August 2011 Moms

Celiac Disease

So we took Ds1 to doctor last week because we thought he was sleeping too much, like 15 to 16 hours in a 24 hour period. I normally wouldn't be concerned but DH has a condition that can be genetic so we wanted to make sure it wasn't that. They took A LOT of blood and it turns out he might have Celiac.

We have to go see a specialist and probably have a scope done, which I am freaking out about. I feel so bad for him but I'm glad it's not something much worse. Anyone have any experience with celiac?

Oh and DS2 fell of the couch this morning. I'm not having a good day! He seems fine but I feel like a jerk.

Re: Celiac Disease

  • We don't have CD in our family, but we also don't consume wheatgluten.  It's totally manageable, and has gotten really, really easy with time.  :)  If you're stumped for any type of cooking ideas, start combing the Paleo cooking blogs.

    We really like PaleOMG!!  

    Hopefully, the scope will give you some answers!!  Good luck with the procedure...  BTDT, and it's nerve-wracking no matter how prepared you are. 

    Prudence
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  • One of our nephews has CD.  I'm curious about the scope though.  Nephew was able to be diagnosed with blood work only as he was so young and SIL didn't want to have the biopsy done.  I'm not sure about the U.S., but here CD can be diagnosed without having to have a biopsy of the spleen done.

    The diet is tough at first, but gluten free products have become much more readily available, even in isolated places like where we live.  Again, not sure about where you are, but SIL gets a tax break on all GF foods.  She just has to keep her receipts and needed an initial letter to give to her tax person stating that nephew had a diagnosis.

    Definitely do your research though.  Gluten lurks in the most unsuspecting places (turkey's are coated in wheat to get them into those bags easier - who knew!)

    Good luck with everything and keep us updated! 

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  • Thank you, both. I'm not sure about the scope yet. The pedi just said it might be the next step but he literally has no other symptoms, if you call the extra sleep fatigue. He's growing on his own scale, has energy when he is awake, no vomiting, no diarrhea. Maybe some constipation but he's not a big drinker. He's barely ever been sick at all.

    I don't know, I guess I just have to wait until we speak with specialist.

    ETA: oh and we are in Boston. I'll be bringing him to Children's Hospital so I know we will be in good hands. Hopefully they can diagnose or not without scope
  • I'm not familiar with this but I just wanted to say I'm sorry you have to deal with this.
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  • I'm sorry you have to deal with this. Big hugs to you Mama.
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  • image Monsieur_et_Madame_Ha:
    I'm sorry you have to deal with this. Big hugs to you Mama.

    thanks! We just got word that Children's had a cancellation for tomorrow for a consultation so we grab the appt. hopefully, we will know a little more tomorrow  

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    ETA: oh and we are in Boston. I'll be bringing him to Children's Hospital so I know we will be in good hands. Hopefully they can diagnose or not without scope


    You will be in great hands at CHB. They have the only specialty center in the US for Hank's birth defect EA/TEF. There is always a GI component to the birth defect so we have great experience with the GI docs there. You are right to put your trust in them!! Good luck and keep us posted please!!
    Prudence
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