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CMWeaver

Had A Good Cry This Morning

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Hi there.....

For those I haven't yet posted with, I have twin girls who turned 4 in December. Just before their birthday, they were diagnosed with celiac disease. Although I mimic their symptoms....I'm negative on all antibodies testing, endoscopy, and colonoscopy testing. DH...no symptoms so in his mind.....no testing.

The thing is, besides celiac, one of the girls has colobomas of the eyes (her pupils don't dialate and although her vision is fine ....whew....she is light sensitive). This is supposedly a genetic condition (despite the family never even hearing of it). Tagging in on the tail end of things the same child has social anxiety that we're making awesome strides with. No doubt that she inherited that from DH's disposition and me being anxiety-prone.

As I'm sure you can understand, there isn't much time to think about these conditions.....I'm too busy trying to be in "maintenance" mode. I know that many others are given much more difficult things to deal with. However, I find myself having a very hard time with acceptance. I find myself worrying more when they get colds, diahrrea, etc. (any of the symptoms associated with complications of their conditions). They both are troopers and handle things perfectly, I couldn't ask for better. DH keeps saying I shouldn't worry about the things I cannot change and to a point I know he is right. Sometimes I feel guilty. Other times I feel sad because when trying to conceive, you think of passing on blond hair or blue eyes, never a critical health conditions that can result in lymphomas (when we never even heard of it before). It's the idea that you schedule visits with specialists and worry as the appts approach. Since all of the conditions we have are ones that friends and family do not encounter on a day to day basis, receiving comforting from them is very difficult....understandably so.

With the exception of a local celiac support group which we belong to....how in the world do I make things easier or can I at all? I had a good cry this morning....just feeling overwhelmed. As you know, the celiac needs to be confronted each and every day and maintenance is so vital to their health. Sometimes my mind wonders to think what difficulties they may have as they reach elementary school.

On the celiac specifically, the one with failure to thrive symptoms has gained 5.5 lbs in 4 months and the other has gained 2.5. We're still waiting for the ones height to come. After a while....that too becomes worrysome. Especially when someone notices she's smaller than others her age (bone age was 2y6m at 4y of age). We've settled into a groove with gluten-free shopping, special snacks at school etc. However, my heart sinks when I see the teacher taking out playdoh and I have to remind her that it has gluten in it.

I'm hoping those of you who have gone through these emotions can perhaps give some suggestions of how you have "come through" this sort of funk I seem to be in. It's only been 4 months so I do not know if our GI would order bloodwork to see if IgG levels etc. are negative or at least coming down. Knowing his personality, I doubt it. I know that just because they get diahrrea, it doesn't necessarily mean they got into gluten....perhaps it's for the same reasons we get it (eating too much sugar or something that just didn't sit well with the stomach). We're keeping a food diary and I just don't see the possibility of other sensitivities.

Thanks in advance! Sorry for the babbling!

Christine

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Guest nini

Christine, it's ok to cry when your feeling overwhelmed, but keep in mind that as long as the girls are on the gluten free diet, the damage is healing itself and they will be able to have normal lives. What I've done for my daughters class is I went over the basics of the condition and the diet with her teachers, and gave them a list of gluten-free art supplies, I also provided them with enough homemade gluten-free playdough for the entire class to use, and told them I will replace it whenever they need more, so I don't have to worry about cross contamination or her accidentally getting exposed. I also provided them with a bag of gluten-free flour for any projects that require flour... and bags of different shaped gluten-free pasta for crafts. The teachers then donated any non gluten-free art supplies to a different classroom so that they didn't go to waste. Also, about once a week I provide a gluten-free snack that my daughter can share with her entire class, like popsicles or Lays Stax potato chips or Cheetos, or corn chips or something like that.

Do you have a R.O.C.K chapter near you? If you do that is a great support group, if not, you might want to consider starting one! Read any of Dana Korn's books for more helpful hints.

As your girls get older even while they are still very young, start giving them some responsibility over their diet, teach them how to make good gluten-free choices, and feel free to e-mail me if you want more ideas!

nisla@comcast.net

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This disease is not the end of the world. It only means that they can't eat gluten. Be thankful that they found out at the age of 4 and not 36 like I did. By the time I found out this disease had nearly caused me to lose everything I had. I spent 36 years being sick everyday. I missed out on and lost so much because of it. Your children will not have to go through that. This disease has a silver lining. From a very young age they are going to be forced to eat healthy and take better care of their bodies than they otherwise would. How is that a bad thing? You will find that this disease is not as restrictive as it may seem at first.

I have a son, age 9, and kids are far more resilient than we think they are. He has a classmate with very severe celiac and the kids are very supportive and protective of him. You will have to make an effort to keeps the teachers and other adults informed. Good luck, it does get better.

Ianm

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Dear Christine,

the others are so right in what they say! It can feel overwhelming at first, but things get better. You all have to cope anyway, for what else is there to do? Like Ianm, the mystery of my symptoms wasn't solved until rather later in life. I didn't know what the problem was until July of last year...at age 46! As a child (and adult), I had terrible stomach aches, constipation, bone pain, etc., all of which your little girls are so very fortunate to be able to avoid. Also, I can identify with the smaller stature of your girls. When I was in the 7th grade, I weighed 63 lbs. and was 4' 11". I recently read an article that discussed how, all too often, gender can determine whether or not a child is screened for Celiac. The fact that a female child is tiny is not always viewed as a matter of concern, so Celiac is sometimes missed in young girls. So, here again, your girls have the advantage! (By the way, both of my parents were tall people, and even eating gluten-laden food, I was able to reach my full height, two years after graduating high school, of 5' 8 1/2". I'm taller now than the people that used to tease me about being short...Ha, Ha!) Since your children have started their healthy, new diet, I'm sure that they will catch up eventually and be just fine. And as for the light sensitivity, my husband has trouble with the pupil of one eye; it pretty much stays dilated (he was playing pitch and catch with our son and the tennis ball they were using hit a tree branch and smacked him right in the eye, making it bleed). It is mostly just a minor inconvenience for him. He wears cheap sunglasses when he needs to. I know how it is to suffer when your children are sick...all parents agonize that way. We want to protect our babies and it hurts when something is wrong. But how lucky you are to be able to fix your girls good food that will start them off in life as healthy, happy people. And they are lucky to have a mom that loves them so much!

Best to you all.

Paula

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Hi!

I just wanted to encourage you.

My daughter has Down syndrome as well as celiac disease. Please allow yourself time to grieve and adjust to your twins diagnoses.

No it's not the end of the world. But it's not easy, and it does produce anxiety and stress for you especially as their Mommy. The path to acceptance is different for everyone and there is no right way. Some just go with things, some worry themselves to death and use a diagnosis to remain in a perpetual state of feeling sorry for themselves, but most of us continue along until one day we realize that we don't even consider their diagnosis on an every day basis anymore. Then you get to the point where one day it hits you, "Oh Wow, my daughter has Down syndrome!"....because you haven't thought about it in so long. I had one of those moments recently. I hardly even think about my girl being different anymore because it's just a part of who she is and a part that I happen to love.

I will admit that I had a harder time with the celiac than I did the Down syndrome. Odd huh? But my story is long and the DS diagnosis was prenatal and a spiritual experience for me. :) But the celiac was just a nuisance, another thing that she will have to deal w/that makes her different.

Anyway, don't beat yourself up for the way you are feeling. It's okay! And they will be okay too! And so will you after you take the time YOU need to adjust. Hey, and it's easier for the Dads usually because we are the primary caregiver and nutritionist in our kids lives.

HUGS, Nicole

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Just chiming in with a hug. My dd is not diagnosed yet, but when we did the gluten free diet and found relief, it was bittersweet. I was happy that her suffering was gone, but on the other hand the realization of what that might mean was overwhelming. I had quite a few crying days as I accidently gluted her, and as I realized how difficult this would be. It is worth it, and how wonderful to know now instead of 20 years from now. Hang in there and keep coming here for support, it will get easier. When I get down I think of some of the others on here who seem to have it all together with this lifestyle. I WILL get there, and so will you. And then you will be the one lending support to a scared newbie! :)

Jess

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Guest taweavmo3

Don't feel bad for feeling this way.....I've had my crying days too and I don't think they are all behind me yet. It's only been three weeks so far. I had a blowout with my husband a few days ago, part of it was just frustration over this diet, and part of it was frustration over feeling the burden of handling all the changes myself. He has yet to read a single book about Celiac.

I know too that things could be much worse, and I keep telling myself that whenever I start to feel sorry for myself. This doesn't always make me feel better though, and I don't think it always should. It is a lifestyle change, and it is hard. I think you have to allow yourself to feel these things, it's the only way to move onto acceptance.

I think we'll get the hang of this, and eventually we'll wonder what the heck we were so upset about! Until then, lean on others like the great people on this board who know what it's like. Thank goodness for the internet or I'd be a basketcase right now!

Hang in there......there are quite a few of us newbies on right now, so we can all support each other through this trying transitional period!

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Four months is barely enough time to figure out which way is up, let alone feel chipper about it! Sounds like you are having a normal reaction. Don't expect too much too soon. We (son and husband) were dx over a year ago and I want to assure you that you WILL be able to do this, it just takes some time -- more like 9 months -- to feel like you've "got the hang of it"

Meanwhile, for sanity's sake, stop blaming yourself. Genetic diseases are passed around all the time. My son also has more going on than celiac, and it's all genetic, but you have to resist the impulse to over analyze the "why". At the end of the day, there's nothing you can do to change what you have to deal with , but a lot you can do to change your attitude about it. Don't feel sorry for your children, be glad they don't have a truly life-threatening and horrible disease (yes, yes, I know, flamers, assemble in a line to the right :) Celiac is inconvenient, annoying, sometimes depressing, dangerous when untreated and no fun -- but it can't substantially change your life if you don't let it.

Everyone, every child, has something to deal with. Once we got through the grief (which, admittedly, was easier for us because my son nearly died from untreated celiac) we made a very conscious decision to be relentlessly positive. No pity-parties allowed. Every time my son wanted one, I would remind him of all the food he can have, all the children who starve every day, and all the people with terminal illness. Do I want to feel badly? You betcha! But I can't go there. He takes his cues from me, and if we don't act like it's the end of the world/a big problem/worth changing our life over/ he will have the happy, well-adjusted future I want for him, PLUS compassion galore.

Hang in there. We all promise, it will get better. You can do this, and so can they

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Guest ajlauer

During pregnancy, I think we all kinda daydream about a new "Perfect Child" award, created especially for our kids. We want them to have everything. And when something goes wrong - even if it's not the worst thing that could happen - it is still devastating. When we found out my daughter was allergic to 7 types of foods, you'd have thought we just received a death sentence! The way I deal with bad news in the health department, is visualize the statistic. 1 in 133 people has celiac disease. So you figure.... lets say your child's school has 1300 kids in it, there are 9 other kids at the school with the same thing. And thats in every school - all across the country. If you can visualize the other million people that have the same condition, it really does help!

I was diagnosed with something about 10 years ago, that affects 1 in 4 people. So I went to school, and in my mind I was looking at my classmates and thinking "nope...nope....nope... GOT IT.. nope...nope...nope... GOT IT...."

*hugs*

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