15mo Newly Dx W/ Celiac, Need Advice

[charis4]

Hi,

I'm new to this forum, so I wanted to introduce myself. My 15mo has recently been given a soft dx of celiac. The blood test came back negative and the intestinal biopsy was inconclusive (although it ruled out everything else the ped GI doc thought it might be). As I'm sure all of you are well aware of, the testing isn't very accurate in kids this young. We started him gluten free and he's a totally different kid. Immediately stopped puking, diarrhea got better within a few days, started gaining weight again, lost the sunken look to his face. The plan is to get him back to being healthy on a gluten-free diet, then possibly challeng him with wheat in a few months and see how he does.

My daughter and I have had the blood test (my hubby will be having it done soon), but we haven't gotten the results back. If I test positive, I won't be able to get the biopsy done for quite some time because I'm pregnant, then I'll be breastfeeding, so I'll just start gluten-free as well if positive.

I'm sooooo new to this whole thing. We have a couple of local health food stores that carry gluten-free foods and even one completely gluten-free store, which is really nice. My son is at an age where he's such a picky eater that its just made it even harder to find foods that he can/will eat.

Basically, I'm asking for general advice. Anything you think I should know or wish you'd know when your child go dx, please tell me! Thanks!

-Charis

[gfpaperdoll]

you need to go gluten free today with your child for the sake of your unborn child, & yourself. A negative blood test means nothing. there is no such thing as a SOFT celiac diagnosis, the child very plainly has a gluten problem. When you get your child all healthy, do not try to kill him in a few months by feeding him gluten, which is an utterly ridiculous idea that a lot of people get... This can be very dangerous & cause untold damage in a child that young, damage that might not heal up once you go back to a gluten free diet.

this is not really directed at you because a lof of moms post the same thing, but you know if you take a child that is VERY sick & then they get completely well once you quit feeding them the gluten poison, do you think it could be the gluten or do you think that the good health fairy is visiting your child every night????????????????

also it would be better for your child to eliminate dairy & soy for at least six months. Give 100% juice & water to drink...

I am sure you will get a lot of gentle posts, of advice from the young moms on here, I tend to be rather direct... Welcome to the group, & you will find a lot of useful information on here.

[charis4]

Although I appreciate the time taken for a response, I guess I was hoping for some constructive advice instead of a berating. Does anyone have some advice for how to deal with the day in day out practicalities of dealing with celiac?

Thank you in advance!

-Charis

[gfpaperdoll]

Sorry, I did not mean for it to be a berating, just an informative eye opener. & you might ask more specifically the advice you need for dealing day to day. Is that day to day while trying to get to the office? meals? do you have other children? a husband? do you travel a lot? going on vacation?

have you read the gluten free lists of foods? would you like book suggestions? have you contacted your local support group, you local ROCK group?

[Ridgewalker]

Hi Charis! Congratulations on your pregnancy, and Yay that your son is already doing better!!!

How much do you know about cross contamination issues? Such as-- putting gluten-free bread in a toaster that has been used for regular bread contaminates the gluten-free bread. Swiping a knife onto a piece of regular bread and then sticking it back in a jar of whatever (mayo, peanut butter, etc) contaminates the jar of food. There's more; if need that info, let us know.

Other advice I have is about some specific products that my kids really like: (some of these things may not be age appropriate for one so young as your son, but will be useful later.)

* Mainstream gluten-free cereals that my kids like: Fruity and Berry Pebbles, Cocoa Pebbles, Trix, and Dora the Explorer Cinnamon Stars. Also, Envorikids Gorilla Munch is really good, kind of like Kix or Captain Crunch (those 2 are NOT gluten-free). Pebbles might be tough for him at that age, but the others might be good finger food.

* Tinkyada pasta. By far, our favorite brand of gluten-free pasta. It's harder to overcook, and holds up really well. Taste and texture is normal! Other brands fall apart or turn to mush on me. I use Tinkyada to make all the kids' old favorites- spaghetti, lasagna, ghoulash, casseroles, etc. Just undercook it a little if you're going to bake it.

* Pamela's Pancake and Baking mix is invaluable to me- you can make cookies, muffins, pancakes, etc, all with that mix- and they're all good. I add in chocolate chips or blueberries or bananas to the pancakes. I make a bunch at a time and freeze- then microwave one at a time as needed.

* Van's Waffles are quite good. Check the front of the box to make sure they are gluten-free, as Van's also does wheat waffles. My kids' favorite is the Buckwheat Wild Raspberry and Blueberry. (Buckwheat is gluten-free)

* My kids adore Trix yogurt. It's gluten-free, fun colors and flavors, and is actually real yogurt.

* Not all pancake syrups are gluten-free- actually most aren't. Log Cabin Country Kitchen is safe, and that's what we usually buy. All pure 100% maple syrups are safe.

* Glutino pretzels taste exactly like regular pretzels. UTZ brand chips are gluten-free, as are Lays Staxx.

* Most Hunts tomato products are gluten-free, but there are about 3 or 4 that aren't- check the website. Hunts ketchup is NOT gluten-free. Heinz and Walmart brands of ketchup are gluten-free.

* All Classico sauces are gluten-free, and many types of Del Monte, Ragu, and Prego sauces are safe- but some aren't! Check the websites.

* Chicken nuggets: I make our own homemade now, and got this really simple recipe from someone on this forum--

Mix 1 lb. ground chicken with one egg. Crush up a bowl of safe potato chips- put in ziploc bag and crush with a can or rolling pin until crumbs are as fine as you can get them. Grab a glob of chicken mixture (it'll be mushy) and roll in crushed chips. Put on baking sheet and bake at 400 degrees until chicken is done. I freeze these too, and heat a few in the oven as needed.

Hope this helps! Do as much reading as possible; there's a wealth of good info on this forum. Cross contamination is a constant problem in mixed houses and when eating out. Ask questions, we'll help out!

Does he go to daycare or have a babysitter? If you need some help with day to day stuff like that, let us know his situation and any problems you're having! (((Hugs))) This gets MUCH easier with time. Soon it'll be second nature.

[charis4]

Thank you! That's exactly the kind of advice I was hoping for. I've been wondering about the x-contamination thing. Like could you give french fries that have been fried in the same oil as chicken nuggets?

And I'd love more info on what ingredients have gluten. I only know the basics, anything that says wheat obviously, malt and malt extract, that kind of stuff. I'm sure there are lots of things that have gluten in them, but I'm oblivious to what the "code word" would be. Any help there would be appreciated!

Thanks for all the tips on foods! I'm writing it all down in my little "celiac notebook" that I've started for stuff just like that. Ds doesn't go to daycare, I'm a SAHM, so that helps, but we might put him in a part-time early pre-school when I have the new baby, so that would be another hurdle.

-Charis

BTW- does yogurt normally have gluten in it? What is the ingredient?

[Ridgewalker]

Good instincts on the french fries! You're right, fries that are cooked in the same oil that breaded foods were are contaminated.

Other cross contamination (CC) issues:

* Wooden spoons, cast iron pans, and pizza stones all absorb gluten and it cannot be removed.

* It is nearly impossible to remove gluten from collanders, scratched nonstick pans, pastry brushes. It's best to buy new ones for gluten-free cooking.

* Crumbs hide on countertops, in the cracks on tables, in microwaves, etc. You have to be very strict about cleaning.

* Gluten stays in dishcloths and sponges that you use to wipe up crumbs and wash gluteny dishes. Use a separate clean one for your gluten-free dishes.

* It also stays on your hands. Make sure to wash your hands frequently, especially before fixing gluten-free food. Gluten isn't a germ and can't be killed with hand sanitizer. It must be washed away. We do use Wet Ones wipes when we're out, or in a pinch.

* Think of it in as strict terms as a peanut allergy. Celiacs are just as sensitive to gluten- it just causes a different reaction.

Buying new pans and utensils sounds really expensive, I know. I did it a little at a time. Buy the dedicated toaster first! I keep a kitchen towel over mine to keep out stray crumbs and to keep my husband from using it accidentally.

How old is your daughter? If she's still eating gluten, it'll make it a lot easier on you to allow her to only eat at the table, not everywhere in the house. That way you only have one area to worry about her crumbs. I had to worry about that, too, when only one of my kids were gluten-free. (Now they both are.)

Here's a list of unsafe ingredients: https://www.celiac.com/articles/182/1/Unsaf...ents/Page1.html

On that list, some of the "maybe it's safe, maybe it's not" ingredients are ok for products made in the US. Modified Food Starch is one I know of for sure that you don't have to worry about for American products. The biggest sneaky ingredient I have trouble with is "Natural Flavors." This can be just about anything, including gluten.

Some companies are very upfront about labeling their products accurately. Kraft, for example, will always plainly show gluten on their ingredients lists. Here are the companies that I know of, that are very reliable for labeling their grain ingredients: (That doesn't mean these companies have a ton of gluten-free food- just that they aren't sneaky in their labeling! ConAgra, Kraft, and Unilever are huge companies, so it's good to know about them.)

Arrowhead Mills, Aunt Nelly's, Balance, Baskin Robbins, Ben & Jerry, Bertoli, Betty Crocker, Blue Bunny, Breyers, Campbells, Cascadian Farms, Celestial Seasonings, ConAgra, Country Crock, Edy's, General Mills, Good Humor, Green Giant, Haagen Daz, Hellman's, Hershey, Hormel, Hungry Jack, Jiffy, Knorr, Kozy Shack, Kraft, Lawry's, Libby's, Lipton, Martha White, Maxwell House, McCormick, Nabisco, Nestle, Old El Paso, Ortega, Pillsbury, Popsicle, Post, Progresso, Ragu, Russell Stover, Seneca Foods, Skippy, Smucker, Stokely's, Sunny Delight, T Marzetti, Tyson, Unilever, Wishbone, Yoplait, Zatarain's

I think there are a few yogurts that are gluten-free. I have to admit, I'm not sure which ones aren't, and what unsafe ingredient to look for-- I only buy the Trix yogurt, because they love it and I know it's safe (checked website.) If you have a particular one in mind, I'd try looking at their website first. If you can't find the info, try contacting the company, or of course you can always ask on these forums to see if anyone else has already contacted the company!

[Darn210]

Hello Charis and Welcome to the forum . . .

Here is a link with a great list of companies that label their gluten. That means if you read their label and you do NOT see wheat, rye, barley or oats specifically called out, it won't have it. You don't have to worry about the general "natural flavor" term.

Open Original Shared Link

[Ridgewalker]

Just saw this thread about yogurt- I missed it earlier!

Open Original Shared Link

[happygirl]

I wanted to welcome you to the board!

I hope that others will share more constructive advice.

If you are looking for a good pasta replacement, check out Tinkyada pastas. Its a rice based pasta and is the best out there!

Wheat is required by law to be listed by ALL companies. Use the list posted above about companies not hiding gluten, and you'll be good to go! You won't have to worry about "code" words then---it'll be listed clearly as wheat, rye, barley, malt, or oats. Always turn over the product to the back to see if they are owned by one of the big companies listed.

Can't eat fries that were fried in the same oil....

Hope the other responses were a help . Let us know what else you need....(i.e., specific replacement for X, etc.) Please make yourself at home!

[momof2sn]

I wanted to welcome you to the board!

I hope that others will share more constructive advice.

If you are looking for a good pasta replacement, check out Tinkyada pastas. Its a rice based pasta and is the best out there!

Wheat is required by law to be listed by ALL companies. Use the list posted above about companies not hiding gluten, and you'll be good to go! You won't have to worry about "code" words then---it'll be listed clearly as wheat, rye, barley, malt, or oats. Always turn over the product to the back to see if they are owned by one of the big companies listed.

Can't eat fries that were fried in the same oil....

Hope the other responses were a help . Let us know what else you need....(i.e., specific replacement for X, etc.) Please make yourself at home!

Hi Charis,

Welcome to the board!! I just want to encourage you and say that YOU CAN DO IT!!! This is one of the most overwhelming things at the beginning, but everyone here is awesome. My daughter was DX in May of this year. I remember just spending hours on this forum and asking and reading.

Take the advice... everyone here has been in your shoes and the food recommendations are awesome. You can spend hours in the health food store and not know what to buy, or spend your money on something they absolutely will not eat.

It will become second nature even though you feel that it won't for you. I have recently switched my non celiac son over too.... He has always had severe asthma, along with other health problems too. The changes are amazing for him too. I never thought that he would "go" for the diet, but he is doing great. I swear he is the pickiest eater ever and now he is doing it. He is on the autistic spectrum, so that limits what he will eat even more. Good luck and keep reading and asking!!

A few things my kids love are Ener G Tapioca Loaf, Ener G wheat free crackers (taste like saltines) you can really do alot with these, Kinnikinnick Tapioca rice bagels and english muffins, you can do alot with these too. For a quick pizza I cut up the english muffins, top with favorites and pop in the toaster oven. My kids also love the Glutino gluten-free crackers, much like a ritz. Another must have is Jo-Sef Graham crackers(I can only order these on the web) Kids love these too!!!Check out Wal-Mart alot of their foods are marked gluten-free and they have the only boxed mashed potatoes and augratin and scalloped potatoes marked gluten-free too. These make for quick sides some nights!!!

Best of luck!!! Shealey

I forgot to add that you will NOT want to add gluten later. My daughter has been accidentally glutened twice (eating out) It is one of the most horrible experiences and the guilt is aweful. You will not be able to do this on purpose to your child!! Watching them vomit, spiking fever and the crying is just terrible!! Keep him gluten-free to keep him healthy.

[Darn210]

I'm sooooo new to this whole thing. We have a couple of local health food stores that carry gluten-free foods and even one completely gluten-free store, which is really nice. My son is at an age where he's such a picky eater that its just made it even harder to find foods that he can/will eat.

Actually, you may find he will start eating more things once he figures out that food doesn't hurt anymore.

Just about any gluten food has a decent gluten-free alternative so if there is something he really liked before, let us know and we will help you find the replacement. I find that bread is the toughest but since he is so young, he may not have really developed a taste for it yet. All fruits and veggies are naturally gluten free so he can eat as many of those that you can actually get him to eat

There are gluten free pretzels and gluten-free cereals (including cheerio-type and chex type). I have not checked into any prepackaged toddler type foods but I bet some of those are made gluten-free just because wheat is a top 8 allergen. Maybe somebody with toddlers can tell you what a company like Gerber's has to offer.

[mommida]

Danna Korn's book, Kids With Celiac Disease, has a lot of broad spectrum advice of the things you will encounter. Sound advice on "dealing with it and not dwelling on it".

I will tell you to have some gluten free food with you at all times. Your child will be offered treats in many places. i.e. a sucker at the bank offered for good behaviour or just because he's cute. You look at the sucker and have no %^* clue where it was made or what the ingredients are. Time to get the trusted gluten free snack bag and let your child pick his safe treat. It would seem like punishment not to get little treats like that because of celiac disease. You will no doubt want to load that bag with healthy stuff, but consider the fairness of an exact trade ~candy for candy.

If you have a palm pilot or print out a quick basic overview of celiac disease, safe food list, gluten free medication list ~ this list is for emergency visits to the ER or urgent care, when you are dealing with a doctor that doesn't have a clue about celiac disease. Same with pharmacists. Or you can use this list for your babysitter to have on hand too.

Our experience with the gluten challenge for more testing to confirm celiac disease diagnoses ended up with my daughter being hospitalized with dehydration and infection (when she was 17 months). A gluten challenge is dangerous and you have to decide if the benefit of "full / classic" diagnoses out weighs that risk.

This group will be here to help you find more information as you need it. Welcome to the board!

L.

[charis4]

Again, thanks for all the helpful information! I've ordered the Kids with Celiac book from Amazon, along with some others, I can't wait til they get here.

The reason why the ped GI doc is recommending doing a gluten challenge once we get him healthy is because there has been several horrible GI illnesses that have been getting kids sick all over town and he thinks that Jack may have had several GI illnesses in a row and needed to be taken off of gluten to allow his small intestine to heal and that's why he's getting better without the gluten. We won't do the challenge if any of the rest of us come back positive, since that increases the likelihood of Jack actually having celiac as well.

It'll be interesting to see who, if any of us, test positive with the blood test as well. My husband has some distant (like great uncles and such) relatives who had celiac but autoimmune diseases run on my mom's side of my family, although not celiac in particular. My daughter (13yo) is actually my step daughter, so she potentially only shares 1/2 the genes with Jack. I'm hoping to get the results back today.

Thanks for all the great info, I'm sure I'll be on here a lot with a lot more specific questions.

-Charis

[shan]

Hi, my 12 month old is on precautionary gluten free diet (everything negative just not gaining, but not gaining without gluten either, so it seems to be a waste of time ) The things i found very hard, was making sure there was not a crumb of gluten anywhere that he could reach, coz his tiny fingers can pick up even tinier crumbs At least his sister is also gluten free, so if she ever gives him to eat, when i don't see (like a lick from her ice lolly) i know its ok for him!

Good luck and keep us posted!

[charis4]

We got our blood test results today and it looks like my daughter and I are testing negative, which is good not only for us, but it doesn't increase the risk that Jack actually has celiac. It doesn't mean he doesn't have it, but less statistically likely than if we had it also.

Again, thanks for all the advice!

-Morgan

[Darn210]

Again, thanks for all the helpful information! I've ordered the Kids with Celiac book from Amazon, along with some others, I can't wait til they get here.

The reason why the ped GI doc is recommending doing a gluten challenge once we get him healthy is because there has been several horrible GI illnesses that have been getting kids sick all over town and he thinks that Jack may have had several GI illnesses in a row and needed to be taken off of gluten to allow his small intestine to heal and that's why he's getting better without the gluten. We won't do the challenge if any of the rest of us come back positive, since that increases the likelihood of Jack actually having celiac as well.

It'll be interesting to see who, if any of us, test positive with the blood test as well. My husband has some distant (like great uncles and such) relatives who had celiac but autoimmune diseases run on my mom's side of my family, although not celiac in particular. My daughter (13yo) is actually my step daughter, so she potentially only shares 1/2 the genes with Jack. I'm hoping to get the results back today.

Thanks for all the great info, I'm sure I'll be on here a lot with a lot more specific questions.

-Charis

Please do keep us posted . . . my situation actually started out similar to yours. My daughter's symptom was acid reflux. The did an endoscopy looking for Esonophilic Esophagitis (sp?). They took a blood test at the same time and screened her for Celiac. Everyone was surprised that the blood test came back positive. She had the stomach flu four days before the blood test/endoscopy. The second opinion doc decided that she should have a gluten challenge. The primary doc decided that might not be a bad idea if nobody else in the family screened (blood tested) for Celiac . . . however, my son came back as DQ2 positive and positive on one blood test and negative on another. He has no symptoms but is small so he is on a trial gluten-free diet for six months. Its been about 2 months but we haven't seen anything yet. Oh, and by the way, my daughter still has acid reflux and is now headed to allergy testing . . . our 6 month follow-up blood test showed she/we are doing a fine job following the diet. The primary doc was surprised the reflux didn't go away.

I want to pass on something from the second opinion doc. He said when he does a gluten challenge, they normally have you back on a gluten diet for 2 months and then check the blood again. If the blood is positive, then it's back to gluten-free. HOWEVER (and this is what I wanted to tell you), if at anytime during the two months, any symptoms come back, then the challenge is done and the diagnosis is Celiac. You do NOT have to complete two months of a gluten diet.

Good Luck.

[ShayBraMom]

Hello and welcome to this board! Everybody is great here and very helpful, just by reading the posts of others you'll find som many answers and information! Wow, I would love to have a gluten free store here! Heuy,. in the sotre here they offer a shoppingguide for over 20.000 store brand prdoducts, you save time checking things in the store. Just look up what you need, Cereal for example and it'll givbe you a list of them which one you can get that are gluten free just not labeled, ect.~ Gluten free products that are labeled as such are sooooooo expensive, the shoppingguide certailny helps out a lot I think!

https://www.celiac.com/catalog/product_info...products_id=802

[charis4]

Oh wow, I'm definately going to get that shopping guide! I'm sure you'd want to double check things because companies change recipes and stuff, but at least you wouldn't be reading the labels on EVERY SINGLE THING on the grocery store shelf. What a great find!

-Charis