Spin-Off: Gluten-free? (help, Liza!)

[Melaine]

(Liza, I've seen a lot of your threads since you guys have changed your diet and your Celiac's (sp?), but until I just read Bill's thread about his son it didn't occur to me it might apply to my kids.)
So, could you give me a quick synopsis of how I could go gluten-free for my girls for a week or so just to see if it makes a difference for them? (Like, for someone who doesn't really know what all gluten is in:loveeyes:) Or could you suggest any resources I could look at? Obviously, anyone else please chime in, I just know Liza has BTDT recently.
I have always suspected a food allergy of some kind and even did some elimination diets when the girls were younger but I keep coming back to "this is just how they are". Reading Bill's thread makes me afraid that they won't just grow out of it, and I shouldn't give up searching for a solution....Thank you for your help!

[justlearning]

I'm not Liza :) but I'll chime in...

Do you have a Vitamin Cottage (or a similar health food store) nearby? Our local Vitamin Cottage offers gluten-free tours of their store all the time, pointing out the products that will work well for you.

You can also get good ideas of products by walking through a store like that or Whole Foods. For example, there's soybean pasta that's gluten free (just made out of soybeans). No one's on a gluten-free diet in our house but we all love the green soybean pasta (we don't like the black, though) and I make it often to switch things up from our wheat pasta.

You can also get gluten-free tortillas made by Ezekiel 3:4 there and other gluten-free products like rice-based pizza (Annie's brand has one). And, of course, you can still eat lots of normal foods too--I'm just trying to give you a few examples of substitutions for wheat-based products. I'll let the other parents offer you more tips. Good luck!

[jren]

Are you concerned that they have Celiac disease or just a sensitivity? Just asking b/c if you are thinking Celiacs, then you would need to get them tested for it while they are still consuming gluten. If you eliminate it now, it will be hard to get a correct diagnosis. My DD has a strong family history of Celiac's (bio mom and bio grandmother), so we are considering testing, even though she's showing no signs. Her birthmom is just now showing signs and getting dx at 21.

[mytwosons]

DS1 has celiac. From everything I've heard, gluten can take six months to get completely out of your system, so you need to commit to a pretty long trial. My son is a completely different child, but it did take months.

[specialp]

Someone (maybe Beth, just not sure) suggested this blog for recipes and I love it.

http://healthyindulgences.blogspot.com/

[ThreeofUs]

... how I could go gluten-free for my girls for a week or so just to see if it makes a difference for them?


Hi, Melanie--

As a pp said, a week won't do it to clear the system, but a month without gluten might help with associated symptoms (like behaviors, skin reactions, etc.)

A google of "celiac kids" will bring up some great sites to help you understand and approach the problem.

GL!

[lizajane]

celiac.com has a message board that i find helpful. there are lists of where gluten is hidden, what ingredients to look for, things that are NOT gluten free, things that ARE gluten free, etc.

i would try to eat fresh food that does not EVER contain any wheat, malt, barley or rye. fruit, veg, meat, dairy. you will need to check the diary and meat to be sure that there are not additives and if there are, then check the lists on celiac.com or just gluten the ingredient and "gluten free" and i betcha a link will come up.

trader joe's has a gluten free product list on their website and someone will walk you through the store. there is a G symbol on products that are gluten free and even products without the symbol may be gluten free- you will see wheat, malt, barley and rye if there IS gluten in any of their products.

gluten free is more than just not eating wheat. you cannot expose your foods to gluten. you can't put an apple on a countertop that had flour on it and then eat it. it has been contaminated. things that get contaminated and stay contaminated (even after washing) are, for example, wooden utensils, stoneware/baking stones, teflon coated pans, wooden cutting boards.

you can't pick up a piece of whole wheat bread, put it down, then pick up a gluten free item. you have to wash your hands in between. you need to either use a dish or foil etc in a toaster oven, or get a gluten free only toaster. toasters are full of bread crumbs and will contaminate your gluten free toast.

i DO eat foods "processed in a facility that also processes wheat." but it depends on folks sensitivity and the occasional factory contamination.

i DO eat out. chick fil a, wendy's, hardees have gluten free info on their websites. at chick fil a, we get the chicken filet- no bun (prepared with no bun, you can't just take the bun off) cut it into strips and let him dip in it their heinz ketchup. their french fries are cooked with only fries, so they are not contaminated by nuggets frying in the same oil. their chargrilled chicken salad and ranch dressing are also gluten free, as long as you do not add seeds or croutons.

the important thing to remember is that you cannot just TAKE OFF the gluten containing item. the foods must start gluten free and never come in any contact with gluten containing items.

kraft, yoplait, oscar meyer, breyers, ben and jerrys, edys will all say wheat, malt, barley or rye in their ingredients if they contain gluten.

OATS are considered contaminated in the US because they are GROWN with wheat. so no oats, oatmeal, etc. unless is states that it is gluten free.

finally, gluten free foods and mixes are VERY expensive. VERY. try to find naturally gluten free foods whenever possible and only add in the occasional snack or treat. (FYI- most fruit snacks, cheetoes, orville red. popcorn, cool ranch doritos- NOT nacho cheese flavor- tortilla chips are gluten free.)

it sound SOOOOO hard. but really, it isn't. dylan and i get by just fine nearly all the time. oh- and snickers are gluten free. that is how i save dylan from sadness when his friends are having cake or other treats.

[lizajane]

Hi, Melanie--

As a pp said, a week won't do it to clear the system, but a month without gluten might help with associated symptoms (like behaviors, skin reactions, etc.)

A google of "celiac kids" will bring up some great sites to help you understand and approach the problem.

GL!

depends on how long they have suffered, what the damage is and how sensitive they are. for dylan is was 3 days. for me, it was nearly overnight. symptoms just get better and better and better with time.

if you NEED a diagnosis, you have to get one before you go gluten free. blood tests are VERY unreliable in children. VERY. even my blood test was negative. i had an endoscopy and biopsy that gave me a diagnosis. i was NOT interested in putting my 4 year old to sleep to stick a thing down his throat for a biopsy. the change was enough for me, for a diagnosis. there is no medication required- just the diet change. and schools don't need a doctor note to NOT give your kid certain foods. PLUS, a gluten intolerance will not necessarily show up on any tests. just like lactose intolerance may not appear on a milk allergy test.

not trying to be combative, i am just sayin'.

[Melaine]

Thanks so much to everyone, this is really helpful. From what I have seen/read I am thinking there is a possibility of gluten sensitivity, but I don't suspect actual celiac (then again, what do I know). I am going to be reading up on this over the next week. DH's parents are with us this week from China so I'd like to try the diet change the week after.
I definitely want to try dietary changes myself rather than visit a doctor. My girls aren't having stomach issues or anything like that, so this is experimental at best, a stab in the dark at worst.
If our issues are mostly mood/attitude/emotional/sleep issues do you think that it is unlikely to be related to gluten? I'm asking because when reading a list of symptoms online I am seeing mostly physical symptoms. Then again, I guess I have no way of knowing if their tummies are hurting either at this age....

[ThreeofUs]

depends on how long they have suffered, what the damage is and how sensitive they are. for dylan is was 3 days. for me, it was nearly overnight. symptoms just get better and better and better with time.

not trying to be combative, i am just sayin'.


Hey, for me it was the same. I started to feel better almost immediately when I stopped eating gluten. I hear your enthusiasm, and I know you're trying to show Melanie how quickly going gf can make a difference.

But if you talk to a lot of other folks - those with a dx and those just trying it out - you'll hear that feeling better ranges pretty wildly by person and by symptom. While behaviors can clear up quickly, I tell people a month because that's usually how long visible things like skin reactions take to respond.

And I think it's important to set realistic expectations. Telling someone that the fix is quick can set an expectation of fast/easy resolution that can't be met. Especially with dietary changes, you want to help someone give enough time for the changes to work, and not throw in the towel after a few days.

Thanks for the "not being combative"; I didn't take offense at your viewpoint.

[ThreeofUs]

If our issues are mostly mood/attitude/emotional/sleep issues do you think that it is unlikely to be related to gluten? I'm asking because when reading a list of symptoms online I am seeing mostly physical symptoms. Then again, I guess I have no way of knowing if their tummies are hurting either at this age....


It could be, but the only way you'll know is to try cutting things out.

My niece has multiple intolerances and becomes a different girl when she eats something that bothers her. My SIL went through Johns Hopkins' Dr. Brown (a fantastic pediatric allergist), DN has had multiple scopes (to check for intolerance reactions), and frankly they are still just going on behavior changes.

The key is being strategic and very organized about what you cut out and then add back in.

That being said, we just had DS1 tested for allergies. He showed a corn allergy, which accounts for his poor behavior and stomach ache when he ate anything with corn or corn derivatives (like corn syrup). You might want to start there, if you think your DDs have a dietary reaction going on, as it's a bit easier.

Still, as Liza said, allergy testing with littler kids is not as predictive as with older children and adults - and you certainly won't get any results for intolerances with allergy testing. Allergy testing only looks for a histaminic reaction; with intolerances, the reactions are not controlled by histamines.

Good luck, though, and keep trying! I'm sure you'll find something that helps your little ones.

[lizajane]

If our issues are mostly mood/attitude/emotional/sleep issues do you think that it is unlikely to be related to gluten? I'm asking because when reading a list of symptoms online I am seeing mostly physical symptoms. Then again, I guess I have no way of knowing if their tummies are hurting either at this age....

my issues were nearly ALL mood/attitude/emotional/sleep along with fatigue, foggy brain and weight gain. dylan's main issue was sleep disturbance then irritability. he did have a poked out tummy and gas. but did not express verbally that his tummy hurt. he is also short.

[spanannie]

If you want a reliable test, you can order one from http://www.enterolab.com
You send them stool and mouth (saliva) swab. Stool is reliable, blood is not, since the blood results can vary, based on what you've been eating.

[mytwosons]

but did not express verbally that his tummy hurt.

My son never complained of a hurt tummy because his baseline was off. His normal was pain and he couldn't remember a time that was different. It was only after he went GF that he realized his stomach had been hurting and it wasn't normal to feel that way.

[lizajane]

My son never complained of a hurt tummy because his baseline was off. His normal was pain and he couldn't remember a time that was different. It was only after he went GF that he realized his stomach had been hurting and it wasn't normal to feel that way.

this is what i think caused dylan's extreme irritability. he didn't realize that he officially "felt bad." he just felt bad.

[Melaine]

Thanks again for all these responses (and please feel free to add more). I am feeling even MORE desperate since I made the OP. The girls' sleeping is continuing in a downward spiral. It is making all of us literally miserable. They are perpetually tired and cranky and whiny and I feel like I cannot handle it. The last couple weeks I have been feeling bad too and a lot of my stomach issues are coming back since getting off prozac. I'm going to try taking Magnesium and hope that will mellow me out enough to get to the gluten-free trial starting next week. SIGH