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Kibbie

New To Group/daughter's Blood Test Indicates Celiac

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I just recieved a phone call from our Pedi. Gastero. she said that my Daughters (17 months old) blood test indicated Celiac's.

I am really new to this all and don't know where to start.... any advice or help would be appreaciated!

Thanks

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You're at the best place to learn about this. My advice is to read, read, read on this site.

I know this can be overwhelming at first, and there's a lot of stuff to learn. But don't worry, within a month, you'll be on here giving advice too. It's easy once you get the hang of it.

Let's start with her favorite foods. What are her favorite things to eat?

Nancy


The person who says it cannot be done should not interrupt the person who is doing it.

~Chinese Proverb

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Welcome Kibbie! :D

I have 3 children, 2 have tested positive through enterolab with gluten sensitivity. My youngest hasn't been tested yet.

I agree with nantzie. Read, read, read on this forum. The diet can be overwhelming at first, especially if you are not used to reading labels.

Make sure you cut out all gluten sources....wheat/rye/barley/oats/ (I believe spelt also). Don't forget to check shampoo, soaps and toothpaste. Playdough has gluten in it also.

If you have any specific questions please ask.

What state do you live in? I'm in SW Washington State if you are anywhere near there.


Andrea

Enterolab positive results only June 06:
Me HLA-DQB1 Molecular analysis, Allele 1 0201; HLA-DQB1 Molecular analysis, Allele 2 0301; Serologic equivalent: HLA-DQ 2,3 (subtype 2, 7)
Husband HLA-DQB1 Molecular analysis, Allele 1 0201; HLA-DQB1 Molecular analysis, Allele 2 0302; Serologic equivalent: HLA-DQ 2,3 (subtype 2,8)



The whole family has been soy free since February, gluten free since June 2006.

The whole family went back to a gluten diet October 2011.  We never had official testing done and I decided to give gluten a go again.  At this point I've decided to work on making some gluten free things again, though healthwise everyone seems to be fine.  The decision to add gluten back in was also made based on other things I'd read about the 2nd sequence of genes.  It is my belief that we had a gluten intolerance, but thanks to things I've learned here, I know more what to keep an eye on.  If you have a confirmed case of celiac, please don't go back to gluten, it's a lifelong lifestyle change.

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For the most part I'm not too afraid of this.... and shes a big time fruits and veggie girl :)

She loves pasta (a neighbor of mine uses the brown rice pasta and gave me a bag this morning :)

Pizza is a biggie

Oatmeal

Toast with eggs

I'm more worried about us eating out at restraunts, what we are going to do for birthdays, holidays with other family members etc. Because we do travel a lot still :(

I'm trying to look at the bright side of things that this is just an extra kick in the bum to be healthy :)

I'm also debating if we should do the biopsy or not.... what are your thoughts on that??

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She loves pasta (a neighbor of mine uses the brown rice pasta and gave me a bag this morning :)

Pizza is a biggie

Oatmeal

Toast with eggs

Chebe sells a mix for pizza (as well as other things). We also like kinnickinnik pizza crusts. I liked enjoy life sandwich bread if you don't want to make your own. We also like food for life breads (not ezekial though, they're wheat). They also make rice and a millet one. That would take care of toast and eggs. They do make a gluten free oat that is not supposed to be contaminated. A lot of people still have problems with any oats. That would be your call, but if you do continue to have them you need to buy the dedicated gluten free ones. Do a search online for gluten free oats.

I'm more worried about us eating out at restraunts, what we are going to do for birthdays, holidays with other family members etc. Because we do travel a lot still :(

I'm also debating if we should do the biopsy or not.... what are your thoughts on that??

Let's cross the holiday bridge around October. That will give you a month to get used to this first. :)

Biopsy. Personally, I wouldn't do it. A lot of children don't have extensive damage yet and the biopsies are hit and miss. I don't know what your insurance would cover with a proceedure like that and what you would have to pay out of pocket.....but what about looking into enterolab. It is non invasive (stool test) and they test for ttg, malabsorption, IgA antibodies and genes. The also offer dairy (which may still be included in the main panel). They offer soy, egg and yeast as well. That way you'd still have an idea about damage without going through the biopsy, it's more reliable than a biopsy and less expensive and much less invasive. Also, some have reported problems with insurance with a celiac diagnosis on the books. For school, you may need something definitive. Will your doctor note gluten intolerance on her charts and write a note that she is to be gluten free when it comes time for school? I'm homeschooling so I don't have to worry about that right now.

For enterolab click here.


Andrea

Enterolab positive results only June 06:
Me HLA-DQB1 Molecular analysis, Allele 1 0201; HLA-DQB1 Molecular analysis, Allele 2 0301; Serologic equivalent: HLA-DQ 2,3 (subtype 2, 7)
Husband HLA-DQB1 Molecular analysis, Allele 1 0201; HLA-DQB1 Molecular analysis, Allele 2 0302; Serologic equivalent: HLA-DQ 2,3 (subtype 2,8)



The whole family has been soy free since February, gluten free since June 2006.

The whole family went back to a gluten diet October 2011.  We never had official testing done and I decided to give gluten a go again.  At this point I've decided to work on making some gluten free things again, though healthwise everyone seems to be fine.  The decision to add gluten back in was also made based on other things I'd read about the 2nd sequence of genes.  It is my belief that we had a gluten intolerance, but thanks to things I've learned here, I know more what to keep an eye on.  If you have a confirmed case of celiac, please don't go back to gluten, it's a lifelong lifestyle change.

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Tinkyada pasta is the way to go. That's probably the one your neighbor gave you. It's pretty easy to find in health food stores, and I've even seen it in some mainstream grocery stores.

Gluten free pantry also makes a good french bread and pizza crust mix.

My favorite bread, which comes as close as I've ever tasted to the taste and texture of wheat bread is Pamela's Wheat Free Bread Mix. It's a mix, but it's WAY worth the effort. We go through at least a couple of loaves a week (all four of us are gluten-free). My kids like it as toast, as PB&J. My husband and I make regular sandwiches with it like ham and cheese and BLT. We also make it as toast and eggs, egg in a hole, etc.

Whole Foods Market also has a Gluten-Free Bakehouse. They have cookies, muffins, cornbread and a few different kinds of bread. Before I delved into baking my own from Pamela's Mix, I was buying the Whole Foods Sandwich bread and the Sun Dried Tomato Garlic bread. Both were really good. You had to toast them, but they were good.

One of the tricks to gluten-free bread is that a lot of them you have to toast for them to taste/behave right. With Pamela's you don't have to toast it. It's fine plain. But if you end up buying or baking a loaf of gluten-free bread that you don't like the flavor or texture of, toast it to see if that helps before you give up on it. If all else fails, break out your food processor and turn it into breadcrumbs.

That brings us to toasters. You have to buy an exclusively gluten-free toaster. There is no way to clean the inside of a toaster, and the gluten from regular bread sticks to the inside of them.

Hope that helps.

Nancy


The person who says it cannot be done should not interrupt the person who is doing it.

~Chinese Proverb

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Find a post by nini and then click on her homepage link at the end of her signature. She's got a newbie kit that should help you.

I've got a ton of recipes/tips if you'd like them. Just PM me and I'll send you a link. My daughter started eating gluten-free prior to her first birthday, so I've been through the age you're currently dealing with. The main difference for me was that I had been cooking gluten-free (my mom and sister also have celiac, as well as several aunts and cousins) for 3 or 4 years before I needed to do it for one of my own children, so following the diet wasn't a difficult adjustment for me. I knew that I'd be able to make breads/cookies/pumpkin rolls/ whatever for her that were just as good as "normal foods". In fact, I made a pumpkin roll for their first birthday (my celiac daughter has a twin) and we've got pictures of them licking their plates. (And that was their own idea . . . it was the funniest thing!) I just make all our dinners gluten free, and everyone loves them.

It seems overwhelming at first, but it will get better, honest. Please PM me if you have any questions I could help you with (including meal ideas or really good cookie recipes).

Good luck!

Betsy

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Welcome. I am pretty new myself. My 2 1/2 yr old daughter was just diagnosed after a biopsy on 7/17/06 and just found out my older daughter tested positive also the beginning of this month. It has been kinda tough because she has some developmental delays and has never really liked food anyway when she was 1 yr she basically stopped eating altogether. And just ate very minimal. It was a scary thing. It took the dr's 1 1/2 yrs to figure out it was celiac or even test for it. It was when we decided to take her to a GI dr who figured it out the first visit and blood work.

Sow elcome this is a great board with lots of great people to help and answer any questions you may have,they have helped me tremendously already.

Thanks Everyone

Celina


Nicole- 3 yrs old Positive Celiac Blood test- 6/21/2006 //// Normal result: <20,,,Nicole-80

Positive Biopsy for Celiac- 7/17/2006

Gluten-Free Since - 7/22/2006

Alivia- 7 years- old Positive Celiac blood test-Aug. 2006////Normal result:<4,,,Alivia-32.

Biopsy showed positive for Celiac Disease and moderate to severe damage (Blood Work for both girls were done in different labs that is why they are different)

Gluten free since:Dec.2006

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