show signs in my colonoscopy or endoscopy. He did a recent biopsy of the small intestine area for Crohn's and Celiac, which came back negative for both. I also have been tested for H. Pylori and parasites, and a year ago Candida by an Allergist (this was when he diagnosed me with Celiac via Blood work). Yes, it was the Allergist that was the original one who found the 138.0/30 on my Celiac Panel.

However, the only thing he has seen? Inflammation of the descending colon region, which is causing severe pain and constipation. He has yet to give me any treatment options and I am wanting something by the weekend as this has been going on for nearly a year now.

I am shocked that the biopsy did not at least show Celiac, because I thought this was the definitive way of checking. I am having severe food allergies to nearly everything and they can be IMMEDIATE when I consume anything raw. It is insane.

So, what could be causing this possible false positives to the Celiac BLOOD test? Or do I have Celiac Disease??

And how do I treat all of these food allergies and Ulcerative Colitis? And could severe, prolonged hayfever be the actual cause (I have only lived in AZ for 2 years now)?

I have read that hayfever can cause colitis but its not like I am sneezing like mad - though I have severe allergy symptoms and my Allergist has noted I am basically allergic to every tree here.
08-07-2013, 10:52 AM   #2
valleysangel92
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The exact same thing happened to me. We were told that there isn't such a thing as a 'false positive' coeliac blood test. TTG only indicates coeliac disease, so unless the lab messed up, which is very unlikely, then I would still go with the diagnosis of Coeliac.

The biopsy is supposed to be definitive for coeliac, but occasionally they can miss it, the damage may be patchy and there for only show if they take the sample from exactly the right place. Also, if you were already gluten-free when you had the biopsy taken, this can cause the biopsies to show up negative.

You can get a re-test to check your bloods again but to do this you would have to be eating gluten, which may not be worth it if your symptoms get worse when you consume gluten.

I would push your doctor for treatment, symptoms like that cannot and should not be left untreated because the longer they leave it the harder it will be. If your doctor wont give you the treatment you deserve then find one that will.

Feel free to PM me if you want more information.
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Nicola
coeliac disease/Osteopenia /Crohns/Arthritis/
laperoscopic hemicolectomy 25/06/ 2013

Meds- Vedolizumab, sulfasalazine, Lansoprazole, Vitamin D, prochlorperazine, Oramorph, MST, B12 shots My journey with crohns: http://glutenfreecookiemonster.wordpress.com/

Allergic to - inflectra, aza

Non CD meds - Gabapentin, paracetamol, ventolin
08-07-2013, 11:47 AM   #3
Niks
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Robby, Have you been gluten free? And if so how long for?

My daughter was diagnosed in December with Coeliac through biopsies, (blood negative!) January still showed Coeliac tendencies on biopsies, March she was completely clear but almost 4 months of Gluten Free diet.

To be honest I am not convinced, but with the problems she's having she is staying gluten free!!
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Daughter 22, 1. Upper GI and colonic dysmotility with viscernal hypersensitivity.
2. Predominant Constipation with slow colonic transit and moderate gastroparesis,
3. Nephrolithiasis
4. Osteopenia bordering on osteoporosis



Peristeen Irrigation every other day.
Citramag/Picolax

Waiting for bowel stimulator!
08-07-2013, 11:55 AM   #4
valleysangel92
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To be completly honest.. I would trust the bloods more than the biopsies.. Its far easier to confuse damage caused by another condition with coeliac than to get the bloods wrong..

However you can get false negatives (not false positives). Either way, you can be gluten sensitive without being coeliac, so if your better off without it then theres no harm staying off it.
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