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Mama_to_Grace
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17 Aug 2012, 4:57 pm

My daughter has had severe eczema for her whole life. This coupled with some other symptoms like chronic stomach issues caused her Dr to run blood tests last week. I just received a call from their office stating I need to remove Gluten from her diet immediately. We have an appointment next week to discuss the test results-but I am assuming it was positive for Celiac.

I have not a clue as to how to do this with a child that is already underweight and eats only a select few things-most of which have gluten in them.

I need some tips or pointers on going gluten free. Cookbooks, websites, anything else would be appreciated. Thanks!



Bombaloo
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17 Aug 2012, 5:12 pm

I wish I had some good advice, I read Special Needs Kids Eat Right and thought it was OK but I haven't tried this yet. One thing the author of that book says is to remove gradually and not try to go cold turkey.



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17 Aug 2012, 5:17 pm

My previous roommate was gluten free so i have some experience: The way I understand it, is that it is easier to eat types of foods that naturally do not have gluten (mexican food) rather than foods that have a lot of gluten (italian food).

If you start off with types of foods that would be silly to have gluten in, then you can go from there easily. Much better than trying to get all of that gluten free stuff that can taste horrible, especially with a picky eater.



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17 Aug 2012, 8:16 pm

There are many gluten free books and recipes out there. Also, the health food stores, and even the supermarkets have gluten free alternatives. Among them are gluten free breads and pastas. There are many types of flour out there that don't have gluten. The health food stores will have a greater variety of them, but even supermarkets will have some. Also, consider buying a good bread machine, so you can make gluten free bread products at home. It will take some getting used to, but there are choices out there. :D



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17 Aug 2012, 9:19 pm

i'm the one in the family with celiac and asd but my whole family switched to gluten free since i'm the cook. there was a period of adjustment where the kids weren't happy. my oldest is the most difficult. he will only eat a few things and most of them use to contain gluten. i found a good gluten free flour mix that he liked and found some good recipes on their website jules gluten free. we rarely do bread anymore but we keep Udi's hotdog and hamburger buns for him. i make chicken nuggets sometimes by rolling chicken in gluten free flour and gluten free cracker crumbs. the kids around the neighborhood love my gluten free brownies, cupcakes, and waffles. i use the same gluten recipes. i just substitute the gluten free flour blend for regular flour. we did run into a problem with him not getting enough fiber (he won't eat veggies) so i started adding a little flax seed meal to the flour blend to increase the fiber content. i know the gluten free stuff is overwhelming at first but we've been doing it for a couple of years now and it's no problem. as for me, i haven't felt this physically well my whole life. i no longer have IBS, my anxiety has decreased, asthma is almost gone, and i just feel so much better.



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18 Aug 2012, 12:15 am

This is a tough one for young children, because they don't seem to fully connect what they eat to how they feel. My niece was recently diagnosed with Celiac and we were all at a fair, and she wanted a quesadilla but that uses flour tortillas ... She was so sad and frustrated, even though she knows how bad her stomachs have been and desperately wants them to end.

But cotton candy, corn chips (check the label) and a whole bunch of other fun things were a go.

I think there are 3 grains that commonly contain gluten, and wheat is a big one. Skip those any products with those grains, and you should be good. My SIL has found all sorts of breads and pastas that are gluten free and decently tasty, and fruits, veggies and meats are naturally gluten free.


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Kjas
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18 Aug 2012, 1:59 am

Here is an entire forum for celiacs:
http://www.celiac.com/gluten-free/
They have seperate sections for everything, including ones for parents and for recipes.
If you read around, I'm sure most of your questions will be able to be answered there.

All of this lady's recipes are gluten free and delicious.
I have tested many of her recipes with my nephews and niece, and all have been fully kid approved so far:
http://www.elanaspantry.com/

As a celiac myself, the easiest things to eat are things that are naturally gluten free. So that means vegies, meat, fruit, nuts, herbs, spices etc.
It also means the cuisines that are easiest are those that are from cultures which don't rely on wheat, barley or rye (or kamut or spelt). That means asian food and latino food are big on the menu. Particularly because you are a parent, it's easier to throw together a stir fry with rice noodle or a curry with rice for family dinners. The best alternative flours I have found so far are almond flour and coconut flour - you can make most things with these that you would be able to with normal flour (which should help the transition phrase).


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18 Aug 2012, 6:42 am

Mama_to_Grace wrote:
My daughter has had severe eczema for her whole life. This coupled with some other symptoms like chronic stomach issues caused her Dr to run blood tests last week. I just received a call from their office stating I need to remove Gluten from her diet immediately. We have an appointment next week to discuss the test results-but I am assuming it was positive for Celiac.

I have not a clue as to how to do this with a child that is already underweight and eats only a select few things-most of which have gluten in them.

I need some tips or pointers on going gluten free. Cookbooks, websites, anything else would be appreciated. Thanks!

They asked you to take her off gluten straight away? Without a colonoscopy? That's very interesting - do you mind if I ask what country you're from? In Australia you need a colonoscopy to be diagnosed with Coeliac disease - a blood test doesn't cut it (unless it's in exceptional circumstances and you also test for specific genetic markers.) I'm just curious...

Eh, I don't envy you this challenge. I have close family members who are coeliac and for them it has been a big challenge, mainly because gluten (and it's not just gluten, but a whole book of things you can't eat) is in a huge amount of processed foods. But saying that, they've learned to cope pretty well, and I'm sure you'll find a pattern of foods you can buy that works for the both of you. And if she does have coeliac disease, by cutting out gluten she'll be more likely to absorb nutrients from the the other foods you can manage to get her to eat, and so even though she might initially eat less, she may actually gain weight.

In terms of references, especially if she's a picky eater, the "4 Ingredients: Gluten Free" book may be handy.

But see what the doctor says and talk to a dietician. The former are good for diagnosis and the latter for management.


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Mama_to_Grace
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18 Aug 2012, 11:18 am

We are in the US. It was the nurse who called so I didn't get a lot of info. My daughter's eczema seems to be DH form of celiac, along with her apparent underweight/malnourishment, so I think that pretty much confirms celiac if her blood tests come back positive for the celiac markers? I don't know...will have to wait for the consult with the Dr. I really hope they don't want to do a scope, the blood test alone took several hours and quite a bit of trouble in the Drs office. My daughter doesn't do well with medical procedures or people touching her AT ALL.

Thanks everyone for the links. I picked up a few books at the bookstore but my daughter is already saying "no way". Spinningpixie, I really hope this helps my daughter's anxiety as well!



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18 Aug 2012, 2:15 pm

My daughter was gluten free for 9 months. Two things that helped me immensely: Tings http://piratebrands.com/products/tings/original and Bob's Red Mill http://www.bobsredmill.com/Gluten-Free

I would say that being gluten free isn't easy, but I wouldn't really say it is hard, either, once you get used to it. It's just a different way of eating and takes more planning. But if you stick to meat, rice, veggies, fruits, and potatoes, you really are OK. Plus, gluten free stuff is much more readily available now than it used to be when we did it. There are lots of options out there.


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Kjas
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18 Aug 2012, 4:59 pm

Mama_to_Grace wrote:
We are in the US. It was the nurse who called so I didn't get a lot of info. My daughter's eczema seems to be DH form of celiac, along with her apparent underweight/malnourishment, so I think that pretty much confirms celiac if her blood tests come back positive for the celiac markers? I don't know...will have to wait for the consult with the Dr. I really hope they don't want to do a scope, the blood test alone took several hours and quite a bit of trouble in the Drs office. My daughter doesn't do well with medical procedures or people touching her AT ALL.

Thanks everyone for the links. I picked up a few books at the bookstore but my daughter is already saying "no way". Spinningpixie, I really hope this helps my daughter's anxiety as well!


They can actually confirm celiac from the skin biopsy alone if she has DH. (They did this with me, the blood test and scope were optional)
Sometimes they do a scope to see just how much damage there is, and do another scope after 1 year gluten free to see how much they have healed. But it's not necessary, and if she doesn't do well with people touching her or medical procedures, then I would avoid it if possible.

Skin biospy and positive blood tests are plenty to confirm it.


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Mama_to_Grace
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18 Aug 2012, 6:48 pm

Kjas wrote:

Skin biospy and positive blood tests are plenty to confirm it.


Well, I just received the blood test results in writing and they are confusing! Her main positive result was in t-transglutaminase (tTG) IgG. The IgA was very low so I don't know what that means. They also did a Gliadin Abs IgA and IgG, both were negative. It's hard to find information on whether this means Celiac or not.

I found this blurb on the aacc.org website: "For individuals with a low but detectable concentration of total IgA, our testing scheme evaluates TTG and DGA, both the IgA and IgG isotypes. In patients who have no detectable IgA, testing should include TTG and DGA, but only the IgG isotype. Any positive result, regardless of the antigen specificity, would be consistent with a possible diagnosis of celiac disease, and a small intestine biopsy would be necessary."



Kjas
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19 Aug 2012, 12:35 am

tTG means that her immune system is in hyperdrive (extremely overactive) which would be consistent with celiac. If the IgG is positive also, then that is a definite yes. At her age, it's incredibly unlikely that she would have an autoimmune disease already which would cause the tTg to show up like that - in other words that probably means it's positive.


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19 Aug 2012, 11:40 pm

I love this mom's blog. She has a lot of great recipes.

http://www.adventuresofaglutenfreemom.com/



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25 Aug 2012, 11:32 pm

Mama_to_Grace wrote:
My daughter has had severe eczema for her whole life. This coupled with some other symptoms like chronic stomach issues caused her Dr to run blood tests last week. I just received a call from their office stating I need to remove Gluten from her diet immediately. We have an appointment next week to discuss the test results-but I am assuming it was positive for Celiac.

I have not a clue as to how to do this with a child that is already underweight and eats only a select few things-most of which have gluten in them.

I need some tips or pointers on going gluten free. Cookbooks, websites, anything else would be appreciated. Thanks!


You can readily buy gluten free products at markets such as Trader Joe's and whole foods. It's possible that she is underweight due to her chronic stomach issues.