A Whole Bunch Of Things

[confused]

I wasnt sure were to post this, so if it needs to be moved that is fine lol.

First of all I wanted to say i meet someone that has celiac and DH, she owns the new liquor store. She is very nice and is going to give my hubby lots of recipes the next time we go in. It is so nice to talk to someone face to face that is going threw the same thing you are.

But we were talking and she said i better go have my kids tested, but i have been so afraid to do that. One cause blood test are so unreliable, but i dont think we can afford to test all 4 threw entrolab. There ages are 7, almost 6, 4 and 3. Or do you all think they are old enough to get tested. I do see some signs in the 7 yr old, he is very moody child. But for the most part i dont see anything else that fits celiac. Then my almost 6 yr old, he is skinny and has a small stomach, but not sure if its just from his hernia from birth. But then my 4 yr old has terrible bumps on her body, and she has complained alot that her stomach hurt, but she sometimes does that when she is bored or she repeats me cause my stomach use to always hurt. Then my 3 yr old has nasty poop and she gets rash on her butt and on her face. I really do believe if any of them is celiac it is her. But how reliable would that test be for an 3 yr old. She dont like bread and i think celiac could be why she dont like it, but its hard to get an straight answer from a 3 yr old lol. Since i dont have the celiac gene but is positive threw blood and enterolab, i dont think doing an gene test on them would be any good, unless of course my stepson got the celiac gene from his dad and not his bio mom.

But I am feeling really good later. I did find out 2 days ago that my makeup has oats in it. I have had red eyes for weeks now, and today it isnt so red, so it must of been from the makeup, And my dh on my face looks better today then it did a few days ago. So hopefully it will start lcearing up real soon. I am tired of my face and eyes looking like this.

Maybe i should of broken this out into different post, but i hope this is ok.

One other thing i am in correspondence with dr. lewey and we are debating on putting my stepson back on gluten to do the scope, but we are still not sure. We wont know until the dr gets back to us. Cause we might also just re-do the test and see if he is IgA deficient.

paula

[celiac-mommy]

Get the kids tested!! My DD was diagnosed at 4 and they will test my son in 2 weeks-he'll be 2. Don't wait-get your kids healthy. My daughter was painfully skinny-except for her malnourished belly, complained of stomachaches and had eczema rashes frequently. The blood test that was performed was very positive and the biopsy confirmed (after diagnosis and being gluten-free she gained 3# in the 1st month!). There are multiple blood tests that can be performed (I've had 4 separate ones) so maybe talk to you dr. to find out which is the best-but get them tested!!!

Take care,

-Rachelle

[CarlaB]

I also tested positive through Enterolab but negative for the gene.

Virtually everyone has gluten intolerant genes. Enterolab says that only the DQ4 genes are not gluten intolerant, and they are only found in Asians.

So, I would not have your children tested unless they were showing signs of a problem. I think it's equally reliable to test them by dietary response.

Now, if you had a celiac gene and had kids with symptoms, I'd recommend you get them the blood test.

[confused]

Well as i sit here in tears, I made an appt, they will all go in on the 19th to see the dr and get the lab to get them tested. My husband is also going to get tested, since we do not know if my stepsons celiac came from him or his bio mom. My husband and i just talked and we really do think at least the girls are celiac. I am so scared to think that they might have it. I have been looking at my kids BM's for the last couple of weeks, and they all floot and are stinky and oily. My 3 yr old has mostly D. My 6 yr old does have tooth enamel and teeth problem. Last yr he had to have 2 front teeth pulled cause they were black and now the bottom two are almost see threw. So they do all have some symptoms of celiac.

paula

[jerseyangel]

Paula,

Don't worry, it's going to be ok

It's better to find out now, while they're still young. You will be saving them from complications later on, and this way the whole family can be gluten-free together.

Try and take things one step at a time, and you can always come here to vent or get support.

[celiac-mommy]

Paula,

Don't worry, it's going to be ok

It's better to find out now, while they're still young. You will be saving them from complications later on, and this way the whole family can be gluten-free together.

Try and take things one step at a time, and you can always come here to vent or get support.

I completely agree. It is SOOO much better for the kids if they are diagnosed early. They will grow up with this as part of their lives. I think it would be much more difficult to be diagnosed in your 30's, 40's, etc.. when all you've know is a gluten-full lifestyle. Take one day at a time, if they are diagnosed or you decide to go gluten-free anyway, there will be an adjustment period, but just be sure to focus on all the wonderful things they CAN eat, not the stuff they can't.

We're here for you! Good luck and take care,

-Rachelle

[CarlaB]

Oh, yeah, I forgot your stepson has celiac ... it's hard to keep everything straight around here.

I would have them tested, but I'd get the blood test so you know whether it's celiac or not. Enterolab only shows gluten intolerance. Not that there's always a big difference, but I know I'd prefer to know which it is.

It'll be okay. Once they get off gluten, if they do have celiac, they will be fine. We all want our kids to be perfect, but they're only as perfect as we are.

[confused]

Paula,

Don't worry, it's going to be ok

It's better to find out now, while they're still young. You will be saving them from complications later on, and this way the whole family can be gluten-free together.

Try and take things one step at a time, and you can always come here to vent or get support.

Thanks patti. I just keep telling myseld id rather know now then waiting like i did. I have so many complications from this disease. I have yrs of thinking i was bulemic, when actually it was just me pucking after eating gluten, But after hearing from drs and counselors that i was bulemic, i just figured I was and labeled myself as one. Then suffering from being anemic for so many yrs, thinking it was just from having kids the way I did, Now to sit and suffer with Dh, something i wouldnt wish on worst enemy.

I do hope you know i will be venting and going nuts after they are tested. And goign nuts until they are tested. I sure hope my dr does not argue, which im sure she will not.

paula

[confused]

I completely agree. It is SOOO much better for the kids if they are diagnosed early. They will grow up with this as part of their lives. I think it would be much more difficult to be diagnosed in your 30's, 40's, etc.. when all you've know is a gluten-full lifestyle. Take one day at a time, if they are diagnosed or you decide to go gluten-free anyway, there will be an adjustment period, but just be sure to focus on all the wonderful things they CAN eat, not the stuff they can't.

We're here for you! Good luck and take care,

-Rachelle

Yes it is so hard being 34 and being told no more gluten or casein, then to find out on your own soy and garlic dont agree with you, it has been tough. I told my hubby even if one more test positive the house will be gluten free, that the only gluten in this house will be his beer, since the kids cant drink that. And i just figure i will just have to learn to be even a better cook and baker lol

paula

[confused]

Oh, yeah, I forgot your stepson has celiac ... it's hard to keep everything straight around here.

I would have them tested, but I'd get the blood test so you know whether it's celiac or not. Enterolab only shows gluten intolerance. Not that there's always a big difference, but I know I'd prefer to know which it is.

It'll be okay. Once they get off gluten, if they do have celiac, they will be fine. We all want our kids to be perfect, but they're only as perfect as we are.

That is ok carla, i get confused all the time.

I figured it would be cheaper also to do the blood test, and I am going to ask for the gene test also. Cause a piece of me still thinks they missed up on my gene test lol.

I figure if the test are inconclusive then i might do one of enterolabs stool test for 99 and see what that says, but i know in my heart that at least my girls have it. It is just so hard cause they are 3 and 4, but i know of any of the kids they would be the easiest to handle on the diet, im just worried about my 7 yr old who loves his pizza, lunchables lol

I am perfect, so my kids have to be perfect right, at least that is what i tell my hubby, but he doesnt quit agree lmao

paula

[loraleena]

My son is not gluten free yet, but I am going to get him tested soon as well. When he is with me he eats gluten light anyway. Not at his dads though. He loves my glutino pizza. He prefers it over gluten pizza. He is very picky and for him to tell me that some of my gluten free stuff is better than gluten items is huge! Try not to worry, you will find substitutes. I would much rather save my son from the years of unhealthiness that I have endured.

[lfij]

My son is not gluten free yet, but I am going to get him tested soon as well. When he is with me he eats gluten light anyway. Not at his dads though. He loves my glutino pizza. He prefers it over gluten pizza. He is very picky and for him to tell me that some of my gluten free stuff is better than gluten items is huge! Try not to worry, you will find substitutes. I would much rather save my son from the years of unhealthiness that I have endured.

just fyi, gluten light is like drinking a light amount of rat poison every day, it doesn't really count, as a few parts per million can gluten you.

[confused]

So since my kids eat gluten light for the most part since all of our dinners are gluten free, should i put them a big gluten diet before the test, or should i keep them gluten lite. I dont want to get inaccurate test when they are tested next week.

paula