Michi8

You're in much the same shoes we are except my dad is at home. Prayers for your family as well.

Thank you, Andrea.

You may find that your kids will do quite well with visiting in your father's home. The surroundings will be more comfortable for them than having to visit in the hospital where there isn't anything to do but listen to all the adults talking (my kids got bored with the visits fairly quickly.)

Michelle

Andrea, I am so sorry your family is going through this difficult time. This is unfortunately a timely email for my family, because my FIL is passing away from brain cancer very soon...it's just a matter of days, maybe weeks.

He went into hospital last week after a seizure, and went downhill very quickly. By the time we visited last weekend, he was barely responsive: couldn't open his eyes, but could still hear and respond with a squeeze of the hand and slight movements. We brought the kids with us, because it is important for them to know what is going on, to communicate with their Grandpa while they can, and to make peace the best they can.

My eldest is 8.5, and really understands what is happening. He originally thought that Grandpa will get better, but he now knows that he will die soon. He wants to spend as much time as he can visiting with Grandpa. My 6.5 yo had a hard time seeing him, and didn't know what to make of it. He didn't want to touch him, because he doesn't look like himself. My youngest, 4 yo daughter, readily gave Grandpa a hug...and Grandpa had a tear roll down his cheek. She sang songs to him too, while he tapped his hand in time. All three kids talked to him about all the things they are up to. We know that it comforts Grandpa to listen, and to know that life is going on for the family just as it should. They all got to tell him they love him. My eldest has expressed a desire to go to the funeral...we will bring all three kids...they need closure too.

We are all going back again tomorrow and for the weekend to visit some more. It's a tough rollercoaster...not knowing a timeline is hard on everyone, especially MIL. We do know he is in no pain (no more headaches) and does not need pain relief. He also seems to be very much at ease. For that we are grateful.

I hope for peace and comfort for your Dad and family.

Hugs,

Michelle

Also - thanks for the support on breastfeeding. Being 21 months - I have gotten some flack from our DR and even the Lactation consultant. The attitude is like "well it's okay to keep going - but she is old enough to stop". And of course she can stop anytime she wants. I have actually fed her on demand since her birth. When everyone else was reporting that their toddlers were only nursing at night or in the morning. Sadie would and still will nurse a couple of times a day on many occasions. Now - I am wondering if she needed it and if she might have had much more trouble with her weight and development if I had weaned her. I guess she knew what was best for her. So we'll keep going for now. And I really appreciate your support because I undertand that many people think it odd to still be nursing a toddler.

I can understand a Dr not understanding all the benefits of extended breastfeeding, because they really aren't taught much about it, but shame on the lacation consultant for not being supportive! No one has the right to make you feel uncomfortable about the breastfeeding relationship between you and your daughter, because it is nobody's business but yours. Even beyond 2 years of age there are health benefits in breastfeeding. I encourage you to keep going as long as it feels like it's the right thing for both you and your daughter.

Michelle

I think the simple answer would be to remove gluten-filled foods from the kitchen so that you are not tempted. Do be aware that cooking a lot with wheat flour puts you at risk of cross contamination. Baking recipes can be altered to be gluten free. Keep gluten free bread & buns in the kitchen for yourself.

How supportive is your family of your need to be gluten free? Can you simply cook gluten free meals for the whole family for dinner? If your family is not willing, then can your teens be responsible for cooking dinner for themselves and your spouse?

Michelle

I have a rice cooker that's specifically for use in the microwave. I haven't cooked rice any other way for years. It takes 15 minutes. The steam overflows though, and I just put a plate with a a few paper towels under it.

I probably got it at either Target or Walmart. It looks like this one Open Original Shared Link

Just FYI...a standard rice cooker doesn't take much longer to cook rice (about 20 minutes is what it takes to make enough rice for a family of five) and it shouldn't steam over (have never had it happen in the 15 years I've used my rice cooker.

Michelle

I use a Sanyo rice cooker. It has an aluminum bowl/pot (no teflon), and a keep warm switch. Super easy, foolproof and makes the best rice. I don't ever cook rice on the stove anymore (well, except for packaged mixes). The bowl and lid can be washed in the dishwasher too.

Michelle

I purchased Dove beautifully clean shampoo and conditioner because they seem to be gluten free. However, whenever I use them my arms and legs itch like crazy. Is there something else in them that may be causing my problem? Can anyone suggest another shampoo & conditioner that's gluten-free?

You could be sensitive to any number of ingredients in the shampoo and/or conditioner. I'd call the manufacturer and see if you can get a replacement product or reimbursement since you are reacting to their product.

Michelle

My questions are these:

Does what the nurse told me on the phone pretty much identify celiac? Is it possible she will have to have a biopsy as well?

Is breastfeeding still ok? I am guessing I will need to cut out gluten if she does. I know many people wean at 1 year old - but she just didn't want to and she still nurses alot.

Our appointment is at the end of this month - in the meantime should I continue with her normal diet. I don't want to do anything to mess up further testing - but I don't want to be hurting her or causing more damage?

Thank you so much for reading this. I know we will be alright if it turns out to be celiac - I am just scared and don't like being in limbo.

Amy

Welcome, Amy!

It is so good that you've found out now that your daughter may have celiac disease. It means that it has been caught early, and just with a dietary change, your daughter will grow up healthy. I would suspect that the GI will want your daughter to continue with the "normal" gluten-filled diet, but why not call their office and confirm?

It's great that you're still breastfeeding! Consider that your daughter has been getting the best possible nutrition through your breastmilk...especially since her body hasn't been digesting and getting all the nutrition it needs through other foods...your breastmilk has been providing many of the necessary nutrients, because it is easy to digest and also provides immune benefits even at this age. Do modify your own diet and keep breastfeeding! It will continue to help, especially as your figure out diagnosis, and make the transition to eliminating gluten from her diet.

Michelle

I like taking leftover plain rice, and simply heating it up with a bit of milk and sugar. Not a full-fledged rice pudding, but tasty anyway. Cinnamon would be good in it too, but raisins in rice pudding is just wrong. LOL!

Michelle

I don't know if anyone mentioned this, but if he's a super taster, the "try what's offered" approach may not work. Just like we don't all see colors the same way (some people are color blind, visual artists can usually resolve significantly more colors, etc.), we don't taste the same foods the same way. Through a number of years (about a decade) my husband and I have explored this one a little - as he is a super taster, and I'm not. There are plenty of things that he *won't* eat. Period. No, not even to try. Because trying them is too horrible to consider, taste-wise. And after hearing him describe the same apple I was eating as a little bitter, and not pleasant, I can see how he would get that, if he's really tasting bitter compounds much more sensitively than I am.

That's a good point, Tiffany. Children especially have a pronounced sense of bitter which diminishes as they get older. If that child is a "super taster" then that sense of bitter may be even stronger. I wouldn't be surprised if that is my son's case, especially since he has such a sensitive, observant and detail-oriented personality (he doesn't like apples either.)

Michelle

Lots of good suggestions already. May I suggest, as well, to experiment with different types of rice. I find basmati rice has a wonderful aroma and taste...much better than standard white rice.

Cabbage rolls (or similar dishes such as Greek dolmades) are good way of using rice too. Although cabbage rolls traditionally use tomato juice or sauce, there are many recipes of wraps with rice that don't use tomato.

Michelle

I was a very picky eater as a child, and I can only imagine how difficult it was for my parents, as it is for you, to have to deal with this. I highly recommend the book "Cheese, Peas & Chocolate Pudding" if you can still find it - I remember it from my childhood, and it was all about a little boy who ONLY ate 3 things: cheese, peas, and chocolate pudding. It's a child's book.

That reminds me of another classic child's book that is on topic: Bread and Jam for Francis. I read it to my daughter just recently (BTW, she's not a picky eater like my middle son, but does sometimes follow his example. ) The book is about a little girl who rejects all food in favour of just bread with jam. Her parents stop offering other foods and only give her bread and jam for every meal and snack...she gets pretty tired of it, and starts wanting to try other foods again.

Michelle

I hope you consider looking for counseling for yourself and your husband before you take a young child to a counselor. Parenting strategies including communicating effectively with your toddler will help you to take back your parental control. A four year old should not command so much attention nor dictate the meals provided. Call me old fashioned, but the child does not rule the house.

I wish you luck and success in this situation. But I believe the problem is not with the child it is with you.

I'm going to call you old fashioned then. It's not about children "ruling" the house. You cannot control any person, and raising children is not about control. You can teach respect, and it needs to be modelled through your own behavior. And to force someone to eat is not respectful of their personal choice.

I believe it is fine to take an approach where a parent's job is to provide a healthy meal, and it is up to the child to eat it. There is nothing wrong with providing a complete meal, with the expectation that a child will try it (whether they choose to or not) and including at least one thing that you know they will eat. It's about compromise and respecting kid's choices as much as you would respect the choices of another adult.

And I think it's rude to tell anyone they've got a "problem" and need counselling, because they don't approach parenting from your perspective.

Michelle

Mich, that is really interesting to me because we have a ton of boys in our family and ALL of them have food issues. My husband ate hardly anything growing up - cereal mostly, because he was so picky. Ryan also has the texture/smell thing too. He doesn't like the way things feel and the way they smell.

I am so torn about what to do. I am thinking that at some meals I will give him more acceptable foods that he likes so he doesn't starve (he will starve himself for a long time, very very stubborn boy), and then other meals offer new things that he might be amenable to. No treats unless he eats something nourishing at all meals, maybe?

I just don't know. I think this is going to have to be one of those trial and error things that most of parenting is anyway!

We don't often have desserts, but I'm not a fan of using desserts/treats as rewards for eating anyway (or as rewards for anything else for that matter!) We are giving the kids multivitamins, so hopefully that helps offset any nutritional imbalances in their meals. It is such a trial and error thing...I'm trying so hard to be neutral about meals...eating food should never be a battle, it's just not worth the stress.

Michelle

True, not all methods work with all kids.

All my kids (except for the one we adopted at 20 months) when straight to table food from breastfeeding. I think a lot of kid's pickiness comes from getting used to a certain texture of food as a baby/toddler. It makes it hard to introduce other foods to them with different textures -- like salad. To get them used to a new texture, maybe put a flavor on the food you know they like (I'm thinking pure maple syrup). They will eat it because they like the flavor and in eating it will learn to like new textures. As they get used to the new food, reduce the amount of "flavoring" you are using until there is none.

My #2 was the difficult child ... he still is exhausting and he's now 16!

The situation really is hard to understand unless you've lived and dealt with it first hand. It's not a matter of him being used to certain textures. First off, going straight to table food would not have worked for him, because of his quick gag reflex...he still gags easily, BTW. Plus, I was doing a careful introduction of foods based on allergy risk because of my family history...it had to be methodical so just giving him what we were eating was not an option.

He's been eating carrots for years now, and you'd think he'd be used to the texture by now, but no he still takes a long time to chew and looks like he dislikes every minute of it. Covering the food with a taste he likes (like syrup or ketchup) will not work for a kid who doesn't want stuff touching each other on the plate. He has a very short list of palatable foods, and we're slowly expanding that list, but it's really tough. I'm not holding out much hope for him ever really enjoying foods. And I've got a strong family history as an example. I am quite adventurous in my choice of foods...love try new things! But my two brothers are as picky as they have ever been...and seem to have developed food intolerances as well (based on their food issues, I think it's possibly celiac as well as allergies)...and I have uncles that are just as selective in their eating habits. Given they have similar sesitivities and academic strengths (math and art) as my son, I can't help but wonder if it's a genetic trait.

Michelle

The way the biopsy is taken can affect the results of the test. AFAIK, you can biopsy when the lesion is inactive, but regardless the sample must be taken from normal skin beside the lesion. Sampling the lesion itself will give a negative result. Just like with other celiac tests, a positive result is always positive, a negative result is inconclusive.

Michelle

Elaine,

We also have a very fussy eater...we haven't had to deal with celiac diagnosis yet, but I know that there are food issues (possibly allergies/intolerances) at play here. I've gotten all sorts of advice about dealing with my son's food issues, but that advice often doesn't work...and really doesn't lessen the frustration about feeding a fussy kid. I guess the best I heard was from a doctor we had in Calgary: respectful neglect. Feed him what he will eat. So what if it isn't a "balanced meal," don't make food a battle, just feed him so he isn't hungry.

So we've tried the respectful neglect thing. It worked for a while, but then we'd get frustrated. Every meal we'll have at least one thing on the table that he will eat. We've also tried the "eat what is in front of you, or go to bed." So he'd go to bed hungry. We've tried the "force him to sit their until he eats." Mealtimes were just unpleasant. He's gotten a tiny bit better and eats a few more foods now (he's almost 7). Sometimes we have to remind him when he likes certain foods. But we have also negotiated that he has to eat a little bit of veggies before he can leave the table. He doesn't have to eat as much as his siblings do, but he needs to eat one carrot, one peice of lettuce/broccoli/peas/cauliflower (whatever is the fresh veggie that dinner.) He still whines about it, but he will eat that one thing.

I find the worst thing about all of this is the judgement from other family and friends. They don't get it at all...they think it's something we've done to make our son fussy. They just don't understand what it is like...especially to go from having one child that eats everything to one who spat up constantly and then would choke on mushy food as a baby...food has always been an issue for my middle child, and probably always will be.

Michelle

There are gluten-free chicken nuggets that I buy at Wild Oats. I'm sure you can experiment with your meatballs and come up with a gluten-free version. I buy Kinnikinnick pizza crusts and my daughter makes pizza with them and rice cheese. It's not the same as regular pizza, and I don't like the rice cheese myself, but she likes it.

I always made my kids eat what was served ... I figured that they would prefer to eat it than to go hungry ... when an hour after a meal they complain about being hungry, put the meal in front of them again -- every time until it's gone (two of my kids have even seen it for breakfast the next day). I was very "mean" but none of my six children are picky eaters! With a large family, it is a necessity to have them eat what I cook.

Carla, you snuck that message in while I was still typing.

There are some kids where making them eat what is served does not work. That would work with my eldest, but not my middle child. He seriously would choose (and has chosen) to go hungry over eating something that he doesn't like. He is affected by taste, smell, texture, sight. He is pretty much sensitive to everything around him. It is partly because of his temperament that we don't have four or more kids...and we had to think long and hard about having number three, because he was so exhausting to care for as a baby!

Michelle

My son takes it daily. Miralax is polyethylene glycol, and is quite benign (it simply pulls water into the bowel.) However, nausea is one of the potential side effects. You may need to play around with the dosage a bit...I recommend talking to your doctor about the side effects you are experiencing.

Michelle

As I recently found out when my son did an elimination diet, dairy is hidden in many, many foods. The list of ingredients to watch for is long. Check out this page for a printable list to take with you to the grocery store:

Open Original Shared Link

Michelle

Pure maple syrup (no preservatives) needs to be refrigerated, but I doubt it would go bad that quickly...I'm sure you'll be fine...I'd refrigerate it from now on. Refrigeration does not thicken it or slow it down (I refrigerate mine and have no problems with it.) It's much thinner than syrups like Aunt Jemima.

Here's what one manufacturer (Maple Grove Farms) says:

How long can maple syrup be stored and used?

Maple Syrup is an all natural product with no preservatives. Unopened containers of pure maple syrup may be left in a cool, dark place for about one year without refrigeration. After opening, the syrup should be refrigerated. Freezing keeps open or unopened containers indefinitely, and the liquid will not solidify. Any harmless mold that forms on the surface of opened syrup may be skimmed off, and the product may be used after reheating on the stove or in the microwave. Place reheated syrup in a fresh, clean container and refrigerate. Glass is recommended as it preserves the color and flavor longer than other containers.

Michelle

I have no experience with using silicone baking tins, but have used the silicone cookie sheet liners and absolutely love them...won't make cookies without them!

I've found a short review of using baking pans here:

Open Original Shared Link

Seems that you need to be wary of heavy batters in something like a loaf pan (bows the shape of the pan), and will want to use a metal pan under muffin tins. Also, apparently baked goods brown differently in silicone than in metal.

Michelle

hmmmm....sounds a little too easy to me. Looks like that would be the wet ingredients in a cookie recipe. I don't see how this could turn out. Sounds like scrambled peanut butter eggs or something..hahah

It should work really well. It's almost the same as the Kraft Peanuter Butter Cookie recipe:

1 PREHEAT oven to 325°F.

2 MIX 1 cup Kraft Smooth Peanut Butter, 1/2 cup sugar and an egg with a large spoon in a medium bowl.

3 ROLL mixture into balls and place on a cookie sheet. Flatten with fork or squish with your fingers.

4 BAKE at 325°F for 20 min. Remove pan from the oven. Let cookies cool in pan for 5 min. to 'set', then transfer to a plate with spatula.

Michelle

I know Frosties, chili and the baked potato are fine.

I'd be leary of the grilled chicken only because they normally put it on a bun and it would be near the buns, thus have a risk of contamination. But I am very sensitive ... others may think it's not a problem.

It's nice to hear the Frostys are safe! I had assumed they had malt in them.

Michelle

I'm so sorry to hear about your friend. If anything, she's got age and strength behind her, so she may do really well.

My FIL was diagnosed with two kinds of brain cancer last May and, unfortunately, is not doing as well as we'd hoped...one cancer (oligodenderoglioma) was stage 4, and the other (gioblastoma) stage 1, but very agressive. We have not given up hope, though, he continues to go through chemo treatment...still has 5 months of treatment to go.

However, in my search for more information I found a a couple of inspirational stories online. One is of a man who has beat the odds and has survived more than 9 years post surgery:

Open Original Shared Link

The other is of a man who has survived about 8 years now:

Open Original Shared Link

There are also some really positive new treatments being discovered/tested now. I hope that your friend has great success with beating this tumor. Support of friends will help a lot.

Michelle

Some ideas for finger food:

puffed rice

puffed millet

mozzarella cheese sticks/cubes

soft cooked carrots sticks

raisins (although with adjusted age these may not be suitable)

banana slices/cubes

Healthy Times has wheat & soy free cookies and teething biscuits, but I don't know if they're actually gluten free.

It's been awhile since my kids were that young...I may come up with other ideas yet.

Michelle