New To This Group

[Jamgee]

Hi I am new to this. I am speaking for my daughter Selena because she is only 7 years old. We have not had an official diagnosis of celiac disease as of yet but I suspect that she may have it. I understand that this is not a doctors office but I am asking for your opinions if you care to give them. We do have an appointment with a specialist the 12th of February so we are currently seeing a doctor. She has had these constipation problems for over 3 years now. When she goes to the bathroom she has EXTREMELY large stools. Sometimes I can't get it to go down at first when I flush. When she passes gas it will knock you down it stinks so bad. It smells like old waste.  She also has developed extremely bad reflux all of a sudden. Like I am talking about spitting up 3-4 times a day and always after a meal.  She also complains of abdominal pain more now which she did not used to so much.We went to see her specialist in September of 2014 and he put her on Miralax (17 mg) once a day. It is not helping. I did have her allergy tested because I thought that she might have a lactose allergy or some food allergy but it was all negative even on wheat. Is it still possible to have celiac disease although your skin test on wheat allergy came back negative? I realize the doctor suspected that she had encopresis and I do not think that is the case because she doesn't have accidents in her pants. Any enlightenment would be greatly appreciated. Am I barking up the wrong tree or what?

[cyclinglady]

She could very well have celiac disease which is an autoimmune response triggered by gluten found in rye, wheat and barley. It is not an allergy to wheat, though it is possible to have both.

Here is some information about celiac disease and testing from the University of Chicago. Any MD can test. You must make sure that she is eating gluten daily until all testing is complete.

Open Original Shared Link

I hope she feels better soon!

[nvsmom]

Welcome to the board.  

 

Like Cyclinglady said, make sure she keeps eating gluten until all celiac disease testing is done.  Those celiacs who are gluten-free will eventually produce false negative test results.

 

Ask for as many tests as you can get:

• ttG IgA and tTG IgG - tissue transglutaminase is the most common test
• DGP IgA and DGP IgG - deaminated gliadin peptides are newer tests that are often better at detecting celiac disease in young children or in early cases.
• EMA IgA endomysial antibodies tend to become positive as the disease progresses
• total serum IgA - a control tests to make sure one is not too low in IA to produce accurate celiac disease test results - 5% of celiacs are IgA deficient
• AGA IgA and AGA IgG - older less reliable anti-gliadin tests that were replaced by the DGP tests
• endoscopic biopsy - 6+ samples taken

 

If the tests all come back negative, you could always consider going gluten-free to see if she has non-celiac gluten sensitivity (NCGS). Those with NCGS have the same symptoms as those with celiac disease.  Give the diet a good 6 months if you can before judging the effectiveness. Don't go gluten-free until testing is done though.

 

Good luck.  I hope she feels better. 

[Jamgee]

cyclinglady, on 26 Jan 2015 - 6:01 PM, said:

She could very well have celiac disease which is an autoimmune response triggered by gluten found in rye, wheat and barley. It is not an allergy to wheat, though it is possible to have both.

Here is some information about celiac disease and testing from the University of Chicago. Any MD can test. You must make sure that she is eating gluten daily until all testing is complete.

Open Original Shared Link

I hope she feels better soon!

Thanks so much. I wish I lived close for the free screening. I live in MS.

[Jamgee]

Welcome to the board.  

 

Like Cyclinglady said, make sure she keeps eating gluten until all celiac disease testing is done.  Those celiacs who are gluten-free will eventually produce false negative test results.

 

Ask for as many tests as you can get:

• ttG IgA and tTG IgG - tissue transglutaminase is the most common test
• DGP IgA and DGP IgG - deaminated gliadin peptides are newer tests that are often better at detecting celiac disease in young children or in early cases.
• EMA IgA endomysial antibodies tend to become positive as the disease progresses
• total serum IgA - a control tests to make sure one is not too low in IA to produce accurate celiac disease test results - 5% of celiacs are IgA deficient
• AGA IgA and AGA IgG - older less reliable anti-gliadin tests that were replaced by the DGP tests
• endoscopic biopsy - 6+ samples taken

 

If the tests all come back negative, you could always consider going gluten-free to see if she has non-celiac gluten sensitivity (NCGS). Those with NCGS have the same symptoms as those with celiac disease.  Give the diet a good 6 months if you can before judging the effectiveness. Don't go gluten-free until testing is done though.

 

Good luck.  I hope she feels better. 

Thanks so much for the info. I will be sure to ask for those when we go see her GI specialist next month.