New To Gluten Free

[Lovemykids34]

My 3 and a half year old daughter was just preliminarily diagnosed with Celiac Disease. She has classic symptoms and her blood tests were positive. We go for the endoscope this week. Does anyone have any helpful tips on raising a child gluten free? My heart is breaking for her. I would love to have some feed back from anyone who has experienced this. Thanks!

[Lisa]

My 3 and a half year old daughter was just preliminarily diagnosed with Celiac Disease. She has classic symptoms and her blood tests were positive. We go for the endoscope this week. Does anyone have any helpful tips on raising a child gluten free? My heart is breaking for her. I would love to have some feed back from anyone who has experienced this. Thanks!

Welcome! We have lots of parents with children with Celiac. It IS a road that can be successfully traveled. But, be comforted in the diagnosis....no drugs, no surgery. It just a change in diet.

..they will respond soon.

[Mizzo]

It takes time to figure it all out. It is a constant learning experience. The really good news is product labeling is getting better and easier to make decisions with.

The fact that the products you have to really worry about are processed foods makes it easy to start to whole, natural foods and build on top of that.

Someone once suggested that you go completely processed food free for a month , then add in slowly things like gluten-free bread, muffins , crackers etc. This way you have sort of cleansed your palate of what it used to taste like because there is a texture difference. I think it's a great idea. If thats too extreme you can always keep things like gluten-free pretzels, Tostito chips, rice cakes for that crunchy, salty/sweet need.

[researchmomma]

My neighbor's son was diagnosed at 18 months. Because he was so young, he doesn't "miss" things like the process foods that my 12 year old daughter miss. So that is one positive. I know your heart breaks for her but it will be OK. There is an adjustment period for this and we are watching a friend go through it right now. You will slowly figure out ways to be prepared for birthday parties, etc. And We can help.

There are lots of good posts here. Use the search bar to find topics on dealing with Pre-school snacks and playdough, for example.

Welcome to the Board and let everyone know what your questions are. We will help us much as we can.

[StephanieL]

My son had the biopsy at 3 but his was "inconclusive" (more recently negative by Dr. Fasano) HOWEVER... we went gluten-free for him at 3 1/2. With his TTG levels and how fast they fell after 6 months gluten-free, I am sure there was just not a lot of damage and/or they didn't get a patch where it was.

Honestly it is challenging but if gluten is the only thing you have to avoid, there are still tons of options Because of the limits we have in addition to gluten, we cook whole foods most of the time. I do a lot of batch cooing and freezing.

For school, there are some challenges. Play-doh is OUT! Art class can have some pitfalls with paste for paper mach

[mommyto2kids]

At that age you will have to lead by example. She will need to see your family eat it. Dinner should be easy to fix that way. If you need ideas, lots of people are here to help.

[StephanieL]

At that age you will have to lead by example. She will need to see your family eat it. Dinner should be easy to fix that way. If you need ideas, lots of people are here to help.

Different families deal differently. We do NOT have an entirely gluten-free home (or allergy free for that matter). I do tend to make dinners friendly for everyone but there are nights that doesn't happen. My thing is, in the "real world" that he is going to have to deal with differences in his food so he needs to learn how to deal with those. There is the other side who feel that the home should be entirely "safe" of problem foods. Again, you need to decide what is right for your family!

(If you do have a combined home you want to be sure there is a separate toaster and any pots/pans that are scratched would need to be replaced if they are non-stick).

[suziq0805]

I have an almost 2 year old that is gluten-free for now. At first I felt bad for him (and now me too since I'm gluten-free also), but after awhile I realized it could be so much worse. This is a disease that's not curable, but at the same time there's not drugs to be on the rest of his life or no needed surgery. And because of this diet change my family is eating healthier- less processed foods and we've discovered new veggies that we like.

Some suggestions- Welch's fruit snacks are gluten free and easy to throw in my purse to make sure I always have a snack on hand when we're out. If she goes to daycare/preschool I would sit down and discuss it with her teachers and discuss how important it is that she not eat food that hasn't been approved by you. Always keep some treats at school for her in case of an unexpected party or anything. Also go through the art supplies and let them know which supplies are ok and which are not.

Have you and the rest of your family been tested? Celiac is genetic and others may have it also.

[Takala]

1. Plan ahead for meals AND snacks. If there is enough gluten free yummy options around, "cheating" isn't an issue if nutritional needs and emotional needs are being met. Keep in mind some vitamin/mineral deficiencies, in the beginning, can cause cravings for carbohydrates and sugars.

2. Buy some lunchbox type containers such as a small picnic sized cooler lunchbox or a insulated carry-pack with freezable thermal pockets, and make sure that when she leaves the house, it goes with her. You may end up also keeping a permanent carry- pack on your kitchen counter, and then re filling it daily with gluten free stock items, and that then goes in the car, all the time, on any trips. Never assume you will be able to find suitable gluten free food when you really need it. Once you get the routine down, this is not difficult and seems normal and reassuring.

3. All of you (the grownups), be aware that if she still sucks on her fingers or absentmindedly puts them in her mouth (what little kid doesn't ) that her baby lotions, conditioners, sunblocks, soaps, etc need to be gluten free. And if you eat gluten, wipe your lips before kissing her face, please. Also, all over the counter medications and vitamins like ibuprofen, cough syrup, anti histamines, etc, need to be gluten free.

4. If you have indoor pets, you will likely want to get them on a gluten free pet food, especially if they wake you up by licking you, jump on the bed, or if they drool a lot. The objective here is to minimize the possibility of cross contamination from all sources. If you are thinking, OMG you have got to be kidding, no, uhm, yeah, seriously. Beware that some pet food labels will say gluten free, but contain oats or barley and can also be cross contaminated if it is regular oats. ( We have a very sensitive, very large wheat- allergic dog, and I have to be pretty hyper vigilant about not making him sick, too. )

5. For social occasions, bake and take. When you make or buy gluten free cupcakes, freeze some for the next time they are needed. gluten-free Pizza can also be frozen in individual servings for this purpose. Don't be afraid to take a a gluten free item to a potluck, if it is good, but be sure to take your servings packed separately, or get your daughter's out first, because the first thing somebody is going to do is cross contaminate it. Badly. They will even do this unwittingly if they know you are gluten free. Because they are not used to it.

6. Some relatives are a p.i.a. about food. This is normal. Come to the board and vent, we can be very creative with the comeback lines for the really amazingly bad things people might say to you, especially the things that make one wonder - " how could this person be a blood relative ? "

7. All purpose generic excuses for not eating food that is offered to her are acceptable, even if they are not 100% true. "Really, eat this, it is gluten free" is a common remark, followed by "I picked off the croutons" (see #6 above...) and teach her how to gracefully decline if the status of the gluten free item is in question. When in doubt, invent another allergy to one of the ingredients. "oh, does this have xxx... sorry, can't have that." Yes, I know that this is an auto immune reaction, but people are more scared of causing an allergic attack. There are so many kids these days with food allergies, the incidence of which is increasing, that having an allergy or an intolerance to SOMETHING is not really that unusual anymore, and this can work to your advantage.

8. If you end up needing a lot of gluten free bread, and think that the commercial brands are too much $, you may want to learn to bake gluten free, then get a bread machine for it. You can test most recipes out in single cup sizes in the microwave, to see how it tastes as a quick bread. There are some people who are "supertasters" because they have more taste buds, and they will balk at some of the gluten free flours, others of us are happily nearly oblivious, and will eat nearly anything.

9. Food labels - it is possible to buy a regular item from a good company, that is actually gluten free, but it is not emblazoned with it in giant letters, but your found this out from researching it. And this item is okay to eat. It is also possible to buy a special gluten free item from a gluten free manufacturer, prominently displayed, and it turns out the thing was run on shared lines and is a real disaster. Keep this in mind during mystery flare ups.

[stanleymonkey]

you'll need to teach het to be an advocate for herself, my daughter who has just turned 3 will refuse food politely from people, we want her yo learn now so when she is older its just part of life and not a big deal

[Cara in Boston]

My son was diagnosed at age 5. Suddenly I was acutely aware of how many people are (seemingly) constantly offering him food. It happened everywhere we went. He is a smart boy, but shy so he would just shake his head or say "no thank you." But then they would PERSIST. Adults! "C'mom, its ok, have this cookie, I've never met a kid who says no to a cookie . . ." on and on. Now he says, "no thank you, I have food allergies" (it is much easier than trying to explain what celiac disease is or even what gluten is.) At first he had a rubber bracelet that said "gluten free" on it and he could just point to it if he was feeling shy. He doesn't need it anymore.

We learned a lesson last summer at tennis camp. I talked to the director, she assured me she knew all about celiac disease (I had a roommate with it . . . blah, blah) I talked to her on several occasions and she always kind of blew me off. I wasn't that concerned because it was a tennis clinic where we picked them up before lunch - so no food was involved. However, on some random Friday, another parent brought in a box of graham crackers to share with the group. My son spoke up and said he couldn't have them because he couldn't have gluten. The director read the ingredients and couldn't find the word "gluten" listed so she told him they were safe. He ate them and got very sick and missed a week of his summer vacation. Now he can check the labels himself (almost 7) but we also made a rule that he can only eat the foods that mom or dad have checked and that we know are safe. Sometimes his brother can do the checking (age 9).

Same goes for asking at the deli counter if something is gluten free. Do not believe the person unless you have read the manufacturers label yourself. Sometimes they have a product list behind the counter. If I don't see it myself, I don't believe it. I don't trust anyone else to take the care necessary to keep my child safe. I am always surprised how often we are the first person to ask someone (in an ice cream shop or deli or somewhere) about gluten. Most often they are confused (glucose? is that sugar?) so even if they have received "allergen training" I still check for myself.

Sometimes I go in without my son and check everything out so that when we go together, we can just order like normal people. He doesn't like to be the center of attention.

Cara

[Cara in Boston]

One more thing:

Invest in a good travel food container - we bought a pair of Ms. Bento food kits (zojurushi?) one for me and one for my son. They can easily hold an entire meal (enough for two!) and keep food hot and cold for several hours. Our extended family has lots of gatherings so now I bring our own food to eat and a dish to share. We packed our own Thanksgiving dinner (the same foods everyone else was having, but gluten-free) and it was so much easier than worrying about cross-contamination. The kit was expensive but this will be how we eat at other people's houses for many, many years so it was an investment. We bought it on line at Amazon.