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Getting my kids tested- what are the odds?

Alibu

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Alibu Apprentice
Alibu
Posted

A little background:

I was recently tested for celiac and my results are not conclusive (positive TTG, negative EMA).  I have a biopsy scheduled for tomorrow.

I asked my pediatrician if my kids (ages 14 and 11) need to be tested because my TTG was positive, and he ordered the test (he'll pretty much order anything, LOL).  Anyway, I'm totally freaking out because my 11 year old was born with multiple severe food allergies to milk, egg, peanuts, tree nuts, and sesame.  He also had horrible eczema, most of it food related, but he still has an extremely flaky scalp.  He's outgrown milk and egg (yay!) and has been enjoying lots of foods since then.  He also has high-functioning autism, ADHD, and OCD.  

So the thing is....this kid has been through SO much.  He was almost placed in a hospital because of his refusal to eat at a young age and because of his food allergies, his choices were very limited.  Wheat was pretty much our go-to.  Now that he can eat a lot of foods, his world has opened up and to see his face when he tries a new food that he loves makes me so happy.  One of the things that gives him the most joy in the world is going out to restaurants.

You see where I'm going with this.  I'm TERRIFIED of his test coming back positive.  My daughter...she can handle it.  It would suck, but we could deal.  I just can't stand the thought of taking all of that away from him.  I almost canceled the test because I don't know how I would face it.

I know I'm probably jumping the gun.  There's still a very real possibility that my biopsy will come back negative.  I've been doing a lot of research and it looks like there's a much lower rate of positive biopsies with the combo of positive TTG and negative EMA.  I think it was like 10% or something.

But if it DOES come back positive....what are the odds that I have passed this down to my kids?   And yes, I know it's not the end of the world and that things could be much worse, but this poor kid has had to deal with so much, I just don't know how I would break it to him.

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Ennis-TX Grand Master
Ennis-TX
Posted
2 hours ago, Alibu said:

A little background:

I was recently tested for celiac and my results are not conclusive (positive TTG, negative EMA).  I have a biopsy scheduled for tomorrow.

I asked my pediatrician if my kids (ages 14 and 11) need to be tested because my TTG was positive, and he ordered the test (he'll pretty much order anything, LOL).  Anyway, I'm totally freaking out because my 11 year old was born with multiple severe food allergies to milk, egg, peanuts, tree nuts, and sesame.  He also had horrible eczema, most of it food related, but he still has an extremely flaky scalp.  He's outgrown milk and egg (yay!) and has been enjoying lots of foods since then.  He also has high-functioning autism, ADHD, and OCD.  

So the thing is....this kid has been through SO much.  He was almost placed in a hospital because of his refusal to eat at a young age and because of his food allergies, his choices were very limited.  Wheat was pretty much our go-to.  Now that he can eat a lot of foods, his world has opened up and to see his face when he tries a new food that he loves makes me so happy.  One of the things that gives him the most joy in the world is going out to restaurants.

You see where I'm going with this.  I'm TERRIFIED of his test coming back positive.  My daughter...she can handle it.  It would suck, but we could deal.  I just can't stand the thought of taking all of that away from him.  I almost canceled the test because I don't know how I would face it.

I know I'm probably jumping the gun.  There's still a very real possibility that my biopsy will come back negative.  I've been doing a lot of research and it looks like there's a much lower rate of positive biopsies with the combo of positive TTG and negative EMA.  I think it was like 10% or something.

But if it DOES come back positive....what are the odds that I have passed this down to my kids?   And yes, I know it's not the end of the world and that things could be much worse, but this poor kid has had to deal with so much, I just don't know how I would break it to him.

I have Asperger, ADHD, Bipolar, and am OCD...think Sheldon big bang theory lol. Yeah it can be hard I will admit...but alot of the autism issues become less severe on a gluten-free and dairy free diet...I also have a peanut issue like him and a issue with soy..whole dang list onto of celiac. Anyway, I turned to a new fun things. I invent and create foods with things I can eat in the kitchen. Heck have a blog here about it, I also started a gluten free bakery to give me purpose and help with that "I want to give people and help people, be useful" thing I got going. The OCD is great for celiacs and cooking, you measure stuff to the gram, do temps to exacts, over analyze  everything and figure out what causes what textures, flavors, etc. You also become OCD clean and avoid contamination like hte plague....dog once bitten twice shy, something makes you sick your avoid it like crazy....actually great for this disease lol.

This might be a blessing in disguise, a gluten free household is much easier to manage with all gluten removed from the house....I mean crumbs makes us sick, residue, that poof from the bag of flour can dust and CC the whole kitchen and god forbid we inhale it. His health will improve on a gluten free diet...honestly look up the relations between autism and gluten....

There is hope, I am proof of it, I might not go out much, have many friends, or function well in society, but I found my purpose, I found something I enjoy doing, and life is looking up.

High chance you passed on the gene if you have it...chances it is active in your kids is less. But it can happen, regardless a gluten free diet would be great for your 11 year old. IF you need help with anything I know where to find everything, I can even set you up with ways to save on buying gluten free foods, snacks, etc. The recipe blog I have here has all kinds of fun recipes....

kareng Grand Master
kareng
Posted

People with autism  have a high rate of Celiac.  Your doctor is supposed to test him for Celiac.

 

https://www.celiac.com/articles/24962/1/Celiac-Disease-Linked-to-Nearly-Every-Inflammatory-Disorder/Page1.html

 

 

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