New Celiac 4 Yr Old - How Gluten Free Is Free?

[hbl]

My 4 year old granddaughter was just diagnosed with Celiac. She has no obvious symptoms only the "failure to thrive" - she is very small and very thin but has no other obvious symptoms. The diagnosis was confirmed today via an endoscopic look see.

Being that she appears asymptomatic how can we tell if we are all being careful enough? How do we know that we are really gluten free? If she has something that was on the same counter as bread or crackers will she have a problem?

Our son and daughter-in-law are planning on making there house completely gluten free. Do we need to do the same? We babysit for her at our house once a week and feed her 1 or 2 meals. How careful do we have to be?

If she ingests a very small amount of gluten how long will it take for her to recover?

From what I have quickly noted is that any contact with gluten can be problematic. What does that really mean in everyday life?

Thanks. Your help will be most appreciated.

Hal

[mushroom]

My 4 year old granddaughter was just diagnosed with Celiac. She has no obvious symptoms only the "failure to thrive" - she is very small and very thin but has no other obvious symptoms. The diagnosis was confirmed today via an endoscopic look see.

Being that she appears asymptomatic how can we tell if we are all being careful enough? How do we know that we are really gluten free? If she has something that was on the same counter as bread or crackers will she have a problem?

Our son and daughter-in-law are planning on making there house completely gluten free. Do we need to do the same? We babysit for her at our house once a week and feed her 1 or 2 meals. How careful do we have to be?

If she ingests a very small amount of gluten how long will it take for her to recover?

From what I have quickly noted is that any contact with gluten can be problematic. What does that really mean in everyday life?

Thanks. Your help will be most appreciated.

Hal

You will probably not really appreciate my answer, which is she has to be totally gluten free. You will have to learn along with your son and daughter-in-law what this really means. You will have to prepare her food on scrupulously clean counters and utensils. It is not acceptable to use plastic or wooden ones that are used for gluten, metal is okay. You will have to read every label of every processed food that your granddaughter eats for hidden gluten and you will find it lurking in the most unlikely places. The best and surest way would be to prepare whole foods for her from scratch, and keep some gluten free flour to use for her. Gluten shows up in things like chicken stock, and processed soups, and sauces. It would probably be easiest, at least to start with, for your daughter-in-law to send foods over with her so you can be certain that she is not being harmed until you have mastered the basics of gluten free living. And you will have to make sure she does not have access to gluten-containing pet foods or other products in your house.

[nmlove]

It's great that you are so supportive and want to know how to handle things the right way. Good for you!

I second sticking to basic foods at first. Meat, starch, veggies, fruit. Let your son and DIL provide you with processed snacks. Or at the very least, let them tell you what she likes. My mother-in-law buys everything under the sun just because it says gluten-free. While I know she's trying, this bugs me at times because I don't want my kids just eating junk. Plus, she'll buy stuff we've tried and don't like so it's a waste.

If you question your pans, why not buy a few basic pieces for just gluten-free? Keep everything in a bin to bring out for your granddaughter. Or, clean out an entire cupboard for her. Be sure to wash down your counters, silverware drawer (crumbs lurk here like crazy!), etc before she comes. Keep a different butter, peanut butter, other dipping condiments to avoid cross contamination.

It's overwhelming at first but the more you do it, the more you'll get it. Going gluten-free is pretty basic - at least for me. Cross contamination is the hardest thing to deal with.

To assess her response to the diet, she will eventually start growing. But I would hope she has follow-ups to measure her antibody levels (which can take awhile to go down - like 6 months at least), measure her vitamin levels and check her health.

Good luck!

[lovegrov]

IMO mushroom is making it sound a little too scary. Soups and sauces definitely can contain gluten, but stocks in general are in fact gluten-free.

Yes, you need to be careful, but I don't think you need to make your house completely gluten-free for all time. Scrub those counters and be as gluten-free as possible when the granddaughter is there, but I see no need for you all to go gluten-free.

BTW, failure to thrive IS the main celiac symptom in children.

richard

[seezee]

My parents created a gluten-free cupboard and bought special pans and utensils since they have two celiac grandchildren. My mother tries to always use paper towels to clean up crumbs from regular bread. She has adapted most of everyone's favorite recipes to gluten-free versions like stuffing and apple crisp. She always keeps a supply of gluten-free pasta and cookies in her cupboard in addition to the juice boxes my niece and nephew love. Any time we have a family meal everything at the table is gluten-free. Some things that are really easy to make are corn bread, rice pasta. She made stuffing by having use give her gluten-free bread ends for a month or two before thanksgiving that she froze and then turned into bread crumbs. She does her best to keep most of the gluten out of her kitchen so that when the grandchildren are around it's safe. They still have bread and cereal that has wheat, but they really make an effort to eat it outside their kitchen so they keep it clean for the grand children. There are a number of cookbooks about gluten-free cooking that usually have an introductory chapter on setting up your kitchen and what to look out for. You can search for them on amazon.

[Beth03456]

My 3 yo son was the same way. We have not made our kitchen totally gluten free, and his latest blood test shows he is completely free of gluten. We keep a cabinet with his gluten-free foods and snacks in it. We have special gluten-free containers of cream cheese, butter and peanut butter that we mark are just for him. We have an area of the freezer set aside for his frozen pizza crusts, bagels and cookie dough. We make a loaf of bread once a week. We wash our hands a lot, use paper plates and towels a bit more than we would like to ideally, and use clean knives and cutting boards for almost every sandwich. But it seems to be working and keeping him healthy, which is the most important thing. I try and keep in mind that gluten doesn't jump from one part of the kitchen to another, so I try and separate my preparation areas and wash my hands between them, and just try to be conscience of being safe.

As grandparents, I wouldn't expect you to go to this much effort since you don't have full-time care, but I would keep some favorites on hand, use clean utensils, wash hands and make sure you don't cross-contaminate as much as humanly possible. Our parents keep gluten-free pasta, frozen hot dogs, a couple packs of rice mac n cheese, eggs, fruit and canned vegetables on hand for him.

[CeliacMom2008]

I'm going to do something I very rarely do...disagree with Roger! I would caution you to watch stocks. I was buying the same beef broth (OK, not techinically stock, but close enough) and they started adding wheat to it a few months ago. It was Wal-Mart's store brand. I know it's only one example, but one is enough to make me cautious.

As for your question...she has to be totally gluten free. Our household is almost totally gluten free, which works for us. My parents (who feed my son regularly and our whole family a couple times a week) keep a mixed household, but they are really strict with their gluten practices. When we eat dinner with them, it is always a gluten free meal. We really have had no problems with gluten free living. We eat extremely well and enjoy our food a little too much sometimes! Here are some things my parents do to keep our kiddo safe:

Nonstick pans and stand mixer were purchased after diagnosis and are only used for gluten free items. Old pans were kept for when they cook gluten things (which has turned out to be pretty infrequently - my mom finds it easier to just keep the majority of their life gluten free and just be careful with things like bread, dog treats, etc.).

My son always uses paper towels to dry his hands. This way they didn't have to worry about if they had gotten crumbs on their towels.

When they do prepare things like sandwiches or other gluten containing foods, it is always at the same counter/section of the kitchen. Whether my son is there or not at the time, the counter is cleaned up immediately.

Before preparing any food the gluten free counter is wiped down.

My son's food is NEVER placed directly on the counter. It is always on a plate. We follow this same rule at home just to keep him in the mindset that plates are clean and safe, counters aren't necessarily.

Gluten foods are kept in one cabinet.

My son has a drawer in their fridge that has his butter, cheese, etc. Mom marks everything with his initials so that no one forgets and double dips into his butter when making a sandwich, etc. This way someone would have to open a drawer they don't usually use, pull out a tub of margarine with a letters written on the top, contaminate it, put the marked up lid back on, and then put it back in the special drawer to "accidently" contaminate his margarine, jelly, etc. Obviously that's not going to happen!

But my biggest and best advice to you as a mother, mother-in-law, and grandma - tell your family you really want to help, you really want a healthy granddaughter, and you're willing to learn. Then tell them some of the steps you were thinking of taking and then ask, "Now what else do you think I should do?" And then respect whatever they say. If they say they don't want you to feed her anything they don't give you to give her, respect that.

Especially in the beginning, food can become scary for us parents. We've just been told that we've been poisoning our kids, possibly for years. We're also being overwhelmed with information and we're probably going to make mistakes - perhaps even being way too cautious. But that's OK. We'll get where we need to be eventually.

But ulitmately, we feel solely responsible for our kids' health. Help us out by being supportive, non-judgemental, and doing what we ask.

My parents have been amazing. If I had said don't feed him anything but bananas until I get this figured out I think they would have (OK, they probably would have tried really hard to let me do apples too ).

I still remember the day I broke down crying terribly with my mom about all the things my son wasn't going to experience and how hard feeding him 3 safe meals a day was and how hard it was to balance learning to cook, learning to shop, my regular job, and all the other things I had on my plate. She hugged me for a good while. She said some kind words and then she said, "Now that's enough. You're allowed to cry when you need to, but this is not the end of the world. He's not going to starve. You're not going to go crazy. So just stop." Or something to that affect. Basically it was a "suck it up" and deal with it speech.

Now, 2 years later, we have a great system that we do. One night a week (the night I'm scrambling and don't get home until dinner time), she makes our family a gluten free dinner. At firt it was the basics (meat, veggie, potato, fruit), but now she does all sorts of amazing meals. One day a week she makes us a loaf of bread (in her gluten free mixer and gluten free bread pans). She coordinates that bread day with a night when we'd like fresh bread with dinner (she just drops off for us if it isn't the day we're eating with them) and fresh PB&J the next day (gluten free bread doesn't stay "fresh" very long). For holidays she cooks entirely gluten free meals for our entire extended family or she helps me make food to take with us when it's at other family members' houses. She helps out with groceries because she knows I have to go to 4-5 different stores to get all the things we need, so if she's going to one she calls and asks if she can pick something up for us.

She's been amazing in this journey. And it sounds like you are already on the right track to being that kind of support as well!

(sorry this was so long!!)

[tarnalberry]

I'm going to do something I very rarely do...disagree with Roger! I would caution you to watch stocks. I was buying the same beef broth (OK, not techinically stock, but close enough) and they started adding wheat to it a few months ago. It was Wal-Mart's store brand. I know it's only one example, but one is enough to make me cautious.

Actually, it's an important difference (and useful one when shopping). I've never seen a stock that has gluten, but I have seen a handful of broths that did.

[CeliacMom2008]

OK, that makes sense! One being just meat water and the other being meat water with flavoring! Thanks for pointing that out. Guess now I can keep my record of never disagreeing with Roger!

[tarnalberry]

OK, that makes sense! One being just meat water and the other being meat water with flavoring! Thanks for pointing that out. Guess now I can keep my record of never disagreeing with Roger!

It seems like there shouldn't be a difference. I mean... flavored water vs flavored water?! But, I've found the distinction useful when shopping in places that I am unfamiliar with. (Always reading ingredients, of course. Some of them are definitely produced on shared lines, which I don't worry about, but others do.)

[kareng]

So the grandchild knows what foods she can choose from: Duct tape comes in fun colors like pink & red. I use red to show everyone else not to mess with my jam, etc. You could get her favorite color & put it on the food she can choose to avoid her getting something else when you're not looking.

[mstroud]

I, too, think it's wonderful that you're so concerned about your grandchild and helping keep her healthy! My parents live 3 1/2 hours away so it's a little different from your situation. They bought a new cutting board, toaster, and a pasta strainer (all easy ways to get cross contamination) and only bring them out when we come to town. We do use their metal pots and certain skillets (not the cast iron) without problem. When we get to town, I'll clean a section of the counter and it stays gluten free while we're there.

Maybe you could find one part of your counters that could stay gluten free so you don't have to worry as much about cleaning them all the time. And, I like the suggestion of making one cupboard gluten free ... pots, pans, snacks, etc. There are a lot of gluten-free snacks for children that age which are easy to find (tons of ideas on this forum) and it's pretty simple to make any child's favorite meal gluten free!

It all take a little time to learn what foods are safe and working with your son and DIL it'll all get figured out soon!

Good luck!