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Not Sure If Celiac Or Crohn's - Please Help!


Rusty Shackleford

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Rusty Shackleford Newbie

I am not sure if I have Celiac or Crohn's. I am a 15 year old male, and I weigh 82 lbs and about 5 feet tall. I have noticed symptoms of delayed growth and chronic diarrhea. I was tested for Celiac with a blood panel, but the results returned negative. I am now scheduled to have some type of biopsy to see if I have Crohn's. At this point, I'm hoping I have Celiac. I read about Crohn's, and it made me very nervous and scared. Please help me!!!


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mushroom Proficient

Hi Rusty and welcome to the board.

It is not uncommon to test negative on the celiac bloodwork; there is known to be an error rate in the testing. Did you have the complete panel of tests? Can you tell us what tests were done and what your scores and the ranges were? The most important not to leave out are the total IgA, and also the DGP.

If your doctor is now considering Crohn's as a diagnosis and is doing biopsies, that would be from a colonoscopy checking out the colon, which will not tell you anything about celiac which affects only the small intestine.. For celiac you need to make sure your doctor also does an endoscopy to check the upper intestinal tract, and takes at least 6 biopsy samples to send to the pathologist, because it is possible to be negative on blood work and positive on biopsy.

It is also possible you have non-celiac gluten intolerance (NCGI) which can cause a lot of the same malabsorption issues as celiac because your food doesn't hang around long enough for you to absorb it. Although celiac does seem more likely if you carry the 'failure to thrive' diagnosis. NCGI can give you practically the same problems as celiac; you just can't pass the test which is geared to measure damage to the lining of the small intestine and which apparently doesn't happen in NCGI.

Anyway, if you would, let us have a look at your test results.

At any rate, you definitely need the upper endoscopy to rule out celiac; a colonoscopy will not do that, although it could potentially rule in Crohn's. For your sake I hope that one is negative too. :)

kareng Grand Master

Just to add to Shroomie's info - the endoscopy ( upper end) can be done at the same time as the colonoscopy ( lower end). I would think he might like to do that just to make sure you don't have anything like an ulcer & he could biopsy for Celiac, too!

GFinDC Veteran

Hi Rusty,

It should also be less expensive to get the endoscopy and colonoscopy done at the same time. Doing both at once saves another trip to the hospital. For the endoscopy they need to take multiple biopsy samples, 5 to 8 is good. Celiac is treated with the gluten-free diet. There are treatments for Crohn's and some people with Crohn's follow the gluten-free diet. But often some drugs are needed for flares. Flares are usually intermittent though, and can go into remission with drugs or other treatments. People can live a long healthy life with Crohn's with proper treatment.

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    • trents
      NCGS does not cause damage to the small bowel villi so, if indeed you were not skimping on gluten when you had the antibody blood testing done, it is likely you have celiac disease.
    • Scott Adams
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    • Xravith
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    • Scott Adams
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    • Scott Adams
      In the Europe the new protocol for making a celiac disease diagnosis in children is if their tTg-IgA (tissue transglutaminase IgA) levels are 10 times or above the positive level for celiac disease--and you are above that level. According to the latest research, if the blood test results are at certain high levels that range between 5-10 times the reference range for a positive celiac disease diagnosis, it may not be necessary to confirm the results using an endoscopy/biopsy: Blood Test Alone Can Diagnose Celiac Disease in Most Children and Adults TGA-IgA at or Above Five Times Normal Limit in Kids Indicates Celiac Disease in Nearly All Cases No More Biopsies to Diagnose Celiac Disease in Children! May I ask why you've had so many past tTg-IgA tests done, and many of them seem to have been done 3 times during short time intervals?    
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