Frutose Intolerance

Dear L.,
Thank God you have identified your son's problems and his bowels are on the mend!! However, as you have accurately stated, he is continuing to starve. His doctors need to know about his low calorie intake.
Just to give you a "head's up", if he hasn't had one already, they may talk to you about a temporary feeding tube.

Have you tried:
Pediasure? http://pediasure.com/faq.aspx (The site has recipes)
Soy? Vanilla soy has gluten, the others do not http://www.silksoymilk.com/FAQ.aspx#AL-5
Rice Milk? My problem with rice milk is that it has no protein in it.
Goat's Milk?
Bouillon cubes mixed with various milks to form gravies to drink?

I am very surprised that the pediatricians and gastroenterologists who identified his problems didn't send you to a pediatric dietitian to assist in a high calorie, low fructose diet. I know it's a long drive, but I'm hoping that you're working with the doctors at UNC Chapel Hill, and not locally. I am not criticizing the Naval Hospital physicians, it's just that Chapel Hill has a top-notch pediatric gastroenterology department.
Whoever is managing his medical care ... please call them first thing Monday morning and insist on a consult with a PEDIATRIC NUTRITIONIST or DIETITIAN who specializes in issues like this. If you are only seeing local doctors, insist on a Chapel Hill consult ASAP. Tricare WILL pay for Chapel Hill and for the dietitian.
Good luck!
Edit note: Some days a month, Chapel Hill's Pediatric Gastroenterologists have clinic days at New Hanover Hospital in Wilmington. That would be a much shorter drive for you.

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i have a friend in our church who's son was having problems gaining weight after a celiac diagnosis. they gave him jared baby food, with scoops of butter mixed in. also full fat cheeses and yogurts are good.

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L., I am not sure about Pedisure but that is an option. Your DR should be able to give you some suggestions as well to help increase calories. When our DD was a baby she nursed and until she was about 2 she didnt' take milk... so we added VANILLA flavoring to it.. thus increasing the flavor. I know that Horizon Organic Milk has a much more Vanilla flavoring to it.

What about yogurt or get yogurt tubes and freeze them better than the empty calorie kool aid options. Puddings are another great alternative, you can get some powdered calorie enhancers (check with your DR first about this) and add it to the pudding or other foods you are making.

My nephew has Celiac's as well and I will have to ask my sister in law as he is a healthy weight, weight proportioned to height.

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Hi L.. Pediasure is a great source of calories, vitamins, minerals, etc. It does not have any of your son's food allergens but it does have some sucrose. If you go to Pediasure.com and click on the nutrition information and click on one of the flavors it will give you a list of ingredients.

If he can't have that you can make some homemade drinks with high calories. Milk, yogurt, fruit mixed(if he can have it), and you can add in some weight gain powder for extra calories. For low sugar yogurt you can try Dannon Lite N Fit Carb Control. I read that it only has 3 grams of sugar and that sugar is from the natural milk sugar.
Since he doesn't like milk you can begin offering higher calorie foods such as cheese, peanut butter, putting the weight gain powder on his foods, etc. You could try Soy milk to see if he likes that taste better. My daughter loves it (she has a dairy allergy).
Here is a link to a website you may find helpful:
www.specialfoods.com/weight.html
God Bless~

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My sister had to get her son to gain weight for different reasons. She used lots of peanut butter and made smoothies and milkshakes with yogurt, ice cream, whole milk. Whole Foods has a gluten free bakery where you can get items that he otherwise wouldn't be able to eat.

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L., as others have posted you need to get your son in to see a dietitian, one that specializes in peds or possbile food allergies would be best but if that is not possible an RD with some networking can help get you the right information for your son. I have RD contacts in Fayetteville if you are near this area and can get a referral. I also can find contacts at New Hanover if that helps. I am not sure of your location from original post.

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Check out your local EFMP office, they have a wonderful library about all sorts of things, one of them being Celiac Disease. Good luck!

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My daughter drinks the Nurtipal drinks made by Pedisure. I am not sure if he could have them or not. Please make sure you keep his teeth clean and brush them good. Our daughter was drinking Pedialyte also because she had numberous ear infections and fever. We had to pull her front four teeth because of decay before she was two. We brushed her teeth, but the dentist said that drink was really hard on teeth.

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I too am struggling with caloric intake with my 15 month old son. He has never hit the growth charts! He also has some swallowing issues so we are dependant on the extra calories in pedisure at this time. We are working with a nutritionist who suggested Scandishakes or ScandiCal. Scandishake wouldn't work for you since your son won't drink milk, but the ScandiCal might. It is a Calorie Booster (gluten free) and you can add it to any food. It comes in a powder form and it adds 35 calories per tablespoon. It could be worth researching, the number to order it is 800-4-scandi... 800-472-2634. I hope this information helps!

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just some calorie snack ideas that might help you would know if he can eat it or not.string cheese or cut block cheese in squares cheese is high calorie and good for him adds calories.peanutbutter on celery with a few raisens also good sorce of protean.chicken nuggets,baked potatoes with chilli and cheese that in itself makes a good meal.all childrens favorite french frys.that about all I can think of you said he wont drink milk but how about milkshakes or icecream thats about all I know that might help up calorie intake and still be healthy.

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Please check out www.feingold.org. Feingold is a 30yr old non-profit organization whose purpose is to inform the public about food allergies and petroleum-based artificial ingredients in our food supply. Pedialyte is OK as long as it is clear and not artificially colored. Koolaid is not a good choice for ANY child because the color is artificial and made from petroleum. Also Google Candida Albicans or Candida diet. I have similar sensitivities to wheat and sugar, and it is because wheat, yeast and sugar feed the yeast already present in our bodies. When there is an overgrowth, yeast gets out of balance and it causes inflammation and infections. Feed your son an all-natural diet with lots of eggs, avocado, nuts, plain yogurt (with cinnamon or natural vanilla), baked butternut squash or sweet potatoes, and any meat or veggie he will eat. Fried foods are difficult to digest and not that good for us. It will be worth your effort to educate yourself about all-natural nutrition.

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Nut Butters to the rescue! If he is having a problem with animal fats he might still be okay with plant based fats, which are more natural. Nut butters are high in protein, the best kinds of fat, and many minerals. Almonds are very rarely allergenic, unlike peanuts. I like Sunbutter which is from sunflower seeds (found at Target) and Almond butter. Mix these in a blender with some original flavor rice milk and a splash of virgin coconut oil (which is a medium-chain fat, the kind found in breast milk) and this will go a long way to increase his caloric needs. You could add a little bit of vanilla to give it a nice smell.

Kool Aid has lots of food coloring, which should be avoided because its not good for anyone. If you want to fry stuff try frying in olive oil and see if that makes it better. If he will eat avacado that is also one of the healthiest foods out there.

I hope you keep pushing your doctors until you find some help that can get your kiddo well. It sounds like you are still alone in the dark and not sure what to do. You are his best advocate, be strong and dont be intimidated by doctors.

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Get the name of a reputable pediatric dietician from your pediatrician or the nearest children's hospital. These are professionals who can tell you exactly what you need to do. My best friend has the equivalent of a PhD in this, but they call it advanced specialization or certification. This is important, and you need more than my laymen's advice. Go to a children's hospital that has a NICU and PICU; there is somebody there scientifically trained that can help you.

My own thought is that it doesn't seem good to be frying so much; even kids can have high cholesterol and the beginnings of heart disease. Another thought is to mix powdered milk into things like macaroni and cheese or pudding. And there is something called PediaSure; will he drink that as a drink or a milkshake? GOOD LUCK!

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Its been a couple of weeks, have you had any luck with the suggestions you received?

Not sure about what to replace it with- something that has carbs but no sugar should be challenging to find- unless you try Wild Oats. I know he needs the calories but cooking or frying everything with butter is going to send his cholesterol through the roof! I would suggest talking to a dietician.

Hi L.
I don't have drink ideas, but may I suggest calling your pedis office and they may have a connection to a dietician. Dieticians are good sources for help with your son's diet concerns. I hope this will help. Good luck
PJ

Have you tried whole milk yogurt? When my son was 1, he needed to put on weight too, and would not drink milk (I breastfed him). He LOVED (still does) yogurt though. He just eats it plain. It's a little harder to find whole milk yogurt then the lowfat kind, but all the health food stores have it. Trader Joe's has the best price on it usually. That'll also really help his intestines. Hope this helps. God bless you and your family.

Starches turn into sugar. How about feeding him alot of potatoes and rice and beans and pastas.
I would try to add something to his milk to get him to drink it... not sure what. I guess chocolate syrup would be out since it is sugary.
What if he saw you drinking alot of milk? Would he begin to try it?

Do you feed him whole grains> brown rice, quinoa? Oat meal... these are really good filling , nutritous foods and are not fried or cooked in butter which you said you do, but he can't digest fat . Cooking like that would be hard to digest!

Go basic and natural. Cut out artifical flavors and colors... check coolaid... not so healthy. What about rice milk, try vanilla.?

It sounds like you need a dietician to help you with your son's diet. Ask your pediatrician for a referral. My son had his tonsils out in kindergarten and he lost 1/6 of this body weight. We fed him 3 meals a day and 3 snacks a day and he seemed to bounce back--it took about 6 months for his weight to be back to normal. My mom is a dietician and she helped me a lot with what to feed him to help him get back to his pre-surgery weight.