Do You Test Siblings?

[Motherof2boys]

Hi!

I have been eating, sleeping, and dreaming about the Celiac diagnosis since we found out last week.

My 7-year-old is newly diagnosed by blood tests and endoscopy. He was not failure to thrive or any obvious symptoms as an infant or toddler. He began having left upper quadrant pain last June and the Pediatrician treated him with Prevacid for 3 months. Why does that work for Celics? After weaning him off the Prevacid, the pain continued and we were referred to Peds GI. The endoscopy and blood tests were enough evidence to make the solid Celiac diagnosis. We started the diet this weekend. I am a Registered Nurse (not in Pediatrics), and I remember from my Peds rotations that when you present diet changes, they should always be presented to the child as a "positive change." Is this how all of you did it? My son seems fine with the changes right now. I try not to show him that I am truly overwhelmed.

I also need guidance on whether to test my 4-year-old, who is completely asymptomatic and growing well. The Peds Gastroenterologist said "it is controversial in my field." She did not really expand more than that. What should we do? We will soon be seeing the nutritionist but I could use some tips on shopping and cooking as well. This is a wonderful site for newly diagnosed individuals. Sorry for the long post.

Thanks

[Darn210]

Hi Motherof2boys. You have found a wonderful resource with this website.

Here is a list of companies that do not hide the gluten in their labels . . . so if you don't see wheat, rye, barley, or oats listed, you do not have to worry about that generic term "natural flavoring"

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Our pedGI recommended all siblings be (blood) tested even if there are no symptoms. It is something that can start at any time so you may just want to screen every two or three years or if GI symptoms start up.

I always told (and still do) tell my daughter that she can have the same things as the other kids, it just has to be made special. She can have chicken nuggets . . . just not McDonald's. She can have choc chip cookies . . . just not Chips Ahoy. So far, this has worked well for us. I know it's hard now, but it does get easier and you do get yourself into a routine. It's really not that hard to convert your dinner recipes to gluten-free.

Some gluten-free kid favoUrites:

Tinkyada Pasta (&Cheese Packet out of Kraft Mac&Cheese is OK - pitch the noodles)

Bell&Evans chicken nuggets/strips (make sure box says gluten-free as they have other varieties) (I make my own and freeze, also)

Van's frozen waffles

Pamela's Pancake (&Baking) Mix

Lays Stax

Glutino Pretzels

Trix, Dora Stars, Fruity Pebbles

Betty Crocker Potato Buds (instant Mash Potatos - I'm not a big fan but they are fast)

Orieda french fries - shoestring & crinkle cut (there are more but these are the ones we use)

Great Value Brand AuGratin Potatos

Oscar Mayer lunch meats and hot dogss (read the label, they will list gluten)

Kraft Cheese

Jif Peanut Butter

Rice Cakes

Fresh fruits & veggies (that is if you could get him to eat them before )

If your child has any favoUrites that you are having trouble replacing, let us know and we'll respond with what worked best for us.

I also recommend the book Kids with Celiac Disease by Danna Korn.

[happygirl]

The leading Celiac experts recommend that ALL first degree relatives are screened via bloodwork, regardless of symptoms or no symptoms.

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Q: Why do my family members need to be screened for celiac disease?

When the diagnosis is established in one family member, their first- degree relatives (parents, siblings and children) should have blood tests for celiac disease. This is because at least 10% of family members will have the disease, even if they are asymptomatic. Screening is also recommended for second-degree relatives (grandparents, grandchildren, aunts, uncles and cousins) as they are also at an increased risk for celiac disease. Family members who already have an autoimmune disease are at a greatly increased risk to have celiac disease (25%).

The reasons to diagnose family members prior to the development of symptoms include the prevention autoimmune diseases and malignancy.