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Early Stage Of Diagnosing Our 13 Month Old Daughter

jc3457

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jc3457 Newbie
jc3457
Posted

Hi everyone! I am very new to all of this and have been trying to do as much research as possible while we are trying to figure out what has been going on with my 13 month old daughter. 

 

We just got test results back from her tTG-IgA test and we were told she was at 10. From everything I have read that would mean a weak positive, although the Doctor said a lot of her patients who test positive for Celiac's are up in the 200 range. The symptoms that we are dealing with are extreme gas and stomach pains, as well as diarrhea, and small amounts of eczema. 

 

Initially we thought it was a lactose problem, but we had eliminated lactose and continued to see the issue; so at her 12 month checkup agreed to try eliminating wheat. While I was very diligent in ensuring she wasn't getting wheat, other people were not always as careful (ahem, my husband!). We saw that it definitely had an affect on her digestion and overall temperament when she consumed wheat products. We have now been referred to a GI specialist and have an appointment set up for this upcoming Thursday.

 

I am going to continue my research so that I am sure to ask all of the right questions, but any help you all could provide would be much appreciated. Her GP said we will most likely need to do the endoscope to confirm the results, but that she is "highly suspicious" that Celiac's is the issue. Prior to the blood test, we had been limiting her wheat intake, and the Dr feels that may be the reason why her test results weren't higher also combined with her young age. What are the absolutely necessary questions I need to arm myself for this upcoming appointment?

 

Also, should I get tested and have my five year old son tested as well? I have had a long history of digestive issues but thought it was somewhat normal. Celiac's was not a known thing when I was a child and so it never got brought up by my doctor so my digestive issues have just been something I have always dealt with. On a regular basis I had blood in my stool and it was brushed off as nothing and so I just always assumed it was nothing. I have always had canker sores but chalked it up to stress. My legs have always been tingly and I frequently get the "pins and needles" feeling as well as calf cramps, but again I never thought of it as something more serious. From everything I have read, this definitely seems hereditary so I assume I should get it checked out?

 

Thank you all for any help and advice you are able to give! I am going to continue scouring the board for as many answers as possible to prep for this appointment!

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bartfull Rising Star
bartfull
Posted

It is VERY probable that her being gluten-free before her test messed up the results. It is also hereditary so all first degree relatives should be tested. It sounds like you have a good doctor. She seems to know what she is talking about. You'd be surprised at how many doctors don't know anything about celiac.

 

My advice would be to read as much as you can here. There is lots of great info. Also, when and if the time comes to go gluten-free, read the Newbie 101 thread in the coping section here. And please get her Dad on board. If he sees that even a tiny amount of gluten can harm her I hope he will get serious about it.

cyclinglady Grand Master
cyclinglady
Posted

So, do you think her TTG was low because she has been gluten light since she was 12 months old? If so, it was lucky she had any elevated antibodies. All celiac blood tests require patients to be on a gluten diet for up to eight to 12 weeks prior to testing. Not that it means anything since my TTg was negative. I was barely positive on my DPG yet I had moderate to severe damage. I was lucky an entire panel was ordered and I had been consuming lots of gluten at the time! If the GI wants to redo the celiac blood tests (and do them all) your daughter should be back on gluten for a few months and stay in gluten if they decide to do an endoscopy.

Here is a link to the University of Chicago's celiac website. It contains information for parents and doctors.

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Get tested. My only symptom was anemia. No tummy issues. Yep, that includes Dad, too!

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