help with wheat allergy/ intolerance

[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]

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]

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]

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]

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]

anne, send me an e-mail so i can send the list back to you.

kim, tell me if the list got to you so i’ll know if i did it right.

[Anonymous]

Christine,

Sorry it’s been a crazy week, Lucas started teething again. Not a lot of sleep around here!

Where did you find the recipes where it explains how to measure other flours and the xanthum gum to fit into a recipe that normally calls for wheat flour?

[Anonymous]

i have a number of gluten free cookbooks and the amounts of xanthan gum per cup was in one of them—-i’ll try and find it tonight. bette hagman has several different flour mixes in her books that can replace wheat flour cup for cup (you add the xanthan gum yourself) you can also buy some flour mixes that already have xanthan gum in them. we use bette hagman’s featherlight mix the most. i also use a mix from carol fenster’s book “gluten free:101” i have started using brown rice flour in the featherlight mix because i want a little more nutrition in the baked foods. carol fenster’s mix uses sorghum flour rather than rice, so i think it has more nutrition. i think alot of people buy pre-made baked goods—-it’s just not an option for me to pay that much all the time. i just got done ordering some things from kinnikinnick’s—-people have said alot of good things about their products. i’l post on here and tell you how well we like them.

kevieb2006-3-3 16:57:8

[hellbennt]

I put a link to these posts here (scroll down to 7th psot/end of the page): https://www.infantreflux.org/forum/forum_posts.asp?TID=2697&a mp;PN=1&TPN=1

let me know what else I should add?

[Anonymous]

Christine, I got the list. Thanks!!

We have used some of the kinnikinnick’s stuff and it was pretty good.

[Anonymous]

kim, what have you used from them? i ordered 2 kinds of donuts, bagels, pizza crust, and i can’t remember what else.

[Anonymous]

Kim or christine,

Is there a good site for learning about what counts as wheat and what counts as gluten? I don’t want to go gluten free if I don’t have to, but I don’t really know what counts as what. Just wondering if you have something you use as a reference on-line.

christine,

Thanks for all the info. I typed a much longer response, but it disappeared! Have you heard of Bob’s Red Mill? They have a gluten free mix for breads (and I think another for pancakes, etc.) and you can put it straight into a bread machine, or use it for baking bread in your oven. It’s probably more expensive than mixing flours yourself, though. I got one just to try. Thanks again!

[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]

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]

Christine, we’ve used the chicken coating, white cake mix, and white sandwich bread from kinnikinnick’s. The cake wasn’t fantastic, but it’s been better than the other cake mixes that I’ve tried. The taste is slightly different, but it’s the first one with a good texture. I overcooked the chicken, but the flavor of the coating was good. I tried to bake it in the oven. Next time, I think that I’ll try to fry the chicken. Kaelyn liked the bread.

I really like the Bob’s Red Mill products. I use the pancake mix all of the time. Their brownies are pricey, but really good. I think that they’re just as good as regular brownies. I also got their xantham gum and all purpose flour. So far, I haven’t been disappointed in anything that they make.

I also like the products from The Gluten Free Pantry. I’ve mostly made their baked goods. Kaelyn really likes the muffin and scone mix (blueberry muffins) and the spice muffins. I’m getting ready to try the cornbread.

I haven’t seen any of the Bette Hagman stuff. Where did you find it?

Anne, I haven’t found a really good list of wheat free (versus gluten free) products. As you’ve said, I’ve basically avoided gluten in general. Although, I’ve gotten a few things with malt flavoring. As Christine stated, there is some concern with oats being contaminated during processing. Right now, oatmeal is one of Kaelyn’s staple foods (and one of the few things that she will still happily eat), so I’m really torn about it. She’s still having lots of eczema issues, so I’m giving serious thought to doing a trial without oatmeal to see if it makes a difference.

Let me know how the bread goes. I have been afraid to try so far, but I did buy a mix to try. I just need to work up the courage!

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