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

Rusty Shackleford

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Rusty Shackleford Newbie
Rusty Shackleford
Posted

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
mushroom
Posted

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
kareng
Posted

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
GFinDC
Posted

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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    • CC90
      Coeliac or not coeliac

      By CC90 · Posted

      Hi Cristiana   Yes I've had the biopsy results showing normal villi and intestinal mucosa.  The repeat endoscopy (requested by the gastro doc) would be to take samples from further into the intestine than the previous endoscopy reached.      
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      Coeliac or not coeliac

      By Wheatwacked · Posted

      Transglutaminase IgA is the gold-standard blood test for celiac disease. Sensitivity of over 90% and specificity of 95–99%. It rarely produces false positives.  An elevated level means your immune system is reacting to gluten.  Non-Celiac Gluten Sensitivity (NCGS) does not typically cause high levels of tTG-IgA. Unfortunately the protocols for a diagnosis of Celiac Disease are aimed at proving you don't have it, leaving you twisting in the wind. Genetic testing and improvement on a trial gluten free diet, also avoiding milk protein, will likely show improvement in short order if it is Celiac; but will that satisfy the medical system for a diagnosis? If you do end up scheduling a repeat endoscopy, be sure to eat up to 10 grams of gluten for 8 - 12 weeks.  You want  to create maximum damage. Not a medical opinion, but my vote is yes.
    • trents
      Coeliac or not coeliac

      By trents · Posted

      Cristiana asks a very relevant question. What looks normal to the naked eye may not look normal under the microscope.
    • cristiana
      Coeliac or not coeliac

      By cristiana · Posted

      Hello @CC90 Can I just ask a question: have you actually been told that your biopsy were normal, or just that your stomach, duodenum and small intestine looked normal? The reason I ask is that when I had my endoscopy, I was told everything looked normal.  My TTG score was completely through the roof at the time, greater than 100 which was then the cut off max. for my local lab.  Yet when my biopsy results came back, I was told I was stage 3 on the Marsh scale.  I've come across the same thing with at least one other person on this forum who was told everything looked normal, but the report was not talking about the actual biopsy samples, which had to be looked at through a microscope and came back abnormal.
    • trents
      Coeliac or not coeliac

      By trents · Posted

      My bad. I should have reread your first post as for some reason I was thinking your TTG was within normal range. While we are talking about celiac antibody blood work, you might not realize that there is not yet an industry standard rating scale in use for those blood tests so just having a raw number with out the reference scale can be less than helpful, especially when the test results are marginal. But a result of 87.4 is probably out of the normal range and into the positive range for any lab's scale. But back to the question of why your endoscopy/biopsy didn't show damage despite significantly positive TTG. Because they took the trouble to take seven samples, it is not likely they missed damage because of it being patchy. The other possibility is that there hasn't been time for the damage to show up. How long have you been experiencing the symptoms you describe in your first post? Having said all that, there are other medical conditions that can cause elevated TTG-IGA values and sometimes they are transient issues. I think it would be wise to ask for another TTG-IGA before the repeat endoscopy to see if it is still high.  Knitty kitty's suggestion of getting genetic testing done is also something to think about. About 35% of the general population will have one or both genes that are markers for the potential to develop active celiac disease but only about 1% of the population actually develop celiac disease. So, having a celiac potential gene cannot be used to definitively diagnose celiac disease but it can be realistically used to rule it out if you don't have either of the genes. If your symptoms persist, and all testing is complete and the follow-up endoscopy/biopsy still shows no damage, you should consider trialing a gluten free diet for a few months to see if symptoms improve. If not celiac disease, you could have NCGS (Non Celiac Gluten Sensitivity). 
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