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Okay, Now That Reality Has Hit - I Am Faaaaaaa-Reaking Out

macocha

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macocha Contributor
macocha
Posted

he had his endoscopy today. the photos he took clearly show diseased areas. The doctor is confident that he does in fact have celiac. Oh crud! we will know officially by Monday, but like I said he is confident we can go with this diagnosis.

I am so scared I can't do this. I am horrible at following through and now I have no excuse - I just have to. :blink:

can someone please be our cook? :) I will just switch us all over. Now, do I or don't I test his siblings? Ugh.

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Jestgar Rising Star
Jestgar
Posted

C'mon over, I love to cook! :)

Spend a little time thinking about whether or not you want your whole house to be gluten free. If everyone will eat that way anyway, it might not be worth the time and trouble to test the sibs. Or do you want a baseline diagnosis for every one?

Darn210 Enthusiast
Darn210
Posted

The other part of the argument is to test everyone BEFORE you take them gluten free. Otherwise, if down the road you start to wonder, everyone will have to go back to a gluten diet for a couple of months (everyone except those that already have been diagnosed).

Take a little time to think about it.

Wolicki Enthusiast
Wolicki
Posted

First step: Breathe! then Relax.

You can do this! The thing you have going for you is that you know you feel better without gluten. Knowing that your son is going be be spared years of pain and intestinal damage will be enough to keep you going through the learning curve.

I was diagnosed last July. My younger son was diagnosed in October at age 9. My older son (12) had negative celiac panel, but very low vitamin levels and he is the healthiest eater around. So I made the decision for our house to be gluten free. We know that Joey and I will not be poisoned in our own home.

Read here. You will find all kinds of help and support. I agree, if you are going to test everyone, keep them on gluten. If not, donate all your gluteny foods to a food pantry, and start your new gluten free life. You can do it, we are here for you!

Janie

ravenwoodglass Mentor
ravenwoodglass
Posted

The good news is now you know what the problem is and it is something that can be dealt with without nasty drugs. As far as testing the other children yes do. All your other first degree relatives should also be checked, Mom and Dad, sisters and brothers etc. Celiac is something that can be triggered at any time so even if the siblings are negative now they may be triggered later in life. Retesting is a good idea if they become symptomatic later. For now I would agree that having a gluten-free house is a good idea. By testing the others they could still have gluten away from home, at school and at friends for example, if testing is negative and they are not having symptoms.

missy'smom Collaborator
missy'smom
Posted

Everything will be OK. From a kids perspective, life is about all about snacks and there are so many gluten-free replacements as well as naturally gluten-free or maintsream gluten-free stuff that it's ridiculous! Don't try and replace everything and drive yourself nuts. Take it one day at a time, keep an open mind and try new things and present it to the family that way. That being said, many of the old favorites can be easily converted. We lived on rice and potatoes for a long time before adding pasta and much longer before trying bread. I think close to 3 years in and I am just now getting comfortable with gluten-free baking and still stick with only a very few basic things. Everyone's different, some just dive in to gluten-free baking and others like myself just take our time and switch the focus-lots of fruit based treats, gelatin desserts and so on. Kids are very flexible. Rather than make Xmas cookies, we made rainbow jello and kiddo LOVED it, the most enthusiastic I've seen him in a long time! There are lots of us here with gluten-free kiddos. Lots of resources and support for you. You can do it.

GFinDC Veteran
GFinDC
Posted

How about testing yourself and DH? It might be good to know which side the genes are on. You could let the family know about the genes then and maybe help some of them.

Celiac can appear at any time really, so while it is good to get testing done now, it would still be good to put the kids on a gluten-free diet. They could develop it a week after testing after all. Or never. It just isn't predictable really. But if they do develop it someday they would at least understand the diet already. Maybe they should teach this gluten-free diet in schools.

You could check into Enterolabs testing. Enterolab can test for gliaden antibodies, but can't actually diagnose celiac. But antibodies aren't there for no reason. An official diagnosis may not be the any more help than that.

The diet is just an adjustment. You probably will want to start learning to cook at least basic foods like rice and veggies etc. Get rid of all the processed foods in the house and go whole foods all the way. You can do it just fine!

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