Search Results for 'celiac'

[Anonymous]

Well, my Bob’s Red Mill bread….I think it tasted fine. It’s the first bread I’ve ever had without gluten….and I have to admit, I really don’t like the taste! But I guess I was expecting that it would hopefully magically taste like whole wheat. I followed the directions exactly, but it seemed somehow sweeter or something. I’m not even sure if it was a yeast-y taste or what it was about it. The texture was nice, the crust was nice and browned, I’m just not sure. So I got a different mix to try, just to see if this is what gluten free bread tastes like, or what. I figured before buying cups and cups of tapioca flour, etc, I should test other things to see if I can find a taste I like. It also seemed more moist than regular bread, and the rice bread that I’ve gotten is very moist– maybe this is something that goes along with gluten free?

Christine, a woman at the health food store asked me if I have celiac while on the gluten free aisle and said her daughter is celiac and they discovered these spices from a web-site called “monteray chicken”– but I gather it’s just a mix of spices. I don’t know why spices would be special for celiacs, but she said they are to die for, they taste so good. Just thought I would pass it along. Do you have to do all your spices differently or something? Your daughter’s lemon muffins sound great. I’m thinking if I bake flavored things it might mask the no wheat flour issue for my taste buds. Little Lucas doesn’t know the difference, but I sure do!

[Anonymous]

it just seems like some gi docs are not up to date on their info—–not sure why, since they “specialize” in pediatric gastro problems. i wish i could send you to our ped gi—-he was up to date on info with sylvia’s reflux, and he is up to date on celiac with my other girls. (although it was my detective work that first suggested celiac as a problem) i’d go for another opinion. kevieb2006-3-8 22:46:20

[Anonymous]

Thanks. I spent some time looking at celiac.com last night. I’m still trying to sort through all these grains in my head, but am wondering, even though Kim’s doc suggested they just cut wheat and go from there….it seems that if wheat is in so many other things, I’m now wanting to go gluten free temporarily, and then add back in other things to see what triggers a reaction? I’ve put in a call to the ped today, but he’s off on Mondays. hoping to get a referral to a “great” allergist….we’ll see what happens. I’m still eating wheat some days, and stil nursing, so it isn’t fully gone for lucas, but he’s not getting anything directly. Dh loves teh rice bread I bought at the store….he likes it more than I do! I can’t find my bread machine as it’s somewhere in the rafters of our garage, so I’m just going to make the bob’s red mill like you did and see what happens. I havn’t baked bread from scratch in a loooong time. Thanks for letting me know that you can use your old recipes, just add the xanthum gum and different flour mixes. I’m going to look for those ladies that you suggested….Hagman and the other one. Your advice has really helped, Christine. Thank you!

[Anonymous]

bob’s red mill brand is what is the most available in our area. i have made the bread mix and it was pretty good. i just made it with a mixer and cooked it in the oven. i haven’t tried bread in the bread machine because i don’t know if i can get it clean enough to be safe for my kids. anything with wheat is going to have gluten. with the new labeling laws, wheat has to be listed if it is an ingredient, it can’t be hidden in a general term such as “spices” or “natural flavoring”. BUT, there are still alot of old labels that will be used up, so it is still a good idea to check with manufacturers for a while. gluten is also in rye and barley. i’m not sure if rye would be used as an igredient in anything without just being labeled rye, but barley is often labeled as “malt flavoring”. if you are just going to try wheat free, you can use oat flour and barley flour. the big problem with oats, though, is that almost all of them are contaminated with gluten containing grains, which could be wheat, oats or rye. there is alot of info at celiac.com—-there is a list of ingredients that are not safe that you might want to look at. the majority of them are probably wheat containing. sometimes even if a product is gluten free in and of itself, it still might be processed on a line that uses wheat flour to dust the line so that the product won’t stick together (such as potato chips and marshmallows) alot of gluten free items will also have an allergy warning that says “processed on equipment that also processes wheat” this may or may not be safe.

i have a friend who is allergic to wheat, but she is able to eat spelt, which is an ancient form of wheat. christine (palmer’s mom) was allergic to wheat for about 10 years, but is able to eat it now. i can’t remember if she was able to tolerate spelt or not. not everyone allergic to wheat can. it still has gluten, so it is out for my kids.

we have made things such as pancakes (with buttermilk) brownies, choc chip cookies, and chocolate sheet cake just using our old favorite recipes (adding xanthan gum) and they have turned out fine.

kevieb2006-3-6 10:25:52

[Anonymous]

Christine,

I might email you for the list as well, if you don’t mind. Thanks for hte info about not needing gi symptoms to be celiac. I mentioned this all to my MIL, sort of like, wow, isn’t this interesting?– she pretty much blew me off and said she has self diagnosed as IBS and takes metamucel and is really just fine. Ahhhhh. Anyway, I’ll be keeping all this in mind while doing a little searching of my own. I’m really interested in the cookbooks you’ve used, I’m assuming they tell you how to do the whole xanthum gum mixing, etc.? Which cookbook or author do you like the best?

Kim,

Again, what a SMALL world. I worked at the Museum of American Frontier Culture and was possibly there working if you brought your kids out in the fall of 1997 or spring of 1998 (I was on the English farm, the pink house is how most people remember it). How funny!! I have relatives in Richmond and dear friends there as well. Thanks so much for the allergy info, I’ll be talking to our doc soon about this, we have an appt coincidentally with the ped gi tomorrow.

Well, you guys have been such a help!! I’m definitely getting more and more interested in this whole wheat/gluten/celiac connection and in thinking that Lucas already seems better and it’s only been a few days. If taking away wheat or gluten can get him to sleep, I don’t care what difficulties it brings, as I’m sure you guys know the feeling.

[Anonymous]

Thanks Christine, I’ll send you an email. I think that you’re right about a celiac test being one of the standard tests that they should run. After everything that I’ve read it seems like a much bigger problem than I ever would have that.

[Anonymous]

sylvia had her tonsils and adenoids removed one week after she turned 2. all of my girls have had large tonsils and have had them removed except for samantha. my boys don’t have large tonsils. daisy jane had her’s out when she was 17, and quit getting so many colds. kassie had her’s out at about 5 years old. i had tianna and molly’s taken out last fall (2004) and hoped ;they would gain some weight—-didn’t know we were dealing with celiac which is probably why they were so thin.

[Anonymous]

kim, send me an e-mail and i can send the list back to you in an attachment——that is the only way i know how to send it—-i’m kind of computer illiterate. kevheiner@msn.com

anne, tianna and molly didn’t have lower gi symptoms either. in one of the bette hagman cook books she gave a list of the top 10 things that people were “misdiagnosed” with before they were finally diagnosed with celiac—-and irritable bowel is one of them. i have a friend that has tried to get me to be tested for celiac for several years (before we ever suspected it in the girls) after all that i have learned about it, i think it should be run as a routine blood test for most people. they say that 1 in 132 people have celiac, but many people don’t even have any symptoms—-but damage is still being caused.

[Anonymous]

Christine, I would love the list if you don’t mind. Is it something you can email or would it be easier to mail? Several of your son’s symptoms are similar to dh and his mother. She has been diagnosed with irritable bowel syndrome, but I think that they just weren’t sure what else to call it. Dh always downplays his symptoms when he sees the doctor, so he hasn’t been diagnosed with anything at all.

Anne, I really like the Waynesboro area. I used to take my third graders to Staunton every year to the living museum that they have. It is a beautiful area. It must be so different to be in Southern California now. I grew up in Massachusetts and Richmond was a big change at first, but I really love it now.

We actually went to my allergist. He works with adults, but he is also a pediatric allergist. For the RAST test, they draw blood and they can test for a number of allergies with it. The SPT (skin prick test) is when they scratch their back with all of the different allergens. We’ve had the SPT done twice. The first time was a nightmare, but she had a cold and was really cranky before we even got there. The second time wasn’t bad at all. She fussed a little while they wrote on her back. (They need to mark where every test is done.) Then she cried while they scratched her back (it lasted maybe 5 minutes), and then she stopped as soon as they finished and immediately started playing with the toys that we brought. Dh and I both went to both appointments, so one of us could hold her and the other could try to distract her.

From what I’ve been told, the RAST test is prone to false negatives, and the SPT is prone to false positives. Although Stacey was actually told the opposite, so it’s hard to say for sure.

If you’re thinking about testing for celiac, you actually have to do the test while Lucas is still eating foods that contain gluten. That’s one of the reasons that I’m thinking about having dh and I tested first. If one or both of us is positive, then I’m more likely to have Kaelyn tested. I just hate to start feeding her wheat and put her through another test until I absolutely have to.

[Anonymous]

Christine,

Thanks so much for all the info. I’ll be looking into the flours and such as I will probably be baking goodies to keep me from going insane. The cookies that have been a staple of my dairy and soy free diet (so I could have SOMEthing I liked that wasn’t “healthy”) have wheat in them, of course. I was reading about celiac last night nad Lucas doesn’t seem to have any of the lower gi symptoms, but dh reminded me this morning that both his mother and his sister (grandmother and aunt to Lucas) have had weird bowel things and have been labeled “irritible bowel syndrome” but I think it’s been for lack of a better diagnosis. I read on the celiac site last night that IBS is often misdiagnosed and could be celiac?? Does this sound like we should look into it further to you? Lucas also seems to be responding well to the removal of wheat, and it’s only been a few days.

Kim, wow, you’re in Richmond!! I grew up not far from there on a farm in the Waynesboro/Staunton area in the Shenandoah Valley and my family is still there. My mother has commented for 20 years that she wished we had a Ukrops because they are so nice!!! What a small world. Dh and I are south of LA, now, but a lot of my family is in VA and NC. Thanks for the info on t eh allergies. Do you go to an allergist, or a pediatric allergist or did your ped do the testing? Is the RAST one where they prick their skin? If so, how did Kaelyn do with that?

[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.

[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]

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]

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’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.