Jump to content

  • You are not alone. Join Celiac.com for trusted gluten-free answers and forum support.



  • Celiac.com Sponsor (A1):
    Celiac.com Sponsor (A1-M):

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

Rusty Shackleford

Recommended Posts

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!!!

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


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.

Archived

This topic is now archived and is closed to further replies.

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. cristiana
      - cristiana replied to CC90's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      Coeliac or not coeliac

      Hi @CC90 Ah... that is very interesting. Although it is very annoying for you to have to go through it all again, I would say that almost sounds like an admission that they didn't look far enough last time? I could be wrong, but I would not be at all surprised if they find something on the next attempt. Coeliac damage can be very patchy, as I understand...
    2. CC90
      - CC90 replied to CC90's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      Coeliac or not coeliac

      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.
    3. Wheatwacked
      - Wheatwacked replied to CC90's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      Coeliac or not coeliac

      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 o...
    4. Wheatwacked
      - Wheatwacked commented on Scott Adams's article in Origins of Celiac Disease
      19

      Do Antibiotics in Babies Increase Celiac Disease Risk Later in Life? (+Video)

      In Addison’s disease, autoimmmune adrenal cortex disease adrenal glands don't make enough cortisol. At 12, it is usually caused by an autoimmune attack. It has a strong genetic link to the HLA-DQ8 gene. After 12 gluten free and 14 years on prednisone for adrenal insufficiency (symptoms like you describe from 1984 until 2014) I recently removed all c...
    5. trents
      - trents replied to CC90's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      Coeliac or not coeliac

      Cristiana asks a very relevant question. What looks normal to the naked eye may not look normal under the microscope.
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      134,190
    • Most Online (within 30 mins)
      10,442
    Lori Meier
    Newest Member
    Lori Meier
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.7k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • cristiana
      Coeliac or not coeliac

      By cristiana · Posted

      Hi @CC90 Ah... that is very interesting.  Although it is very annoying for you to have to go through it all again, I would say that almost sounds like an admission that they didn't look far enough last time?   I could be wrong, but I would not be at all surprised if they find something on the next attempt.  Coeliac damage can be very patchy, as I understand it, so that's why my own gastroenterologist always likes to point out that he's taken lots of samples!  In the kindest possible way (you don't want to upset the person doing the procedure!) I'd be inclined to tell them what happened last time and to ask them in person to take samples lower down, as  if your health system is anything like the one in my country, communication between GPs, consultants and hospitals isn't always very good.  You don't want the same mistake to be made again. You say that your first endoscopy was traumatic?  May I ask, looking at your spelling of coeliac, was this done at an NHS hospital in England?  The reason for the question is that one of my NHS diagnosed friends was not automatically offered a sedative and managed without one.  Inspired by her, I tried to have an endoscopy one time, in a private setting, without one, so that I could recover quicker, but I had to request sedative in the end it was so uncomfortable.    I am sorry that you will have to go through a gluten challenge again but to make things easier, ensure you eat things containing gluten that you will miss should you have to go gluten free one day. 😂 I was told to eat 2 slices of normal wholemeal bread or the equivalent every day in the weeks before , but I also opted for Weetabix and dozens of Penguin chocolate biscuits.  (I had a very tight headache across my temple for days before the procedure, which I thought was interesting as I had that frequently growing up. - must have been a coeliac symptom!)  Anyway, I do hope you soon get the answers you are looking for and do keep us posted. Cristiana  
    • 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.      
    • Wheatwacked
      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.
×
×
  • Create New...