Daughter, 9, Just Diagnosed...

[buffettbride]

Hello everyone!

My 9 year old daughter, was just diagnosed with Celiac Disease. What started out as inexplicable acid reflux, tummy aches, sore throats, recurrent sinus infections, headaches, and hypersensitive emotions two years ago finally has a name. After Zantac wasn't working to treat her acid reflux, we went to Children's Hospital of Denver (where we live). We tried a month-long regimen of Prevacid and a barium swallow, which revealed only minor irritation in her duodenum. Combined with no improvement on the Prevacid, she had an endoscopy which showed minor villous blunting but no damage to her esophogus or tummy (yay). The GI doc mentioned a few things, IBD and Celiac among them, so being the Internet junkie I am, I was all over it. The biopsy came back "sorta" inconclusive, so then the blood tests. Thankfully everything came back normal (mainly diabetes, etc) with the exception of the TTG which confirmed Celiac. We meet next week with the nutritionist and begin our adventures being gluten-free.

I feel so lucky after reading so many stories about those who struggled to get a diagnoses than in just shy of 2 months we know exactly what we're facing. My husband and I have decided to make our house gluten-free so our daughter knows food at home is always safe and this week we're off to the grocery stores (Safeway, Wild Oats, King Soopers, Whole Foods, Vitamin Cottage) to assess what we're up against. I wept reading the ingredients list on Rice-a-Roni this morning, but I can tell you I couldn't be happier when I fed my daughter Fruity Pepples this morning (she asked if she could have Cocoa Pepples too, and from what I've read those are A-OK too!) and knew I wasn't poisoning her. Sadly, with the acid reflux symptoms, I resorted to packing her lunch full of chicken noodle soup and saltines. Poor kid about puked every day in math class (which is right after lunch).

I still don't have the heart to tell her that Mint Oreo Blizzards from Dairy Queen are a thing of the past.

There is only one week of school left, and we'll still be adjusting so I'm holding off on the letters to school and teachers until next year since she won't be entirely gluten free for another two weeks. However, our biggest challenge is Girl Scout camp the end of June and trying to pull off supplemental food while we're still growing used to our new lifestyle. Girl Scouts has been great in working with us so far!

Although I'm sad my little girl has a "disease" I am so looking forward to her feeling great!

After looking back at the last few years and now understanding Celiacs, there's so many minor symptoms she showed. Yellow, flakey stools (she's always pooped that way so I assumed that was normal for her), under-tall (hubby and I are both tall and were tall as children), long eyelashes, acne at 8 years old in the absence of other puberty-onset, mild eczema, and seemingly "out of it" sometimes and difficulty participating in athletic activities--tiring easily. I can't wait to see what eating right does for her!

Anyway, with all that said, Hello!

[gfgypsyqueen]

Hello and welcome. Glad to hear you figured it out so easily for her.

FYI: Talk to the chefs at the Girl Scout Camp now and they should be able to start figuring out what they can provide and what you need to provide.

[kbtoyssni]

Welcome!

From my experience at Girl Scout camp - the girls all help cook lunch which would be a contamination nightmare. You're probably going to be best off sending food. If you want campfire food - try baked potatoes or casserole wrapped in foil and cooked in the fire just like everyone else's food. When I used to go to camp we'd vote on Monday what we wanted to eat for the rest of the week. The leader might be able to send that info home with you daughter so you can provide similar food. Most of it's pretty basic: mac & cheese, hotdogs, etc so it should be too hard to send that stuff.

Cocoa Pebbles recently had gluten added back in - sorry But mint oreo blizzards - I'll bet you can make a modified version at home with mint ice cream and Kinnikinnick K-toos (imitation Oreos).

[sillyactsue]

Hi Buffettbride,

I just wanted to welcome you to the forum. That is great that you found out so quickly what the trouble was. I'm glad you mentioned cocoa pebbles. I didn't know they had added gluten recently. I guess that means no more banana slices covered in crushed cocoa pebbles.

I love this forum even though I have not gotten to frequent it as much as I want. It is a life saver!

Gloria

[Guest j_mommy]

I just want to say what a great mom you are!!!!! I am 24 and have had syptoms all my life....not being down on my parents, but I wish they would have pushed Dr's harder instead of taking the "she'll grow out of this" stuff.

The people here are great and have alot of great suggestions!!!

If you don't have any good books......Living gluten free for Dummies is great.Easy to read and FULL of great info. It has some great starter recipes in it! THe "almost chex mix" one would be great for your daughter to take to camp!!!!

Good Luck and and it does get easier! Hang in there!

[Karen B.]

I've never had the Cocoa Pebbles but EnviroKids Koala Crisps are a good sub for Cocoa Krispies and best yet, I can pick them up at my regular Kroger without having to make a trip across town for Whole Foods. They make a lot of good gluten-free products but make sure it is gluten-free because they also make regular stuff.

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[Karen B.]

I just want to say what a great mom you are!!!!! I am 24 and have had syptoms all my life....not being down on my parents, but I wish they would have pushed Dr's harder instead of taking the "she'll grow out of this" stuff.

----snip----

I'm 47 and when I was 11, I became very ill and didn't get better until major steroids and a few years passed. I wasn't diagnosed with celiac disease until 2003 when I had a major health crisis. I spoke about my experience with a pediatrician that is a member of our local group (he has Celiac) and he said something I took to heart. This is the best time in history to have Celiac because we have all of these tests and tools to tell us what problems exist and where the damage is occurring. Thirty years ago, a diagnosis of Celiac was difficult to arrive at and someone like me (overweight) would not have ever been considered a candidate for the elimination testing.

The next improvement will be when we start to identify the kids that might have celiac disease before they get to the point of gross illness.

I wouldn't be surprised if the next few years don't contain some startling revealations about the effect of gluten intolerance on other health conditions. We're already seeing that on autism and diabetes to name a couple.

[dahams04]

Cocoa Pebbles recently had gluten added back in - sorry But mint oreo blizzards - I'll bet you can make a modified version at home with mint ice cream and Kinnikinnick K-toos (imitation Oreos).

Cocoa Puffs just added Gluten back in Cocoa Pebbles are still ok (pretty sure)

There are also Trix that are safe.

[buffettbride]

Thanks so much for the warm welcome everyone! The last week has been a bit overwhelming, to say the least, but so far so good and my daughter is already starting to feel better because of limited gluten (we're not going officially gluten-free until Wednesday after we meet with the nutritionist) but she's only had maybe 1-2 foods a day that contained gluten. I've reminded her, though, that "mostly gluten-free" won't be good enough for a long-term solution, that it is a lifetime commitment and once her body truly heals, her reaction to gluten will likely be much stronger than just a tummy ache and reflux.

I can't imagine what it must be like for those who went undiagnosed/misdiagnosed with this for so long. It's a real booger, that's for sure. My mother and I are going to be tested. She has a history of "stomach problems" and even has suffered bladder cancer and big surprise, all she essentially eats is toast and cookies and cereal, has Fibromyalgia, and has been chronically depressed/bipolar for as long as I can remember. I've never had any problems, but it's worth looking into, for sure. I feel so, so lucky my daughter's diagnosis came so easy!

I guess I have a question that has my husband and I at odds. I am of the feeling that if I trust the ingredients on a label (such as Kraft who spells everything out for you) that even if a product isn't labeled "gluten free" I am willing to use the product. He however, is more insistent that the product actually say "gluten free" on it. I think that is a bit excessive (he's extremely stubborn and overprotective) but I'm not sure how to convince him otherwise. His main concern is machinery that processes food that uses gluten as a lubricant. I don't really have an answer for him and I haven't really read anything about it.

Does anyone have any resources which may help settle some of that concern? I want to do the right thing for my daughter, first and foremost, but we spent 2 hours in Wild Oats last week and saw how limited the food options are if you stick with the true "gluten free" label.

[buffettbride]

I just want to say what a great mom you are!!!!! I am 24 and have had syptoms all my life....not being down on my parents, but I wish they would have pushed Dr's harder instead of taking the "she'll grow out of this" stuff.

The people here are great and have alot of great suggestions!!!

If you don't have any good books......Living gluten free for Dummies is great.Easy to read and FULL of great info. It has some great starter recipes in it! THe "almost chex mix" one would be great for your daughter to take to camp!!!!

Good Luck and and it does get easier! Hang in there!

We picked up a box of the peanut butter Envirokids (she has a thing for Pandas, and thankfully no nut allergy!). She really likes them.

She'd love the "Almost Chex Mix"...I see that becoming a total staple at our house.

We also made polenta this weekend and it was simply delicious!

[ptkds]

If you stuck to a "gluten-free" label, your dd would be EXTREMELY limited, more than needed. Alot of companies refuse to lable their products as gluten free because of liability. But your dd can have Cocoa pebbles, trix, fruity pebbles, Dora cereal, and a few other mainstream cereals. None of these are labeled gluten-free, but they are safe. We eat them all the time w/out a problem.

Wal-marts brands of food are labeled gluten-free if they are. I prefer to get the gluten-free labeled stuff, but just so I don't have to read over the labels several times.

Good luck!

ptkds

[buffettbride]

If you stuck to a "gluten-free" label, your dd would be EXTREMELY limited, more than needed. Alot of companies refuse to lable their products as gluten free because of liability. But your dd can have Cocoa pebbles, trix, fruity pebbles, Dora cereal, and a few other mainstream cereals. None of these are labeled gluten-free, but they are safe. We eat them all the time w/out a problem.

Wal-marts brands of food are labeled gluten-free if they are. I prefer to get the gluten-free labeled stuff, but just so I don't have to read over the labels several times.

Good luck!

ptkds

Wow. Thanks so much! We usually shop at King Soopers (which is a Kroger store) and I'm waiting to hear back where I can see the ingredients for all the Disney Magic Selections products without having to spend hours in the grocery store doing so, because I've heard quite a bit of that stuff is gluten-free.

I will definitely have to check out WalMart though! That makes this much easier on the pocketbook!