Jump to content
  • Sign Up
Celiac.com Sponsor:


Celiac.com Sponsor:

Archived

This topic is now archived and is closed to further replies.

Jenybeen

Where Do I Start?

Recommended Posts

Hi all. Well, I visited this forum a while back when my son was undergoing testing for Celiac Disease, and when the results of blood and biopsy both came back negative, I thought I wouldn't need your support afterall! Well...countless tests later (ruled out Crohns, Cystic Fibrosis, bacterial infections, etc) and still with no diagnosis for my 6 year old son, I am back.

I was thinking of trying to cut all gluten out of my son's diet to see if that changes anything for him. Right now we are dealing with chronic diarrhea (since toddlerhood), aggresive/irritable behavior, frequent headaches and backaches, and stunted growth. They've put him on Creon, a pancreatic enzyme, because they now suspect pancreatic insufficiency. We have not seen any improvement with him on this medication.

My question is: where do I start?? He is such a picky eater, and nearly everything he will eat has wheat in it. I'm thinking he's going to starve! He doesn't like fruits, veggies or meat and will gag and sometimes vomit if I force him to try one of those things. What's the easiest way to take all your child's favorites foods away? What can he eat? Should I even be attempting this?

I would love to do the enterolab tests, but can't right now due to financial reasons.

Thanks for any advice you all have!

Share this post


Link to post
Share on other sites

Is there any single veggie or fruit that he will eat?

Dairy, such as milk, yogurt, and cheese can count as protein if he won't do meat right now.

Can you give us some examples of what he normally eats in a day?

-Sarah

Share this post


Link to post
Share on other sites

hi YES try it!!!

tinkyada pasta, we like the shells... make macaroni and cheese, just add butter, grated cheese and sour cream

kinnikinnick breads for sandwiches

kinnikinnick also makes individual size pizza crusts, just add pizza sauce, mozzerella and whatever else!

glutino makes ritz like crackers, pretzels etc.

enjoy life bars... caramel apple and very berry

they have gluten-free cheerio like cereal-- perky O's

applesauce is always good...

yeah, let us know what he eats and im sure we'll have alot more suggestions! good luck!

Share this post


Link to post
Share on other sites
Is there any single veggie or fruit that he will eat?

Dairy, such as milk, yogurt, and cheese can count as protein if he won't do meat right now.

Can you give us some examples of what he normally eats in a day?

-Sarah

No, not a single fruit or veggie. Amazing, because my other 3 kids LOVE fruit and 2 of them are veggie lovers! Guess I should've mentioned...Isaac (the son I am concerned about) is allergic to milk (and eggs and peanuts)! So there goes the dairy idea! So his food choices were already pretty limited...

He will eat: breakfast=waffles, pop tarts, dry cereal....lunch=Dino nuggets (from Sams Club, only milk free ones I can find), plain pasta, or a grilled (cheese-less) butter sandwich. Dinner=see lunch list. He loves graham crackers, plain crackers, chips, sorbet or popsicles for dessert...and I think that's it. He doesn't even like all the "kid" snacks like fruit roll ups and fruit snacks. He will only drink water, soy or rice milk, sunny delight and apple juice.

So...there you have it! Any ideas?!?!??!

Jennifer

Share this post


Link to post
Share on other sites

My kids like (and I've tried to only include stuff that is gluten free, dairy free, and egg free but please double check me as I don't have to screen for dairy or egg)

Tinkyada brand pasta

Van's waffles (make sure you get gluten-free - they have other kinds)

Glutino's pretzels

Envirokidz Amazon Frosted Flakes (my kids actually prefer them dry - well, most cereals they eat dry and drink the milk in a cup - I do that, too - I hate when cereal gets the slightest bit soggy :P )

Trix Cereal

Envirokidz Gorilla Munch

Erewhon Crispy Brown Rice (like rice crispies)

Have you tried sunbutter (made out of sunflower seeds)?

I make my own chicken nuggets and freeze (I think mine taste better and they are cheaper - it uses egg but could easily replace w/egg substitute) - let me know if you want the recipe

chips, sorbet, popsicles - all still good

By the way, one of the ways I get fruit into my kids is to make fruit popsicles. My kids call them smoothie pops because it starts off as a smoothie that they will now drink but then the rest is poured into popsicle molds.

You need to have a good blender . . . puree banana (the riper the better) and V8 Splash juice (we prefer the very berry), then add frozen fruit of your choice - we prefer strawberries, melon, mango, and peaches. (Don't do grapes - at least in the beginning because the skin just doesn't

liquefy) add enough Splash juice so your blender doesn't get bogged down. Pour into popsicle molds and freeze. This was how I got my son past bananas and apples - he just wouldn't eat anything else. And if you need to, in the beginning, don't let him see you make it with all that fruit going into the "new kind" of popsicles that you found.

Share this post


Link to post
Share on other sites
No, not a single fruit or veggie. Amazing, because my other 3 kids LOVE fruit and 2 of them are veggie lovers! Guess I should've mentioned...Isaac (the son I am concerned about) is allergic to milk (and eggs and peanuts)! So there goes the dairy idea! So his food choices were already pretty limited...

He will eat: breakfast=waffles, pop tarts, dry cereal....lunch=Dino nuggets (from Sams Club, only milk free ones I can find), plain pasta, or a grilled (cheese-less) butter sandwich. Dinner=see lunch list. He loves graham crackers, plain crackers, chips, sorbet or popsicles for dessert...and I think that's it. He doesn't even like all the "kid" snacks like fruit roll ups and fruit snacks. He will only drink water, soy or rice milk, sunny delight and apple juice.

So...there you have it! Any ideas?!?!??!

Jennifer

Yes!

The Van's waffles that Darn210 mentioned are indeed dairy and egg free. They are available at Whole Foods, and at some regular grocery stores. Be careful that the front of the box is marked "gluten-free" because they also make a line of wheat waffles. My sons are also waffle addicts, and they love Van's Blueberry waffles, and their Buckwheat Wild Blueberry and Raspberry. They also make plain ones.

The idea of making your own popsicles is an excellent one. Also, a couple weeks ago I found a recipe for making your own sorbets. I found it on Recipezaar-- http://www.recipezaar.com/74760

This is a great way to get real fruit into his diet- you may even be able to sneak a carrot or something in there.

There are lots of different brands and types of gluten-free pasta to try. I, too, think Tinkyada is the best, but the key to all gluten-free pasta is cook time. That takes practice, and lots of taste testing when it gets close to done. Once it's overcooked, it's inedible- don't even try it on him (that's a mistake I made, and it took a week before my 6 year old would try it again!) I've had excellent luck with Tinkyada's Energy-Efficient method. Cook in boiling water for one minute, turn the heat off and plop a lid on it for 20 minutes, and it's done. Those directions are printed on the package. Also available at Whole Foods.

For dry cereal, there are specialty gluten-free cereals, but so far my kids haven't dug those too much. There are a few mainstream cereals that are gluten-free, though:

*Trix

*Cocoa Pebbles, Berry Pebbles, and Fruity Pebbles

*Dora the Explorer Cinnamon Stars

*Kellogg's has a Spiderman cereal that's out now, probably for a limited time. It's little red and blue puffed balls, tastes somewhat like a berry flavored Trix.

The Pebbles cereals can be made into cereal bars by using the traditional Rice Crispy Treats recipe, and just substituting the cereal.

Crackers are tough. That is one of the things my son misses the most. gluten-free crackers are just not the same. There are good tasting ones out there, but I've yet to find one that my kids really like. The ritz-like crackers from Glutino that Vanillazeis mentioned are worth a try. I personally thought they were not bad. They definitely are the only one I've tried that had a texture similar to a wheat cracker.

They do love Glutino's pretzels, though-- they actually taste exactly like regular pretzels. Most chips are ok, but not all! Regular cheesy Doritos are NOT gluten-free, although the Cool Ranch ones are. Pringles are deadly (some of them have straight up wheat flour on them!), my mother ate just 2 sour cream and onion Pringles, and nearly ended up in the hospital. All chips must be checked! A few of my kids' favorite safe ones are:

*Lays Stax (taste like Pringles)

*Utz brand chips

*Cool Ranch Doritos

*there are many, many more.

Chicken nuggets... I also make homemade ones now. They are super easy, just three ingredients. Someone on this forum gave me the recipe, I can't remember who, sorry :(

1 lb ground chicken

1 egg (I think you could use egg replacer, no problem- it's just for a binder)

crushed Lays potato chips (crush/grind them as fine as you can)

Mix the chicken and egg, and roll into nugget shapes. It'll be very smooshy until you start rolling it in the crushed chips, then they'll be easier to shape. Plop them on a cookie sheet and bake until the chicken is done. I put my oven on 400, and cook until the chicken is completely white. They will dry out if you overcook. They can be frozen and reheated.

The chic nuggets may or may not work for your son. I was frankly shocked when my kids liked them. They really do taste kind of like McDonald's nuggets- probably the grease and salt from the chips!

As for bread, my son likes EnerG Light Tapioca bread (we have to order this over the net, can't find it anywhere around here) and Kinnikinnick Tapioca Bread or White Sandwich Breads (which can be found at Whole Foods in the frozen section.) There are lots of recipes floating around for homemade breads, if you'd like to try that out.

I hope this helps!

-Sarah

Share this post


Link to post
Share on other sites

I'm not sure if they are dairy free, but Bell & Evans make really good chicken nuggets (black box). Maybe he could have french fries, you could always make them yourself if needed. My son likes Food for Life brown rice tortillas as well. As far as store bought bread goes I think Kinnikinnick is the best, if he can have it. Pamela's has some great mixes for pancakes/waffles, bread, cakes, and brownies. Many of my son's favorites were listed above so I'll leave it at that. You may just find that your son is much more open to trying new foods once he feels better. :)

Share this post


Link to post
Share on other sites
You need to have a good blender . . . puree banana (the riper the better) and V8 Splash juice (we prefer the very berry), then add frozen fruit of your choice - we prefer strawberries, melon, mango, and peaches. (Don't do grapes - at least in the beginning because the skin just doesn't

liquefy) add enough Splash juice so your blender doesn't get bogged down. Pour into popsicle molds and freeze.

It's kind of implied but not written well . . . you need to puree everything to a fine slush. They should not be able to visually identify any fruit or fruit pieces :P .

Also, if I recall, Kinnitoos are an oreo type cookie that are egg, dairy and gluten free. And the Glutino ritz-like crackers are good but do contain egg as does the Bell&Evans chicken nuggets.

Share this post


Link to post
Share on other sites

Ridgewalker and others have given me great advice - this forum is AWESOME!

I am in the EXACT same situation as you. the 2 1/2 DD will gag and throw a fit if I try to get her to eat anything OTHER than the glutenity dairy foods she "loves" so much (barely eats that stuff too).

I agree with Ridge - find the one thing that your child loves and just let them go for it.

My DD had a casein intolerance on her Enterolab results as well and I'm finding that casein and gluten sensitivities are usually entertwined - we are keeping her on both until we see a ped gastro on the 25th, which is killing me but I don't want to screw up any potential repeat bloodwork or, heaven forbid, if we decide we need to scope her for a biopsy.

So I have been doing research online at night in preparation for this transition. (what did celiacs and others do before the Internet with all of this??? I can't even imagine!). Trying to see what we eat that already fits the bill, what is carried in my local grocery store, and what I may have to go to Whole Foods or someplace like that to get/order online

by the way, if you have a whole foods near you, my understanding is you can ask for gluten and casein free menus up front before you shop and the guide will help you find and purchase those items in the store.

Try this website for gluten-free casein free food ideas - of course you have to verify through calls to the manufacturers to make sure it still has Gluten-free Casein-free status but what a wonderful resource.

http://www.gfcfdiet.com/directory.htm#J

If you look at my previous post about Picky Eaters and Celiac, there are some great responses in there to what I posted on this same exact issue. I think my ultimate take is when we do the diet, if she gains and grows no matter how much or little she eats, then it is working. If she continues to decline if she's still picky or even if she's eating more, then we'll have to go back to square one.

Share this post


Link to post
Share on other sites

Thanks for all the wonderful ideas, everyone! I tried to talk to Isaac last night about Celiac and the diet I'd like him to try out...he was SO upset. Tears and all. "YOU MEAN I CAN'T HAVE POPTARTS?!?!" LOL...6 year olds! Tried to get him to eat some meatloaf last night...wouldn't even touch it. Same with green beans. Everyone says to put the food on his plate, if he doesn't eat it then give him nothing else...he'll eat when he gets hungry enough, etc....But I am finding such a hard time doing this! I feel so guilty! And he just flat out won't eat if I do this! He's small enough as it is and is teetering on the bottom of the growth charts...I just think that any food is better than NO food at all. This is going to be a huge battle. I'm planning to take him to Henry's market (like Whole Foods/Trader Joes) this weekend and let him pick out some gluten free snacks and things to try. We'll start there I guess, and worry about the fruit/veggie/meat issues later.

If I eliminate all gluten...about how long should it be before we notice any changes? Really looking to get his chronic diarrhea under control.

Thank you!

Jennifer

Share this post


Link to post
Share on other sites

I am big into not pushing it on veggies and fruits. As a kid - as far back as I can remember - I hated green beans and peas. I had to sit at the table until my helping (whatever size my mother decided to give me) was gone from my plate. To this day, I still don't like peas and especially green beans. I'm 43 years old.

As a kid, we never had broccoli, zucchini, or aspargus and I much prefer those veggies - which I learned to eat shortly after college. I think if I had been forced to eat those as a kid, I probably wouldn't eat them today, either. Yes, I think there is a mental aspect to it.

My philosophy with my kids is to try and present it (veggies) in different ways so they (the kids) can see if they find a way that they like it. I do ask them to try one bite and if that's it, then that's it. My neighbor calls it the "No Thank You Bite". You can't say you don't like it if you don't try it. You take one bite (and at our house, sometimes it's a very small bite, indeed :P ), if you don't like it, then you can say "no thank you" to a full helping.

I asked my pediatrician about the "picky eating" side of kids. Our discussion led us to the "no thank you bite" followed by "get yourself a bowl of cereal because nobody is going to fix you a special meal." (That's for when they aren't wanting to eat the main entree.)

One of the things you might want to try with him is to take him into the produce section and let HIM pick one fruit or vegetable to try. You might get a little buy-in from him then - and you might not :rolleyes: .

Share this post


Link to post
Share on other sites
My philosophy with my kids is to try and present it (veggies) in different ways so they (the kids) can see if they find a way that they like it. I do ask them to try one bite and if that's it, then that's it. My neighbor calls it the "No Thank You Bite". You can't say you don't like it if you don't try it. You take one bite (and at our house, sometimes it's a very small bite, indeed :P ), if you don't like it, then you can say "no thank you" to a full helping.

I asked my pediatrician about the "picky eating" side of kids. Our discussion led us to the "no thank you bite" followed by "get yourself a bowl of cereal because nobody is going to fix you a special meal." (That's for when they aren't wanting to eat the main entree.)

This is my philosophy as well! Every time I set something new in front of my boys, they (esp. the 4 yr old) say, I don't like it! To which I reply, You don't know that yet- you've never had it.

I persistently encourage them to try one bite- but like you, I never force them to eat the rest if they don't like it. A serving of beans is not worth a night of misery for all involved.

I also always include at least one food in each meal that I know they love. Then there will always be one item that's a sure thing. And then, like you, I'll tell them to go get something else for themselves- a banana, a carton of yogurt, cereal, etc... no junk allowed in these cases.

I admit, though, that there are still plenty of nights I play short-order cook... Much less often than I used to, though. Sometimes I don't mind, it's just not a big deal. Part of that is just our family routine, with the kids eating early, around 5:30, their dad eating around 7:30 which is usually when he gets home, and then I almost always eat after the kids are settled in bed. It's not perfect, but that's the way it's working right now.

mykidsmommy, thank you for the compliment-- I've gotten wonderful advice here as well! I really don't know what I would have done without the glutenfreeforum. I certainly don't think we would've adjusted to this lifestyle so quickly, and I absolutely know that my son's healing would have been slower without all the info on cross contamination, etc that I've gotten here.

-Sarah

Share this post


Link to post
Share on other sites
Hi all. Well, I visited this forum a while back when my son was undergoing testing for Celiac Disease, and when the results of blood and biopsy both came back negative, I thought I wouldn't need your support afterall! Well...countless tests later (ruled out Crohns, Cystic Fibrosis, bacterial infections, etc) and still with no diagnosis for my 6 year old son, I am back.

I was thinking of trying to cut all gluten out of my son's diet to see if that changes anything for him. Right now we are dealing with chronic diarrhea (since toddlerhood), aggresive/irritable behavior, frequent headaches and backaches, and stunted growth. They've put him on Creon, a pancreatic enzyme, because they now suspect pancreatic insufficiency. We have not seen any improvement with him on this medication.

My question is: where do I start?? He is such a picky eater, and nearly everything he will eat has wheat in it. I'm thinking he's going to starve! He doesn't like fruits, veggies or meat and will gag and sometimes vomit if I force him to try one of those things. What's the easiest way to take all your child's favorites foods away? What can he eat? Should I even be attempting this?

I would love to do the enterolab tests, but can't right now due to financial reasons.

Thanks for any advice you all have!

Hi Jenni

Ok, no fruit or veggies? how about the fruit bars that are like fruit snacks?

how about trying salad?

I am small, but my daughter was realllllllly small.. they were classifying her as FTT.. Her blood work was positive since she was 4, but her biopsies were negative. The 1st 2 were definitively negative, where as the 3rd was in the gray area, the pathologist said to base it on her blood work, and we started the diet. lo and behold she has gained 25 pounds and like 5 inches this year..

I would not suggest that you do the gluten-free diet, only because if you do, you would have to reglutenize him for testing..

As for the gagging and vomiting thing, i have seen this before. There was a little boy in my daughters prek program.. It was classed as an O/T problem.. which means he may need occupational therapy.. The little boy i knew had it, and is fine today.. he vomited everthing..

Um, have you had allergy testing done?? I know quite a few people who tested negative on the gluten-free testing, and was proved to be positive thru an allergist when tested.. He could be extremely allergic to something.. This may be your best course of action. I know, I wanted to do the enterolab thing also, but can't afford it either.. Me, my testing has come back negative, but i have what could be symptoms of celiac. enamal loss on teeth, osteoperosios w/no reason, depression. etc..

anyway, vvvvv glglgl. let me know how it goes. lynn

Share this post


Link to post
Share on other sites

my DD was gluten addict before we found out she was celiac - and i mean that!!! she absolutely refused point blank to touch anything that looked like it could be healthy (must be her father's genes!!) Since she has been off gluten, around 6 months, she asks now for raisins or craisins for a 'treat'!! (Long may it last!!)

seriously, i have just been in hospital for a while for severe FTT for my younger one, and they saw he was refusing things that were certain textures, so they referred him to a occupational therapist and speech therapy and physiotherapy, to strengthen his upper body, to give him more tongue movement. they also told me, that a lack in iron will also give him a loss of appetite <_< is that possible? (Not that i've seen any improvement ;) )

good luck and let us know....

Share this post


Link to post
Share on other sites
my DD was gluten addict before we found out she was celiac - and i mean that!!! she absolutely refused point blank to touch anything that looked like it could be healthy (must be her father's genes!!) Since she has been off gluten, around 6 months, she asks now for raisins or craisins for a 'treat'!! (Long may it last!!)

seriously, i have just been in hospital for a while for severe FTT for my younger one, and they saw he was refusing things that were certain textures, so they referred him to a occupational therapist and speech therapy and physiotherapy, to strengthen his upper body, to give him more tongue movement. they also told me, that a lack in iron will also give him a loss of appetite <_< is that possible? (Not that i've seen any improvement ;) )

good luck and let us know....

Good luck, he probably does need it.. It won't or can't hurt anything.. My daughter had p/t and o/t as a young child.. she started p/t at about a year.. I never heard of a lack of iron causing loss of appetite. It can cause constipation however..

Um, what else.. ok Wellshire farms makes gluten-free chicken nuggets, in the shape of dinosaurs. I also have a list of Orida French Fries that is safe to have. Heinz Ketchup is safe for them also.. No kix, oats are ok, but only if they are made in a gluten-free place. otherwise there will be CC..

My daughter was FTT.. Below or just at the 5%. Now, since right before and since the diet, she has gained about 25 lbs, and 5 inches. That was as of July. She will not eat red meat at all will not try it.. But I got her to eat burgers, w/cheese on gluten-free rolls, and she dunks in her favorite salad dressing which happens to be gluten-free..

Improvement can take quite a while- it depends on how the child responds to therapy. Oh, here is something- when they did my daughters first endoscopy, it was negative- but she had um what do you call it-- oh Peptic disease- too much stomach acid. They gave her liquid zantac 2x a day, and what a difference that made. She ate more!! and the next endoscopy, (we had stopped the zantac after about 15 months) and there was no more Peptic disease- it had cleared up. She was not yet diagnosed. This was when she was 4.

vvvvvvvvvvglgl

keep in touch and let me know what happens

lynn

ps is you want any gluten-free info that i have my email is the same mightymouth1234 @ aol.com

And i suggest you join a ROCK group.. it helps alot!!!!!! :)

Share this post


Link to post
Share on other sites
I also have a list of Orida French Fries that is safe to have. Heinz Ketchup is safe for them also..

Could you post the Ore Idea list for me, please? I'd really like to have that!

-Sarah

Share this post


Link to post
Share on other sites

I would advise against giving your child oats even the "safe" ones.

Some people are addicted to gluten & other foods make their tummy hurt but not gluten. For some strange reason this does happen to some.

You have gotten some excellent advice, I will give you a couple of things to think about - cannot say that it will work in your situation. Enlist the help of your son as much as you can but absolutely get him off all gluten AND do not give him any gluten replacements for awhile. Let him pick the acceptable foods that he likes & then pick some things that he thinks he could possibly try (reward?, okay I am a grandmother & I believe in bribery :) )

& yes, it really will be easier since he is dairy free as well. His taste WILL change whether he likes it or not. It takes 16 times to try a food before you develope a taste for that food. (chart? rewards?)

When ALL diarrhea is gone & he is eating a normal-ish diet of whole foods with a couple of the new foods he has tried - & maybe give this a time limit of say 6 months - introduce ONE gluten free thing at a time - with no more than ONE serving a day.

I say this for a couple of reasons, your child needs to heal & it is healthier for your child to learn to eat good foods than to just replace his gluten habits with the gluten-free version.

& hopefully he will feel so much better that he will not want to go back to the old ways...

I have read somewhere that once a child is gluten free for some time that they have seen a lessening in the severity of the peanut allergy. Not that they will ever be able to have them, just that being touched by someone that touched a peanut might not kill them... But for common food allergies , they will get better after some time gluten free & he should not develope more food allergies, like I did growing up...

Share this post


Link to post
Share on other sites
Hi Jenni

Ok, no fruit or veggies? how about the fruit bars that are like fruit snacks?

how about trying salad?

I am small, but my daughter was realllllllly small.. they were classifying her as FTT.. Her blood work was positive since she was 4, but her biopsies were negative. The 1st 2 were definitively negative, where as the 3rd was in the gray area, the pathologist said to base it on her blood work, and we started the diet. lo and behold she has gained 25 pounds and like 5 inches this year..

I would not suggest that you do the gluten-free diet, only because if you do, you would have to reglutenize him for testing..

As for the gagging and vomiting thing, i have seen this before. There was a little boy in my daughters prek program.. It was classed as an O/T problem.. which means he may need occupational therapy.. The little boy i knew had it, and is fine today.. he vomited everthing..

Um, have you had allergy testing done?? I know quite a few people who tested negative on the gluten-free testing, and was proved to be positive thru an allergist when tested.. He could be extremely allergic to something.. This may be your best course of action. I know, I wanted to do the enterolab thing also, but can't afford it either.. Me, my testing has come back negative, but i have what could be symptoms of celiac. enamal loss on teeth, osteoperosios w/no reason, depression. etc..

anyway, vvvvv glglgl. let me know how it goes. lynn

Thanks, Lynn! Actually, Isaac DOES have food allergies, he is allergic to peanuts, milk and eggs (possibly outgrown the egg allergy). So he is on a milk free diet already. I think his limited diet (no milk products or egg products) is what made him such a picky eater, and the few reactions that he has in the past have made him fearful of trying new foods. Just my theory though.

We've tried the fruit bars...it's a no go. We see the GI doctor tomorrow for a follow up, and I'm going to see if they want to do another biopsy or what, before we try the gluten free diet. I don't want to put him through that again, but it's been a year since the last one...maybe something has changed. I am just so anxious to have a diagnosis already so I can make my son better! Right now I think it is either Celiac or Crohn's Disease...either that or some other rare, random problem that we haven't tested for yet.

I think his gagging/vomiting has more to do with the tastes of the foods, but I could be wrong. I'll ask about that tomorrow, too.

Thanks for responding!

Jennifer

Share this post


Link to post
Share on other sites

Crohn's is nothing more than a compliation of celiac that will clear up on the gluten free diet. A lady that I know thought she had Crohn's & then went gluten-free & the Crohn's is gone. She is a vetinarian & was already in the gluten-free cake business because she worked with a vet that had celiac disease & made gluten-free cakes for the office. I met her at my celiac support group. When picking up an order one day - I talked her into getting the Enterolab tests. She was positive for gluten & had a DQ2 & a DQ8. She said she felt better on day 4 of the gluten-free diet & was thanking me several times - & let me tell you she was plenty mad at the doctors for telling her all these years that she had Crohn's & never checking her for celiac...

Share this post


Link to post
Share on other sites
Crohn's is nothing more than a compliation of celiac that will clear up on the gluten free diet. A lady that I know thought she had Crohn's & then went gluten-free & the Crohn's is gone. She is a vetinarian & was already in the gluten-free cake business because she worked with a vet that had celiac disease & made gluten-free cakes for the office. I met her at my celiac support group. When picking up an order one day - I talked her into getting the Enterolab tests. She was positive for gluten & had a DQ2 & a DQ8. She said she felt better on day 4 of the gluten-free diet & was thanking me several times - & let me tell you she was plenty mad at the doctors for telling her all these years that she had Crohn's & never checking her for celiac...

Very interesting...My son actually tested positive for Crohn's via blood work, but when they scoped him, they said they didn't find any evidence of the disease. They did find that he had chronic stomach and esophagus inflammation, scattered eosinophils, and gastritis. But they said those things weren't a diagnosis of any one disorder. Can't wait to see the doc tomorrow and question him 'til I'm blue in the face! We've been actively seeking a diagnosis of some kind for over a year now, and that's after 3 years of our pediatrician telling us that Isaac was fine when we would ask about the diarrhea and slow growth...we had to pull teeth to even see the GI doctor!

Oh...Isaac also complains of frequent backaches and headaches...are either of those a sign of celiac??

Jennifer

Share this post


Link to post
Share on other sites

If the last biopsy was a year ago, he still has symptoms, and he's still on gluten, I think it might be a good idea to have another biopsy. It might be that in this year the celiac has progressed enough to be detectable.

Pauliina

Share this post


Link to post
Share on other sites

Well, Isaac's appointment was a little disappointing. The doctor seems quite positive that the blood work that he did last year was accurate and Isaac had no "markers" and so Celiac isn't a possibility. When I suggested trying a gluten free diet just to see what would happen, he said that would be asking for more problems since we having such a hard time getting him to eat anything right now anyway. And like I've said before, Isaac doesn't eat fruit, veggies or meat, so the doctor doesn't think it's a good idea right now to take away the few foods that he WILL eat.

I'm not totally sold on ruling out Celiac...I've heard of too many false negatives, especially amoung children. A friend of mine has a neice with Celiac, and her mother heard our story and said it sounds exactly like what Isaac has.

For now, we turned in another stool sample, waiting for results from that. And the doctor prescribed an appetite stimulant to try and make Isaac eat more. This makes medication #4 that my poor little guy is on...3 times a day. My husband is a little upset, he thinks the doc is using our son as a "lab rat". I know the doc has good intentions, and is trying to rule things out and try different meds as trial and error...but geez, over a year of this is getting to be a little too much to handle. I hope the lab tests that are being ran this week will have us pointed in some sort of direction. Isaac has only gained about a pound and a half in the last year, and grown one inch. Not good for a child. I wish I could just "fix" him. :(

Thanks for all your help, everyone.

Oh! I forgot to add...I actually got him to try a pork chop tonight!! He ate about 3 bites...without gagging or throwing up! I was SO proud of him!! Maybe we're making a little progress afterall...

Jennifer

Share this post


Link to post
Share on other sites

Your doctor is an idiot. all those problems with the gastritis etc. is just celiac - you have a diagnosis the idiot doctor just has no clue what he is looking at...

yes backaches & headaches are common gluten problems.

your child WILL eat if you take away the gluten - the stuff is lethal. your child is addicted to gluten and is not eating anything but gluten - it will kill him... some kids have an aversion to gluten & some get addicted to it. I have one of each in my family of grandchildren.

Just for your sanity - test thru Enterolab.com - & I hope he is not double DQ1 but I think he might be. DQ1 or DQ3 is the gluten intolerant genes that the docs do not test for. If you have DQ1, which I have two & my whole family has two, plus a few of my friends, it is not good. DQ1 comes with other food problems & neurological problems - hence the headaches, this is in addtion to the plain vanilla celiac symptoms... This can develope into MS, ADD, ADHD, OCD, Dyslexia, depression, dementia, alzheimers, & a host of other stuff.

You & hubby could be spending less time in the waiting room & more time reading some books like, "dangerous Grains", gluten free for dummies, Kids with celiac disease by Danna Korn. contact your local ROCK group raising our celiac kids, those moms can give you their in person stories... & help you along the way.

go with you mommy instincts & get your child healthy!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

If it was your doctor's kid he would be doing something other than pill pushing...

Share this post


Link to post
Share on other sites

It's all about substitution. my daughter was 4.5 when diagnosed. We went cold turkey. For the most part the whole house. I kept a few of my other daughter's favorite things, if and only if I had a comparable substitute for her.

I use Tinkyada pasta, Whole Foods brand Sandwich bread, Lara and envirokids bars. Lots of rice, fruit, veggies and dip (she loves Annie's cow girl ranch). I got rid of all wheat flour (didn't want it flying around, and didn't see why we would bake something that wasn't for her too). I like gluten free pantry pizza and french bread flour, I use it as an almost direct substitute for flour in baking.

She eats yogurt, cheese, gluten-free granola (we like Enjoy Life Cinnamon), eggs, peanut butter and bananas.

The biggest issue is enlisting cooperation and your attitude. Yes, I said mom's attitude. I co-miserate with her when we can't find something she wants, but I offer substitutes and I notice anything that makes a difference. At first it was a week with no sore tummy.... then it was her skin got brighter, now 6 months later it's her nails and toe nails are growing and are strong (they had always been like baby nails). Her hair is getting longer.

I give her a lot of say about what she has within limits. I offer choices and take her shopping with me. We have discovered mexican food. She is thrilled when something is "safe for me" and will try most things that are now (didn't used to b/c was at war with her tummy). It takes a lot of planning ahead. I keep special snacks at school so if someone shows up with bagels or cupcakes, she can pick one out of a bag.... Lara bars, apple chips, even a few pre-packaged cookies, so she doesn't feel left out). I call ahead for birthday parties and ask what they are serving and send an equivalent (ie pizza and cake.... we make english muffin pizzas in the toaster over, and she can pick a treat, I keep cupcakes in the freezer, or she can frost a cookie or just have icecream if it will be offered).

The biggest difference for us was recruiting her that this might make her feel better. I can't tell you the last time she complained of a sore tummy.... makes it all worth while.

Stick with it, it's worth it. If you really do it throughly, you will know within a few weeks if it's going to make the difference.

Best of luck.

Share this post


Link to post
Share on other sites

×
×
  • Create New...