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cassieg1

My Rambling All-Over-The-Place Intro...

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My 8yo is having her endoscopy tomorrow to confirm celiac. She is tiny...44 lbs. Still on the growth chart (barely) , but our pediatrician decided to run some blood tests to be sure nothing else was going on. All 4 of the celiac markers were waaay high, and she's positive for the Endomysial Antibody.

 

I'm about 10 days into all of this. At first, I was "Phew. At least it's not cancer. I can deal." And while I still feel that way, I'm finding the more I learn, the more that I can barely hold it together.

 

I don't want to be the food-allergy mom that makes everyone crazy. And I don't want her to be the food allergy kid that can never have anything at a party, who is a basket case with anxiety because we have to be hyper-vigilant about food everywhere. I just want her to be a care-free kid. And I don't want to be heartbroken every day. 

 

I could use some words of wisdom. Something to make me feel like I can do this. That I can somehow have her exist in a world where exposure to a bread crumb can make her sick. As silly as it may sound, I've already jumped ahead to her first kiss and how it's impacted by celiac. I'm just so sad.

 

Thank you.

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I'm so sorry.  If it's any consolation, there are many of us moms on the journey of having a child with celiac that share those exact same thoughts and wishes.  I don't know if there is any way to not ever feel sadness over your child having to be 'different' and not able to have a completely carefree childhood, but I guess what I'm realizing is that children have had celiac for a long, long time, and all things considered, this may be the best time in the history of the world to be a child diagnosed with celiac.  There is increased awareness of food-related issues in general (e.g. the severity of peanut allergies), not to mention the fact that we know what goes wrong when someone has celiac and exactly how to treat them to make them better.  Your daughter will probably surprise you with the ownership she begins to take over her own health once she makes the connection to foods that make her feel better.  I think having a child with celiac calls for planning ahead to have more treats readily available so your daughter won't have to miss out entirely in school or at parties, just instead be able to partake of a cupcake, piece of candy, baked item, etc. that is safe for her.  Now that she's 8, she's probably old enough to enjoy going to the supermarket or specialty store with you and look for a variety of foods that are safe for her to eat but also taste good, and maybe even helping to plan and cook meals that are safe and healthy for the whole family. 

 

I am a mom of a toddler with celiac, so I can't speak from experience, but I have a cousin who grew up with celiac disease and I've asked her some of these questions when feeling extremely sad for my daughter.  From speaking with her, it seems it might be harder on the moms looking on than on the child themself. My cousin is an extremely independent and disciplined adult who has had all kinds of life experiences -- travel, academic success in medical school, etc., and it's helpful for me to realize that many people with chronic diseases can't manage them as easily as someone with celiac potentially can.  I don't think anyone would ever wish this for their child, but I do think there are some silver linings that really foster positive qualities in a child who learns to look out for their health.  

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I so remember that first month of finding out both my girls had celiac and my son was going to get it someday.  My feelings were so conflicted - sadness for my oldest (7.5 at the time) and joy for my youngest (1.5 at the time).  Still, a year out, my husband and I go through conversations about how "it's just so weird that she won't be drinking cheap beer in college" and "how is she going to bring up celiac to boyfriends that want to kiss her?"  We all do it.

 

But, nearly a year later, we live a much more joyful life.  The oldest no longer complains of tummy aches and doesn't have to get up from a meal several times to relieve her bowels.  The youngest (who was so, so sickly and thin and had no color to her skin) has cheeks now.  Really, sweet, loveable cheeks!  I've worked HARD over the last year to grow those cheeks!!

 

Yes, we plan out meals and snacks.  Yes, we take alternative food to parties.  Yes, we're different, but you know what, we are healthy and thriving.  The oldest is so good about reading labels and taking control of her food.  It's really awesome to see that she picked up the nuances early on.  Only food restrictive kids would even pay attention that another kids stuck a dirty hand in the bag of food.

 

This year's teacher asked if my kid would like to give a little presentation about celiac to the other kids in the class.  My kid is a total ham and can talk to a brick wall so she happily took that on.  And she ended her little thing with handing everybody a gluten-free oreo.  HUGE hit!  It helped the other kids see that her food was just as good.

 

So, yes, you're here and you're going to rock this.  We are all here to help.  Vent, scream, cry and ask us lots of questions.

 

Oh, one last thing.  Both of my girls got glutened once since all this started.  And, truthfully, it was the best thing that could have happened.  The older kid was up puking for ten hours straight.  A long, miserable night, but she was 8 by that point and remembered every second of the horror.  It totally helped so that she would take it seriously.

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Honestly you will be overwhelmed with this for awhile, but, you will figure it all out and no matter what your child will get better.  Ask any and all questions there are tons of great idea's here. You are not alone !!!!   We have all experienced mistakes and wins with our kids, ourselves and our families.  

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Take a breath.

 

Know this:  It sucks.  As a parent it really sucks. It stinks then we know the things they won't have. It sucks when they are upset about being different. It sucks when you see people treating them different and they don't even realize it and you want to punch people!  ALL of it sucks! 

 

It is a huge change.  It will take time but you will get there.  She won't be able to do things the exact same way but she can still do them.  The good news is that you need to be vigilant over gluten but you are not in the position some are. It won't kill her if she runs into crumbs here and there.  

 

You CAN do this. You WILL do this.  There will be times you cry in your room or the shower.  Days you beg that it should be you and not her. Then you get up and get to it again!  You do it because you are Mom and you rock!

 

BTW- you and Dad and any sibs need to be tested as well.  There is a strong genetic link.  Do this now esp. if you are taking the house gluten-free/

 

Breath.

 

You will be fine!!!

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So I don't have kids (and I will admit I skimmed through the other replies, so sorry if I'm repeating anything others have said), but anywho...

As far as the classroom goes, I have seen a couple of really good ideas on here

-one person said that the teacher had everyone in the class make placemats for snack time. The placemats were to teach respect for other people's personal bubbles and was a pretty good arts and crafts idea if you ask me (and had the added benefit of other kids not getting their gluten filled snack on your kid's gluten free snack).

-another parent posted that they went to the store and bought a "treasure chest" for their child's special gluten free snacks. This treasure chest was kept in the classroom with snacks to be used when other parents brought in goodies (such as classroom holiday and birthday treats) for a class party. This was there was no worry about your child being left out of having a treat when little Johnny's mom brought in cupcakes for his birthday.

As far as the kisses and such...first off, that should be years down the road. Secondly, and this is how I look at it as a single 25 year old, if the other person is not willing to either eat gluten free foods or brush their teeth before kissing to avoid me getting sick, then they aren't worth my time. That's blunt, but true. It may lead to minor heart breaks (like "my crush doesn't really like me"), but it avoids long term heart breaks (like "they were using me for money, sex, to make and ex jealous, etc.)

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Thank you, everyone. You really have helped me with your thoughtful comments. My friends have been great, but there is nothing like support from people who have been in your shoes. She had her endoscopy today, no problems at all. Biopsy results should be in before Monday. 

 

I really need to focus on being thankful that she's going to be healthy. That is the most important thing, and I get that. I do. And I'm grateful that we can "cure" this by diet, not medication.

 

I'm feeling a little paralyzed as to what my next steps should be. I'd really like to build a concrete barrier around my kitchen, blow it up and start from scratch. I've cleaned the fridge, freezer, pantry...need to do drawers for crumbs, etc. Got her her own toaster. Still not clear about what I need to replace and what is OK to keep: wooden spoons, cutting boards, non-stick cookware...am I purging everything?

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Are you making a gluten-free kitchen or a gluten-free area for her in the kitchen?  That changes everything.

 

Some will have an area of their kitchen for the gluten-free items and they buy those items in a specific color so nobody uses them on gluten containing food.  For example, she needs a safe toaster, collander, cutting board, cooking spoons and cookware.  She also needs safe things for school lunch - new lunchbox, food containers (plastic, silicone, etc should be tossed - just get new ones, and a new thermos).  Plus, buy disposable napkins and have her unfold one before she puts her lunch on the table - it's a visual reminder for the other kids to get their paws off her stuff!  Then she needs a "safe" shelf in the fridge (make it a higher one so other food doesn't fall into her safe area) - her own butter, peanut butter, jelly, mayo, etc.  Only clean silverware can go in these spaces.  Start small, you will get there.

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Your cookware may not need to be replaced but it depends on what kind (nonstick tends to scratch and hold onto icky gluten) but the list Africanqueen made is a good one.  We have red/orange cooking utensils for gluten free cooking (though that's pretty much all we do now. It's more for when we have doings that I have other serving wear.)  

 

We did some gluten for DH and I for a while then it was just more of a hassle than it was worth so we are gluten free except for a few things in the "adult" cabinet. But that was just easier for me. Not everyone does it that way.

 

There is a learning curve for sure and you WILL get there!!!  You can do it!  

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My 9 year old is three years into the diet and let me tell you, it does get easier.  It is just a way of life.  We barely even think about it now because it is second nature.  At the time of his diagnosis, I tested positive as well, so we are gluten free together.  It really helped to have the whole house gluten free.  My husband and older son still eat gluten and still have some things in the house (bread for sandwiches, cereal) but any cooking done in the kitchen is gluten free.

 

I actually cried in the middle of the grocery store back when we first started out.  I left my full cart there in the aisle and left the store.  We had tacos 4 times that week because I the thought of cooking anything else was overwhelming.  Turns out, most of our recipes that are family favorites were pretty easy to convert to gluten free.

 

Let your child take the lead.  In the beginning, when he was going to a birthday party, I would try to send the same food for him to eat.  I was buying expensive gluten-free cupcakes from Whole Foods to send with him.  Several months later, he told me he never really liked cupcakes in the first place and if he was bringing his own food, could he bring something he actually likes?  Duh!  Same thing with Thanksgiving.  I was making a full, traditional meal to take to our in-laws and he never really liked Turkey and stuffing anyway!  He is thrilled to eat what he likes.

 

I think as adults we get too wrapped up in food.  When I was packing treats for a recent party and letting him know what to expect, he said, "mom, its just food.  I'm not going to the party for the food.  I'm going to be with my friends."  If we could all be that wise (I'd be 30 lbs lighter!)

 

I can relate to your "first kiss" comment too.  When Joe was diagnosed, I immediately thought, "oh great, now I'm going to have to find him a nice celiac girl to marry!"  And how will he go to college if he can't drink beer?  It will all be fine.

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