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

Pre-Diagnoses Questions


My3LittleEs

Recommended Posts

My3LittleEs Newbie

Hi, My name is Lori and I am trying to figure out what is going on with my 3yr old daughter, and I am of course driving myself nuts researching while I wait for her test results. I am going to write up a list of her symptoms and see if any of this sounds familiar to anyone. I was led here by multiple internet searches that keep steering me towards Celiac disease. Thank you in advance for your help. Even if this does not sound like Celiac can anyone point me in another direction?

 

 >The main symptom that triggered the concern has been the loss of 4 baby teeth with 2 more that are currently loose. She will not be 4 until almost June and she has lost all of them since Sept 2013. The teeth do not show any signs of decay. They just get loose and fall out. She lost all 4 of them with in 5 months. 

 

>2nd symptom is chronic stomach pain. She complains of stomach main every day and has for a couple of months. She is currently taking Zantac to see if that helps but so far it is not. She has occasional diarrhea but nothing that was causing me real concern.  

>She has asthma. She was diagnosed over a year ago and other than a couple of months here and there she is never really under control. She has had basic allergy testing which came back positive for dogs, dust mites and mold. 

>She has not gained hardly any weight in close to 2 years. On the other hand she is tall for her age but very skinny. Just no weight gain to speak of. 

>She is very clumsy. She can fall down leaning against a wall. She has always been accident prone. 

That is everything I can think of for now. I feel like I am missing something, I will add anything I think of. We are currently waiting on her blood work, urinalysis etc. We are also being told to see a Hematologist.

The reason I am here is because when I search for early tooth loss and other combinations of symptoms Celiac keeps popping up. 

Last Friday her pediatrician ordered the following tests:

Complete Blood Count with Diff

Comprehensive Metabolic Panel

Thyroid Stimulating Hormone

Urinalysis Microscopic if Indicated

Vitamin D, 25 Hydroxy Total

XRay Bone Age Study (Xray of her Left hand)

Calcium/ Creatinine Ratio Random

Do any of these symptoms really fit with Celiac Disease? Does any of this sound familiar. Thank you in advance for your help. :)


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



Celiac.com Sponsor (A8-M):



GottaSki Mentor

Welcome Lori and little one!

 

Yes, all of those symptoms can be associated with Celiac Disease and she should have a complete celiac antibody panel.

 

Request written copies of all her labs.

 

If gluten is an issue you may see low nutrients in the CMP, Calcium or D panels.  Sometimes there are indicators on the CBC as well...but not always.

 

Hang in there Mom and keep asking questions!

NoGlutenCooties Contributor

Welcome to the Forum!

 

I agree with GottaSki that your daughter's symptoms defininitely fit Celiac and she should have the full panel of blood work done.  And while I don't have kids myself, I just wanted to add that I believe testing in young children can be trickier than it is in adults because they may not be old enough to have produced enough antibodies for them to show up on the tests in the numbers that would appear for an adult.  So even if the tests come back "inconclusive" or a "weak positive", you may want to ask that the doctor do the endoscopy to check for villi damage just to be sure.

 

Good  luck and let us know how you make out.

My3LittleEs Newbie

Thank you both. I also want to add that she has had a red rash on her buttocks all winter that I thought was dry skin. Now I see that is another symptom. I will be glad to be on the other side of this testing so that we can get started on whatever needs to be done. 

bartfull Rising Star

These are the tests you should ask for:

 

tTG IgA and tTG IgG

DGP IgA and DGP IgG

EMA IgA

total serum IgA control test

 

There are also tests for the genes involved, although not everyone who has the genes gets celiac, and some people WITHOUT the genes do.

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. - tiffanygosci replied to tiffanygosci's topic in Introduce Yourself / Share Stuff
      1

      Celiac support is hard to find

    2. - trents replied to mamaof7's topic in Parents, Friends and Loved Ones of Celiacs
      1

      Help understand results

    3. - mamaof7 posted a topic in Parents, Friends and Loved Ones of Celiacs
      1

      Help understand results

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

      Newly diagnosed mam to coeliac 11 year old

    5. - tiffanygosci posted a topic in Introduce Yourself / Share Stuff
      1

      Celiac support is hard to find

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

    • Total Members
      132,955
    • Most Online (within 30 mins)
      7,748

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

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • tiffanygosci
      EDIT: I did find a monthly Zoom meeting for Celiacs through the Celiac Disease Foundation, so I'll be able to talk with some other people on January 15. And I also found a Celiac Living podcast on Spotify made by a celiac. I feel a little bit better now and I am still hoping I will find some more personal connections in my area.
    • trents
      Welcome to the celiac.com community, @mamaof7! It means for the one celiac disease antibody test that was ordered, she tested negative. However, other tests should have been ordered, especially for someone so young who would have an immature immune system where there would be a high probability of being IGA deficient.  The one test that was ordered was an IGA-based antibody test. It is not the only IGA antibody test for celiac disease that can be run. The most common one ordered by physicians is the TTG-IGA. Whenever IGA antibody tests are ordered, a "total IGA" test should be included to check for IGA deficiency. In the case of IGA deficiency, all other IGA tests results will be inaccurate. There is another category of celiac disease antibody tests that can be used in the case of IGA deficiency. They are known as IGG tests. I will attach an article that gives an overview of celiac disease antibody tests. All this to say, I would not trust the results of the testing you have had done and I would not rule out your daughter having celiac disease. I would seek further testing at some point but it would require your daughter to have been eating normal amounts of gluten for weeks/months in order for the testing to be valid. It is also possible she does not have celiac disease (aka, "gluten intolerance") but that she has NCGS (Non Celiac Gluten Sensitivity, or just "gluten sensitivity" for short) which is more common. The difference is that celiac disease is an autoimmune disorder that damages the lining of the small bowel whereas NCGS does not autoimmune in nature and does not damage the lining of the small bowel, though the two conditions share many of the same symptoms. We have testing to diagnose celiac disease but there are no tests for NCGS. To arrive at a diagnosis of NCGS, celiac disease must first be ruled out. A gluten free diet is the solution to both maladies.   
    • mamaof7
      For reference, daughter is 18 mths old. Was having painful severe constipation with pale stool and blood also bloating (tight extended belly.) Liver and gallbladder are normal. Ultrasound was normal. Dr ordered celiac blood test. We took her off gluten after blood draw. She is sleeping better, no longer bloated and stools are still off color but not painful.    "GLIADIN (DEAMID) AB, IGA FLU Value  0.84 Reference Range: 0.00-4.99 No further celiac disease serology testing to be performed. INTERPRETIVE INFORMATION: Deamidated Gliadin Peptide (DGP) Ab, IgA A positive deamidated gliadin (DGP) IgA antibody result is associated with celiac disease but is not to be used as an initial screening test due to its low specificity and only occasional positivity in celiac disease patients who are negative for tissue transglutaminase (tTG) IgA antibody."   Anyone know what in the world this means. She isn't scheduled to see GI until late April. 
    • Dizzyma
      Hi Trent and Cristiana, thank you so much for taking the time out to reply to me.  My daughters GP requested bloods, they came back as showing a possibility of celiac disease, she advised me to continue feeding gluten as normal and wait on a hospital appointment. When we got that the doctor was quite annoyed that the gp hadn’t advised to go gluten free immediately as she explained that her numbers were so high that celiac disease was fairly evident. That doctor advised to switch to a gluten-free diet immediately which we did but she also got her bloods taken again that day as it made sense to double check considering she was maintaining a normal diet and they came back with a result of 128. The hospital doctor was so confident of celiac disease that she didn’t bother with any further testing. Cristiana, thank you for the information on the coeliac UK site however I am in the Rrpublic of Ireland so I’ll have to try to link in with supports there. I appreciate your replies I guess I’ll figure things as we go I just feel so bad for her, her skin is so sore around her mouth  and it looks bad at an age when looks are becoming important. Also her anxiety is affecting her sleep so I may have to look into some kind of therapy to help as I don’t think I am enough to help. thanks once again, it’s great to be able to reach out xx   
    • tiffanygosci
      I have been feeling so lonely in this celiac disease journey (which I've only been on for over 4 months). I have one friend who is celiac, and she has been a great help to me. I got diagnosed at the beginning of October 2025, so I got hit with all the major food holidays. I think I navigated them well, but I did make a couple mistakes along the way regarding CC. I have been Googling "celiac support groups" for the last couple days and there is nothing in the Northern Illinois area. I might reach out to my GI and dietician, who are through NW Medicine, to see if there are any groups near me. I cannot join any social media groups because I deleted my FB and IG last year and I have no desire to have them back (although I almost made a FB because I'm desperate to connect with more celiacs). I'm glad I have this forum. I am praying God will lead me to more people to relate to. In my opinion, celiac disease is like the only food- related autoimmune disease and it's so isolating. Thanks for walking alongside of me! I'm glad I know how to help my body but it's still not easy to deal with.
×
×
  • 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.