5 year old being tested for coeliac

[Mpove]

My nearly 6 year old had another set of bloods done yesterday because of suspected coeliac disease. She's been complaining of tummy ache and achy legs/ arms for months and months! Last time she had bloods done the only thing that came bk was low heamoglobin. She's dairy and soya free too. Do you think her achy legs could be connected? Could it be coeliac? Thanks. 

[cyclinglady]

I am sorry your child is ill.  Anemia (low hemoglobin) can be a sign of celiac disease, it was for me.  

Make sure your child receives all the celiac disease blood tests.  Usually, the TTG IgA and TTG IgG tests are given because they catch most celiacs for the money.  But children often develop antibodies slowly.  Ask for the DGP IgA and the DGP IgG and the EMA tests.  Ask to check if this Immunoglobulin A (IgA) levels are normal.  Some celiacs are Immunoglobulin A deficient and in the case of celiac disease testing, the DGP and TTG IgA versions will not work.  Know too that about 10% of celiacs are seronegative.  There blood tests will not be positive.  ALL CELIAC TESTING REQUIRES HER TO BE ON A FULL GLUTEN DIET 8 to 12 WEEKS PRIOR TO THE BLOOD TESTS.   See  if you can get a Gastroenterologist consult.  Something is not right with your child!  

I wish her well!   

Testing info:

https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/

Edited February 15, 2020 by cyclinglady

[Mpove]

44 minutes ago, cyclinglady said:

I am sorry your child is ill.  Anemia (low hemoglobin) can be a sign of celiac disease, it was for me.  

Make sure your child receives all the celiac disease blood tests.  Usually, the TTG IgA and TTG IgG tests are given because they catch most celiacs for the money.  But children often develop antibodies slowly.  Ask for the DGP IgA and the DGP IgG and the EMA tests.  Ask to check if this Immunoglobulin A (IgA) levels are normal.  Some celiacs are Immunoglobulin A deficient and in the case of celiac disease testing, the DGP and TTG IgA versions will not work.  Know too that about 10% of celiacs are seronegative.  There blood tests will not be positive.  ALL CELIAC TESTING REQUIRES HER TO BE ON A FULL GLUTEN DIET 8 to 12 WEEKS PRIOR TO THE BLOOD TESTS.   See  if you can get a Gastroenterologist consult.  Something is not right with your child!  

I wish her well!   

Testing info:

https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/

Thank you cyclinglady, I have no idea which tests they will use, it just says coeliac screening? We are in the UK if that makes much difference, going by symptoms does it sound like she could suffer with it? I know something is not right with her but I just don't know what. 

Thanks again for your reply 

[GFinDC]

Hi,

Yes, her leg pain can be related to celiac.  Celiac can cause malabsorption of important nutrients like calcium, vitamin D, boron, copper, manganese, B vitamins etc.  So important elements she needs for proper bone growth can be missing.  One of the classic signs of celiac in children is stunted growth and deformed, weak bones.  Plus missing or weak dental enamel on teeth.

[cyclinglady]

She does sound like she could have celiac disease, but it is hard to say.  There are over 200 different symptoms attributed to celiac disease and those often overlap with other illnesses.  So, doctors have to rely on blood tests and small intestinal biopsies to diagnose celiac disease.  Anemia (low hemoglobin) is not normal in a six year old.  There is something wrong.  Keep pushing for answers. 

Find out exactly what was in the celiac screening.  I live in the US and I know that normally doctors run the TTG test which is really good, but does not catch all celiacs (saving money is also a factor).  If my doctor had not run the entire panel, my diagnosis would have been missed.