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Old 11-28-2007, 03:20 PM   #1
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Mamas of lo's with wheat/gluten intolerance in here, please!

Ok, I have suspected for some time that my dd Hope has a problem with wheat. She is always complaining of tummy aches, and that her legs hurt. She also has very greasy stools, I can see fat floating on the water after she poops. She also gets very emotional.

So dh took her to the doctor and she did a RAST test to check for food allergies (we know by experience that she has a milk protien allergy) but nothing showed up. I guess I should have had dh ask specificially for the celiac test but now I am just thinking I will go wheat free with her (and me) and see what happens.

I would just like some confirmation here...so if you could share your experience and give any advice I would so appreciate it. I know it is going to be hard!

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Old 11-28-2007, 03:40 PM   #2
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Re: Mamas of lo's with wheat/gluten intolerance in here, please!

That sounds more like celiac (meaning all gluten) than wheat alone to me. The blood test they do checks for the genetic marker -- it isn't the end all of the testing. To really confirm they have to do a scope and she'd have had to be flaring (meaning eating gluten) for a few weeks previously -- so basically, if you want a formal diagnosis, go see a GI doctor before you eliminate.

Caroline is gluten intolerant. I don't know if she is a celiac or just gluten intolerant w/ the possibility to outgrow. We didn't do the testing when she was flaring and I will not flare her just to test at the present time. She has a ton of other intolerances, so I'm not sure how much of our experience is relevant to you, unfortunately.
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Old 11-28-2007, 04:06 PM   #3
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Re: Mamas of lo's with wheat/gluten intolerance in here, please!

Ok my son has celiacs disease. He is 18M now and started having serious problems when he was about 12M. After months and many testing for his stools for parasites, viruses, and bacteria they sent us to a GI specialist.

After doing several tests and finding out the reason he is always sick was because he has no immune system, but that did not help explain the diarhea and lack of weight gain.

Now I am not sure how old your dd is, but the celiacs test is not always correct before the age of 5 and it is pretty invasive test. I personally would not do it again. I would rather go gluten free and see if it helps to get the answer.

It is a big adjustment. Especially for kids that are used to eating normal food. I go to the grocery store and cry because the things he wants he can't have and the GF stuff is extremely expensive, but it is all possible.

Let me know if you have any questions. Be more than happy to answer any questions for ya!
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Old 11-28-2007, 04:33 PM   #4
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Re: Mamas of lo's with wheat/gluten intolerance in here, please!

Thanks, mamas. Hope will be 5 next month. I really don't want to put her through unnecessary testing. She already had to have the one blood draw (she did great) but other than that I really don't want to put her through it. I am sure I need to go gluten free too, so we'll just bite the bullet and do it. I was just hoping for some validation. It makes me so mad the incompetency of doctors! We've been on our own diagnosing ourselves after years of trouble.
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Old 11-28-2007, 05:47 PM   #5
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Re: Mamas of lo's with wheat/gluten intolerance in here, please!

My daughter has a wheat intolerance. We found out by going to the naturopath. Well, we went for a sort of all over check-up and found that. We had been suspecting it due to some issues she'd been having (behavior issues) and he confirmed it. He said at this point to just be careful and to cut out most of her wheat. I do our baking, so wasn't too bad -- used spelt flour for bread, which is low gluten, in chocolate chip cookies did half oat flour, that sort of thing. But recently, as I've been doing more reading, I am finding more and more people saying that an intolerance is more likely to turn into an actual allergy if the food is no avoided. So, we are making a bigger push toward no gluten/no wheat. I am more concerned with no wheat, but I am also not going all out. For instance, Honey Nut Cheerios has no wheat, but it is processed on the same equipment as the other Cheerios, some of which contain wheat starch (have not seen actual wheat flour, just the starch listed). And we're not going gluten free for the whole family. I can't afford to do it. So she'll have her own bread, at least. Am still playing around with some of my homemade goods (spelt doesn't work for spetzle, I found out), but for the most part it's not too bad. There are several gluten free cereals that are not much more (if any more) expensive than regular cereals, a lot of snacks (tortilla chips, for example) that aren't made with wheat, and a lot of wheat/gluten free things that while expensive aren't bad if you're buying for one person (such as pretzels -- yes, there are wheat free pretzels that taste good). There are rice noodles that taste fine (my husband didn't know they weren't regular noodles) and for baking, there are gluten free all purpose baking mixes (I have some by Arrowfood Mills, I think). If you are not going extreme and limiting foods that are processed on the same equipment as foods that contain wheat, it is not so bad. I can't imagine cutting out all foods that have been processed on the same equipment.

And you know, going gluten free will be good for you, too, even if you don't necessarily "need" to do it. Until the last 100 years or so, people didn't eat as much wheat as we do now. Grains, yes, wheat (especially genetically altered wheat), no.
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Old 11-28-2007, 08:31 PM   #6
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Re: Mamas of lo's with wheat/gluten intolerance in here, please!

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Originally Posted by tallanvor View Post
I can't imagine cutting out all foods that have been processed on the same equipment.
Just FYI, about 1 in 4 "may contains" based on shared equipment have been shown TO contain, so with a child who is very sensitive or with something like celiac disease that can cause permanent gut damage, I personally choose to avoid those foods whenever I am able. I do take the risk on things with labels like the Whole Foods own brand which state something like "good manufacturing practices used to segregate ingredients in a facility which also processes x y and z".

Just my opinion. My sensitive child definitely reacts to the cross-contamination, unfortunately.
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Old 11-28-2007, 08:37 PM   #7
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Re: Mamas of lo's with wheat/gluten intolerance in here, please!

We're in kinda the same boat. DS was suspected to have milk protein INTOLERANCE...not allergy. Just meaning it caused diarrhea, but after testing for about 3 weeks to cut out dairy, we didn't see much improvement.

We have an appointment in January (the soonest we could get) to have more tests done and probably test for celiac. to you.

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Old 11-28-2007, 11:17 PM   #8
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Re: Mamas of lo's with wheat/gluten intolerance in here, please!

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Originally Posted by ThatLinGirl View Post
Just FYI, about 1 in 4 "may contains" based on shared equipment have been shown TO contain, so with a child who is very sensitive or with something like celiac disease that can cause permanent gut damage, I personally choose to avoid those foods whenever I am able. I do take the risk on things with labels like the Whole Foods own brand which state something like "good manufacturing practices used to segregate ingredients in a facility which also processes x y and z".

Just my opinion. My sensitive child definitely reacts to the cross-contamination, unfortunately.
Oh, I know that there is cross contamination in a lot of those cases. I just meant I can't imagine having a child (or being that way myself) so sensitive that I have to be ultra careful like that. I mean, I can do dinner okay with no gluten, but everything else is hard.
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Old 11-29-2007, 11:34 AM   #9
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Re: Mamas of lo's with wheat/gluten intolerance in here, please!

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Originally Posted by tallanvor View Post
Oh, I know that there is cross contamination in a lot of those cases. I just meant I can't imagine having a child (or being that way myself) so sensitive that I have to be ultra careful like that. I mean, I can do dinner okay with no gluten, but everything else is hard.
I gotcha. With something like celiac disease, though, one would indeed have to be very careful, though with a "plain" intolerance not necessarily.
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Old 11-30-2007, 11:56 AM   #10
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Re: Mamas of lo's with wheat/gluten intolerance in here, please!

Thanks for sharing, mamas It's hard for me not to get all stressed about this...especially with the cross-contamination. Dh bought some corn tortillas last night and I told him to make sure they didn't contain wheat, but he missed the part that said they are made on equipment that processes wheat And things I thought were safe like Rice Chex, Rice Krispies, and Corn Flakes all have malt in them which is supposed to have gluten.

I know it is doable...just tough!!!
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