Met W/the Pediatric Gi Yesterday

[celiacsmom]

Hey everyone - We made the almost 2 hour treck yesterday to see the pediatric GI specialist. She definitely concurred that there is no doubt he has celiac disease given his classic symptoms (vomiting, weight loss - 3 lbs in 3 weeks or 12% of his starting weight, pot belly, muscle atrophy/flabby arms and legs, fatigue) and his positive ttg of 208. Just curious - how high were your children's ttg's? All the docs I speak with are shocked at his level of 208. One even said he's never seen it over 150 or so. The GI doc suggested we be absolutely meticulous regarding his gulten at least in the beginning i.e. separate butter, wiping counters before prepping his food and just generally keeping his stuff totaly separate from gluten containing foods. I'm totally good with that! I just want him to start getting better - FAST. He's such a sick little guy right now. I was borderline on a meltdown last night when I realized that we had almost nothing in the house he could eat (after my hubby so lovingly put the steak that we were going to have in a non-gluten-free marinade). I ended up giving Cody a PB&J on tapioca bread...not interested and fed it to the dog ($$$$$!!!!)...EnviroKidz cereal w/Lactid...not interested...gluten-free hot dog...pushed it away. He just wanted the tatertots and chix fingers his sis was having. She was thrilled when I told her to go eat in the livingroom and watch cartoons! LOL I was so frustrated and I couldn't get him to eat anything. The overwhelming nature of getting going on the gluten-free diet also hit me all at once. My hubby was awesome though and kept a level head and took control by grabbing the lists of OK foods that we have and starting a shopping list. He then got me to sit down with the gluten-free cookbook and find a recipe so I can make some gluten-free cupcakes for the bday party we are going to tomorrow. I just hope I can find the flour locally!! Speaking of which - where can you get Xanthan Gum? I also was a little frustrated with the doc because her answer to so many of my questions was "I don't know". I realize there is a lot of I Don't Know surrounding this disease, but some of her I Don't Knows were to questions about meds such as Augmentin (he has an ear infection & has a week left on the med), Children's Motrin and Children's Tylenol. Shouldn't a PEDIATRIC GI specialist who lectures on celiac disease know the answer to at least whether or not a celiac disease kid can have Children's OTC pain relievers?????? I was able to find the answer fairly quickly when I got home, but still. I also asked her about support groups/services and she said to look online. I am definitely going to contact Boston Children's for future care and support.

I know I'm rambling (I have a tendancy to do that when I've got a lot on my mind) and I've got to get some work done!!

Heidi

[penguin]

I'm sorry about the diagnosis, but I'm trilled for you that you know how to fix it! Adjustment is hard at first, but I would suggest making the whole house gluten-free. It would definitely help jealousy issues in your kids and then you don't have to worry about cross contamination in your house. In my kitchen, I don't make anything I can't eat and DH has one shelf that he can keep his cheerios, saltines, etc. I don't allow any non-prepackaged gluten into the house. There's lots of kid friendly stuff out there that is gluten-free, like a hotdog and cheese in a corn torilla with ketchup. The EnviroKids cereals are excellent.

Here's a quick cookie recipe to get you by (not mine, someone else on here gave it first )

1 c Jif Peanut Butter (it's gluten-free)

1 c sugar

1 egg

Heat oven to 375, mix ingredients together. Make into balls (I use a 1 tbsp disher), and flatten with a fork like normal pb cookies. Make for 12-15 minutes and let cool.

You can also use some splenda for sugar and I usually add some vanilla and even flax meal! I make this at least twice a week because DH gobbles them up faster than I can make any for me to eat!

Xanthan gum can be found at most health food stores.

Companies like Kraft and Unilever will always clearly list gluten containing ingredients. Cocoa and fruity pebbles are gluten-free. There's lots of great recipes on this board in the cooking section.

It's an adjustment, but it'll make everything a lot easier. Good luck and welcome to the board! There's lots of great people on here!

[Fiddle-Faddle]

Hang in there, Heidi!

I believe the Giant Eagle (store brand) Tater tots are gluten-free. At any rate, I couldn't find anything in the ingredients that pointed to gluten, and I didn't react, either. Doublecheck the ingredients on whatever store brand your grocery offers--I'd hate your little one to get sick because I was either wrong or sloppy.

Seems to me, tater tots should be fairly easy to make from scratch. You might try grating them with a little bit of onion and mixing with egg (if tolerated) and a couple of spoonfuls of gluten-free flour or cornstarch/cornmeal combination--kinda like latkes. Make them into little balls (the kids can help you d this, they'll think it's Playdough) and fry them in oil. I don't think you need to totally deep-fry--just keep turning them every couple of minutes as they brown. Or you might be able to mix some oil into the batter and bake the balls.

And I make chicken fingers by dipping chicken tenderloins in cornstarch/cornmeal/Montreal Steak Seasoning combo and frying (again, I don't deep-fry--I just put about 1/4 inch of oil or a little less into the pan) 2-3 minutes per side. Sometimes I squeeze a lemon wedge over them (the kids LOVE having their own lemon wedges to squeeze). It's very quick, and the kids can help by measuring out the cornstarch.cornmeal, or they can dredge the chicken if they wear disposable plastic gloves.

every time I write about food, I get hungry....Good luck! Let us know how it goes, okay?

[chrissy]

heidi---i had several meltdowns when my 3 girls were first diagnosed. we've been at this for 2 months now and it has been easier than i thought it would be. i have even been going gluten free with them since monday in hopes it might help some of my health troubles. (i tested neg for celiac) we are really fortunate to have a ped gi who seems pretty up to date on his info. ( he's also an "older" parent of young children like me, so i feel like we're in the same dimension) when we first suspected celiac in one of the girls, the ped gi sent us home with a packet of info about celiac. it included a list of names of mothers that would be willing to let you call them and talk about celiac. since your doc's office doesn't do something like this----maybe you could offer to put together some info for other parents (and for your doc) so that they could get a little more help than your doc has been able to give you. how old is your son?

christine

[Guest nini]

Ore Ida has a huge list of gluten-free potato products, I believe tater tots are top of the list. Cascadian Farms french fries and tater tots are also gluten-free. Ian's makes gluten-free Chicken nuggets and Fish sticks that my daughter LOVES.

I make chicken fingers by getting chicken tenders and dipping them in egg and rolling in instant mashed potato flakes (barbara's) with seasonings added... then baked in the oven in melted butter... YUM! I serve it with bbq sauce, I mix honey and mustard together for a honey mustard sauce, and ketchup. (Heinz is gluten-free)

{{{{{{HUGS}}}}}}}}}}} you will continue to have meltdown moments... but I promise it will get easier.

[taweavmo3]

I think we all remember too well what you are going through right now. Just ask my dh about the several meltdowns I had in the beginning. It got to where he'd have a bottle of wine ready for me if he knew I was trying a new recipe!

I was making things really hard in the beginning....trying to make everything from scratch, buying all the cookbooks, etc. I got so overwhelmed. Then I got some great advice from others on this site, to keep things simple. Plain meat, starch and veggies for dinner...something everyone can eat. I quit trying to make things from scratch, and just bought the mixes. I have three kids under 6, another baby on the way, and I work. I need to keep things simple to save my sanity. I think one of the hardest things about this diet, is the total lack of convenience. Or at least the loss of the convenience I was used too. This diet takes much planning and preparation. As long as you plan ahead, you can have quick and easy meals again. One of my saving graces is Tinkyada pasta that I can throw together with a jar of sauce in a pinch, and Kinnikinnick pizza shells for an exremely easy pizza night. The kids go crazy when I say we are having pizza, they just love it.

Hang in there! You will get the hang of this sooner than you think. We ended up making our house gluten free, it just made things less stressful for me. I figured I had enough to deal with, I didn't want to have to worry about stray crumbs. Then, we progressed to us all going on the diet ourselves (except dh). It's really a much healthier diet anyway. We still have candy, and junk food, since they are kids after all. But compared to the way we used to eat, I think we are all better off! Take care and good luck, you'll be a pro in no time!

[amandasMom]

Hey everyone - We made the almost 2 hour treck yesterday to see the pediatric GI specialist. She definitely concurred that there is no doubt he has celiac disease given his classic symptoms (vomiting, weight loss - 3 lbs in 3 weeks or 12% of his starting weight, pot belly, muscle atrophy/flabby arms and legs, fatigue) and his positive ttg of 208. Just curious - how high were your children's ttg's? All the docs I speak with are shocked at his level of 208. One even said he's never seen it over 150 or so. The GI doc suggested we be absolutely meticulous regarding his gulten at least in the beginning i.e. separate butter, wiping counters before prepping his food and just generally keeping his stuff totaly separate from gluten containing foods. I'm totally good with that! I just want him to start getting better - FAST. He's such a sick little guy right now. I was borderline on a meltdown last night when I realized that we had almost nothing in the house he could eat (after my hubby so lovingly put the steak that we were going to have in a non-gluten-free marinade). I ended up giving Cody a PB&J on tapioca bread...not interested and fed it to the dog ($$$$$!!!!)...EnviroKidz cereal w/Lactid...not interested...gluten-free hot dog...pushed it away. He just wanted the tatertots and chix fingers his sis was having. She was thrilled when I told her to go eat in the livingroom and watch cartoons! LOL I was so frustrated and I couldn't get him to eat anything. The overwhelming nature of getting going on the gluten-free diet also hit me all at once. My hubby was awesome though and kept a level head and took control by grabbing the lists of OK foods that we have and starting a shopping list. He then got me to sit down with the gluten-free cookbook and find a recipe so I can make some gluten-free cupcakes for the bday party we are going to tomorrow. I just hope I can find the flour locally!! Speaking of which - where can you get Xanthan Gum? I also was a little frustrated with the doc because her answer to so many of my questions was "I don't know". I realize there is a lot of I Don't Know surrounding this disease, but some of her I Don't Knows were to questions about meds such as Augmentin (he has an ear infection & has a week left on the med), Children's Motrin and Children's Tylenol. Shouldn't a PEDIATRIC GI specialist who lectures on celiac disease know the answer to at least whether or not a celiac disease kid can have Children's OTC pain relievers?????? I was able to find the answer fairly quickly when I got home, but still. I also asked her about support groups/services and she said to look online. I am definitely going to contact Boston Children's for future care and support.

I know I'm rambling (I have a tendancy to do that when I've got a lot on my mind) and I've got to get some work done!!

Heidi

I am so sorry the doc was so flaky! It's hard enough dealing with this without that!

Here's my recipe for chicken fingers..to add to the list....Dip tenders in ken's Italian dressing (Not the Lite the HiTest only) dredge in gluten-free breadcrumbs and either bake them @ 350 for 20-25 min or pan fry til done. My whole family eats these. The Gluten Free Pantry makes the BEST mix ever for gluten-free Brownies....I can't have them in the house or I'll eat them all. I make them for school bake sales and parties. I am NOT a fan of Bob's red mill cake mixes, they are made from garbanzo bean flour and have an odd aftertaste. Their Bread Mix is really good though. We have all gone gluten free just to make my life easier...I only need to make one set of meals per day instead of 2.

Where in S. New Hampshire are you and what GI outfit did you use? We are near Plaistow....

Good Luck!

Tracey

[KayJay]

Hang in there it gets easier. It may be easier for your whole family to go gluten-free so he will eat what everyone else is eating. Just a thought. But I do remember how I felt when I found out I had celiac disease. It was really hard. I was going to mention some of the same stuff everyone else mentioned I love those pizza shells we have some now. hmm it's lunch time Seriously those are great and smell so good too.

I wanted to add that my family loves Authentic brand gluten-free flour. You can use it just like regular flour and it taste good too. Don't worry he will eat and now you know so he will start to get better before you know it

[taweavmo3]

Just wanted to second that about the Authentic gluten-free Flour blend....I used in one of my old cobbler recipes, and just added 1/4 teaspoon xanthum gum. My family said it actually tasted better than the original. This was the 1st time we'd had cobbler in over a year, so it was truly a celebration! The flour blend is pricey, but I don't see it as being a whole lot more than it would cost to make my own....and the convenience is well worth the little extra I have to pay.

[mrsnj91]

I dont' have much advise for you being new myself but I so felt your frustration! Just wanted to send (((((hugs))))) and glad that you now have an answer.

In regard to the ped. GI... would think they would be able to guide you in this. Seems odd. I haven't been to a GI yet but have spoken to two ped. GIs in an unoffical setting and they were very helpful with support group info and what to do and where to begin.

I put in Celiac Support groups in NJ and got a list. Maybe try that or call your local hospitals to see if maybe they might have some info. There is nothing local to us. We had to travel 45 min ourselves. There is also a support group called R.O.C.K geared to children and families but....*sigh* alas we don't have that either!!!

Well you stick with the people on here...they are all the help you need!!

[TCA]

Just wanted to add that it does get better. Also wanted to warn you to watch for health and beauty products. This was causing a lot of problems for my daughter and I didn't even think about eliminating them. Aveeno, curel, and some shampoos were our big uh-ohs. Kids put everything in their mouths, so this has to be considered too. I also have a list of things that my son will eat on hand for relatives and people who might keep him. I'd be glad to send it if you would like. Just PM me. I'll say a little prayer for you today. We've all been there, but it really does get easier, especially if you go gluten-free for the house.

Also - I found some great frozen chicken fingers, Breadless Coating is the brand. We have them at publix. Don't know if you have one, but they're quick and great. We also live on Ore Ida tots and fries.

Good luck!

[Nic]

HI, my sons numbers were up over 200 as well, I don't remember how high to be exact. But, as it turned out, My Ped. GI explained that not all labs are "experts" in diagnosing Celiac and therefore, the numbers are sometimes too high. My son's blood was then sent to two specialty labs, one in California and one in Boston, who are known among GI's as being reliable. The numbers came back more realistic.

Nicole

[Kailynsmom]

My daughter is now three and has been Gluten free for almost 8 months....our biggest- and most painful- glutening....PLAYDOH! Contains wheat. She still plays with it, but scrubs her hands after wards and does fine...but it took me months to figure out what was making her sick