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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
      Not necessarily. The "Gluten Free" label means not more than 20ppm of gluten in the product which is often not enough for super sensitive celiacs. You would need to be looking for "Certified Gluten Free" (GFCO endorsed) which means no more than 10ppm of gluten. Having said that, "Gluten Free" doesn't mean that there will necessarily be more gluten than "Certified Gluten" in any given batch run. It just means there could be. 
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      I think it is wise to seek a second opinion from a GI doc and to go on a gluten free diet in the meantime. The GI doc may look at all the evidence, including the biopsy report, and conclude you don't need anything else to reach a dx of celiac disease and so, there would be no need for a gluten challenge. But if the GI doc does want to do more testing, you can worry about the gluten challenge at that time. But between now and the time of the appointment, if your symptoms improve on a gluten free diet, that is more evidence. Just keep in mind that if a gluten challenge is called for, the bare minimum challenge length is two weeks of the daily consumption of at least 10g of gluten, which is about the amount found in 4-6 slices of wheat bread. But, I would count on giving it four weeks to be sure.
    • Paulaannefthimiou
      Are Bobresmill gluten free oats ok for sensitive celiacs?
    • jenniber
      thank you both for the insights. i agree, im going to back off on dairy and try sucraid. thanks for the tip about protein powder, i will look for whey protein powder/drinks!   i don’t understand why my doctor refused to order it either. so i’ve decided i’m not going to her again, and i’m going to get a second opinion with a GI recommended to me by someone with celiac. unfortunately my first appointment isn’t until February 17th. do you think i should go gluten free now or wait until after i meet with the new doctor? i’m torn about what i should do, i dont know if she is going to want to repeat the endoscopy, and i know ill have to be eating gluten to have a positive biopsy. i could always do the gluten challenge on the other hand if she does want to repeat the biopsy.    thanks again, i appreciate the support here. i’ve learned a lot from these boards. i dont know anyone in real life with celiac.
    • trents
      Let me suggest an adjustment to your terminology. "Celiac disease" and "gluten intolerance" are the same. The other gluten disorder you refer to is NCGS (Non Celiac Gluten Sensitivity) which is often referred to as being "gluten sensitive". Having said that, the reality is there is still much inconsistency in how people use these terms. Since celiac disease does damage to the small bowel lining it often results in nutritional deficiencies such as anemia. NCGS does not damage the small bowel lining so your history of anemia may suggest you have celiac disease as opposed to NCGS. But either way, a gluten-free diet is in order. NCGS can cause bodily damage in other ways, particularly to neurological systems.
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