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saraphym

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Hello!

I just wanted to introduce myself. I am mom to 2 kids, ages 10 and 3. My oldest, girl, has ADHD and is otherwise pretty normal. My son, 3, has a form of Ectodermal Dysplasia, lactose intolerance and, as we just found out last night, Celiac. In a panic, I sent DH to the store for gluten-free waffles, corn dogs, cookies, crackers, etc etc!

So we are on day one. He threw up this morning while at preschool and has been running a low grade fever. I don't know if he is sick or if it is because he had whole wheat spaghetti two nights before. He was up most of that night in pain and we didn't know why until we got the call last night from the pediatrician...poor baby. Anyway, tonight before bed, I gave him a slice of his new gluten-free bread with a very thin layer of jelly. He ate it, so it must not be terrible!

I cannot express how HAPPY I am to have found this forum! I am so bewildered and overwhelmed at this diagnosis on top of everything else (he is to see 7 pediatric specialists ASAP for various other issues) but am also glad that his needs may finally be met.

Anyway, I am looking forward to connecting with the gluten-free community here and exploring / sharing great ideas with everyone.

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Hi Welcome! You just joined an amazing family. All your questions can be answered very quickly no matter how dumb, simple or gross they sound. And everyone understands what you and yours are going through. Some have minor problems like my dd and some are extreme. You could wait weeks/years to get help from the doctors but here...many (experienced) heads are better than one! Some peeps on here should be doctors or professors! It may be overwhelming at first but it does get easier! :D

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Welcome to the club. We are happy to help. Hope he recovers quickly!

Did you get DD tested for Celiac too? Her issues could be related. Also at least you or your hubby has the gene(s). You might think you dont have symptoms, but you would be surprised at how good you feel gluten-free if you are Celiac without knowing it and go on the diet.

PLUS it is A LOT easier for the whole house to be gluten-free.

See about get everyone tested. Might as well do it now in the beginning of your journey.

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Welcome. I know it can all be overwhelming at first. just remember to keep it simple at first. As you adjust, the special things can find their way into the diet. I would recommend finding a local support group as well. ROCK--raising our celiac kids is a good place to start

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Thanks for the warm welcome, everyone! It really feels good to know that there is a network of others out there who understand what we are going through.

Here's a laugh - my DH's first reaction when I explained the disease to him was "OMG, he'll never get to have a BEER!" LOL - and I was worried about what to make for dinner!!

Anyway, no one else in the family has been tested, but I agree that it is probably a good idea now. My little man is feeling much better today and had his first, real, bona-fide gluten-free day. He was more chatty than usual, less poopy and seemed to do OK with his peanut butter and jelly on gluten-free bread.

He is having trouble taking his vitamins though. With the multivitamin & iron supplement, I can usually hide it in his chocolate lactaid milk, but no luck now that we got off Ovaltine and onto gluten-free chocolate syrup. I think I will try applesauce for tomorrow morning's dose. Maybe I could even get him OFF chocolate milk all together! (high hopes!)

Now all I have to do for preschool is find gluten-free, non-dairy food that is also Kosher!

:huh:

Thanks again for the nice welcome - I am so glad to have found my way here!

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Tell your husband that Redbridge by Budweiser is gluten-free, so he will have the day he can share a beer with his son. :)

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Take care with gluten free products which may have all sorts of new and difficult to digest flours in them. In some ways it's easier to stick with really plain, uncomplicated whole foods initially, and sometimes beyond.

Best wishes,

Matilda

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Thanks for the tips!

He has really exploded lately. And I mean in the bottom area. Could it be the new types of flours and such that are causing his insane diarrhea? And this is really an issue...dripping down the leg, pouring out kind of poops. Could this be left over from the stomach bug he had a couple of days ago?

He has been on an iron supplement, too...maybe that is it also? Though I thought that was supposed to "firm things up"?

Anyway, I finally got him to take vitamins by mixing it with some applesauce and all-fruit jelly!

Any tips/advice on the gushing stools?

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It could be so many different things....the first few months gluten free are difficult. You mentioned lactaid milk...is he drinking that??? Many Celiacs find that they have difficulty tolerating any milk products at all after going gluten free. I tried Lactaid with my kids, and they still reacted, but not until they went gluten free for a while.

It could also be soy.....does he eat/drink any soy products? Soy is another biggie that many Celiacs have to avoid...soy, gluten and casein all have similar structure and can cause the body to produce an autoimmune response. My kids do okay with small amounts of soy, like in Van's waffles, but only occasionally. I tried making bread one time with soy flour, and we were all in agony that night!

Another possibility, and this would be my guess, is that gluten snuck in somewhere. There is a great learning curve with gluten free, and with most families it takes a few months to really be 100% gluten free. I made a ton of mistakes in the beginning w/out realizing it, which happens to alot of people.

Hope he's better soon.....tummy troubles are miserable for our kiddos. You came to a great place for help and information, this board has amazing people who can help with any question you may have. Welcome!

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OMG. I am so overwhelmed. What CAN I give this kid?

I am in tears now - I don't know what I can give him to make this easier for him. It's all kind of hitting me now and I don't know what I can give him that won't make him sick.

He has been drinking lactaid milk for the past couple of days, but only at home...usually he drinks soy and does ok with that.

I got gluten-free everything and have been watching everything he puts in his mouth. He had some frosting at preschool yesterday, because another kid brought cake for a birthday. Maybe that's it? I just don't want him to feel left out.

He has always been a carb-loader. Waffles, oatmeal, corn dogs...all staples at our house. Now I don't know what to do because he refuses veggies, fruit, meat. He's already underweight, anemic...he has to eat something, right? I just don't know what to do. What is the best diet for the first few days/weeks of this? Is there a recommended menu or something somewhere?

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I know it is so hard with children. All that poop might actually be a good sign believe it or not. His body is detoxing and cleaning out from the gluten.

Simple foods are best for now. Some things that children like are things like baked sweet potatoes with cinnamon and brown sugar. Mashed potatoes and homemade french fries (bake them in the oven, spray with oil, sprinkle with salt 350 until golden brown).

Van's Waffles are good.

You can get gluten free oats: Bobs makes them and here is another:

http://www.gluten free.com/SearchByKeyword....CFQZlswodtAJh7Q

Try Quinoa flakes with brown sugar and cinnamon.

Fruit smoothies are good.

http://www.childrenshospital.org/clinicals...50Flevel37.html

http://www.sbetterfarms.com/corndogs.htm

http://www.celiac.com/catalog/product_info...products_id=597

***And yes...that frosting was a NO NO. You will need to work with his teachers so that you can always prepare him a yummy to take on birthdays and such so he wont be left out.

It gets easier. We promise.

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This will get better...

I know this is conflicting advice that you have received in another post, but really your child is sick & cannot digest those bought gluten free products and certainly do not give him oats. I would also cut out all dairy and all soy. No one really needs milk. Try coconut milk as a substitute, it is full of good fats & tastes good. good to bake with & good in smoothies...

What you can do is make a list of the foods that he will eat, that are naturally gluten free or can easily be made gluten free. Chicken nuggets for example. check out the recipe section here.

once your son is not eating the grains and dairy, his taste will change & his appetite should pick up.

You can put peanut butter on apple slices or on celery sticks or on a white corn tortilla or on a Mission Brand Corn Chip (I like the new strips).

Welch's 100% Grape Juice is good, & you can dilute it.

Also, if you are going to have gluten items in your house (a mixed kitchen, as we say) you will need to read the threads on cross contamination. There are several one here...

Please wait to introduce those gluten free processed foods that are substitutes for bread products. Some people do not tolerate yeast, xanthun gum, tapioca flour, bean flours etc etc. Also, please do not panic, once he heals this could all change.

At first what you have to do is rethink everything that you think that you know about food. You want to make sure he gets a protein, veggies, fruits and the good fats. This means that for breakfast it is okay to eat last nights left over pot roast with maybe a baked sweet potato. Like another poster said add in some cinnamon, brown sugar, or 100% maple syrup & maybe even a few miniature marshmallows(Kraft miniature), pineapple - if he likes that - sprinkle of toasted coconut, chopped walnuts...

You can also wash some white rice really well & cook in some coconut milk & add any of the above for a yummy breakfast treat - or anytime... Make sure the rice is cooked till well done & do not use brown rice, thinking it is healthier, because brown rice is harder to digest, plus some of us do not tolerate it.

contact your local support group & also get the name of the local ROCK group (raising our celiac kids)

keep reading - it will become second nature after a bit...

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Like taweavmo3 said . . . it may be that he has gotten some gluten. As he starts to heal, he may (many do) react stronger to very miniscule amounts of gluten. He needs his own (gluten crumb free) jars of peanut butter, jelly, butter, etc. He needs his own toaster and collander/pasta strainer. Is his vitamin gluten free? His toothpaste? Any other medications? The icing sounds suspicious also, many of the store bought icings have gluten. And don't ever "scrape" the icing off the cupcake to eat; it's contaminated. Just like you can't pick the cheese/meat off of a pizza . . . once it comes in contact, it's contaminated. I will also say that when we first started this journey, I couldn't believe it was as strict as that . . . What do you mean she needs her own toaster??!!?? . . . but once you get into the right mindset and develop the right habits (I wash my hands every time before I touch her food) it becomes the norm and not that difficult.

Keep a few treats (dum dum suckers, skittles, etc) at school with the teacher so that if Birthday cupcakes arrive unannounced, she has something to give him.

Wait on the gluten-free oats for a while. Some Celiacs do not tolerate them at all, some are OK in small amounts. You need to be well-practiced in managing the gluten-free diet and he needs to be well-healed so you will be able to determine if the oats are OK for him or not.

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Welcome!

In addition to what all the others said, preschool is cross-contamination hell. Cracker and cereal snacks, pasta crafts, PLAY DOH, everyone else's sandwich for lunch, birthday treats, etc. etc. etc. ad nauseum. Every hand that touches any of those things contaminates every other surface they touch until they are washed. The teachers and the kids need to wash up after touching any gluten item. The tables and toys need to be cleaned daily. It would not be a bad idea to have every child wash his or her hands upon arrival every day because there is a very good possibility they ate something gluteny with their hands for breakfast and did not wash their hands after they were finished.

Educating the teachers will be extremely difficult. Educating other parents will be impossible. They just won't "get it."

Google "gluten free kosher" without the quotes and you will find lots of help for combining the two needs.

I know there are at least one or two other forum members who keep an gluten free and kosher home but I can't remember who they are right now! :huh::(

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Wow, thank you all so much for the advice. I made him a sweet potato last night for dinner and mashed it up with brown sugar and cinnamon. He ate about half of what we gave him, which was pretty good for him. He is still REALLY poopy this morning - 4 "explosions" so far. I have been giving him Gatorade to try to make sure that he is getting enough electrolytes. He has always tolerated soy in the past, so I really hesitate to remove anything else from his diet... :(

I'm planning a LONG trip to the health food store later on today with my MIL. My mission is clear: purchase gluten-free, Dairy Free KOSHER snacks/meals that he can take to his preschool (he attends a jewish preschool). And dinners. Being a working mom with another kid who is very involved in extra-curriculars, I often do not have time to cook/bake anything that takes longer than 15-30 minutes to make, MAX. I think that is why I am kind of freaking out about this. That and the financial strain this has on us...we are middle-class people trying to stay out of the red in this economy.

Anyway, we are supposed to hear from the nutritionist to schedule an appointment and until then, we have sweet potatoes, white rice, gluten-free cereal and maybe I could get him to eat some green beans again.

I have managed to get him to take his multivitamins and iron supplement (both DF and gluten-free) so I guess he will not get too emaciated until then.

What i need is someone to come into my kitchen and show me exactly what to do! Seriously, how great would that be? ;) There is not a ROCK chapter in my area, which is surprising, I think. I have emailed the lady who started ROCK to see if she has any suggestions or tips that might help. Until then, I guess I just hit the health food stores and ask them for help!

Smoothies are a good idea, too...will DEFINITELY be trying that. Again, this forum has been an absolute Godsend, and I cannot thank you all enough for your support, advice, ideas...

BIG HUGS to my new BFF's!!

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Snacks

take fresh dates & take out the seed, stuff with walnuts, roll in powdered sugar. They keep forever in a tupperware.

cut up Dried apricots into slices, dip in chocolate or peanut butter (can thin with honey), also good with dried apples.

make a trail mix out of nuts, one salted nut is nice, like salted almonds, then the rest fresh nuts, (banana chips -most kids like) dried fruits, a bag of M & M's.

order some gluten-free bars on line - Boomi is one that I think is very good & nutritious.

A bag of plain fritoes.

deviled eggs

cold sliced baked chicken

popcorn

http://www.naturalcandystore.com/c-natural...CFQVrgwodrwE9tw

this is a good site to get Kosher/gluten-free/organic candy etc. - Not sure that you will find all three in the same candy :) I have not looked for Kosher, but really like their selection that is gluten-free with no artificial colors...

Good Luck with your shopping trip. Oh & know that not all the health food personnel know about gluten-free. Spelt is NOT gluten-free, despite what the sales people might tell you. DOUBLE CHECK everything that you buy, when you get home...

oh & do not buy Quaker brand rice cakes or grits, they are cross contaminated.

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Kids that age put all sorts of things in their mouths. Does he have access to homemade playdough (like at early K or preschool), it is made from wheat flour? Is he around other children eating wheat snacks, he could be getting cross contaminated by the crumbs? I am really sensitive and cross contamination is a real issue for me (the rest of my family do not have celiac witht he exception of one of my triplets and she is still be tested so has to continue to consume gluten products).

This time period is a real learning curve time for you and your family. You will need to clean you kitchen really well. If you have old scratched pots you will have trouble getting them clean enough to safely cook in them for him. Any cooking utensils that have scratches or are made of wood should be replaced. He needs to have his own toaster (or buy toaster bags for his bread), you will not be able to get it clean enough to be safe for him. Designate an area of the kitchen that is gluten free and prepare all his food in that area. Do not put any of his food directly on a counter or in a microwave, always put it on a plate first. I bought a bunch of colourful cutting boards (the cuts in the boards are great places for gluten to hide) and everyone in the family knows that they are the gluten free boards (the old boards are all white and are used for their gluteny food).

I found I had to get rid of all sources of gluteny flours, they can become airborn to easily and then settle and stick to everything.

Have a designated cupboard for his gluten free food. This was tough for me in my small kitchen so I designated a few shelves (top shelves so nothing could be dropped on them) and I store all my dried goods in canning jars to prevent cross contamination.

This doesn't have to be a daunting job. Just pick one part of it at a time to tackle. I revamped my kitchen over a period of a week (I was still too sick to do this fast).

I second that all of you need to be tested. My daughter, the with the positive ttg, is asymptomatic with the exception of eczema. You can have no symptoms and still have this disease.

Hang in there.

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Welcome to the family and welcome to the roller coaster of emotions that the first few months bring. My posts were crazy those first few months...is he being glutened...does he have the flu...can he not tolerate milk...did he eat something with lots of flax or some other new ingredient...is he eating too many fruits and veggies... I can tell you it does get better, much better. In fact, I just had the tables turned and was actually at the health food store helping a friend with her shopping after her son was just diagnosed last week with tons of food allergies. So just hang in there.

To your immediate problem though...your son's gut isn't healed yet. It's been less than a week. Just give it time. Do your best, but try not to stress out too much. I know (believe me) that is easier said than done, but it's going to be OK. Most likely there will be lots of foods he can eat. Do spend some time here. The people here have lots of good advice. You won't always get the same advice from everyone, but you will gets lots of good ideas and things to try. And all of us have been where you're at right now and where you're going. And where else are you going to go to freely talk about poop, gas, and such?! :lol:

Brighter days are just around the corner...and if I lived anywhere near KC I'd pop right over and help any way I could. :)

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Just an update...the rear-end explosions were from the iron supplements. It just hit me all of a sudden that the supplement could be the issue. So I called the pediatrician and reported that the iron was causing this. The pediatrician said we just need to "keep up the good work" and keep him on the iron. :angry:

So...I advised the nurse who called me that I was cutting his dose in HALF and if he seemed to tolerate THAT ok, then we would see. I kindly told her that if the doc wanted to deal with him screaming from red raw rashy legs and hiney from exploding POO 4-6 times a day, that I'd be happy to drop him off for a while. She said she didn't blame me and she would probably do the same thing.

Do I need a different pediatrician? The nurse practitioner we saw was more interested in his syndromes than his pediatrician! I would get a second opinion, but with all of the specialists we are seeing, maybe I will just "poll" them and see if they know of a pediatrician that might show some interest in a kid who is not so run-of-the-mill healthy!

Anyway - other than that, little man is doing great. Less fussy, talking more, just happier in general. gluten-free has been wonderful so far. Sweet potatoes, beanie weenie (Hebrew National & Bush's Baked) gluten-free cereal, etc etc has worked just great. I forgot that the kid doesn't eat anyway, so it doesn't really matter what I set in front of him! LOL

Again - thank you ALL SO MUCH for your invaluable support and encouragement!

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I just saw the posting about the little one with Ectodermal Dysplasia and Celiacs. My four year old daughter was recently (about 6 weeks) diagnosed with Celiacs. Then three days ago she was diagnosed with Ectodermal Dysplasia. Is there a connection between the two diseases? Does anyone know how I can find out?

Thank you. This website has been a blessing.

Shaunnie

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I have a recommendation for gluten free dairy free breads, etc.... Kinnikinnick makes very good bread, bagels, muffins, cookies,... the list goes on. Just go to www.kinnikinnick.com. The best part is they charge a flat shipping fee, no matter how much you order! I would order TONS of things and just stick them in the freezer. Now, when I am at home, I just bake my own bread. But, when I was first starting out on the diet Kinnikinnick saved my life! The cinnamon raisin bagels toasted and spread with Tofutti Better Than Cream Cheese are AWESOME! I hope this helps.

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