Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.


  • Celiac.com Sponsor (A1):
    Celiac.com Sponsor (A1-M):
  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Lost...


klink3r

Recommended Posts

klink3r Newbie

So I had a severe bout of diarrhea about a month and a half ago. After two years of on and off diarrhea and constipation (not to mention I lost 25 lbs with this particular bout), we went to the doctor, who ordered blood tests. They came back positive for celiac disease and I began a gluten free diet and scheduled a small bowel biopsy to make the diagnosis official. The gluten free diet did not seem to do much for me in the or three weeks before the biopsy. The week before the biopsy I went off the diet so that any damage to the small bowel could be seen. I did not seem to have any negative effects of eating gluten again. The doctor did both a small bowel biopsy and a colonoscopy. He told me afterwards that, just by looking, he did not see any signs of celiac, but we wouldn't know until the biopsy came back. He also scheduled me for a small bowel series the following week. When i went into the series, I was told by the radiologist that he could not see any blockages or signs of celiac either. Today, we got the results of new blood tests and the biopsies back.

1. The small bowel biopsy was clear.

2. The colonoscopy was clear.

3. A blood test for IBD and Crohns was positive.

Obviously I am at a loss. What else could a positive blood test for celiac mean? And if my colonoscopy was clear, how can i be positive for Crohn's disease?

I'm 18 years old, otherwise healthy. I don't exercise as much as i am told i should but I'm not morbidly overweight. The weightloss that came from the bout of diarrhea pushed me into the 'healthy' point of the BMI scale.

I leave for school six hours away in less than two weeks, so any advice or intel would be greatly appreciated. :)


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



Celiac.com Sponsor (A8-M):



tygwyn Newbie

From what I've read, one week back on Gluten just isnt enough. You shouldnt have been put on a gluten free diet if a biopsy was scheduled so soon after. This is a snippet from the Open Original Shared Link:

Do not commence a gluten free diet prior to being tested for coeliac disease. If a gluten free diet has been adopted, the tests used to diagnose coeliac disease will be unreliable, and may be falsely negative.

If gluten has been removed from the diet, a normal diet must be resumed for at least six weeks prior to testing. During this

nasalady Contributor
So I had a severe bout of diarrhea about a month and a half ago. After two years of on and off diarrhea and constipation (not to mention I lost 25 lbs with this particular bout), we went to the doctor, who ordered blood tests. They came back positive for celiac disease and I began a gluten free diet and scheduled a small bowel biopsy to make the diagnosis official. The gluten free diet did not seem to do much for me in the or three weeks before the biopsy. The week before the biopsy I went off the diet so that any damage to the small bowel could be seen. I did not seem to have any negative effects of eating gluten again. The doctor did both a small bowel biopsy and a colonoscopy. He told me afterwards that, just by looking, he did not see any signs of celiac, but we wouldn't know until the biopsy came back. He also scheduled me for a small bowel series the following week. When i went into the series, I was told by the radiologist that he could not see any blockages or signs of celiac either. Today, we got the results of new blood tests and the biopsies back.

1. The small bowel biopsy was clear.

2. The colonoscopy was clear.

3. A blood test for IBD and Crohns was positive.

Obviously I am at a loss. What else could a positive blood test for celiac mean? And if my colonoscopy was clear, how can i be positive for Crohn's disease?

I'm 18 years old, otherwise healthy. I don't exercise as much as i am told i should but I'm not morbidly overweight. The weightloss that came from the bout of diarrhea pushed me into the 'healthy' point of the BMI scale.

I leave for school six hours away in less than two weeks, so any advice or intel would be greatly appreciated. :)

You are very young....you can easily have a positive blood test, which means that they detected the autoantibodies circulating in your bloodstream, before any associated damage gets bad enough to detect. Also, you went gluten free before the biopsy and went back on gluten for only a week, which is definitely not long enough! You should eat LOTS of gluten for at least 2 - 3 months prior to biopsy to ensure that damaged villi will show up.

Another thing to think about is the fact that your small intestine is *many* feet long, and when they take a biopsy (even if they do a proper job and take several samples instead of just two or three), it's similar to taking random samples of a football field looking for dog poo. Most of the time, unless the damage is REALLY bad and widespread (which at your age may not yet be the case), you're not going to be lucky enough to hit a damaged area.

Also, Crohn's is often associated with celiac disease and the gluten free diet is recommended for Crohn's as well. Just because the gluten free diet did not do much for you in the few weeks you were on it, and you had no symptoms when you went back on gluten does NOT mean that you don't need to eat gluten free. If you have celiac disease and/or Crohn's you most certainly do need to be gluten free for the rest of your life!

I wasn't aware that there was any blood test for IBD!? are you talking about irritable bowel disease? That's just a "catch-all" diagnosis when they don't know what's wrong, IMHO. :)

Good luck!

JoAnn

P.S. I wasn't the one who originally came up with that analogy of taking samples from a large area of grass looking for doggy droppings, but I don't remember who did....was it Peter (psawyer)?? In any case, it's a great analogy!! :lol:

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - trents replied to dsfraley's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      5

      9 y/o Son Diagnosed with Celiac Disease; Persistent Symptoms: Does this Sound Familiar?

    2. - knitty kitty replied to dsfraley's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      5

      9 y/o Son Diagnosed with Celiac Disease; Persistent Symptoms: Does this Sound Familiar?

    3. - dsfraley replied to dsfraley's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      5

      9 y/o Son Diagnosed with Celiac Disease; Persistent Symptoms: Does this Sound Familiar?

    4. - knitty kitty replied to Known1's topic in Introduce Yourself / Share Stuff
      14

      Diagnosed Marsh stage 3C in January 2026

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,554
    • Most Online (within 30 mins)
      7,748

    JazmineButterfly
    Newest Member
    JazmineButterfly
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

    • There are no registered users currently online
  • Upcoming Events

  • Posts

    • trents
      Lactose intolerance is not necessarily to problem in the celiac community. Intolerance to the dairy protein casein can be the culprit as it is similar enough to gluten to cause cross reactivity in a fairly significant element of the celiac population. Oats and dairy are common cross reactors in the celiac community. Eggs, corn and soy are also common cross reactors but oats and dairy are the two big ones.
    • knitty kitty
      Thought I'd leave you the references: Hiding in Plain Sight: Modern Thiamine Deficiency https://pmc.ncbi.nlm.nih.gov/articles/PMC8533683/ "The early symptoms of TD are non-specific and may be easily attributed to any number of disease processes. Unrelenting or uncharacteristic fatigue, changes in mood with a tendency towards hyper-irritability and mood lability are common [4]. A sense of mental fuzziness and subtle decrements in memory are often reported, along with loss of appetite, sleep disturbances and/or gastrointestinal (GI) discomfort and dysmotility. Food intolerances and vomiting may develop as the deficiency progresses. Experimental [5] and case literature [6] suggest GI discomfort and dysmotility may be more prevalent early indications of TD than currently appreciated. A form of GI beriberi has been identified but is under-recognized [7]." and... Thiamine, gastrointestinal beriberi and acetylcholine signaling https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/  
    • dsfraley
      Thank you for these thoughts, Knitty. Trents: Yes. I would say we are taking it relatively light on his belly because it's been upset, so no heavy/excessive dairy, but he has had some cheese here and there. Not high quantities, however, and tests were negative for lactose intolerance.
    • trents
    • knitty kitty
      Being low in Thiamine B1 can cause fingers and toes to be cold all the time.  Thiamine deficiency affects body temperature regulation and sleep/wake cycles.   Thiamine deficiency-induced disruptions in the diurnal rhythm and regulation of body temperature in the rat https://pubmed.ncbi.nlm.nih.gov/9804367/
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.