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

7 Year Old, Symptoms, Negative Blood Test


mum2girls

Recommended Posts

mum2girls Newbie

HI, I am new here and searching for answers.

 

My now 7 year old has been having bad digestive issues for the past 18 months.  Over that time the Paeditrician has done a lactose intolerance test which was negative and a few months later a coeliac blood test, also negative.  He also did a stool sample,  which was normal.  Along with other blood tests for various other illness all of which came back normal.    Her paediatrician sent her to a specialist paediatrician for an ultrasound scan , which was fine, although he wanted to remove her appendices, a 2nd opinion on that one agreed it was unnecessary.

 

Her symptoms are daily stomach aches, headaches, sometimes a hugely bloated stomach (other kids at school have even commented on it).  Burps that could outdo my husband,  flatulence that often leaves a liquid poo stain in her underwear. Diarrohea and constipation,   huge stools that float and often look greyish.      She is very thin  and is extremely pale all the time,  her teacher has commented on how pale she is, and her hair is very dull.   Her new adult teeth are very yellow.   She has a very poor appetite, but in the past 2 weeks, she has developed a big appetite and always claiming to be hungry,  she also seems to be drinking more water and seems to be having urgent need to urinate which has led to a few accidents on the bathroom floor. She has a very bad smelling breath. 

 

So many of her symptoms point to coeliac or lactose intolerance, but the blood tests are normal.

 

Any ideas what my next steps should be,  is anything I can insist that the Dr. tests her for, any other tests I should request.

 

Thank you very much for any help.


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



Celiac.com Sponsor (A8-M):



LauraTX Rising Star

Have they tested her for diabetes?  The thirst and bad breath can be symptoms of juvenile diabetes.  Also, if you have the results of the tests they ran for Celiac, you can post them and we can let you know if a test was missed.

mum2girls Newbie

Thank you for your response.

 

She has had a fasting glucose test and it was normal,  the thirst is a very recent thing.   All the other symptoms are ongoing for 18 months now.

 

These are the blood tests which were done by her paediatrician,

 

Coeliac Screen :- 

 

Endomysial Antibodies - Negative

Tissue Transglutaminase  - 0.10 u/ml (ref range 0.0 -10.0)

Immunoglobulin A - 1.35 g/L ( ref range 0.34 - 3.05)

SMRI Collaborator

Along with diabetes, I would test for Cystic Fibrosis as well.  It disturbs me that your doctors are not the ones seeking other testing.  She is obviously a sick child. SOMETHING is going on.

mum2girls Newbie

Cystic Fibrosis?  isn't that a genetic lung disease, I believe all kids are tested for that at birth, so I am assuming that is not anything we need to worry about.   

 

I really do believe something is going on in her intestines,  I have booked an appointment with a gastroenterologist but there are no paediatric ones in our area, unfortunately. 

BlessedMommy Rising Star

Yes, post all the celiac blood tests that were run.

 

I'm sorry that she's ill and I hope that you get answers soon!

mum2girls Newbie

These are the tests which the doctor did back in April 2014

 

oeliac Screen :- 

 

Endomysial Antibodies - Negative

Tissue Transglutaminase  - 0.10 u/ml (ref range 0.0 -10.0)

Immunoglobulin A - 1.35 g/L ( ref range 0.34 - 3.05)


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



Celiac.com Sponsor (A8-M):



frieze Community Regular

she needs a completed celiac work up, and an immediate check for diabetes, IMMEDIATE.  you may need to go to a bigger city/children's hospital, do not waste time.

SMRI Collaborator

Cystic Fibrosis?  isn't that a genetic lung disease, I believe all kids are tested for that at birth, so I am assuming that is not anything we need to worry about.   

 

I really do believe something is going on in her intestines,  I have booked an appointment with a gastroenterologist but there are no paediatric ones in our area, unfortunately. 

 

yes it is mostly a lung condition, and as far as I know, not everyone is checked automatically for CF.  CF also has a GI component and CF does not always show up at birth.

mum2girls Newbie

Thank you SMRI,  I just googled it and it is the first time I have ever read about the GI implications of CF.  I do believe she was screened for CF, she was born premature in Belgium with some lung issues and spent several weeks in NICU, but I didn't realise it might not show up at birth.   

Archived

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

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

    • Total Members
      132,806
    • Most Online (within 30 mins)
      7,748

    JBeckmon
    Newest Member
    JBeckmon
    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

    • Russ H
      The anti-endomysial antibody test is an old test that is generally reported as positive or negative - a lab technician looks down a microscope to check for fluorescence of the sample. It is less sensitive but more specific for coeliac disease than IgA tTG2. Hence, it is not "barely positive" - it is positive. People diagnosed in childhood recover much more quickly than adults.  I would look at testing all 1st degree relatives - parents, siblings.
    • xxnonamexx
      What about digestive enzymes that I hear help? I take align 5x probiotics daily.
    • Samanthaeileen1
      thank you RMJ! That is very helpful advice. Good to know we aren’t crazy if we don’t do the endoscopy. We are going to try the gluten free and see how symptoms and levels improve.    thank you Wheatwacked (love the username lol) that is also reassuring. Thankfully she has an amazing and experienced pediatrician. And yesss I forgot to mention the poop! She has the weirdest poop issues.    How long did it take y'all to start seeing improvement in symptoms? 
    • Wheatwacked
      My son was diagnosed when he was weaned in 1976 after several endoscopies.  Given your two year old's symptoms and your family history and your pediatrition advocating for the dx, I would agree.  Whether an endoscopy is positive or negative is irrelevant.   That may happen even with endoscopy.  Pick your doctors with that in mind. In the end you save the potential trauma of the endoscopy for your baby.   Mine also had really nasty poop.  His doctor started him on Nutramigen Infant because at the time it was the only product that was hypo allergenic and had complete nutrition. The improvement was immediate.
    • RMJ
      So her tissue transglutaminase antibody is almost 4x the upper end of the normal range - likely a real result. The other things you can do besides an endoscopy would be: 1.  Genetic testing.  Unfortunately a large proportion of the population has genes permissive for celiac disease, but only a small proportion of those with the genes have it. With family history it is likely she has the genes. 2.  Try a gluten free diet and see if the symptoms go away AND the antibody levels return to normal. (This is what I would do). Endoscopies aren’t always accurate in patients as young as your daughter. Unfortunately, without an endoscopy, some doctor later in her life may question whether she really has celiac disease or not, and you’ll need to be a fierce mama bear to defend the diagnosis! Be sure you have a good written record of her current pediatrician’s diagnosis. Doing a gluten challenge for an endoscopy later in life could cause a very uncomfortable level of symptoms.   Having yourself, your husband and your son tested would be a great idea.  
×
×
  • 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.