help with wheat allergy/ intolerance

[Anonymous]

Hi guys,

Well, I’m now suspecting that in addition to being MSPI and everything else…I’m wondering if Lucas might have a problem with wheat.

For you experts on this issue….do I just remove wheat or all gluten to see what’s going on? And is there a good link to a web-site with information regarding what has gluten and what to eat in lieu of wheat and gluten products? What do you give them, rice bread? Does it taste horrible?

Lucas is getting over his latest bout of teething and has been sleeping much better (better by our standards, not normal standards) and I have been experimenting with not giving bread for a few days and he seems to be going to sleep much earlier and much more regularly for naps….He ALWAYS has the allergy dark ring under his eyes, and aside from sleeping issues and reflux discomfort now and again, no other obvious symptoms.

I know it’s considered a common allergen, but I couldn’t bring myself to eliminate wheat from his and my diet after eliminating so many other things. Well, I guess I’m ready to experiment again, because I want some sleep!!

Thanks for any info!

[Anonymous]

Hi Anne, we recently figured out that Ally has a problem with wheat. I started by eliminating that and figured that if I still saw symptoms then I’d go on to eliminate all gluten. We saw a big improvement with just the elimination of wheat, and we give her rye bread instead, although she doesn’t really eat much bread so I rarely give her that.

[Anonymous]

Anne, when we started we eliminated all gluten, but her allergist suggested that we focus on wheat only. We’ve still only used the gluten free bread. It’s not too bad as toast, but it’s a little too much like cardboard to serve on its own. There are also some bread mixes that we’ve bought, but haven’t tried yet. I’ve read that they aren’t bad.

She doesn’t eat a lot of bread, so it hasn’t been much of an issue. Rice pasta really isn’t bad and there are a lot of gluten free muffin mixes that have been pretty good. Bob’s Red Mill makes a really good pancake mix and a good brownie mix. Both are dairy and gluten free. Good luck!

[hellbennt]

anne,

here’s what I found from a few recent threads:

here’s wheat free info from whole foods, complete w/ a link to a ‘shopping list’; http://www.wholefoodsmarket.com/healthinfo/list_wf.html

here’re some recipes: http://www.kidswithfoodallergies.org/recipes.html

VegWeb – great site for getting egg/dairy free recipes. If you’re not vegan, you can add meat/chicken to some of the recipes .. great site to get baking recipes that don’t use eggs and dairy.
http://vegweb.com/

and kim (pkkb)
krista (kpcallen) have posted a bit- you could do a search of their recent posts…

hope this helps,

~laura

[Anonymous]

anne, we’ve been cooking gluten free for 2 months now—-and it hasn’t been as hard as i thought it was going to be. if you want to go completely gluten free, baking works best when flours are mixed—-and you have to use xanthan gum to replace the gluten in cooking. we’ve had alot of successful baking.

if it is a wheat allergy, you don’t need to eliminate all gluten—-unless you suspect celiac. if you suspect celiac, you need to have blood work done BEFORE going gluten free.

[Anonymous]

Thanks, guys. He’s just continuing to fall asleep much quicker and to be more predictable with times of sleepiness, etc. etc. I’ll let you know how it’s going in a week or so. We got some spelt bread today and I used rice pasta in dinner, it was really good!

Thanks again

[Anonymous]

I’m glad that it seems to be going well!

I could be wrong, but I think that spelt bread is actually just another form of wheat. I know that I picked it up at the health food store and had to put it back because it had something in it that wasn’t allowed in Kaelyn’s diet.

[Anonymous]

Kim,

Thanks for the warning. I’ve got my spelt bread here nad it says Rudi’s Organic bakery, Spelt, Wheat Alternative Bread, “A wheat Alternative Note: if you have wheat or gluten allergies, we recommend you consult your doctor regarding which cereal grains you should avoid before eating this bread. Spelt bread may not be digestible by some people with certain wheat and gluten allergies.”

What the heck does that really mean? I’m bummed, cause it tasted good! haha. Anyway, what kind of bread do you feed her? Where do you shop for your stuff? I found rice pasta and it was great, dh didn’t even notice the difference. We also found a cereal for Lucas– Puffins by Barbara’s Bakery, which has corn and oats but no wheat. Is there a web-site you used with guidance for all this stuff? Is your lo totally allergic just to wheat? When you stopped wheat products, how quickly did you see a difference in her sleeping, or other symptomatic things? Thanks again for all the info you’ve provided.

[Anonymous]

christine,

Thanks for the info. Have you found a good combination of flours for baking breads and cookies? I LOVE to bake and haven’t really even thought of what I’m going to do with all that–we’ve really just begun to be totally wheat free. (And I’m guessing it’s hard to find cookies at the store that are wheat or gluten free.) Also, do you have a good link for info on celiac? I don’t suspect it yet, cause I really don’t know anything about it, but I’ll start checking up on it. Thanks again.

[Anonymous]

Anne, we use Corn Bread by Glutino. It’s not bad if you toast it. It comes frozen. We’ve found that it tastes better if we let it thaw out first and then toast it. A few times we’ve forgotten to leave some out to thaw and we’ve microwaved it, but it always ends up with hard spots. We’ve tried a few other kinds, but have found this one to be the best. They also sell a raisin bread that’s not bad.

Kaelyn really likes the Puffins cereal. It’s the kind that she requests most often. She also likes Erewhon Gluten Free Crispy Brown Rice (it’s like rice krispies) and Gorilla Munch by Enviro Kids. I’ve tried them all and they aren’t bad.

We have found a lot of sites to be helpful, but I haven’t found any one site that’s really great. I am hoping that Christine has one found that has been helpful to her. I’m also looking forward to hearing what flours she has mixed together. I’ve tried a few things, but I definitely haven’t found the “right” mix yet. The Gluten Free Bakery makes a muffin and scone mix that is pretty good. I just add blueberries to it. They don’t sell a lot of wheat free/dairy free cookies and the ones that they do sell are generally pretty bad. However, the Fig Newmans aren’t too bad. Kaelyn goes back and forth on them. One day she’ll love them and the next she’ll be spitting them out. I think that’s more toddler pickiness than anything else.

Kaelyn’s rash was greatly improved within a week of us dropping dairy and wheat products. We hadn’t really had an issue with her sleep prior to the diet change, but after the change we noticed that she was much less restless in her sleep and she seemed more rested during the day. Again, I’d say that it was within a week or two.

We don’t have any of the major “health food” chains locally although I’ve shopped at Whole Foods and Trader Joe’s when visiting family. We have 2 different small healthy grocery stores that carry a lot of options. The local Kroger has a decent section of foods to choose from and their is a local chain that has one location with a great health food section. Between the four different stores, I’ve managed to find a lot of choices. I spend a lot more time shopping and searching out items now, but it’s definitely been worth it. I hope this helps!

[Anonymous]

Kim,

Thanks, that helps alot. Well, I gave him bread today for hte first time in a week and it was the spelt loaf and sure enough, tonight going down for the night was more difficult and lasted longer like things always used to be. I’ll be buying a different loaf tomorrow. Do you mind me asking where you live? It sounds like you’ve found some good options….I was at our local health food store– very similar to Whole Foods, and didn’t see wheat free loaves of bread, but maybe I need to be looking in the refrigerated section? You mentioned it being frozen? I also didn’t see a lot of gluten free options, maybe I was looking in the wrong places, cause if any store is going to have that stuff, it should have been this store. A friend of mine used to get the brown rice bread from Trader Joe’s (no allergies, just trying different stuff) and said it was very moist. Maybe we’ll try that, too. I’m thinking that dairy, wheat and soy free is going to be a real challenge when it comes to the baked goods section, so I’m hoping Christine has some yummy suggestions, too!

Also, I seem to remember reading a long post of yours a while back when you first found out she was allergic…was it an allergy test at an allergist’s office that finally let you know? What test did you have done, and how old was she? How reliable did they say the results were? My ped talked to me about allergy testing in December and said the results are pretty unreliable for kids this young (he may have been only talking about the blood sample test, though) and made me kind of think it might not matter to do testing. I’m now kicking myself for not doing it sooner. Up to now, Lucas has had no allergy testing and never been to an allergist. I’ve just noticed such improvement from removing certain foods (trial and error, elim diet strategy) on my own that I assume he’s got intolerances at the least and allergies at the most. Thanks again for all the info.

[Anonymous]

you should see my pantry—i have so many different canisters of flour in there now—-white rice, brown rice, sorghum, corn starch, tapioca starch, potatoe flour, potatoe starch, corn meal, soy flour, garfava flour, sweet rice flour, egg replacer, xanthan gum. in the fridge i have rice bran, almond meal and flaxseed meal. we have used bette hagman’s featherlight mix for most of our baking. it is a blend of white rice flour, tapioca starch, corn starch, and potatoe flour. i used brown rice flour the last time i mixed it. i am trying to put a little more nutrition into it. i sometimes add rice bran or flaxseed meal–or both. we have used alot of our old recipes and just replaced the wheat flour with our GF flour mix and add xanthan gum. we’ve done some pretty good baking so far. i also use a mix that has sorghum flour, almond meal, corn starch and tapioca starch.

i just got a new grain mill last week, so i will be grinding alot of my own flour.(i can’t use my old wheat grinder)

i spend alot of time on the boards at celiac.com. i think that there is alot of info at that site also.

we havae to read every label since we have to stay away from gluten, but since wheat is in everything, i would imagine you gals are reading labels, too. i used to cook with cream of mushroom soup alot—-i have been able to find a creamy mushroom soup that is gluten free, but it’s not condensed. we just got some tinkyada pasta the other day and it is good—some of the GF noodles have been better than others.

wheat is in things you would never expect, like licorice, toothpaste, shampoo, lotion, lip gloss, dog food. we have just adopted a new lifestyle.

i really hope that your kids only have wheat allergies they can outgrow and not celiac. so far i have only met (on the phone) the mother of one other celiac child in our town. i have heard of (maybe) about 2 more. i don’t know why we have such strange things happen at our house.

[Anonymous]

Anne, we’re in Richmond, Virginia. It’s frustrating that the area around here isn’t considered “big” enough to draw in stores like Whole Foods or Trader Joe’s (although a Whole Foods is supposedly coming next year!), but I do feel lucky that we have a local chain called Ukrop’s that has a really decent section and then the 2 different health food stores. You also sometimes have to check out more than one location of the bigger stores. I’ve found one location of Ukrop’s has way more stuff than some of the others. I found the same thing with Kroger. I’ve spent a lot of time searching for stuff.

We actually tried a bread from Trader Joe’s that might have been the same one that you mentioned. It was really moist. I thought that it was okay, but Kaelyn really wasn’t a big fan. My biggest issue with it was that it got moldy in just a couple of days.

You’re right, the gluten free bread is usually in the freezer section. It took me three trips to the store to figure that out. There are actually usually a decent amount of gluten free foods at the grocery store, but they are often mixed in with other things, so they are challenging to find. I kept hoping for a nice big gf section, but it just never happened!

I have to run to a meeting so I’ll post about the allergy testing later.

[Anonymous]

We were told that allergy testing isn’t completely reliable before they are two. Plus, our ped really didn’t think that she was having allergy issues. Finally, around 16 months, her rash got so bad that the ped couldn’t ignore it anymore. We did the RAST (blood) testing first. It showed her wheat and milk allergies. We spent the next month cutting those two foods out of her diet. She was still showing definite reactions to something so we did the skin prick testing which showed her apple allergy. Last Friday, we did another round of testing which didn’t help much. It showed a peach allergy, but she doesn’t like peach, so she hadn’t been eating anything with peach in it. The allergist says that her lingering rash is “just” eczema. So, we are treating it and hoping that he’s right. He says that there is a really good chance that she’ll outgrow her allergies in the next few years. So, we’re keeping our fingers crossed! I’m hoping that he’s right about the eczema and that it’s not just a problem with the allergy testing itself.

As you start searching, don’t get too frustrated. The first several times that I went shopping for wheat and dairy free foods, I would end up leaving the store so depressed. It takes forever to read through all of the labels and find foods that are safe. Adding in soy as a possible problem will make it even more challenging. After a while, you’ll have a handful of foods that you know are safe, and you’ll gradually find more and more. It does get easier! If possible, try going shopping without Lucas. Trying to read labels while shopping with Kaelyn is an adventure! It always goes better when I go by myself or when dh comes with us.

Christine, I’m in the middle of reading an interesting book about celiac disease. Of course, it’s at home and I can’t remember the name of it right now. I’m sure a lot of the same info is on the internet, but I find it fascinating when they talk about the amount of people walking around with celiac disease that are going undiagnosed. So, in many ways, your family is really lucky that you and your doctor were on the ball enough to catch this when you did. After reading the descriptions of all of the “related” diseases that could actually be signs of celiac, I’m going to push dh to get tested. He is really resistant because he doesn’t want to hear that he may need to drastically change his diet.

[Anonymous]

my oldest son (will be 23 in april) has more symptoms of celiac than my three girls that test positive—-and he doesn’t want to know!!! he has rashes that are spreading all over his body—(tianna’s awful rashes have cleared up after 2 months GF—i am amazed!!) he has the runs about half the time, he is depressed, he went over a year being nauseated, vomiting, and having the runs. i am going to put our family in a celiac study (eligibility requires 2 or more family members diagnosed with blood tests or biopsy) they will pay for testing for the whole immediate family, and any other family members with symptoms. i think he will be willing to be tested if he doesn’t have to pay for it.

i can send you all the delphi gluten free list if you are interested. it is really long, but it has a lot of different foods on it. cooking gluten free has not been as hard as i thought it was going to be. i had several meltdown in the first couple of weeks—had a difficult time not crying during one of our first trips to the grocery store. so far we have only had one birthday party—but the mother called me ahead of time. the twins have a church youth leader that has celiac also, so she has made sure that they have had some gluten free foods at church activities. the twins have had one school trip–but brought their own food. some one at a fast food place told them potatoes had gluten—kassie knew they didn’t know what they were talking about, so didn’t chance ordering anything. dating will be a challenge when they are old enough—but they seem to be handling things pretty well.

the ped gi told me he doesn’t quite trust tianna—-i’m not sure what he meant by that,i am assuming he was referring to the state of her health, but he said he thinks she is a little more fragile than the other two.

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