9 year old- questionable results

[ABP]

My nine-year-old daughter has suffered with severe constipation and bloating for years as well as frequent mouth sores, and keratosis Polaris on her arms. She also has recently decreased on her growth curve her % going down gradually.  After seeing a gastroenterologist, her IgG GLIADIN (DEAMIDATED) AB (IGG) was 22.4 while her IGA was normal. Her TISSUE TRANSGLUTAMINASE AB, IGA was 11.9.  Most recently her genetic test for celiac was positive. 

After an endoscopy her tissue showed inflammation of the tissue as well as , increased intraepithelial lymphocytes (IELs) but there was no blunting of the change in the villi. 
 

It seems that every result that we get one out of two things positive rather than all leading to an inconclusive diagnosis. While we do have another appointment with the doctor to go over the results. I'm curious based on this information what others think. 
 

I would hate to have her eliminate gluten if not necessary- but also don't want to not remove if it is necessary. 
 

Signed Confused and Concerned Mama

[trents]

Welcome to the forum, @ABP!

We can't comment on the test numbers you give as you didn't include the range for negative. Different labs use different units and different ranges. There are no industry standards for this so we need more information.

If your daughter doesn't have celiac disease she still could have NCGS (Non Celiac Gluten Sensitivity) which some experts believe can be a precursor to celiac disease and is 10x more common than celiac disease. However, there is no test for it yet but it does share many of the same symptoms with celiac disease. Both require complete abstinence from gluten. 

It is seldom the case during testing where all tests are positive, even for those who do have celiac disease. This is no different than when diagnosing other medical conditions and that is why it is typical to run numbers of tests that come at things from different angles when seeking to arrive at a diagnosis.

It seems like you are at the point, since you have had both blood antibody testing and endoscopy/biopsy done, that you need to trial the gluten free diet. If her symptoms improve then you know all you need to know, whatever you label you want to give it. But given that apparently at least one celiac antibody blood test is positive and she has classic celiac symptoms such as slow growth, constipation and bloating, my money would be on celiac disease as opposed to NCGS.

Edited November 13, 2024 by trents

[Wheatwacked]

You should also have her checked for vitamin deficiencies.  

"Iodine's presence in the diet can contribute positively to hair strength and elasticity by maintaining hair follicle cycling and supporting the synthesis of hair shaft components like keratin. Keratin is strong and won't dissolve in diluted acids, alkalines, solvents, or water"

"Keratosis pilaris is a benign skin condition characterized by small bumps around hair follicles. It is caused by excess keratin, a protein that forms hair, nails, and skin. Iodine is not directly related to keratosis pilaris, but certain foods can help improve it"

It could be deficiency in iodine may be causing the keratosis Polaris.  Insufficient iodine intake affects healing, intellegence skin and nails. The average intake of iodine fell 50% from 1970 to now.  A Medium Urinary Iodine Concentration test will indicate intake.  TSH and T4 will not show iodine intake deficiency until damage is being done.

Most newly diagnosed Celiac Disease and other autoimmune diseases are deficient in vitamin D when diagnosed.  Other than bone growth, vitamin D is essential for mental health and the immune system.

[knitty kitty]

@ABP,

"her IgG GLIADIN (DEAMIDATED) AB (IGG) was 22.4" 

In young children, the DGP IgG tests may be the only positive blood test because the immune system is not mature and doesn't produce tTg IgA until older.  Iron deficiency and thiamine deficiency can cause poor tTg IgA production.

"her genetic test for celiac was positive."

Must have at least one gene to develop Celiac Disease.

"Increased intraepithelial lymphocytes (IELs)" 

Increased intraepithelial lymphocytes (IELs) occurs in early stages of celiac disease.

"...severe constipation and bloating...frequent mouth stores...keratosis Pilaris...decreased growth curve..." 

These symptoms can be related to nutritional deficiencies.

Keratosis Pilaris occurs in Vitamin C deficiency, Niacin B 3 deficiency, and Vitamin A deficiency.   Mouth sores can also occur with any of these deficiencies as well as in B12 deficiency.  Decreased growth can occur in iron deficiency, Vitamin D deficiency and Vitamin A deficiency.  Constipation and bloating occur in Thiamine B1 deficiency and magnesium deficiency.  

Has your daughter been checked for nutritional deficiencies?