This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc. Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease SymptomsWhat testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease ScreeningInterpretation of Celiac Disease Blood Test ResultsCan I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful?The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-FreeIs celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic TestingIs there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and DisordersIs there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients)Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients)Gluten-Free Alcoholic BeveragesDistilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free?Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free DietFree recipes: Gluten-Free RecipesWhere can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.For Additional Information: Subscribe to: Journal of Gluten Sensitivity
My son is 3 and takes a 1/4 to a half-dose of Miralax every day to keep him regular. It's worked very well for him. His ped says it's OK to be on it long-term; it's been nearly a year for us (off & on, though mostly on) and he's had no side effects. I also recently started giving him probiotic acidopholous (crushed into powder & mixed with morning milk, along with the Miralax) and it seems to have helped even more - I've cut back on the Miralax dose so that it's maybe about a tsp.
My 3 yo's belly looks exactly like that - & even bigger. He's been gluten-free since he was 9 mos old though, and after going through a couple really painful rounds of constipation last fall he's now on daily does of Miralax plus digestive enzymes (I crush up some probiotic acidopholous tablets & mix in with the Miralax with his morning milk). His belly still gets super inflated when he has to go poop or when he has gas (which is just about every day), but for me at least it's a good indicator of when to verbally remind him to use the potty (he's been fully potty trained since this spring). I tell him that his belly is getting big because the gas/poop wants to come out and he seems to get the concept. But even when he's not gassy/about to poop his belly is still kinda big. I think the pics are really helpful too, so I've posted some here: http://picasaweb.google.com/edbarbie/Belly02
I edited one of them so his weener's not showing, if you're wondering why the crotch part looks weird ;-)
Also FYI, we only did the blood (genetic) test and he had the DQ02 marker; his improvement on the diet was evidence enough for me that we were on the right track although I'm thinking that when he's a bit older I may try a gluten challenge to make sure it's really Celiac and not just a gluten intolerance. But for now, we're gluten free & he's doing well...Mr. Joe Average on the growth charts (49, 50th percentile) and it seems he's been 30lbs forever now, but he eats well and is a sweetheart so I'm happy.
Wow - sounds just like an episode of Mystery Diagnosis! I wish I had some key piece of information to offer, but sadly I don't. Seems pretty strange that the Alinia works for awhile, then the symptoms come back..I feel like that's a key piece. Trying the gluten free diet is harmless enough and it would be interesting to see how she does on it. (You have to give it awhile, though). I have a 3 year old (3 this past July) who's been gluten-free since 9 mos. It's not as bad as you think, and in Chattanooga you should have some access to supermarkets that might carry a better selection of gluten-free food. I lived in Murfreesboro for a spell...I think it was Food Lion and Kroger down there? The newer stores should have more items. Also, I swear by Gluten Free Pantry Favorite Sandwich Bread Mix. Get it online via Amazon in 6-packs for a discount - well worth it. Really really easy to make (you don't need a bread maker or anything), and tastes a million times better than any gluten-free bread you'll buy in a store. Good luck with everything, and please keep us posted.
- Fish (anything firm & white - ex, cod) with a bit of pesto smeared on it and sprinkled with gluten-free breadcrumbs - stick in the oven in a buttered glass dish covered tightly with foil, 350-ish until done and serve over the boxed Near East brand lentil rice pilaf
- Rice pasta a zillion different ways, ex. spaghetti with sauteed chopped apricots, garlic, olive oil, chopped parsley, parm cheese (or substitute for non dairy); with roasted red peps, black olives, feta
- Shrimp sauteed in olive oil with chopped garlic & big pinch each of cumin and paprika (my almost 3-year old LOVES shrimp)
- corn on the cob! sauteed green beans, plain rice
- steak in the broiler or on the grill - i marinate in gluten-free soy sauce, red wine, olive oil, onion powder, garlic, s/p
- corn tortilla rollups - Izak likes cinnamon sugar in the middle with a bit of butter, or jelly, or cheese - make sure you heat the tortillas in a pan first to warm them up
- egg salad, tuna salad, tomato/cucumber salad, potato salad, pasta salad!
- meatballs, meatloaf, burgers, tacos
I agree with Darn210 - if I ask my 2.5 year old what he wants without specifying 'you can have x or y', it's a recipe for disaster! Perky-Ohs are a great Cheerios sub - Izak loves the frosted and apple-cinnamon flavors. Right now he's big into snacking on the Envirokids Amazon corn flakes - I put some in a little bowl or baggie and sprinkle a bit of cinnamon sugar on top. It's his favorite take-along-in-the-car snack. He also likes the Envirokids krispie bars - peanut butter and the berry ones. They're kinda pricey, but a good snack. What are some of her old gluten favorites? I'd be happy to suggest gluten-free alternatives that might not even make her blink.
Another AWESOME older baby treat - Baby Mum Mum. It's a lightly sweetened gluten-free rice crackery thing that melts in the mouth & perfect for teething/first foods. My son used to love em. I think you can also mix them with breast milk or formula to make a sort of rice cereal mush.
My toddler is so picky these days, we've settled on a half to 3/4-dose (half to 3/4 capful) of Miralax every morning. He still only goes every 2-3 days - and with effort - but the stool is soft and not painful. Biggest issue is that most of the time all he'll eat is rice, bread, pasta, or bananas...nothing really poop-inducing. So I try to make sure he always has enough to drink - sippy cups everywhere, especially since the Miralax works by drawing water into the bowels. Of course, this also means that he has to pee all the time & I have to pull over every 15 min in the car so he can pee on the tires (we're potty training & basically out of diapers except for overnight - peeing on car tires is the best thing ever to him, and for me it's worth it to not have him going in his pants/carseat!)
Anyway, would she eat dried apricots? Those always seem to do the trick for me.
Would the local health food store be more open to carrying some gluten free products? Tinkyada pasta is definitely a staple in our house. What supermarkets are in your area? Here are some things that my 2 1/2 year old loves that you could make without having to get anything 'special' -
Rice pudding - (I just make some plain white rice with a little less water than called for, then add some milk - we use vanilla soy, but you could use regular - and sugar and cinnamon and cook it till the rice is done and a bit on the creamy side -- seriously, the kid could eat it every day
'Banana pancake' = a beaten egg blended with a ripe banana and fried like a pancake
Veggies! he especially loves parboiled carrots that have been finished in some butter, brown sugar & ginger powder ('ginger candied carrots'), raw red peppers, celery, broccoli...
Fruit! Canned peaches & pears are at the top
Chicken - especially a good roast chicken
Meatballs - just don't use breadcrumbs if you don't have any gluten-free bread
Corn tortilla rollups - the corn tortillas need to be nuked a bit, or thrown in a hot frying pan for a few seconds, then stick a piece of cheese on em, let it melt & roll up & serve
As far as 'mainstream' gluten free cereals, I think fruity & cocoa pebbles are gluten free, but then again those are sorta 'junk' cereals so wouldn't want them to be a staple. We live on Envirokids corn flakes and Perky-Ohs (like cheerios).
Some 'staple' things I would order online, or try to get that little health food store to carry:
Van's gluten free waffles - they're really good, and if your kid eats waffles, you'll want these
Rice pasta - like many others here, Tinkyada is our preferred brand
Bread mix OR an assortment of gluten-free flours, depending on your kitchen skills. I love the favorite sandwich bread mix by Gluten free pantry - you can get a case of 6 on amazon for about $26, which isn't quite cheap but it's not super expensive either (especially with their free shipping). It's REALLY easy to make, you don't need a bread machine - I do mine right in the oven - and it tastes great. If you're comfortable in the kitchen, you'll want to have some brown and/or white rice flour in your pantry, some sorghum flour, maybe tapioca flour...you might want to browse for some bread recipes before buying since the flours are a bit pricier. Any chance there's an Asian food store in your area? You might not even know about it - if you have a Chinese restaurant close to you, I would go in there and ask where they shop. You might be surprised to find a little hole-in-the-wall grocer that you never knew existed that would definitely have rice flour and maybe even rice pasta. I never even knew about the one close to me until I overheard some Indian women talking about a place I'd never heard of...I asked them about it and discovered this little place that carries a TON of gluten free stuff - and they were really nice & helpful when I first went in looking like a total dork.
This article names a few places that have gluten-free menus....I know Legal Seafoods in the Boston area has a gluten free menu - and even goes so far that if you request the menu, they actually won't let you order off the regular menu (my friend was there with her gluten-sensitive sister, who asked for the gluten-free menu, but then decided she wanted to try the risotto off the regular menu and they wouldn't let her order it!)
My 2 1/2 year old loves the Lil' Critters Gummy Vites. They actually taste like gummy bears (my husband eats them too!) and are free of gluten, milk, eggs, tree nuts, peanuts, soy & artificial crap. I buy them at BJs, but I'm sure Walmart or your grocery store would have them.
you can always use egg replacer (my vegan friends use it), and turkey bacon is an option (although not sure if he's reacting to chicken if he'd have the same issues with turkey). the avocado suggestion is great - that's definitely high fat (the good kind!) and high calorie, and you could probably hide it in something like a milkshake if he doesn't like it straight up.
delicious as that sounds (to my pregnant self!) - wouldn't that count as pork? might not be good for the whole EE issue.
hmmm...what about other meats & fish? lamb chops, steak, meat & bean chili...baked potatoes with cheese & broccoli! & sour cream too, if dairy's not an issue. my 2 1/2 year old loves rices pasta with a little olive oil & parmesan cheese - he'd eat it every night if i let him. i've also made fish cakes for him - canned salmon with some gluten-free breadcrumbs, chopped celery, onion, red/yellow pepper - you could use egg replacer to bind it (i use an egg), then make into little patties, coat with more breadcrumbs & fry in olive oil. or make banana bread with coconut & coconut oil...
I also use the Suave 2-in-1 kiddie stuff for my 2 1/2 year old, and wind up using it as a body wash for myself! The dragonfruit stuff smells really good - so does the mango tango (or whatever it's called) - yum!
So glad you found this site - it's been invaluable to me. As far as the cross contamination issue goes, I think there are some varying opinions, and it certainly depends on how sensitive your child's system is. Personally, I don't give Izak anything that's been processed in a wheat facility, but some people are less sensitive - I don't actually know what the industry rules are about cleaning equipment between runs, but I probably wouldn't trust them anyway since gluten has a sneaky way of getting in everything, especially if it's something flour-y or dust-y - I don't think all that particulate matter can ever really be 100% cleaned up. At home though, my son uses the same silverware and plates, etc. as us (we're mostly gluten free, but not 100%, although I do try to use paper plates for any gluten bread or whatever that me or my husband might want to snack on) - I just make sure than my dishwasher is always set to high temp & sanitize and it hasn't been a problem for him. I don't have a separate toaster oven - I know many here do to avoid the crumb cross contamination issue, but I do wash/wipe down the rack after I've toasted something with gluten in it. Cast iron pans also retain gluten, but I personally just wash mine thoroughly if huz happens to make a sandwich or something in it (heavy duty cleanser with steel wool) then re-cure it by smoking a little olive oil in there afterwards. Izak's Celiac symptoms have been opposite of your son's - he gets liquid explosive diarrhea, plus a nasty red raised bump rash on his abdomen, so it's pretty easy to tell if he's been glutened. So far we've been OK with the level of cleanliness that I maintain, but like I said, there are varying opinions on the matter and I know many on here wouldn't dream of using the same toaster, pans, etc. if there were gluten products being used in them - but also, it's about how each person's system reacts, and also about maintaining your own sanity - you sort of have to find a balance of how much you can deal with without going completely nuts especially when it's a new Dx and it feels like you're just trying to keep your head above water with all the new dietary restrictions, etc. But don't worry - you'll get through it! it's just another learning process. I will tell you though, if you enjoy cooking/baking at all, it makes things SO much easier - there are so many good recipes to be found on here and on the internet in general, and many of them are so delicious that your average wheat-eater would never know the difference. And the homemade stuff DEFINITELY tastes better than store bought - especially for breads and other baked goods. With all your son's other allergy issues, it's probably much more difficult to find suitable pre-made products anyway, so if you can find a few good staple recipes (a good bread one, muffins, pancakes, things like that), you'll be much better off making them yourself. Anyway, good luck with everything and I hope the diet helps!
Just to add to this comment - my son is only a toddler but already loves to cook with me. I made these amazing gluten-free buttermilk doughnuts on new years day and they were AWESOME - soooooooooo yummy!! I just glazed them with a mix of confectioners sugar, water & maple syrup and they were gone before they'd even had a chance to sit for a day - my non-celiac husband couldn't stay away from them. Working together, I'm sure you can find a solid list of gluten-free 'favorites' that she can focus on, instead of the eat-nots. And I wouldn't be surprised if some of the gluten-free recipes/foods you find are even better than the gluten ones! Good luck...