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samsmom

6yr Old Type 1 Diabetic (2yrs) New Celiac

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My 6 yr old daughter was diagnosed with type 1 Diabetes in Nov. 2005 when she was 4. We have delt with symptoms of Celiac probably just as long as the Diabetes Diagnosis. But we just got the biopsy results confirming Celiac last week.

So by reading on this site it is comforting to know that my child is like many other with this disease. One second she is fine, the next she is screaming at me or her dad, then she cries and says we are mean, and she doesn't like us. Then, like her teenage sister, she will go in her room and slam the door, sometimes she even shouts at us from behind the door. Thank goodness my husband and I have good sense of humors. We just look at eachother and smile and pray that this will pass soon. :rolleyes:

We deal with carb counting, and many shots a day. Especially the weeks prior to the confirmation of Celiac she could not get enough food. We have given her as many as eight shots per day. It is an awful feeling. She is always so hungry, and I feel bad telling her no she cannot eat because of the diabetes/insulin issues, and now with the Celiac and the sacrafices for it. She has been crying A LOT! It makes our hearts hurt for her.

She has also had major problems with her teeth. She has caps on most teeth. The last oral surgery she had is what stimulated the Diabetes and possibly the Celiac. She is constantly getting abcesses in her mouth, that are in different locations. Then they just go away. Now she is facing more oral surgery due to an abcess under a tooth that is already capped. HELP, does anyone else have this problem? Any comments or suggestions?

Also, my daughter loves cold cereal in the A.M. I found Fruity Pebbles that look ok, so I bought them. But it took me a while as I read each box and put each one back, it is definately frustrating. And I still feel like I am questioning if I was right in buying it, and giving it to her. HELP!

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Hi, and welcome to these boards. The problem your daughter has with her teeth is a symptom of celiac disease. I suggest you have her levels of essential nutrients checked, she is probably very low in some of them. The ones most likely to be a problem are ferritin (iron), vitamin D, vitamins B6 and B12, calcium and magnesium, potassium and vitamin K.

The reason for being malnourished (and her constantly being hungry confirms that) is, that her bowels can't absorb nutrients because her villi are damaged. As the villi heal, she will stop being hungry all the time, but be patient, it will take a while.

Try giving her more protein and saturated fat (coconut oil is excellent, as are avocados) to keep her satisfied longer. Many of us can't really tolerate carbs, other than from vegetables, very well. And especially with her tooth problems (and the diabetes), you really want to limit simple carbs and sugars. And of course, your average breakfast cereal is loaded with both.

If you cut down on the carbs (and NOBODY needs any grains to be healthy, contrary to what the ridiculous food pyramid tells us), she won't need as many shots any more.

Also, if she eats/drinks dairy, you will need to eliminate that, at least for a while. The tips of the villi produce the enzyme lactase, which allows some people to tolerate dairy (most people can't tolerate it, even if they don't realize it). Since she was just diagnosed with celiac disease, the tips of her villi are gone, meaning she is at least lactose intolerant.

Most people diagnosed with celiac disease can't tolerate any dairy for about six months, after which some can have it again.

I am not sure which cereals are gluten-free, as I can't eat any of them anyway. But here is a link to Nini's website. Scroll down to the bottom to find the 'Newbie survival kit' to download. It will help you immensely. http://magickhand.googlepages.com/home

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I'm sorry you and your dd are going through all of this. My dd#2 (who has celiac) has more behavioral problems than anything else when she eats gluten. She is SO picky about clothes and she always cries about the simplest things. It drives me nuts.

I don't know what cereals your dd can have because of the diabetes, but here are a few gluten-free ones: General Mills Dora stars, Cocoa pebbles, fruity pebbles, trix, Mickey mouse clubhouse cereal, and one other similar to the mickey mouse clubhouse, but I dont' remember the name of it right now.

We always keep fresh fruit around. My dd's LOVE bananas and grapes. Go to your local health food store for different things, too.

Good luck!

ptkds

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Except for the diabetes, this is my DD exactly! She had oral surgery a few years ago and has several caps on her teeth. I have said for years she is X going on 15! Things have improved greatly with the gluten free diet. Also, my younger two were diagnosed at a much younger age and have perfect teeth as we have been careful to visit a dentist very regularly.

As for gluten free cereal, Envirokidz makes several-Gorilla Munch (like corn pops), Amazon Flakes and Panda Puffs (peanut butter). They are organic so they lack the processed sugars other cold cereals have so much of.

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The diabetes certainly would complicate things. Keep in mind if her blood sugar is too high or too low she will be hungry. As someone else already said, feeding her protein and fat with meals is essential to keeping full for longer.

I am diabetic but do not use insulin so perhaps I have a bit more leeway with diet, at least between meals. But isn't there something you could give her between meals as a snack that wouldn't require more insulin? Like cheese, raw veggies, canned green beans, nuts, sugar free Jell-O or broth?

Is an insulin pump an option? I don't know a lot about them and she may be a bit young for one.

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Cold cereals we use are Kinnikrisp, a crispy rice cereal and Nature's Path Honey'd Corn Flakes. I think the Kinnikrisp have a weird after taste, but my son really likes them.

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I'm sending you a longer PM, but I just want to say 2 things. 1-type 1 diabetes plus celiac really SUCKS! 2-I have both and am proof that it can be done and that it is possible to lead a somewhat normal life, it just takes a little planning and some work.

Juliebove--I have a pump and it make a HUGE difference in what diabetics can eat and when. I eat what I want (gluten-free of course) whenever I want and all I have to do is push a few buttons--no shots! It's amazing what medical technology can do.

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Hi!

My daughter also has type 1 diabetes and celiac. She was diagnosed with both about a year ago when she was 5, almost 6 and now she is almost 7.

Please feel free to PM me anytime, I would be happy to share any info or support with you. As far as cereal goes, my daughter eats the envirokids cereals (Panda Puffs, Amazon Flakes, Gorilla Munch and Chocolate Rice Puffs). They tend to be a little lower in sugar than some of the more main stream brands.

As for the insulin there are a couple of important notes - one is that gluten free carb substitutes tend to be quite a bit higher in carbs than the ones you are used to so if she is on a set carb diet you will need to factor that in. Also, my daughter started on an insulin pump very quickly (within 6 months of diagnosis). This has helped a lot but she still often eats a meal then says she's hungry. We try to keep the carbs down at each meal but she eats 6 times a day (breakfast, lunch and dinner plus morning, afternoon and bedtime snacks). We don't really use the pump to just let her eat whatever and whenever but rather to correct constantly and keep adjusting as needed. But she has only had one shot in the last 8 months since getting the pump. I HIGHLY recommend it. It does take some getting used to and you all have been through a lot lately but ultimately it is a God send.

If I can help with any meal plans or carb counts, please let me know. We've got things pretty well under control and my daughter loves her gluten free food, all the usual kid stuff: pizza, mac n cheese, grilled cheese, cookies, cup cakes, lasagna - you name it. Either disease would be easier on it's own and the combo is definitely a bit complicated and you will get the hang of it just like you got the hang of diabetes. Her blood sugar is probably just volitile right now because of problems with absorbtion - this will change (and her insulin requirements will likely increase).

Good luck and please let me know if I can help.

Barb

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Hi,

Thank you all for your info. It is definately nice to know that you are all out there. Like most families, we live a busy life. But I would love to talk to each one of you. I believe that knowledge is the key. But there is also a life to be lived out in the world.

I know that we have a long road ahead of us, but like with the Diabetes, we have gotten WAY better at it. We never even would have thought we could give our child a shot. Now its not as big of a deal, we do it and move on with life. I so look forward to that day with the Celiac. It is still a little scary, and as we found out, expensive. So we have been cooking all meals at home. Tacos have been a hit, with corn tortillas. She is having problems with Lactose, so we have not been giving it to her, which makes her mad and cry. She cries saying she wants it, but cries because she knows how it will make her feel.

Our daughter has had the Jeckyl & Hyde complex lately, so all of the "normal" non-carb snacks (cheese, sliced deli meat, eggs) are all Stupid as she says. But as was mentioned I need to research the Adkins diet, maybe I'll find something good. Having Diabetes and Celiac is definately an interesting challenge.

Thank you all. I look forward to meeting you all and I welcome any comments or suggestions.

samsmom

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I remember thinking that a diabetic could not possibly exist without peanut butter crackers - but alas it is possible! Some low carb/non carb snacks in our house are as follows (I'll try to edit out dairy):

pickles

olives

veggies with a little hummus

celery & peanut butter

cucumber coins

ice cubes (believe it or not, she loves that!)

If I think of others I will send ideas to you. Best of luck to you!

Barb

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Those are some great suggestions. I have other foods that I avoid so I'm probably not the best one to ask what I snack on, but if I could eat anything (gluten-free) here are some low carb snacks I would consider:

broccoli and cheese

green beans (I have come addicted to gb's, I eat them almost every day)

carrots and dip

various nuts-I used to eat almonds all the time when I lived in Calif.

sugar free popsicles

Might look into some of the sugar-free candies like gummy bears, I know some of those have lots of carbs, but just start looking and see what is out there.

Also, cantelope and watermellon have a lot less carbs than other fruits like bananas and apples etc. Still they have enough that would warrant a little insulin, but it might help a little.

And remember, it is alright to eat when she is hungry, you just have to give a bolus injection. Kind of a pain to do it all the time, but that's what you have to do. The main thing is to take charge, DO NOT let the celiac and/or diabetes run her or your family's life. It is always difficult at first, but as you get used to it and discover how much food there really is to eat out there (and not just the expensive specialty foods) you will be much better off. When I first went gluten-free I was buying everything at the specialty store and it was killing me. Now I only buy cookies and a few novelty foods like chicken fingers and breaded fish fillets (I'm a southern boy at heart so I need my daily allowance of fried foods, lol) But mostly now I buy everything from the 3 grocery stores here in town. It took me about 5 months to get here however.

Hang in there though, you can do this!

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