12 Year Son Dx 3 Weeks Ago

[worriedmomof2]

My son is 12 and was dx 3 weeks ago with Celiac Disease. Basically I got a phone call from his ped and was told he had it and that she still wanted us to see a ped gi that she had referred us to the week before when we went in again for stomach pain and bathroom issues. I did not get any dos or don'ts. I was told we would have to wait for an appt with the ped gi. I did not get a time frame. So I started my son on gluten free food. His numbers are:

IgA 88

IgG 30

t TG lgA 21

t TG lgG 4

lgA Quant 180

Endomysial AB lgA positive

After reading a lot online, I seen where a lot of people have had a biopsy done right away or were told they were going to have one so they shouldn't go gluten free. I didn't know anything about needing one. Since I am not sure when we will get an appt with the ped gi should I still keep him on gluten free or not? He is still sleeping a lot and still has stomach pain. I don't want to cause more pain if it is not needed since he has said he is starting to feel some better. I am going to call the dr and ask as well but wanted your thoughts.

[kareng]

If you are wanting to continue with further testing - a endoscopy - he will need to continue eating gluten or add it back in later.  Usually, it is easier to just keep eating gluten.  Adding it back can be hard.

 

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[bartfull]

If the doctor has written celiac disease in his chart you have a dx. But it is still a good idea to get the biopsy to measure the amount of damage. See what your doctor says.

 

Also, because celiac tends to run in families, all first degree relatives (you, his dad, and any brothers and sisters) should be tested. Even if you all come up negative you should all be tested every couple of years because celiac can happen at any time during a person's life.

[nvsmom]

Welcome to the board.  

 

Some doctors will give a diagnosis with just positive celiac blood tests, especially when it is the tTG IgA and EMA IgA. Together they are almost 100% specific to celiac disease - as sure a thing as you are likely to get. My doctor was in no doubt that it was celiac disease with those two tests being positive so he gave me the option of having the biopsy done. I chose to skip it because I figured I could always get it done later if I continued to have a lot of problems after being gluten-free for some time.

 

The biopsy will require 2-4 weeks of gluten consumption. If the test is quite far off in the future, then I would go gluten-free for a time.  In my town it takes up to a year to see a GI about celiac disease, in a case like that it would be prudent to go gluten-free while waiting.  

 

When the biopsy is done, if you choose that route, make sure a minimum of 6 samples are taken.  Up to 20% of celiacs have a falsely negative biopsy so it is wise to get as many sample of possible in case the damage is spotty.

 

And ditto Bartfull about testing the rest of the family. Celiac can appear at any time of life so if the immediate family continues to eat gluten, they will need to be retested evry two years or so, or as soon as symptoms present themselves.

 

Best wishes.