I Am So Sad!

[mommyetb]

Our doctor emailed us with the enterolab results. Tim is 12. Normal is 10. He is positive for celiac. I knew from his positive response to the diet change that he was celiac but now that we have confirmation that last little lingering bit of hope that the problem is really something else has been dashed. It makes me sad. I know that is probably silly. He has been gluten-free since March. I should be used to the idea by now. Silly mommy. I will let you know what he actual test scores were when we get the fax from the doc.

[Lymetoo]

AWWW, I'm so sorry! I know that must be a difficult thing to face. Thank goodness you found out NOW and not when he's 55, like me!

So, how many in the family have celiac?

[CarlaB]

I felt exactly the same way!! My score was 60, and I was okay with that. But, when my daughter tested with a 14, it made me very sad. It was a fine diagnosis for me, but a totally different feeling when my daughter tested positive. In the end I am glad we found it in her before she had the damage I did.

[Ursa Major]

Well, at least now you know.........and really, you obviously knew already. At least you can now get on with healthy, gluten-free living and know your quest for the cause of his illness is over.

[Aerin328]

So sorry to hear your child has Celiac! At least it is something you can control, and in doing so he can live a long healthy life. It is better to know what the problem is to have some influence over it than to be miserable for so long. Lymetoo is correct, at least it was caught early. And as a newly diagnosed Celiac myself, I am finding this is a wonderful place to come for support!

CarlaB, what number are you quoting?

(I had a test done for anti-gliadin anti-bodies... the IgA was normal (score 7, up to range 20), but I hadn't eaten wheat for a couple weeks prior to the test; however my IgG was high (score 57, again normal max is 20). One doctor said that number "isn't high enough" ; the other said "this is definitely extremely positive." (pft. doctors.) So anyway, is this the number you are referring to, or something else?)

[CarlaB]

CarlaB, what number are you quoting?

(I had a test done for anti-gliadin anti-bodies... the IgA was normal (score 7, up to range 20), but I hadn't eaten wheat for a couple weeks prior to the test; however my IgG was high (score 57, again normal max is 20). One doctor said that number "isn't high enough" ; the other said "this is definitely extremely positive." (pft. doctors.) So anyway, is this the number you are referring to, or something else?)

My Enterolab IgA was 60, <10 being normal. I think the one for the blood test probably has different ranges. I also was gluten-free before the test, for two months. Interestingly, my blood test IgA came back normal.

[Nic]

I so sympathize with you. I know this will sound so rediculous (forget about silly mommy, this is crazy mommy), but when my son was so sick they were testing him for both Celiac and Hirschsprungs (sp) Disease. If you know anything about Hirschsprungs, it requires surgery. I was actually more fearful of the Celiac because I did not want him to miss out on all the childhood favorites (devil dogs and twinkies to name 2). I felt like I could cry whenever I saw a pizzahut commercial. I just didn't want him to feel different or to feel sad that he couldn't have what everyone else could. But, a year later, and 5 years old, he is doing just fine and has adjusted well. But, yesterday, he said, "I feel so good that I think I might not have Celiac anymore, maybe I can eat my old foods . It broke my heart.

Nicole

[hstevens]

I know that sadness. I think it took me a dozen trips to the grocery store til I could go without crying. I still well-up in the bread aisle, or when my 2 yr old tries to convince me that goldfish don't have gluten in them. I know we all say this, but this IS do-able. Hang in there.. it gets more "do-able" each day.

[tarnalberry]

On the positive side, you've identified what the problem is - it could easily have taken much longer. And it is very controllable, and without expensive pharmaceuticals with nasty side effects. There are some down sides in things he won't get to have that other kids will, but there are upsides in things he will get to have that other kids won't (including more home cooked, healthy meals!).

[wolfie]

(I had a test done for anti-gliadin anti-bodies... the IgA was normal (score 7, up to range 20), but I hadn't eaten wheat for a couple weeks prior to the test; however my IgG was high (score 57, again normal max is 20). One doctor said that number "isn't high enough" ; the other said "this is definitely extremely positive." (pft. doctors.) So anyway, is this the number you are referring to, or something else?)

These sound like my test results (antigliadin IgA was 5, antigliadin IgG was 55 and I had been on a low carb diet for almost 6 months). I went gluten-free on 1/12/2006 and I haven't felt this good in 10 years. There is no doubt in my mind that gluten is a huge issue for me. I didn't get the biopsy b/c I was already gluten-free, but the end result is the same, so it isn't a big deal to me.

[skoki-mom]

Our doctor emailed us with the enterolab results. Tim is 12. Normal is 10. He is positive for celiac. I knew from his positive response to the diet change that he was celiac but now that we have confirmation that last little lingering bit of hope that the problem is really something else has been dashed. It makes me sad. I know that is probably silly. He has been gluten-free since March. I should be used to the idea by now. Silly mommy. I will let you know what he actual test scores were when we get the fax from the doc.

You're not silly at all. No parent wants to hear there is anything wrong with thier child. Even if it's something you can treat, just knowing they will not be able to do all the same things thier friends do, it is hard. Food is such a part of our social culture, it's hard enough to deal with when you are an adult. The fact that celiac disease is a life sentence doesn't make it easier. It's not like you can go on the diet until you heal, then go back to being normal again. I was extremely stress throughout the testing phase on my 2 daughters, and when they came back negative I cried for the whole day out of pure relief. I was far more worried about them than I have ever been about myself and my own Dx. Don't ever feel you have to apologize for your emotions. Nothing makes me more angry when people tell me to just suck it up because it's just a diet and it's not that big of a deal. I'm well aware that I could be a lot sicker with a lot scarier of a disease, but it is a lot more than "just a diet", and yes, it is a big deal! ((hugs)) to you.

[eKatherine]

I was actually more fearful of the Celiac because I did not want him to miss out on all the childhood favorites (devil dogs and twinkies to name 2). I felt like I could cry whenever I saw a pizzahut commercial. I just didn't want him to feel different or to feel sad that he couldn't have what everyone else could. But, a year later, and 5 years old, he is doing just fine and has adjusted well. But, yesterday, he said, "I feel so good that I think I might not have Celiac anymore, maybe I can eat my old foods . It broke my heart.

I feel kind of weird about this. You see, all these snack and junk foods that are tugging at your heartstrings are basically new to the diet - on any regular basis - in the past generation or so. I am 51. My mother chose to cook us meals with natural whole foods, so I never had any of that stuff except on rare occasions, I grew up just fine, and I don't miss them, even though those around me did snack on them occasionally.

When I was a kid, nobody had the idea that there was an appropriate and necessary type of food for kids (junk food/fast food) that was different from the appropriate type of food for adults (real meals), and that there would be a spontaneous switch to healthy food at some point in a kid's life. Often they think that somehow schools can effect positive and permanent changes in a child's diet, even though the parents do not expect to make changes to the food they provide in the home. My feeling is that the diet you are fed as a young child is the one that imprints on you as "normal eating" for the rest of your life.

Corporate America doesn't own your soul unless you let it. If pizza and chocolate cupcakes and spongecake rolls are things you want to feed your child, then learn to make them gluten-free. There's nothing sacred about a plastic wrapper with a "use by" date on it a year or two off.

[Guest nini]

the truth is that there are a lot of companies that are making gluten-free junk food for kids so that they don't have to feel different... my six year old does just fine with her diet... she chooses naturally gluten-free fresh homemade foods more often than junk foods but it's nice to know that when she wants a donut or fish sticks or chicken nuggets, she can have them. Now that we've discovered Kinnitoos (like Oreos) she is REALLY happy! Hoffners also makes some yummy mini vanilla cookies that taste like Nilla Wafers... I digress... anyway, there is a lot of pressure put on moms to make our kids feel "normal" but to be honest, a "normal" diet is really unhealthy no matter how you look at it, and I'd rather my child be eating healthy, than eating "normally"

[Nic]

ekatherine,

I was not saying I would want my child to eat the "junk" food all the time. But everyone likes a treat now and again and it does not harm them one little bit. I too was raised in a home where junk food was limited but not off limits. I remember walking down to the corner store with my friends (and my $1.00 allowance )and choosing a treat on Saturdays. Anyone with a Celiac child knows how hard it is to have to deal with birthday parties (for other children) and to try to make sure your child has something that looks as good as everyone elses. I do make my child home made treats and he does enjoy them but he does occasionally say he wishes he could have this or that. It is very different to be a Celiac adult versus a Celiac child. My 59 year old Celiac father has a much easier time with food choices than my 5 year old Celiac son.

Nini,

What kind of chicken nuggets do you get and where from? If you make them yourself, what are you breading it with? I can't seem to master making "breaded" chicken that tastes good.

Nicole

[Guest nini]

Nini,

What kind of chicken nuggets do you get and where from? If you make them yourself, what are you breading it with? I can't seem to master making "breaded" chicken that tastes good.

Nicole

I get Ian's Allergen Free Chicken Nuggets and Fish Sticks... I've found them at Whole Foods and at my local Co Op... I also have made chicken nuggets by breading them with instant mashed potato flakes, or gluten free bread crumbs (I just take my failed attempts at gluten free bread and freeze them then crumble them into tiny bits...) I put the crumbs or potato flakes in a ziploc baggie and add whatever seasonings I want to add... dip the chicken pieces in egg and then drop in bag and do a "shake n bake" kinda thing... you can either pan fry them, deep fry them or oven fry them... I prefer oven frying, just melt some butter in a baking dish then place the breaded nuggets in pan and bake for at least 20 minutes on one side then flip and bake on other side until done.