Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • 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

8 year with Coeliac

Dan Maggs
 Share

Recommended Posts

Dan Maggs Newbie
Dan Maggs
Posted

Hello

My daughter who is 8 was diagnosed with Coeliac at 4 years old. Her symptoms were tummy pains and very bizarre stool colour, extremely pale.

She is strictly gluten free and we now know if she has accidentally had gluten as she immediately is very sick and just sleeps after.

Since her diagnosis she still complains of tummy ache, is quite gassy and her stools can still be, sometimes, pale and float. This makes me think that there is still a malabsorbtion issue.

We have been back to the Dr but find them quite 'wishy washy', in other words, not much help.

My husband and I have started a food diary and have cut milk out of her diet to begin with to see if this is causing an issue..

Has anyone else experienced something similar or know what could be causing the problem...

 

Thank you

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

Celiac.com Sponsor (A8-M):


trents Grand Master
trents
Posted

Welcome to the forum, @Dan Maggs! It is a good idea to try cutting out dairy because celiacs are often lactose intolerant or cross react to the protein casein in dairy. Oats is another common cross reaction offender because the protein avenin in oats is similar to gluten.

Scott Adams Grand Master
Scott Adams
Posted

Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months.

Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal.

Is there any chance that your daughter could be getting gluten at school, perhaps from her friends at lunchtime?

 

Dan Maggs Newbie
Dan Maggs
Posted
  • Author

Hi Scott.

 

Thank you for responding.

Emily has been strictly gluten-free since diagnoses 4 years ago. We have had the odd slip up at the beginning but for the last 2 years she has been totally gluten-free.

We removed oats about 5/6 months under the instructions of the DR.

Now if Emily has gluten-free she immediately projectile vomits, however little and has bad tummy pains - she knows immediately when she has eaten Gluten. So I don't suspect school or friends (plus most of the time she takes a pack lunch.

 

We have started a food diary and are eliminating Mill at the moment to see if that makes a difference. 

Scott Adams Grand Master
Scott Adams
Posted

This article may be helpful:

 

 

  • 1 month later...
Paula McVicker Rookie
Paula McVicker
Posted

Hi DanMaggs

Congratulations on taking extreme care with your daughter's health. I bet no one has ever said that to you?!

I have a question, which you may or may not have thought about.

Has your daughter become a victim of some "bullies" that think it's funny to contaminate her food without her knowledge just to see her reactions?

It's an awful thing to think about but I myself experienced a lot of this type of thing growing up & it's extremely hard to detect.

After all an ounce of gluten is all it takes.

Good luck on your discovery journey I wish you well

RMJ Mentor
RMJ
Posted

Has your daughter had repeat antibody tests?  If so, are they in the normal range or still elevated?

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

Celiac.com Sponsor (A8-M):


trents Grand Master
trents
Posted
14 minutes ago, RMJ said:

Has your daughter had repeat antibody tests?  If so, are they in the normal range or still elevated?

Good question and should be pursued to rule out cross contamination or other overlooked gluten exposure.

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
 Share
Go to topic listing

  • 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
      - trents replied to numike's topic in Food Intolerance & Leaky Gut
      3

      is my cleiac disease gone?

      It would be interesting to see if you were tested again for blood antibodies after abandoning the gluten free diet for several weeks to a few months what the results would be. Don't misunderstand me. I'm not necessarily suggesting you do this but it is an option to think about. I guess I'm saying there is a question in my mind as to whether you actually ever...
    2. numike
      - numike replied to numike's topic in Food Intolerance & Leaky Gut
      3

      is my cleiac disease gone?

      Thank you for the reply In the early 2000's I did not have the endoscopy nor the biopsy I do not have those initial records I have only consulted a GI drs in the USA
    3. trents
      - trents replied to numike's topic in Food Intolerance & Leaky Gut
      3

      is my cleiac disease gone?

      Welcome to the forum, @numike! We sometimes get reports like yours from community members who believe their celiac disease has "gone away." We think there can sometimes be cases of remission but not long term healing and that continued consumption of gluten will eventually result in a relapse. This is the state of our knowledge at this point but there...
    4. numike
      - numike posted a topic in Food Intolerance & Leaky Gut
      3

      is my cleiac disease gone?

      Check out this celiac story I was diagnosed early 2000s with the blood test since then I have for the most part maintained a gluten-free diet Recently (August 2025) I drove from Southern Illinois to Lake Erie Ohio On the drive back I was extremely hungry and I had a coupon at a hamburger chain and I stopped and forgot to request gluten-free bun etc...
    5. Scott Adams
      - Scott Adams replied to Fabrizio's topic in Related Issues & Disorders
      17

      Kan-101

      I agree, and generally it means that it isn't working in a high enough percentage of participants to continue pursuing it.
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,274
    • Most Online (within 30 mins)
      7,748
    pgibson417
    Newest Member
    pgibson417
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • trents
      is my cleiac disease gone?

      By trents · Posted

      It would be interesting to see if you were tested again for blood antibodies after abandoning the gluten free diet for several weeks to a few months what the results would be. Don't misunderstand me. I'm not necessarily suggesting you do this but it is an option to think about. I guess I'm saying there is a question in my mind as to whether you actually ever had celiac disease. As I said above, the blood antibody testing can yield false positives. And it is also true that celiac-like symptoms can be produced by other medical conditions.
    • numike
      is my cleiac disease gone?

      By numike · Posted

      Thank you for the reply In the early 2000's I did not have the endoscopy nor the biopsy I do not have those initial records I have only consulted a GI drs in the USA 
    • trents
      is my cleiac disease gone?

      By trents · Posted

      Welcome to the forum, @numike! We sometimes get reports like yours from community members who believe their celiac disease has "gone away." We think there can sometimes be cases of remission but not long term healing and that continued consumption of gluten will eventually result in a relapse. This is the state of our knowledge at this point but there is still a lot we don't know and celiac disease continues to surprise us with new findings on a frequent basis. So, we would not advise you to abandon a strict gluten-free diet. Perhaps you can draw consolation from the fact that at the present time you seem to be able to consume gluten without consequences when in situations where you do not have the option to eat gluten-free. But I would advise you to not generalize your recent experience such that you throw caution to the wind. But I want to go back to what you said about being diagnosed by blood test in the early 2000's. Did you not also have that confirmed with an endoscopy and biopsy of the small bowel lining? Normally, a celiac disease diagnosis is not concluded based on a blood test alone because there can be false positives. What kind of doctor did this testing? Was it done in the U.S. or overseas? In the last few years, it has become common in the U.K. to grant a celiac diagnosis from blood testing alone if the antibody test scores are 10x normal or greater. But that practice has not caught on in the U.S. yet and was not in place internationally in the early 2000's. Do you have a record of the tests that were done, the scores and also the reference ranges for negative vs. positive for the tests?
    • numike
      is my cleiac disease gone?

      By numike · Posted

      Check out this celiac story  I was diagnosed early 2000s with the blood test  since then I have for the most part maintained a gluten-free diet  Recently (August 2025) I drove from Southern Illinois to Lake Erie Ohio On the drive back I was extremely hungry and I had a coupon at a hamburger chain and I stopped and forgot to request gluten-free bun etc and quickly consumed two hamburgers. I promptly ate both of them and had absolutely no problem since then I've been eating plenty of gluten  Is my celiac gone?  Insert: No, celiac disease cannot just end because there is no cure for it; however, a strict, lifelong gluten-free diet allows the small intestine to heal and symptoms to go away. To manage the condition effectively, you must strictly avoid all sources of gluten, including wheat, barley, and rye, which are common in the American diet. Sticking to the diet can lead to significant symptom improvement and intestinal healing, but it requires ongoing commitment and monitoring with a healthcare professional  Regarding medical test I had My stools analyzed Giardia Ag Cryptosporidium Ag and they came back negative  I had the lactulose test and it came back high so I'm on two weeks of heavy antibiotics That still has not stopped me from eating gluten. Here's what I think is going on and I hope to have your opinion regarding it  Since I've been gluten-free for so long my intestinal tract has repaired itself consequently anything I eat with gluten now just bounces right off with no damage to my gut  however  when I asked AI what was going on the reply was celiac has not gone away and  if I continue to eat gluten I'm going to have problems   I look forward to your sage advice as to what the heck is going on with me Thank you for reading Mike 09112025
    • Scott Adams
      Kan-101

      By Scott Adams · Posted

      I agree, and generally it means that it isn't working in a high enough percentage of participants to continue pursuing it.
×
×
  • Create New...