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Update - Son's Testing :(

kaiess

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kaiess Contributor
kaiess
Posted

Well, we got out bad news yesterday......he has Celiac :(

History: screened for Celiac b/c of Type 1 diabetes, no symptoms at all, TTG came back 95 (normal under20), had a scope, negative but had ulcers, treated ulcers x 6 weeks, had another TTG (6 months after first and 2 months after scope) even higher at 149. Also positive for both genes. Waited another 6 months so retest TTG and it was super high at +222.6 it said. They have scheduled another scope in 2 months but have never seen anyone with that high of a TTG come out negative.

We are so scared of how we're going to cope. I hate/suck at cooking and have zero interest in food. I feel so sad for him. He'll have to start on the diet just before the end of school (and all the year end parties). How will I tell him he can NEVER eat Pizza Hut or his favorite pasta or even McDonald's EVER again (things kids enjoy once in a while)? He is going to be so devastated :(

I guess I now have to bribe my 5 year old to get into lab for her bloodwork (and ours too)......I blame it all on my husband's genes LOL!

Kathy, mom to Jadyn 5, and Jakob, 9, dx Type 1 diabetes Mar 2004, now Celiac

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jmjsmomma Apprentice
jmjsmomma
Posted

I'm so sorry. What a rotten age to be diagnosed. My son is 5 so it was hard to tell him that he couldn't have the "regular" pizzas anymore, but by the time he is older he'll never remember any different. I highly recommend Danna Korn's book "Kids with Celiac Disease", it has some good tips for explaining things to kids of all ages. I was distraught when I got our news and the book saved me! Good luck, it is hard at first but you will look back in a couple of months and realize how far you've come!

Woody6 Newbie
Woody6
Posted

Many hugs your way! I have a Type I & Celiac child (now age 8). It was his Type I that alerted us to Celiac because his Endocrinologist routinely checks for Celiac in all the diabetic patients she has. Before then we never knew Celiac even existed. His older brother was then tested and he too is a Celiac (he will be 11 in June). It finally came to light what had been ailing my son all his life and doctors kept telling me nothing was wrong and it was all in my head. It is probably the same thing that is ailing my oldest son and my grandson as well.

I also found out that is what I''ve been suffering all my life as well.

I know you do not have an official diagnosis at this moment but if it turns out to be Celiac there are many restaurants and chefs all over providing more and more receipes that are totally yummy...Also some slight modifications of home cooked foods you already make and eat can be made gluten free as well.

It is so hard getting children to go gluten free so I understand your plight. The one thing we found recently is that the UNO (Chiacgo style pizza place) has the best gluten free pizza we have tasted to date (IMHO). We also found that Outback Steak House has the most extensive gluten free menu we have seen to date and their "Chocolate Thunder from Down Under" is totally gluten free. I'm sure there are many people here that can give you great advise and encouragement!

Again, many hugs to you and your child and best wishes to you all.

lonewolf Collaborator
lonewolf
Posted

I'm sure it seems like bad news, and it will be tough to get used to the change. Allow yourself to grieve. It's not easy at first, but you will be able to catch on.

I speak as a mother of 4 - two of whom are gluten intolerant (no official diagnosis, but can't tolerate any gluten). Please try to be positive around him. If he hears that it's all horrible and that he's going to be deprived for the rest of his life and starts to focus on all the things he CAN'T have, it's going to be way harder on him.

I hope you'll be able to see that an early diagnosis will possibly save him from years of health problems and pain as an adult. Please try to see this as something that will, in the end, be a "freeing" rather than a hardship.

Some things that my kids like to eat that are gluten-free:

Corn Chex and Rice Chex, Dora The Explorer cereals

Grilled sandwiches on Ener-G Foods Light Tapioca Bread

Spaghetti and meatballs (Tinkyada or Trader Joe's pasta)

Homemade pizza

Hamburgers or hotdogs on gluten-free buns or without buns

Homemade macaroni and cheese

Mexican food! Lots of it! (Some restaurants are safe, some aren't you need to ask)

We make lots of nachos and tacos

Greek food

Garlic Jim's gluten-free Pizza

Wendy's Chili and Baked Potato, Frosty's, Ice cream

Dinner at Outback (from gluten-free menu)

Red Robin burgers on lettuce and fries (always talk to server first about the fries)

Spaghetti Factory gluten-free pasta

There are many more things that your son CAN eat. Betty Crocker is even coming out with a line of gluten-free baking mixes that will make it easier to bake birthday cakes and cupcakes to take for parties.

I don't mean to come across as a Pollyanna, but I just want you to know that it is do-able and that your son will benefit in the long run.

Takala Enthusiast
Takala
Posted

Pizza, easiest.

Take two pure gluten-free corn tortillas and sprinkle bagged gluten-free cheese between them. Put in microwave a few seconds to start to melt the cheese. There is your crust. Spread with tomato paste, sprinkle with oregano and basil, sprinkle more shredded cheese on top. Add gluten-free pepperoni (hormel). Run under the broiler a minute or two to melt the cheese again. Makes one personal pizza.

Pizza, second easiest.

Use pre purchased gluten free bread, as above. Or even a rice cake.(lundberg, not quaker)

You have eventually purchased a bread machine, and have learned to plunk the ingredients into it to make a decent loaf of gluten free bread. You take slices of bread and do the tomato paste, spice, cheese, and pepperoni routine in the toaster oven.

While we are on the pizza, you need a new toaster oven for the gluten free toasts. Sorry.

Pizza, third easiest.

You have mastered the art of quick cast iron pan bread making, and you make a quick gluten free crust in an 8" or 12" cast iron skillet, and then you top it as above with the tomato and cheese routine. And you can get pretty fast at this compared to driving out for take out. You mix the gluten-free flours, egg, olive oil, vinegar, baking soda, and liquid up, put the pan on the stovetop, oil in pan, put the batter in to the heated oil, cook it a bit, and then run the pan under the broiler to finish the top- no yeast necessary, pizza crust in about 10 minutes start to finish.

Pasta. Buy Tinkyada rice pasta. With sauce, nearly indistinguishable from wheat pasta. You can also use rice pasta found in the Thai section of the grocery, in a pinch. Classico makes a lot of gluten-free pasta sauces, and they are good. Problem solved.

Ketchup. Heinz is okay for most of us.

McDonalds. Uh, this isn't really a great loss on the grand scale of the culinary universe, as almost anyone can fry up a hamburger patty and put cheese, mustard, ketchup and a pickle on it and have it taste better. Fry up multiples to store in the fridge, and take them with you.

Potatoes. Put potato in microwave to cook. You can cut them up in advance if you wish. Take cooked potato chunks and either pan fry to brown them in oil, salt them, and there is french fries, or put them in a pan, sprinkle them with olive oil and salt, and run them under the broiler.

I believe ore ida makes some of their tater tot type products gluten free.

Boxed Imagine and Pacific make some soups gluten free, to go with those gluten free sandwiches.

Chile. Fry up some hamburger and onions, sweet peppers, clove of garlic. Drain canned beans, add, throw in canned tomatoes, tomato sauce or puree, and a can of pumpkin puree to thicken it. That's your secret gluten-free ingredient, and it's really good in soup and chile. Add one to two tablespoons of pure chile powder, a small spoon of cumin, some apple cider vinegar and some chipotle smoked Tabasco sauce. Now you can serve this in very many ways, over rice, over chips, over potatoes, with tortillas, over eggs and tortillas with sour cream or plain yogurt, etc. I would suggest you make up a big pot of gluten free something soup or chile like every week, because you can get so many meals out of it.

You probably will enjoy a crockpot. Throw the food in, let it cook itself. Do a search here for "crockpot meals." You have "need crockpot with toaster oven" written all over your post.

This is the only auto immune disease you can actually fix by tweaking the diet, so rejoice. Maybe somebody in your family will discover they enjoy preparing food.

jmjsmomma Apprentice
jmjsmomma
Posted

I also saw from our local GIG chapter that in addition to Rice Chex and Corn Chex, General Mills is reformulating Strawberry, Chocolate, and Honey Nut Chex to be gluten free and on the shelves by June 1st. Yay! General Mills is my hero.

Also, Walmart has new labeling policies. If a Great Value brand product is gluten free, they will list it on the label.

missy'smom Collaborator
missy'smom
Posted

Here are some alternative ideas that are out there.

Some carbs that are gluten-free and kind to the BG's are canned pumpkin, and almond meal. Some with diabetes and other health problems use almond meal as the only "flour" in baked goods. I've made muffins successfully and plan to try crackers and chocolate cupcakes. You can find recipes using almond flour/meal on diabetes, low-carb and Specific Carbohydrate Diet websites. Many of them use only a few, basic ingredients and are simple and quick to mix up. I've seen that you can "bread" chicken chunks or strips in parmesan cheese, using just beaten egg-no flour-to bind the cheese to the chicken. You can make "sandwiches" and burgers with no bun and assemble them on a lettuce leaf or wrap them in a lettuce leaf. I find it freeing as I no longer have to bake bread when I want a sandwich or burger. My son(10) who is not diabetic but gluten-free, actually prefers the burgers with no bun now and all the fixins' and eats it with a fork.

I wish you and your family the best of health and hope that you find solutions that work for you. It can be overwhelming at first but there are MANY choices available to us. The good news with Celiac is that alot of healing can take place and the vili can re-grow.

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