Dd Probably Has Celiac Disease; Have Questions

[ptkds]

Hello everyone, I am new to this board. I found out today that my dd#3 (almost 16 months old) most likely has celiac disease. She had bloodwork done to check for it. We are going to the Ped. GI dr in about 2 wks. She has diarrhea most of the time and her tummy seems to get bloated. She also seems to have tummy aches sometimes. At first, I thought it was just a lactose intolerance problem, but completley cutting out lactose didn't help.

So my ped wants me to put her on the gluten-free diet right now, but I read that a person has to be on gluten to get an accurate result. So should I take her off gluten or just keep her like she is now until we get the final diagnosis from the GI? Also, I have been looking for a list of ingredients to check for when I go shopping. I know how some ingredients go by different names so that is what I need to know. I did find out that this tiny town I live in actually has a store that sells gluten-free items, so I will probably go check them out tomorrow.

I am so lost on this. I don't know what to do, so if anyone can help me and guide me in the right direction to find the info I need, I would REALLY appreciate it.

Thanks,

ptkds

[Guhlia]

If you're testing her, she needs to remain on gluten until the testing is completed. Please keep in mind that at that age her tests are likely to be negative, even if she does have Celiac. False negatives are very common in children on both the blood tests and on the biopsies. You may be interested in Enterolab (www.Enterolab.com). They seem to be more accurate in young children than bloodwork and biopsy. The woman I spoke to at Enterolab said there's still a chance for a false negative, but it's less likely than it is with the bloodwork.

You may want to just try going gluten free after her testing is complete. Dietary response is the best diagnostic tool of all. If she feels better off of gluten, then obviously that was the problem.

[Guest nini]

I completely agree with Guhlia's post... keep her on gluten until you are done with all testing, but even if the results are negative, you should still try the diet after the testing is done and see if her symptoms improve. My daughter was 3 when we had her tested, her tests were negative, but once we put her on the gluten-free diet, we never went back... my daughter is most definitely gluten intolerant and always will be.

[Izak's Mom]

Also, I have been looking for a list of ingredients to check for when I go shopping. I know how some ingredients go by different names so that is what I need to know. I did find out that this tiny town I live in actually has a store that sells gluten-free items, so I will probably go check them out tomorrow.

Hi - and welcome!

So, the yucky answer first: Here's a list of things to be suspicious of when you read food labels:

Cereal Binding

Edible Starch

Filler Hydrolyzed Plant Protein

***

Artificial Color

Artificial Flavoring

Caramel Color

Coloring

Flavoring

Food Starch

Maltodextrin

Modified Food Starch

Modified Starch

Mono and Diglycerides

Monosodium Glutimate (MSG)

Mustard Powder

Natural Flavoring

Smoke Flavoring

Starch

Anything after the *** though, may not necessarily be bad - like malt flavoring can come from corn instead of barley, so you have to call the manufacturer to find out. But the good news is, a lot of that legwork has been done on this board - you may want to check around in the recipe section. I know there are lists somewhere of 'OK' brands to buy.

Now, the 'whew' answer: Lots of 'regular' food is gluten-free. I have a gluten-free 14-month old, and here's a partial list of some of the things he eats:

>Any kind of vegetable, but he especially likes potatoes (mashed with garlic, butter & olive oil, or fried, or any way!), green beans, red peppers, lima beans (I love them too!), edamame (whole soy beans, they look kinda like lima beans & I serve them steamed with a bit of wheat-free soy sauce), and golden beets (sauteed in olive oil with a teeny sprinkle of sugar, salt, balsamic vinegar & olive oil.

> Bananas. This kid must have been a monkey in a previous life. He'd eat 10 a day if I let him. As it is, we have a 3-a-day limit. Fruit in general is gluten-free - he also love strawberries, blueberries, raw or slightly cooked apple (or applesauce) and pears. He loves peaches & grapes, but I really have to be strict about those ones cause they seem to give him loose acidic poop that ends up with a rashy butt for a day or two. Usually just skip 'em altogether and occasionally cut a bit of peach or grape juice with a whole cup of water for a treat.

> Eggs, although he's not so into them these days. But used to love scrambled eggs, sometimes with cheese. Fried egg sandwich too, on gluten-free bread. His favorite though - french toast. We buy brown rice bread, which is quasi-ick eaten plain, OK toasted, and great for french toast - with cinnamon sugar and maple syrup. LOVES french toast. Sometimes it's breakfast and lunch - one with syrup, one with jam.

> String cheese, although I feel like he may have an emerging dairy allergy so we're not so into these days. But when he was doing dairy, mozzerella string cheese, shredded cheese - cheddar or plain slice american were his faves. Plus he LOVES yogurt, especially the yo-baby yogurt drinks. Banana flavor, of course. But he'd eat any yogurt.

> Meat - especially lamb and beef. I'm half Italian, so meatballs are in my blood (and his!). I prefer lamb-balls though - and I leave out a couple pieces of the gluten-free brown rice bread to make breadcrumbs with (SO easy - just stick 'em in a Cuisinart or chopper-thingie with some salt, pepper, thyme, basil, oregano, onion powder, whatever else you like for 'flavored' bread crumbs); make the balls with breadcrumbs, parmesan, chopped parsley, and egg, and chopped garlic. He inhales these - and you can serve them with...

> RICE pasta! Much more common than you'd think. Most people on here would say that the Tinkyada brand is the best, but I've had great luck with all kinds of brands, and actually love a Quinoa-Corn brand. Your local major supermarket should have some kind of rice or non-wheat pasta. But also, the great thing about living in the 'computer age' is that everything is available online. If you can salivate over it, you can buy it from the privacy and ease of your own home computer.

> Snacks - a must for any toddler. We love the Enviro-kids gluten-free rice krispie bars - berry and peanut butter flavor (they have chocolate too, but I'm not so into giving my 14 month old chocolate), Robert's American Gourmet Pirate Booty and Veggie Booty (Izak LOVES veggie booty, he'll eat it over the regular stuff any day), Veggie Chips (like potato chips, but made from veggies), Baby Mum-Mums (a rice-rusk snackie thing I found at our local Price Chopper supermarket)

>Also - these are a godsend - Van's wf/gluten-free waffles. We love the apple-cinnamon flavor. Seriously, I buy them 5 boxes at a time when they're on sale.

...

I'm sure I'm leaving out a ton of stuff, but I'll spare you the novel. The bottom line is, yes, it's harder than it was, but it's not as hard as you think to maintain a gluten-free diet. And 'hard' isn't even the right word - it's just not as convenient to buy pre-made or pre-packaged foods, especially if you live in a small town. But it's not impossible, and there are plenty of things your child will like to eat that are good for her. Oh - Amy's brand is fantastic - there's a bunch of gluten-free things, but we like the gluten-free macaroni & cheese and lasagna. And if you come across the Ian's gluten-free chicken nuggets, skip them - completely bland and gross. Whatever you can make at home with your own cut up chicken strips at home will be 1000% times better.

Search around on the internet for fast food restaurants that have gluten-free choices, if that's something you typically have.

At any rate, good luck with everything and again, you've found the right place! There is a wealth of information on this site.

-E

[shayesmom]

Hello everyone, I am new to this board. I found out today that my dd#3 (almost 16 months old) most likely has celiac disease. She had bloodwork done to check for it. We are going to the Ped. GI dr in about 2 wks. She has diarrhea most of the time and her tummy seems to get bloated. She also seems to have tummy aches sometimes. At first, I thought it was just a lactose intolerance problem, but completley cutting out lactose didn't help.

So my ped wants me to put her on the gluten-free diet right now, but I read that a person has to be on gluten to get an accurate result. So should I take her off gluten or just keep her like she is now until we get the final diagnosis from the GI? Also, I have been looking for a list of ingredients to check for when I go shopping. I know how some ingredients go by different names so that is what I need to know. I did find out that this tiny town I live in actually has a store that sells gluten-free items, so I will probably go check them out tomorrow.

I am so lost on this. I don't know what to do, so if anyone can help me and guide me in the right direction to find the info I need, I would REALLY appreciate it.

Thanks,

ptkds

There is a list of ingredients to avoid on this site. And there is also always a one-page gluten-free diet "start-up list" in every issue of Living Without magazine. The Delphi Forums also have extensive lists for safe products which are updated continually. That should help get you through the initial phases of finding the right foods.

Also on this site is a section which addresses the issue of cross-contamination. With 3 other children and the adults in the family not being gluten-free, you will have to decide on how you want to deal with cross-contamination issues while cooking. Your dd will need her own toaster for breads (or a cookie sheet that you can broil the bread on in the oven). You will also have to use separate cutting boards, pots, pans, wood spoons, condiments, etc.. You also have to be sure to wipe down counters thoroughly prior to placing dd's foods or utensils on it so cross-contamination doesn't happen. It is also important to wash your hands thoroughly with gluten-free soap prior to working with your dd's food.

With all that being said, there are plenty of naturally gluten-free meals that you can prepare that can feed the whole family and not cost an arm and a leg. There are only 3 of us here, but cross-contamination was definitely an issue and so now we've made the house a gluten-free zone. But each family dynamic is different. So that is something you can decide for yourself.

You may also want to give your pedi a head's up and explain to him/her that when a biopsy is scheduled to confirm Celiac...it is inappropriate to start a gluten-free diet before it. There is a lot of confusion in the medical field when it comes to this disorder and you will find that at some point, you will have to educate the MDs. There's a big difference between diagnosing a disorder and living with one day in/day out. The more we work on educating our doctors, the safer it is for everyone else in the process of being diagnosed.

[TCA]

My sig line has a link to a discussion on how to get started that I began a while back. that might be useful to you.

My son had 2 negative biopsies and inconclusive bloodwork before we just tried the diet. The change in him was amazing. You have to make your own choice about testing, but for us it was all for naught. The diet was all we needed as proof. good luck!

[ptkds]

I just wanted to thank everyone for all the wonderful advice! I have been all over the internet trying to learn about this diet. I am gonna wiat until after I talk to the GI dr to start her on the diet. In my tiny town, we only have a little health food store, and thier prices are about double of what I have seen on the internet. So I will probably be doing all my shopping on the internet.

Again, thanks so much! Any more advice is welcome! I am lost, and dh is scared now!

Thanks,

ptkds

[key]

Just thought I would add that my son had negative blood work and we placed him on the diet without testing. It was SO obvious he had it. His diarhea cleared up, he started eating, he gained weight, he quit being so fussy.

Then I had blood work done, because I was having symptoms and it was positive.

It can be genetic and past on from a parent. THis seems to be pretty common around here.

If it were me, I would go ahead and have her tested fully. Then if the tests are negative, still try the diet.

GOod luck,

Monica

[mommida]

I just wanted to add to the advice....

Keep a food journal to keep track of those "suspicous" food items. It took a year of healing before I could tolerate annatto and distilled vinegar.

The book by Danna Korn, Kids with Celiac Disease, will be very helpful for you. It covers alot of issues. A brief outline of testing (my copy doesn't say anything about testing for antibody defiencies though, and I would suggest to test for that too). Family members should be screened. ( Testing in our family's experience wasn't very accurate.) How to handle get togethers where food is a major part of the celebration. Overall it is a no nonsense How to deal with this handbook.

Feel free to ask any question, and welcome to the board!

Feel free to PM me if you need help locating any lists. (remember to put your e-mail in the message.)

L.