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What Does This Mean
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My 17 month old was diagnosed with celiac about 2-3 weeks ago. My oldest three were tested and today they called and said that two of them were mildly positive. What the heck does that mean. One had a GLIABG level of 74 the other was 79. They are 6 and 9. The baby had results of 102. I don't know what these mean and why they are saying mildly positive. They said it is up to me whether I want them to be gluten-free based on whether or not they have symptoms. I thought if you were positive regardless of sypmtoms you were incurring intestinal damage. I am so stressed and confused, someone please help me out.

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Some docs think the diet is SOOO hard that, unless symptoms are interfering with your life, you shouldn't do the diet. I think that's poppycock (and I don't mean the popcorn based treat!), of course. I'd take the whole family gluten-free for the ease of it, but definitely those who test positive!

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I agree with Tiffany. The diet is not as difficult as some people make it out to be. It would be even easier if your entire family is glutenfree. It is your decision to make.

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Mildly positive....I think that means that they were borderline....probably positive, but not definite...mildly positive doesn't mean mild effects on the intestines. All three should be gluten-free.

Second, that is REALLY, REALLY stupid that they ask you based upon symptoms. They may not have symptoms now, but they're going to later. Arthritis, cancer, osteoporosis....if they don't follow the diet now, they'll die younger and will develop serious complications....all three should be gluten-free.

Sure, it would be easier for the entire family to be gluten-free, but it would also be expensive. If you have enough money to, I'd advise you to make the entire house gluten-free. However, gluten-free foods are really expensive, so if you're on a tighter budget, I would not advise you to put people on the diet if they don't need it -- I think this decision should be based on financial situation....over $4 for a loaf of bread is outrageous if you don't need it for medical purposes and it really adds up.

Finally, I, too, agree with Tiffany. The diet is not all that difficult to follow once you get the hang of it and symptoms should not affect your decision of gluten-free diet or not......if you catch it in them and make sure they follow the gluten-free diet, you're adding years to their life and saving them from miserable complications later in life. I find the symptoms the hard part...the diet isn't that bad or hard once you get the hang of it.

-celiac3270

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I would add that a gluten-free diet doesn't have to be that much more expensive IF you stick with naturally gluten free foods. Instead of buying millet for a side dish, have beans. (And rice is always a good one.) Instead of buying fancy gluten-free noodles, get asian rice noodles (like pad thai noodles). Instead of buying bread, start making things that aren't sandwiches - or use corn tortillas. If you have to have baked goods, find a consensus on mixes that you can get and trust reasonably without having to throw away wasted efforts.

It doesn't have to be much more expensive to take the whole house gluten free if you're willing and able to get creative and cookin'! :-) (It can be cheaper if you're eating _really_ cheaply, but that's not particularly fun, as recall from my days in college trying to live on $20/wk for groceries. blah!)

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In my opinion, a positive is a positive. It doesn't matter if it is a higher or lower reading, some people just produce more antibodies than others and it has no bearings on how bad the symptoms are. There are people out there with outrageously high antibodies and NO symptoms, and other who have horrible symptoms and barely register any antibodies at all.

I found with my own kids that they all showed improvement on the gluten-free diet. Even the ones that tested borderline. My oldest child has a severe reaction to dairy, but his only symptoms from gluten seems to be behavior problems. Those were corrected with the diet and even his teacher noticed how much better he was behaving in class. My daughter mainly had diarrhea and occasionally vomiting. No more of that since being gluten-free. My younger boy has always been the sickest and he would have been the only one I had tested if the doctors had anything to say about it. He is so much better being gluten-free, and all of them have started growing at a faster rate.

Our pediatric GI doesn't think it is possible to keep a child 100% gluten free, but at home my kids are, and since I check ahead and send appropriate snacks whenever they go places, they are generally gluten-free away from home, too. The only time they have ever gotten gluten has been when we go out of town and have to eat out or at re4latives homes. The diet itself is not that hard, once you get used to it, but it is much easier if the whole house is gluten free. Before my kids were diagnosed I was getting contaminated all the time. Now the only things in the house that contain gluten are my husbands sauces and his jar of peanut butter (both kept out of reach of the kids) and an old toaster oven and one frozen loaf of regular bread, that kids and I don't touch. It had been easier than I thought, but it takes a lot of forethought when going out with the kids. The loss of convenience is the hardest thing to come to terms with.

And it doesn't have to be all that more expensive, you just have to be careful what you buy. I find we spend more on gluten-free foods, but since we eat out less, we end up spending about the same each month.

God bless,

Mariann

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Just wanted to update and say that I found out that all three kids tested positive for the endomysial antibody. The lab said anything over 30 was moderate to high. My kids' levels were 74, 79, and 102. All three of them are gluten-free now and so am I since I am still nursing the youngest one. My dh I tested negative but I think he has a sensitivity. He is a truck driver and thus gone most of the time. That leaves my oldest son the only one not on a gluten-free diet in the house. He wants to be gluten-free as well to support his brothers. So long story short, we are all gluten-free. I don't buy many prepared gluten-free foods, I am pretty much making everything myself from scratch. It costs a bit to start with to accumulate the necessary ingredients, cooking supplies and such but I think it is cheaper in the long run than buying prepared gluten-free foods.

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    • You should never have cut out gluten until you had the biopsy done. It's much worse to have to go back on after you've been off gluten for a while. There's no way I could ever do the gluten challenge after being off gluten for even a month because my reactions got so dramatically worse.  Stress definately can trigger celiac- before I was diagnosed - it got the worst after surgery and after a stressful time planning my daughters wedding. 
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