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Lindsay GFMom

gluten-free When With Dairy Intolerance

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Per Enterolab, my son is gluten and dairy intolerant and has the Celiac gene. He has been gluten and dairy free for six months. He has never really had any symptoms of gluten or dairy intolerance.

I've read that dairy intolerance is often secondary to gluten intolerance and that after you've been off of both for several months (or a year) that it's often okay to go back on dairy. (But not gluten!)

I'd really like to get him back on dairy. He hasn't gained any weight since we went gluten-free/cf and it's hard to get adequate calcium.

Have others been in this situation and put their kids back on dairy? Since he had no symptoms prior to going off the dairy, I'm assuming he likely won't have any symptoms when he is put back on. So I won't know if it's harming him in some way.

Any thoughts? Thanks.

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Dr. Fine recommends that if you test positive for casein antibodies, you stay off all dairy permanently. The dairy intolerance secondary to gluten intolerance you are hearing about is for people that can't handle lactose while they are healing. They can usually go back on dairy after the gut is healed.

So, if you go with your Enterolab results, your son is reacting to casein (a protein) not lactose (a sugar) and the diet needs to be permanent.

However, I read a study from 1990 where children with gluten intolerance and children with casein intolerance were put on their respective diets for two years and then challenged the diet. The gluten group all reacted again. 60% of the casein group did not react.

My current plan for myself and my daughter is to stay off all dairy for 2 years, challenge dairy and run another Enterolab.

-Shannon

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I can only tell you what we did . . .

My daughter had a positive blood test and inconclusive biopsy. The doc said visually, it wasn't enough damage to call it celiac but all of her sugar processing (not just lactose) was decreased. (He DID diagnose her with Celiac based on the blood test, reduced suger processing and iron and protein deficiency (indicative of malabsorption)). Her symptoms were acid reflux with regurgitation. No abdominal pain, no D - more on the constipated side but I chalked that up to diet - not enough water and a heavy reliance on dairy for her protein.

We went gluten-free and took a lactaid tablet (they have a chewable version) whenever she had dairy. After two months, we were allowed to stop taking the lactaid tablet. She never complained of anything the entire time.

I don't think that being lactose intolerant will cause damage - it will cause pain/discomfort because your body doesn't like it/can't process it. Not like in celiac where the gluten causes the body to attack itself.

I'm not familiar with how Enterolab reports it's findings - does it break the dairy down to protein and sugar? If it's just the sugar, you might give it a try. If it's the protein, then I think Zarfkitty has a good plan.

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This is very helpful, thank you.

But what would you do if your kiddo showed no symptoms when he was on dairy? As I understand it, gluten can do long term damage but dairy can't....i.e. if the dairy is a problem, you'll want to go back off of it because it's causing you trouble, not because you're doing huge bodily harm.

You're right that it is casein (if that's what Enterolab shows...I didn't even know that and I appreciate knowing!)...but why should he continue to stay away from it if it doesn't seem to bother him?

Gluten doesn't seem to bother him either, but I "get" that we must keep him away from that....I just don't understand the reasons for staying away from casein.

Thanks for helping to educate me!

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A study came out in March of this year documenting histological changes (damage) in people who are sensitive to casein. The people who showed damage from casein were also sensitive to gluten.

So it could be causing damage even though he's not bothered by it.

In answer to a previous question, Enterolab's dairy test only tests for cow's milk casein. (for what it's worth, all mammal milk has casein but different animals produce slight variations of it.)

-Shannon

p.s. it's been harder for me to give up dairy than gluten, and I've researched the heck out it trying to justify the casein-free part of my diet. I wish I could say I found evidence to support going back on dairy right away!

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My son struggles more with the dairy than the gluten. He loved his milk before we realized he was intolerant. He was not formally tested for milk so we didn't really know if it was lactose or casein. But when we took him off dairy, we took him off any form, even the little bit you might find in packaged cookies. We read every ingredient the same as with the gluten and he got better, much better, and quickly too. Within the first week he was almost "normal". Since we don't know which it is, I tried to follow a plan by the nutritionist to start adding small amounts back into the diet and I think he is reacting so I have to assume it is the casein since I have been giving him a Lactaid pill before any dairy. Although it is odd, on vacation a month ago I gave him 2 Lactaid tablets before giving him frozen custard and he didn't seem to react. A month later (last week) I tried it again with ice cream at a restaraunt, and he did seem to react (although we did eat out so he could have been glutened). I don't know, I think it is casein, still not sure, but was kind of hoping someday he might outgrow this as some people outgrow allergies. This might be wishful thinking though.

Nicole

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We just recently started trying small amounts of dairy with our 3 year old son after being gluten-free for a year and CF pretty much his whole life. He seems to be handling it ok, whereas before even the tiniest exposure would cause him to develop hives and severe diarrhea. I don't think we'll ever make dairy a regular part of our diets, but I think an occasional ice cream is ok for him.

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I sure hope it works out that way for me and my daughter too. I did my grocery shopping today (I dread grocery day) and dairy in labels gave me fits. It would be really great to have an occasional ice cream or gluten free pizza with real cheese.

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A study came out in March of this year documenting histological changes (damage) in people who are sensitive to casein. The people who showed damage from casein were also sensitive to gluten.

So it could be causing damage even though he's not bothered by it.

In answer to a previous question, Enterolab's dairy test only tests for cow's milk casein. (for what it's worth, all mammal milk has casein but different animals produce slight variations of it.)

-Shannon

p.s. it's been harder for me to give up dairy than gluten, and I've researched the heck out it trying to justify the casein-free part of my diet. I wish I could say I found evidence to support going back on dairy right away!

One of my friends is intolerant to JUST casein and has ALL of the celiac symptoms - including intestinal damage. All of it was reversed on a casein free diet. They originally thought she had celiac due to the intestinal damage.. but it was shown that ONLY casein did the damage and she had no problem with wheat or gluten. Since casein is one of the milk proteins, your body can have the same autoimmune reaction to it. Hence, if you have casein antibodies you need to stay away from it for life.

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