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Just Diagnosed, And Son Possibly Has It.

Calmom

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Calmom Apprentice
Calmom
Posted

I just just got back from my follow up confirmation appt. with my dr. Finally answers for myself.

However, I am almost 98% sure one of my children has it so I am having him tested as well. He has been in poor health ever since birth. He is now 9. At his one month check up he weighed less than he did at birth and was labeled failure to thrive. He had severe colic well past the age when they normally out grow it. He could never keep anything down. At around 10 months he was diagnosed with GERD. Once he started on solids he never had a formed stool. (breastfed (against dr. recommendations)with supplemental soy and a predigested formula.) I was having the same issue at the time and the dr.s said it was a gastrointestinal virus. Since then he has been tested for everything from Wilsons disease to Crohns disease. Celiacs was never mentioned. Hospitalized for dehydration, due to chronic diarrhea. It until he was five to get him out of diapers due to the fact he couldn't control his bowels, which was emotionally distressing for both him and myself. Even though he is much older now he is always getting sick to his stomach and does not have formed stools. yesterday we went to the park and he couldn't even play because he was having such severe stomach cramps. He also has a lot of emotional symptoms, for example, being teary eyed for no reason.

So, I have a few questions. Is it genetic? I never had any problems as a child yet he was born with his symptoms,one of the few things that makes me doubt if he has the same thing I do. Since I have to go gluten free, should I start him on the same diet or should I wait until after he is tested? Of course I have all these other worries going through my mind, if he does indeed have it,(school, eating at friends, birthday parties ect.) but I almost hopping that it is so that we finally have answers.

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hockeymomofceliacchild Rookie
hockeymomofceliacchild
Posted

I just just got back from my follow up confirmation appt. with my dr. Finally answers for myself.

However, I am almost 98% sure one of my children has it so I am having him tested as well. He has been in poor health ever since birth. He is now 9. At his one month check up he weighed less than he did at birth and was labeled failure to thrive. He had severe colic well past the age when they normally out grow it. He could never keep anything down. At around 10 months he was diagnosed with GERD. Once he started on solids he never had a formed stool. (breastfed (against dr. recommendations)with supplemental soy and a predigested formula.) I was having the same issue at the time and the dr.s said it was a gastrointestinal virus. Since then he has been tested for everything from Wilsons disease to Crohns disease. Celiacs was never mentioned. Hospitalized for dehydration, due to chronic diarrhea. It until he was five to get him out of diapers due to the fact he couldn't control his bowels, which was emotionally distressing for both him and myself. Even though he is much older now he is always getting sick to his stomach and does not have formed stools. yesterday we went to the park and he couldn't even play because he was having such severe stomach cramps. He also has a lot of emotional symptoms, for example, being teary eyed for no reason.

So, I have a few questions. Is it genetic? I never had any problems as a child yet he was born with his symptoms,one of the few things that makes me doubt if he has the same thing I do. Since I have to go gluten free, should I start him on the same diet or should I wait until after he is tested? Of course I have all these other worries going through my mind, if he does indeed have it,(school, eating at friends, birthday parties ect.) but I almost hopping that it is so that we finally have answers.

To answer your questions briefly (I'm no expert just learning too but seem to becoming an expert thanks to this group :) )

Yes, Celiac Disease is genetic. If he has had this many problems from birth and you yourself have just been diagnosed then he needs to be tested asap. Do NOT take him off gluten until after his blood work and scope. The plus side to celiac is that when diagnosed, the simple step of eliminating gluten the body then repairs the damage to the small intestines. If you take him off gluten too soon before diagnosis he can get a false result.

We had a fairwell to gluten week for my son before his scope because I was very sure he had it. I asked him what foods he would miss the most and we ate that the week before his test. Then of course we found gluten-free versions of the same (still havent found pogo's yet though :( )

It is normal to feel the way you do, take it one day at a time if he does have it. As you say it is actualy a relief knowing what the problem is and the symptoms disappear quite quickly when you learn what does and doesnt have gluten in it. ( I joined the canadian celiac assosiation and recieved a small pocket dictionary on all ingredients and weather ingredients were gluten-free or not~It stays in my purse and I refer to it often while shopping)

This forum is wonderful, everyone is so helpful and knowledgable, my son was diagnosed this February so still fairly new but his rash is gone ( he has DH- dermitosis herpetiformus... :blink: I think I spelled that right. lol)

o.k so maybe this wasnt too brief but there is still lots of info and I'm sure you will get it when you have more questions. Good luck with your diet and congratulations on getting the answers you needed for yourself now you can start on the road to feeling better :)

Cara in Boston Enthusiast
Cara in Boston
Posted

Just want to add:

If you tested positive, you should have ALL your children (and other first degree relatives) tested. It does run in families and does not always have obvious symptoms.

Cara

Calmom Apprentice
Calmom
Posted
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Thank you for the replies. I did a lot more reading on this site late last night, which I probably should have done before I posted. Yesterday was a bit overwhelming. I will definitely have all my kids tested. While I am anxious to see if taking my son off of gluten will help him, I guess I'll wait until the test.

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