Am I Allowed To Swear?

[loveday]

Just out of frustration by all this...no?...okay, then I'll give you the backstory.

My 2 yr old ds has some developmental delays. Unexplained for the most part but a lot of his problems have to do with low muscle tone. He's caught up for the most part with gross motor skills and almost there with fine motor skills but isn't talking yet and he is a little behind cognitavely. We have ruled out autism.

My mother thinks it could be Celiac's and has persueded us into doing the gluten-free diet with Ethan even though he has no symptoms (ie runny poop, food issues, bloatedness, etc) and the test came back negative.

My thoughts have been that it probably isn't a gluten thing, but it can't hurt to try it, right? I talked to his pediatrician who is actually quite supportive about this, says that if we wanted to try this, it couldn't hurt, but did warn me that this

is the hardest and most expensive diet to try. And boy was she right!

I am so frustrated after a couple weeks of this! I've seen no changes in his development, but the boy is pooping more than ever before! And when he's not pooping, he's gassy. Aren't they supposed to be this way when they eat gluten? It's like going gluten-free has had the opposite affect on his system. And he's now really cranky too. I'm afraid because I seem to be constantly denying the kid food. He loved chicken nuggets but those are off the list. He can't have what I'm eating and I'm constantly standing in the middle of the kitchen muttering about food these days. My husband is trying to be supportive but a man can only take so much.

When can I see results? How long should I stick with this if I still don't see any changes? A month? Two months? Six months? And how the heck do I tell the difference between normal developmental leaps and gluten-free developmental leaps?

Meg

mom to Ethan, 25 months

[Rachel--24]

If you're son is Celiac he may have lactose intolerance as well as problems with gluten. If the gassy, bloating type symptoms persist maybe try eliminating dairy. It is very common for people to be intolerant to dairy during the healing phase. Also other food sensitivities can also show up after going gluten-free. I would give the diet more time though...2 weeks is not that long. My first week was horrible due to withdrawl symptoms which can also occur. Also make sure he's not getting even trace amounts of gluten. To know if the diets working he will have to be 100% gluten-free. Seperate toaster (if he eats toast)...check lotions (even yours)...basically anything that can get into his mouth should be checked to make sure its gluten-free.

It is a hard diet but worth it if he is sensitive to gluten. Hang in there and hopefully you'll see some improvement soon.

[loveday]

A seperate toaster? Are you kidding me? Okay, I know you aren't, but sheesh, I didn't think the little wire rack in my toaster oven would be a problem.

And he's never had a reaction to dairy before - I kept an eye out for that because my brother has dairy sensitivities. How complicated/expensive would taking dairy out of his diet be? I mean, he loves milk and yogurt and all that. It's been hard enough doing the no gluten thing, how much harder is going no dairy?

Please don't think I'm a horrible mother who's more concerned about complicating life than her son's health. It's just that we're already strained financially after the trip to the neurologist, and I'm slightly frazzled with therapy and spending too much time on the internet trying to figure out what's wrong with him knowing that there may not be an answer, and trying to do this diet mostly to please my mother and to see if it helps ds in any way.

Meg - one stressed-out mama

[Matilda]

...

[loveday]

No, no one in the family has it that we know of. My mom has a friend who has Celiac's so that's how she first heard about it. She also spends way too much time on the internet and has been trying to help me figure out Ethan and his issues. So far, it's been a brick wall and we've hit a "Well, it could be worth a shot to try" stage with things.

And yea! I can swear about it

The toaster thing got me thinking - if I need a seperate toaster, what about pots and pans, dishes, utensils, cups? Do I need seperate ones for ds too? I mean, how far do I have to go in this to get an honest result? Is this like a severe peanut allergy where even a slight trace can bring about awful reactions?

Meg

[Rachel--24]

Yeah...I was serious about the toaster.

I don't know what made your mother decide he could be celiac but if he is and you only partially eliminate gluten it will still make him sick. Even a crumb can make a celiac sick so a seperate toaster is pretty essential on a gluten-free diet. Also things like using the same knife in a jar of peanut butter or jam. I dont mean to overwhelm you but these are important things to know about the diet.

I understand you're just "trying" it out right now but its kind of an all or nothing diet if you want to see results. The lactose intolerance sometimes shows up after eliminating gluten and its usually temporary so if he had that it would likely go away. Just something to think about if he doesnt improve. If you eliminate dairy for a week or 2 and the problems persist then you know its not that.

[Rachel--24]

  loveday said:

The toaster thing got me thinking - if I need a seperate toaster, what about pots and pans, dishes, utensils, cups?  Do I need seperate ones for ds too?  I mean, how far do I have to go in this to get an honest result?  Is this like a severe peanut allergy where even a slight trace can bring about awful reactions? 

<{POST_SNAPBACK}>

The main things would be the toaster and he should have his own jars of p.b., jam, mayo...seperate butter. Basically anything that may have traces of wheat crumbs should not be shared. Trace amounts still cause damage to Celiacs...its not the same as a peanut allergy...but it can still cause unpleasant reactions. You dont need seperate dishes...just make sure his are clean and free of crumbs. Wooden spoons and pasta strainers are things that cant be cleaned of gluten so you would want to not share those.

Hope this helps.

[Guest nini]

the diet does NOT have to be difficult and does not have to be expensive. Stick to foods that are naturally gluten free, fresh fruits and veggies, plain meats (chicken, fish, beef, pork), rice, potatoes to start... take him back to very very basic foods for week or so, then you can start to add in one new product at a time and keep a journal to track if he has any reactions. Do a google search on the elimation diet for some helpful hints on how to do this.

There are a lot of foods that are naturally gluten free, and the longer you research this, you will find that you don't have to spend a lot of money.

I keep my grocery bill to a minimum, especially since my husband just quit his job and I only work part time.

If you need any suggestions for specific products (mainstream and specialty) that are gluten free and safe feel free to PM me. or E-mail me at nisla@comcast.net

re: pots and pans, if you have glass or stainless steel, a good washing and/or run through the dishwasher should take care of it. If you have non-stick cookware, you will want to invest in separate pots and pans just for the gluten-free cooking. You can also put a piece of aluminum foil in the toaster oven if you don't want to buy a new one, but also, your rack should be removable and washable.

[Guest nini]

also be careful of wooden cutting boards, wooden cooking utensils etc... I bought a set of stainless steel cookware so that I wouldn't have to worry about this. (but now my husband is gluten-free too so my entire kitchen is now gluten-free)

[loveday]

  nini said:

the diet does NOT have to be difficult and does not have to be expensive. Stick to foods that are naturally gluten free, fresh fruits and veggies, plain meats (chicken, fish, beef, pork), rice, potatoes to start... take him back to very very basic foods for  week or so,  then you can start to add in one new product at a time and keep a journal to track if he has any reactions. Do a google search on the elimation diet for some helpful hints on how to do this.

There are a lot of foods that are naturally gluten free, and the longer you research this, you will find that you don't have to spend a lot of money.

<{POST_SNAPBACK}>

If could do that, but then I have to switch everyone's diet. Ds is in this stage where he wants to eat what we're eating. So if I have a sandwich, he wants one too. He also has texture issues due to SID and balks at a lot of fruits - apples and bananas are about it for him. And I will be honest, I'm lazy. I hate cooking breakfast so we're a cereal family unless dh's up to cooking. Dh's been supportive of this so far but only b/c my mother is SO insistant that we try this with ds that the only way we can get her off my back is by doing it. But if I take away all the gluten in the house, I think dh will rebel. So I spend the extra money on stuff to keep ds and dh happy.

About the elimination diet - what would be the point of eliminating everything but like meat, fruit and veggies? And what would I add in?

This is just all so complicated. I was just wondering how long it would take to see results if we were to see results and now I have to get seperate pb&j and butter and eliminate foods and dairy and my poor toaster oven

And are McDonald's french fries okay at least? I know the chicken nuggets are out, but some of the moms and kids from my mom's group were going to meet there but what's the point if ds can't eat anything?

[Jnkmnky]

post fruity and cocoa pebbles are gluten-free

so are/is

prego pasta sauce

bush's baked beans

oscar mayer bologna/hotdogs

hormel salami and pepperoni

Classico brand alfredo sauces *even the creamy, white ones*

Tuna

Hellman's/Bestfoods mayo

Gulden's mustard

ketchup

Tacos *use old el paso taco sauce in a jar*

Velveeta cheese in a giant block. Make mac and cheese with TINKYADA pastas.

*use the tinkyadas-they're the best*

Nachos

Corn tortillas- put on frying pan with a small pat of butter, layer on cheese, lettuce, old el paso salsa and pre-cooked chicken. Put second tortilla on top and cook a few minutes. Flip. Cook a few minutes. Serve with a side of sour cream.

Chili-homemade

Chicken soup

Beef stew

Stuffed peppers

Bacon

Eggs- scrambled, deviled, salad, etc...

Order bread from this company..

Open Original Shared Link

The shipping is only $10 per $200 order. The donuts are great. Half a donut is enough for a young kid, so don't let the price throw you. You'll actually have twice as many donuts as indicated. The Pizza crusts are great. Make him HALF a pizza. Don't tell him his is different when you have pizza night. He won't know you're eating regular pizza. The white tapioca rice and Italian white bread are fantastic. Make half sandwiches and suppliment with some nuts or side of something he likes that way the bread lasts a long time and you don't feel the $$$$ crunch. I

[Rachel--24]

  loveday said:

And I will be honest, I'm lazy.  I hate cooking breakfast so we're a cereal family unless dh's up to cooking.

<{POST_SNAPBACK}>

I can relate to that! My whole life I never learned to cook...it was all about convenience for me. Fast food, microwave dinners and mac & cheese. Now I cook everyday. Meats, veggies....pretty much all the stuff I hated to eat before I got sick.

Its amazing what we can do when the results are positive though. I made the adjustment pretty quickly and with the use of this message board I just knew what I had to do and it worked out well for me. I think the more informed you are the easier it really is.

As for McDonalds (my fav. restaraunt pre-gluten-free) the fries are suppossed to be gluten-free but only if they are cooked in a dedicated fryer. Like if a nugget was cooked in the oil the fries would then be contaminated. Its just like rolling dice...you may get lucky or...not.

[Jnkmnky]

You don't have to switch everyone. Your son can't dictate the financial burden of this dietary challenge unless you allow him to. He's old enough to understand "no" when it's best for the family. Make it positive by calling the gluten free items "HIS" and point out that you and your husband "CAN'T" have his stuff. That may provide the ownership over the food that his ego needs to feel satisfied. Write his name on HIS jars of mayo, pb, cream cheese, etc and let him put a friendly sticker on HIS items so that he can further identify them in the pantry or fridge. As long as you all have a positive dialogue regarding HIS food, he'll accept the differences.

[Guest nini]

you sound like my sister! do what you feel is best for your family, but I'm telling you, it is much easier, especially if you are the cook, to do only one meal at each sitting. It just takes a little planning and then the cooking isn't overwhelming. I devote only one or two days a week to cooking large quantities, and freezing things in individual portions so that I've always got food in the house.

The benefit of doing the elimination diet is as you add foods back into his diet you can track any other food intolerances.

As far as DH is concerned, you can tell him he can eat whatever he wants OUTSIDE of the house, but in the interest of keeping your kitchen free of cross contamination concerns and saving you from having to buy two of every condiment and throwing something out if it gets contaminated, it's much simpler in the long run to keep the entire house gluten free.

I know I sound extreme, but it's really in the interest of expense and simplicity. I'm very lazy. I refused to cook separate gluten containing meals for my husband. Eventually he started eating what I was cooking and liked it better. He also gained too much weight when he decided he was going to live on gluten containing cereals and frozen entrees when I decided to stop cooking two meals. When he is out in public I'm sure he still eats gluten, just not in the house. It really is easier this way for us.

If you take your son to McDonald's he can have french fries (if it's a dedicated fryer) and they also have the apple dippers, you don't have to give him the caramel dip if you don't want to, but he can munch on the apples

[Guest nini]

look at why you don't want to switch your family's diet. Is it that they are just used to their comfort foods? or is it that you think that the gluten free diet is restrictive and not healthy for people without celiac? if that is the case, that is simply not true as long as you stick to a diet of foods that are naturally gluten free.

[circeannc]

lazy about breakfast? me too! my 2 1/2 year old has been eating the same breakfast for the past three months. we can get Van's gluten-free waffles at our local mainstream grocery store, just make sure you get the ones with the Wheat Free banner across the front (they also make regular ones) and Jones All Natural Mild Link Sausages, and of course, Aunt Jemima's Original Syrup. she loves it and it takes 5 minutes!

i don't find the diet too expensive and i have a VERY picky eater. the one thing that has worked with my daughter, but may not with your son is that when she wants something we have, we just tell her that it makes her sick. she knows what that means and looses intertest very quickly.

well, i hope everything works out.

[Jnkmnky]

  nini said:

look at why you don't want to switch your family's diet. Is it that they are just used to their comfort foods? or is it that you think that the gluten free diet is restrictive and not healthy for people without celiac? if that is the case, that is simply not true as long as you stick to a diet of foods that are naturally gluten free.

<{POST_SNAPBACK}>

If you want to convince non-celiacs to go gluten-free, reading Dangerous Grains is a good place to start.

[Guest nini]

I've read Dangerous Grains, and the is actually how I got my non celiac hubby to go gluten-free at home.

I just think the typical American diet is so full of garbage and is completely unhealthy anyway. Why on earth anyone would willingly want to continue eating that way after learning about the alternatives to it is beyond me.

[loveday]

Uhhhhhhh...where to respond first...lol!

I can't make it all "special" for my ds. He's barely two and with delays. He just doesn't understand these things. Labeling jars and such with his name will benefit dh and I though (I went out and bought a different brand of pb and jelly today so I'd have that visual.)

Dh is being cooperative and not complaining about the cost, but I don't want to push him too far. He grew up in a big Italian family, so it could be a comfort food thing. Pasta and breads are huge in his fam. Not to mention it's very easy to throw some pasta on the stove, open a bag of salad and call it dinner. I did get some of that gluten-free pasta, that quinona (sp?) stuff.

And to throw it out there, with his fine motor skill delays, we're still trying to get ds to use a fork and spoon so it's all about finger foods, which plays into the whole texture issue...he won't touch anything "slimy" - like melon and kiwi and oranges - yeah, we're full of issues around here

Of course, the hope of this diet is that these issues will fade.

Which brings me back to my original question - how long will it be before I see results if indeed this is it? Maybe I should just start a new thread.

[Jnkmnky]

My son was three. He showed mind-blowing improvement within four days. Tinkyada pastas are the best. Quinoa is kinda gross. We had stuffed shells with Tinkyada brand pasta last night. YUM. Can not tell the difference. Promise. Get Chebe and make bread sticks. Load up with the garlic salt and brush with butter.

Open Original Shared Link

[Rachel--24]

I agree Quinoa is WAY gross. I threw it out after just a couple bites.

Tinkyada pasta tastes just like real pasta to me. I don't know what Quinoa tasted like but it definately wasnt pasta.

[Guest nini]

Quinoa pasta is nasty, Corn pasta is nasty, Tinkyada tastes just like regular pasta. Chebe Bread is AWESOME!!!!!!

My daughter was 3 and showed amazing improvement in 3 or 4 days

[taweavmo3]

Well, in our case, my daughter's developmental delays have been slowly progressing. She has been gluten free for 8 months, but I would say that only recently have I begun to see some major improvement. However, she still has a LONG way to go. She still functions much like an 18-24 month old, and she still speaks in a lot of jargon that most of us can not understand. She is finally starting to pretend play, which is a very positive thing. At her evaluations two months ago, she couldn't do that.

I've talked to several other parents about this, and every one of them have said that it takes time.....alot of time. I'm not a patient person by nature, and I was hoping to see drastic developmental changes, since we did see drastic physical changes. But, it has been a slow process for us. It doesn't help that we've had a couple of accidents in the past few months, which send her into a speech regression.

Oh, and I wanted to echo what someone else said about lacose intolerance. My daughter never showed a reaction to dairy until she went gluten free. My 18 month old has always shown a reaction to milk, but it was much, much worse after going gluten free. I see this as a positive sign that I am on the right track.

OH, one more thing. Have you read "Unraveling the Mystery of Autism" by Karyn Sourissi??? I know your son doesn't have autism, but it had really good info on how to help any child with develpmental delays with supplements, and a gluten-free/CF diet. It's also just a really good read. I have been giving supplements recently to my dd, and I am starting to see some changes. (like pretend play!)

Anyway, sorry for the novel! The diet seems so drastic at first, but it will get easier. Give it some more time, you really have nothing to lose at this point. He may put up a fight at first, but he will adjust. My little girl still puts up a fight sometimes, since it is a very hard concept for her to grasp. But, she gets over it quickly now and moves on. Good luck, I think you are doing the right thing!

[Jnkmnky]

  taweavmo3 said:

She is finally starting to pretend play, which is a very positive thing.  At her evaluations two months ago, she couldn't do that.

<{POST_SNAPBACK}>

HAHA! Um, my son is a major pretend player. Talks to himself- the whole thing. Totally imaginative. I attribute it to being "trapped" in his own mind and unable to communicate for the first three years. The things he comes up with are so funny. I think he'll be a writer. He has the most original ideas.