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BreeVanDeCamp

Recently Diagnosed 9 Y/o Dd--emotional Issues And Lethargy

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Hello everyone, my name is Carrie and this is my first post.

A doctor suggested to me that my 9 y/o DD has a gluten allergy. Like many kids, she could live on pasta. Our doctor said that not only is she not getting the vitamins and minerals her body needs to stay healthy, but the gluten is "robbing" her body of nutrients.

FWIW, my DD is a toe-walker (always has been) has low energy and is extremely (overly) emotional. She worries me with her lethargy and lack of interest in sports and playing. She loves reading and art and animals. Three years ago a doctor wanted to perform a surgical lengthening on her achilles because 8 years of toe walking has compromised her flextibility. I was told if we didnt' correct it, she would become more and more of a couch potato because it is just too uncomfortable for her to be athletic if her alignment is so far off. I chose not to do the surgery, but we have tried everything from physical therapy to massage to pilates and stretching and she is still on her toes.

DD is extremely moody. I chalked it up to pre-teen angst, but her inability to cope with her emotions affects everyone around her. She has low energy, is prone to stomach and headaches and cries almost everyday. We have always believed she has sensory integrative issues, but I was reluctant to go searching for a label. We love her for who she is and just do our best to not play into her emotional outbursts. She really has a hard time coping with her emotions. I am concerned that she is THIS moody at nine....what will 15 be like?

Fast-forward to today. I took her to my chiropractor (who puts a strong emphasis on nutrition) because DD has been complaining about pain in her heel that shoots up to her hip. Not only is her sacrum "out", but he believes she has a fairly severe mineral deficiency. He asked about her nutrition and I shared that she is getting pickier and has food texture issues. She could live on white pasta with butter and parmesan. He suggested a gluten free diet and said that we will see a huge improvement in her mood and energy level.

I've spent many of the past 24 hours reading anything I can about gluten-free diets and the connection among the Spectrum, T1 diabetes and Has$#&moto's/hypothyroidism. My husband was diagnosed last year with Type 1 diabetes and is insulin dependant and I have had Hashimotos thyroiditis since age 13. It seems we are a collective autoimmune mess.

I am trying to educate myself on gluten-free eating and the connection between food allergy and mood. I appreciate any stories or resources you can share with me.

We have three children and will be eating gluten free as a family. Today is "the day after" so I will be purging our cupboards of the breads, crackers and cereals and looking to replace them with Celiac-friendly choices. I'd love some kid-friendly snack ideas. My kids are used to a ton of veggies and smoothies, as we juice regularly and have reduced carbs drastically in the past year.

Thank you!

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Wow! Sounds like you're definitley on the right track to getting started ;) Depending on what state you're in, there are several options to explore for groceries. Trader Joes, Whole Foods, Wild Oats, Sprouts, and Henry's all have gluten-free shopping lists on their websites. Sometimes you can do well with smaller healthfood stores too. As for snacks....raw veggies/rice crackers & hummus, quesadillas on corn tortillas, apples & peanut butter, PB&J on rice cakes, banana chips, tortilla chips w/ guacamole, etc. I would recommend the following brands: Tinkyada (rice pasta), Kinnikinnick (mixes/baked goods), Amy's (frozen/canned food), Annie's Naturals (dressings/marinades...not all products are gluten-free, see label), Pamela's (cookies, mixes), Whole Foods Bakery (in the Freezer section), Gluten Free Pantry (myriad of products), OrganicVille (amazing dressings - now at Costco), Shelton Farms (meat products), Han's All Natural (meat products - Costco), Columbus Meats (all varieties are gluten-free!). This is just the tip of the iceberg! :P Keep reading, you'll discover a wealth of information. Good luck to you!

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Welcome! When you say she can live on pasta - many celiacs are "addicted" to gluten. I've heard it compared to morphine in terms of how you body craves it, so loving carbs is really common.

Have you tried putting your daughter in ballet or gymnastics? Ballet is a nice, easy form of exercise that will help stretch the Achilles and gymnastics is just plain fun.

My favorite snacks are anything that can be dipped - chips/salsa, veggies/dip, hot dog/ketchup, cold pizza is delicious, Thai Kitchen "ramen" noddles.

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The mantra of the Gluten Free is "Always read the label." But many mainstream products are gluten-free.

Hormel Gluten-Free Products

http://www.hormel.com/faq/faqList.asp?catitemid=41

Classico pasta sauce is gluten-free.

http://www.classico.com/html/faq/home.asp

Newman's Own has a list online

http://www.newmansown.com/faqs.cfm#q6

If you have a Whole Foods Market near you, you can check to see what gluten-free products they carry by looking up the store's gluten-free list here:

http://www.wholefoodsmarket.com/specialdiets/index.html

As previously mentioned, Tinkyada pasta is (IMO) the best. I serve it in pasta bakes to non-Celiacs and they can't tell the difference.

and check Amazon for gluten-free groceries. They have really low prices on a lot of stuff and since it's through the internet, I don't pay tax (8% savings) and many product ship for free if the total order is over $25. Go to amazon .com and click on the tab that says "See All 41 Product Categories" then click on "Gourmet Food" About half way down the page, on the left under Health & Natural Food is the Gluten Free Products section.

And of course, if you can't find a gluten-free sub for something, ask about it here.

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Also, if it turns out you will really have to go gluten free, you will need to do a thorough cleaning of your entire kitchen (it's amazing where crumbs will hide), get new colanders, sifters, wooden spoons, etc. You'll need to replace old, scratched up plastic kitchenware (plates, utensils), non-stick and cast iron cookware (stainless steel can be thoroughly cleaned so you don't need to worry), bakeware, etc. Also, if you're not careful, a gluten free diet can be very low on fiber. We add flax seed to nearly everything we bake (bread, cookies, quick bread, biscuits) and to pancakes & waffles.

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I am horrible ball of hormones on pasta, as is my sister (who we think is has it, but our family doesn't produce antibodies). I am addicted to it, and I find that Tinyada is just as good as regular pasta. I have even served it with friends and family who get half way through the meal before realizing that if I am eating it, it must be rice pasta.

I made very simple meals muffins or egg and cheese burritos and lots of fruit in the morning, rice and beans or leftovers for lunch, and either pasta or rice with grilled meat and veggies for dinner.

As far as snacks-- apples/carrots and peanut butter, Glutino pretzels, tortilla chips with guacamole/salsa/bean dip, EviroKidz cereal, almonds/M&M/raisins, Mr. Ritts baked goods (shipped from Philadelphia: www.mrritts.com), freeze pops, and my favorites (some people find it disgusting): take a banana, slice it in half the long way, spread with peanut butter, sprinkle chocolate chips in, push back together and wrap in plastic wrap and freeze. It's yummy!

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take a banana, slice it in half the long way, spread with peanut butter, sprinkle chocolate chips in, push back together and wrap in plastic wrap and freeze. It's yummy!

Oh, I am SO going to have to try that! :-)

Rho

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A doctor suggested to me that my 9 y/o DD has a gluten allergy. Like many kids, she could live on pasta. Our doctor said that not only is she not getting the vitamins and minerals her body needs to stay healthy, but the gluten is "robbing" her body of nutrients.

FWIW, my DD is a toe-walker (always has been) has low energy and is extremely (overly) emotional. She worries me with her lethargy and lack of interest in sports and playing. She loves reading and art and animals. Three years ago a doctor wanted to perform a surgical lengthening on her achilles because 8 years of toe walking has compromised her flextibility. I was told if we didnt' correct it, she would become more and more of a couch potato because it is just too uncomfortable for her to be athletic if her alignment is so far off. I chose not to do the surgery, but we have tried everything from physical therapy to massage to pilates and stretching and she is still on her toes.

DD is extremely moody. I chalked it up to pre-teen angst, but her inability to cope with her emotions affects everyone around her. She has low energy, is prone to stomach and headaches and cries almost everyday. We have always believed she has sensory integrative issues, but I was reluctant to go searching for a label. We love her for who she is and just do our best to not play into her emotional outbursts. She really has a hard time coping with her emotions. I am concerned that she is THIS moody at nine....what will 15 be like?

Fast-forward to today. I took her to my chiropractor (who puts a strong emphasis on nutrition) because DD has been complaining about pain in her heel that shoots up to her hip. Not only is her sacrum "out", but he believes she has a fairly severe mineral deficiency. He asked about her nutrition and I shared that she is getting pickier and has food texture issues. She could live on white pasta with butter and parmesan. He suggested a gluten free diet and said that we will see a huge improvement in her mood and energy level.

I've spent many of the past 24 hours reading anything I can about gluten-free diets and the connection among the Spectrum, T1 diabetes and Has$#&moto's/hypothyroidism. My husband was diagnosed last year with Type 1 diabetes and is insulin dependant and I have had Hashimotos thyroiditis since age 13. It seems we are a collective autoimmune mess.

I am trying to educate myself on gluten-free eating and the connection between food allergy and mood. I appreciate any stories or resources you can share with me.

We have three children and will be eating gluten free as a family. Today is "the day after" so I will be purging our cupboards of the breads, crackers and cereals and looking to replace them with Celiac-friendly choices. I'd love some kid-friendly snack ideas. My kids are used to a ton of veggies and smoothies, as we juice regularly and have reduced carbs drastically in the past year.

Thank you!

Hi Carrie!

I'm relatively new here, also - not quite 2 months yet. It was my 9 yo dd who got us started down the gluten free path. Her "issues" were GI problems and decreasing energy level. My dd is a LOT better on the gluten-free diet (and she's had to give up dairy, at least for the time being.) We now suspect that my ds may have gluten issues as well, and he's on a gluten-free "trial." I've found that snacking is the toughest part of the diet for me to get a handle on. Right now, I have in my kitchen: gluten-free pretzels (Glutino or EnerG), various gluten-free cereals (Envirokids, Perky, Glutino brands), Envirokids rice bars (kind of like Rice Krispy Bars), Enjoy Life bars, different gluten-free crackers (Glutino, Rice Thins), gluten-free Tortilla Chips (with gluten-free Salsa), and Bakery On Main gluten-free Granola. That's the gluten-free specific stuff. Luckily, my kids like most fruits & veggies and those are naturally gluten-free. If you already juice and make smoothies, I think you're ahead of the game. It's actually been tougher for my dd to give up dairy than gluten - she loved yogurt and cheese. My ds is having a tougher time than her giving up the gluten, because his symptoms are less overt than hers, and also because he's a big time snacker (oh, and because he's 12 and eats all the time!)

I'm just beginning to get into gluten-free baking and I think that will open up our snack horizons a lot. There are some wonderful gluten-free cookbooks available, and a lot of alternative gluten-free grains to explore. Oh, and if your dd loves pasta, the Tinkyada brand is our favorite. It's the most like "real" pasta.

Good luck to you! This site, and the forums, are a wonderful resource. I spent hours and hours reading when were first went gluten-free.

Rho

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Thank you all so very much for your welcome and your very specific and useful snack suggestions. I have been to both Whole Foods and Henry's in the last 24 hours, so I have seen many of the brands you mentioned. I cooked corn pasta last night and the kids all ate it up. I loaded up on gluten-free cookies and snack bars at Henry's in preparation for a 5 hour plane ride DD has tomorrow.

Right now, we are dealing with the "just this last time" syndrome. She has cried, punched and kicked cupboards and the table when I explain that pizza or Wheat Thins have gluten. I bought Namaste Foods gluten free pizza crust and brownie mixes for tonight. I just made her a fresh peach, mango and orange sherbert smoothie so for now, she is happy and has eaten.

Thank you for the tip on sourcing gluten-free products on Amazon. Does anyone have any other online or delivery co-op sources for gluten-free foods?

Thank you for the manufacturer links. Those will be helpful. And the frozen banana peanut butter with chocolate chips sounds amazing. We will absoluletly try that!

Regarding ballet: My DD has ZERO interest in any kind of performance or team sport. She rides horseback and we are trying to encourage family bike riding. She will not try a dance, cheer or gymnastics class. Just not her thing. My husband and I have offered extra allowance money weekly if she spend 10 minutes on my pilates reformer and takes her minerals each day. We are failing at consistency.

Thanks again for all of your help.

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Hi there - my son was diagnosed with celiac just days after his 4th birthday. He had been exhibiting strong symptoms of celiac since birth, but it took 7 months of pleading with my doctor to get a referral to a GI specialist, and then another 3 years to sort out that he had more than just a food allergy and acid reflux problem. My son also exhibited the things you are talking about - toe walking, horrible mood swings and tantrums, lethargy/fatigue and a very very pale complexion. He too could "live" on pasta (what a picky picky eater!!). At his 4th birthday checkup when he was diagnosed with celiac, it was also noted that he had essentially stopped growing. He had only gained 1 lb from the time he was 2 1/2 years and had gone from 75th % in height to below average.

I was told that it would take a very long time to notice a difference in his physical and emotional demeanour. Well, after less than 3 weeks on a strict gluten free diet, he had a "normal" colour, he was actually SMILING! and had energy. The horrible mood swings and tantrums all but stopped (except for the occassional as would be expected by a 4 year old) and he told me one night (this made me cry) that "his belly-button didn't hurt anymore". Not only all of this, he has now grown over 1 inch and gained 2 lbs in less than 3 months!!

So, hang in there and if your daughter does have a gluten intolerance or celiac disease, you will be amazed at the child you actually have once she is on a gluten-free diet!! Good luck to you :)

Liz2

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Hello Carrie

Our daughters sound very similar.

My 9 yo daughter was diagnosed celiac, by biopsy, late March (one week after turning 9). She did not have any GI symptoms -- she was picked up by random blood screening for a research project. The biopsy proved she had extensive damage.

In hind sight, her only symptoms were emotional and lack of energy. She basically freaked out at the smallest things, was difficult to calm, and was just a very unhappy kid a lot of the time. She was able to hold it together at school for the most part, but was an absolute horror at home. This started around Kindergarten, and kept getting worse. I thought it was a lot of sibling jealousy. I was on the verge of taking her to a psychologist as her behavior was so beyond what my husband and I could deal with.

Since going gluten-free, she is, for the most part, my sweet girl again, like when she was a toddler and preschooler. She made the switch to gluten-free food very very well and I think that the extensive damage by biopsy proved to her the need to be gluten-free. After a couple of weeks, she had energy. She wanted to play in the school yard after school. Prior to going gluten-free she would scream and yell at me that she wanted to go home, even though her younger sister wanted to stay. She has a lot fewer issues with clothes -- sensory issues. I swear before being diagnosed she wore the same pair of panties, every day, for months and months. It was rare that I could get them off her to wash. She still prefers dresses/skirts, but won't have a meltdown if we insist on pants for bike riding, proper ski apparel, etc. She told me that she wants to play indoor soccer during the winter, which is a big step in activity for her.

She still reads A LOT, but plays way more than she did before. She is still easily frustrated, but calms herself quickly, and often shrugs it off. The bad thing about not having GI symptoms, and only behavioral ones, is I'm never really sure if she gets glutened. We are not a gluten-free house, and her dad can be sloppy at times. Today she was off the wall, but she also only got 6.5 hours sleep, so it is hard to tell what is going on.

She is amazing with the new way of eating. She voluntarily chooses to not eat food she is not positive about (except she is convinced all candy is okay -- we are working on that). She never complains and is pretty open to trying new food. She is thrilled, as are my other two kids, about the celiac diagnosis as we have way more treats and baking in the house now than before. She'll go to a party and just not eat, or say she isn't hungry. I wish I could have her self-control, but she knows she feels better not eating gluten.

The best response she gave to a newly diagnosed teacher was, when asked how she feels, she said "I feel happier". Indeed, our whole house is happier.

I hope that your daughter too will feel happier soon and that she has more energy once being gluten-free for a bit.

Good luck.

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Mairin...thank you so much for sharing your story. Wow. I just read it outloud to my husband and we both cannnot believe the similarity in our kids. Like you, we have discussed seeking counseling for her because her tandrums and inability to control her outbursts. She is such a beautiful girl, but smiles are too rare and happiness is fleeting.

I really hope this is the right path for us. Thank you again for your kind words and sharing your stories.

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Thank you all for commenting. I am considering a few things at this point, but once I see the doctor and explain what is happening I am thinking I will go Gluten free and see where that leads me....Thanks again!

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Thank you for the tip on sourcing gluten-free products on Amazon. Does anyone have any other online or delivery co-op sources for gluten-free foods?

Chebe makes awesome pizza crust, great little mini-deli rolls and really good cheese sticks (among other things). Check their website for recipes. There are some tricks to cooking chebe, do a search on this website or PM me if you want more details. It's a mainstay of mine and something I'd cook even if I weren't Celiac. I like to make mini-pizza crusts with my tortilla press and freeze them for lunches later. http://www.chebe.com/

Also, the BEST gluten-free cookie I've tasted has been one I made with Namaste Spice Cake Mix. Follow package directions but don't add the water they call for and it makes great cookies. (I added walnuts) My office of 9 people make 5 dozen cookies vanish in one day during the holidays and I'm the only Celiac.

The Authentic Foods Cinnamon Bread (I posted the other day when I made some for the first time) is easy to make and it makes terriffic toast. So Yummy!

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My 9 year old DD and your 9 year old DD would get along very well! Her favorite meal pre-Celiac was pasta with butter and parmesan. She also hated sports and was "knock-kneed" and had emotional meltdowns on a regular basis. Very few of her symptoms were GI related although she did have burping fits, "acid reflux," and persistent tummy aches.

As a first note, get yourself to the nearest health-food store and buy yourself some Tinkyada pasta! We use the Penne and the Spaghetti regularly for a variety of pasta dishes (but buttered noodles is still her favorite).

I'm only 2 months into this myself and we have already made HUGE strides and it really does get better! I promise!

We have also recently tried the Kinnickinick hot-crossed-buns and those are fantastic as are Gillian's french rolls (we make PB&J with them).

Also, when it comes time to pack lunches for school, try http://www.laptoplunches.com or do a search on this site for "Bento." It makes packing a gluten-free lunch a much less painful experience.

Since going gluten-free, I too feel like I have my little girl back. She's always going to be a drama queen but I can tell just how she carries herself that she is not as susceptible to those meltdowns (hours-long crying fits about everything and nothing). Her personality just seems so much stronger and certain. I can tell when she's been glutened, even if she doesn't get a tummy ache, because it's meltdown city.

I wish you the best of luck with your little girl!

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Thank you Buffetbride for making me feel like this is the right path. You all have so much more experience than I do with gluten-free living and Celiac and it gives me so much hope when you share your stories of improved emotions! My DD is also knock-kneed. I dont' think she will ever love sports, but it hurts me to see her so lethargic and lazy and unwilling to participate.

I've been searching all kinds of sites for information on Bento. I LOVE the idea! I plan to get busy practicing with lunches this summer so I'll be ready for back to school. How fun!

I'll go find that Tinkyada pasta very soon. You all have raved about it. Thanks!

Carrie

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Thank you Buffetbride for making me feel like this is the right path. You all have so much more experience than I do with gluten-free living and Celiac and it gives me so much hope when you share your stories of improved emotions! My DD is also knock-kneed. I dont' think she will ever love sports, but it hurts me to see her so lethargic and lazy and unwilling to participate.

I've been searching all kinds of sites for information on Bento. I LOVE the idea! I plan to get busy practicing with lunches this summer so I'll be ready for back to school. How fun!

I'll go find that Tinkyada pasta very soon. You all have raved about it. Thanks!

Carrie

When I look WAYYYY back, I'd have to say the knock-kneed would have been the first "symptom" but it by itself would have been no indicator of Celiac by itself.

I dont' think my DD will ever love sports either. She's VERY into acting, though, which has escalated into doing more singing and *dancing* which of course, is very good exercise! She also plays volleyball for her school team and does seem to enjoy that.

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Hi Carrie.

I also have a daughter similar to yours. She has never been a toe walker though, more a heel stomper! She (pre gluten-free diet) had emotional meltdowns, lived on bread and was not interested in any activity other than riding her pony. She also has sensory issues with clothes, noise and lights. My daughter was also diagnosed mild aspergers as well.

We have had her gluten-free for 11 months and I would say that only now she is completely better from her high gluten, bread loving lifestyle. We noticed improvements almost straight away, but it has taken this long to fully recover. She is now a lot happier in herself, she still has the odd meltdown but they are short-lived and nowhere near as frequent. Her sensory issues are still there but she can now handle them. Her sore tummys are gone, she finally has grown (23cm in six months!) and she loves being gluten-free. She has also taken up karate, which I would never have believed this time last year.

Stick with the gluten-free diet, don't cheat at all, anywhere, anytime. It really is worth it.

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