Celiac disease: Thoughts, ideas, recipes etc

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GungHo
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Celiac disease: Thoughts, ideas, recipes etc

Post by GungHo »

My oldest son (9yo) was just diagnosed with celiac disease yesterday and the wife and I are slowly trying to come to terms with it. So after we finish off the groceries that are currently in the house (of course we went to the grocery store the day before his diagnosis 😕) we will be switching the whole family over. Seems only fair and his little brother is only 2 so he won't know the difference; but we want to maximize our chances at being successful so we need this to go as smoothly as it can. We have appointments scheduled with a dietician as well as a pediatric psychologist and my wife and I are both furiously reading everything we can. But some of the best advice I've ever Heard has come from you fine folks, so please drop some knowledge on me. We're anxious to learn.

Thanks
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Jeff V
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Re: Celiac disease: Thoughts, ideas, recipes etc

Post by Jeff V »

My condolences.
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Re: Celiac disease: Thoughts, ideas, recipes etc

Post by naednek »

so I was looking up Celiac disease and ummm I'll leave this search result right here...

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hepcat - "I agree with Naednek"
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Re: Celiac disease: Thoughts, ideas, recipes etc

Post by hitbyambulance »

GungHo wrote: Wed Sep 18, 2019 5:48 pm we will be switching the whole family over.
nice sacrifice - my mom was ordered to stop drinking due to pre-cirrhosis, but my dad refused to give up his alcohol in any form of solidarity (and in fact, increased his intake...)

maaaaybe one of you can also feel better after transitioning?
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Re: Celiac disease: Thoughts, ideas, recipes etc

Post by GungHo »

naednek wrote: Wed Sep 18, 2019 7:30 pm so I was looking up Celiac disease and ummm I'll leave this search result right here...

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Hah. Kinda of like the joke about how you can tell if someone is a vegan? But yeah that does seem to be an odd thing to share about yourself.
hitbyambulance wrote: Wed Sep 18, 2019 8:07 pm
GungHo wrote: Wed Sep 18, 2019 5:48 pm we will be switching the whole family over.
nice sacrifice - my mom was ordered to stop drinking due to pre-cirrhosis, but my dad refused to give up his alcohol in any form of solidarity (and in fact, increased his intake...)

maaaaybe one of you can also feel better after transitioning?

Well we need him to be successful(extensive family history of colon cancer and autoimmune disorders) plus I don't know how you tell a 9yo he can't eat birthday cake and ice cream...and then eat it right in front of him. It's not going to be easy I know that. But we're thankful we're trying to do this in 2019 and not 1989. And we're hoping it benefits my wife as well; she has an undiagnosed autoimmune disorder of some kind so that's even more incentive.
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Re: Celiac disease: Thoughts, ideas, recipes etc

Post by Lorini »

It’s not too hard. A friend of mine has celiac disease as well. Don’t eat anything with wheat or flour. Eat other foods that remember where they came from (ie avoid processed foods). You folks can have a very normal lifestyle if you look at the ingredients and make sure they don’t include flour. Flour is not nutritious anyway, so you won’t be missing much. Replace the wheat with corn for your grains.

Depending on what your current diet is there may be somewhat of a shock, but simply explain to your son that the food you’re eating now won’t make him sick and I’m sure he’ll be enthusiastic. I eat like this myself because I have a lot of sensitivities to chemicals, so I avoid processed foods.
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Re: Celiac disease: Thoughts, ideas, recipes etc

Post by ImLawBoy »

My wife is gluten free (intolerance, but not celiac), and has been the whole time I've known her. You're right that it is much better to be GF now than 30 years ago. You'll find a lot of GF items in regular grocery stores these days. They can be more expensive, unfortunately. We do have a mixed household, which helps to keep the costs down, but a lot of the stuff we eat is gluten free instead of preparing two separate meals. A few quick suggestions:

- Barilla makes decent GF pasta at a good price point, but be careful not to overcook it - it can start to fall apart.
- My wife prefers Schar brand GF bread, if that's available in your area.
- Kinnickinick (or something like that) makes good frozen sweets - donuts, cookies, etc.
- Invest in a GF cookbook or two. They often include lots of suggestions for substitutions if you're having trouble finding a particular ingredient. There are tons out there, but you might want to start with Bette Hagman.
- Read labels religiously. Fortunately most ingredient lists include common allergens in bold at the end, but I usually scour the list regardless just to be safe.
- My wife likes to bake, and she comes up with all sorts of GF flour concoctions. You don't have to go that far to give your kid birthday cake, though. There are plenty of boxed GF mixes.
- Don't be shy about asking for a GF menu at restaurants or for assistance in ordering off the main menu. If we go somewhere that takes reservations, I even mention it when making the reservation.

The last one is just my general advice and it may not work for you or your family, but I caution against going all-in on GF for everybody. Order off the regular menu for you and and your other kid when you go out. Have some (clearly labeled) treats at home that might have wheat in them. While you want your oldest to know you're all in this together, you also don't want to build resentment that you or your youngest are missing out on stuff. I think you're oldest is getting to a stage where he probably gets that.
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Re: Celiac disease: Thoughts, ideas, recipes etc

Post by Jaymon »

Go ahead and try the gluten free breads and such on the market like Udis. But if you want to skip that, most of them are complete rubbish. In general, if they have done something to try and replace the wheat, it turns out terrible. I mention Udis because its pretty widespread (look in the freezer in the "natural foods" section), but in my opinion it tastes like it was made from drandruff flakes and despair.

Instead, focus on finding foods that never had wheat to begin with. For example, Japanese rice noodles are delicious. But gluten free spaghetti noodles are something Satan would serve as eternal punishment for gluttony.

Ikea sells a couple of frozen cakes that are amazing. Here is the chocolate one. I had this available at a party of 10 year olds. Only one girl was gluten free, and there were regular cupcakes also available. This cake got eaten entirely, and there were cupcakes left over.

Blue diamond makes a series of crackers called Nut Thins I have tried many of them, and mostly they are good. Depending if you like the flavor of almonds or whatever.

Polenta is pretty good. I like the one in a solid tube, rather than the corn meal mash. You slice this biz into disks, fry, serve with spaghetti sauce or marinara sauce, add some sliced sausage and shredded Parmesan as well. You can get these tubes at most grocery stores. Its a pretty good way to keep enjoying the spaghetti style dishes.

There are a lot of gluten free cereal in the "natural foods" section of the grocery. However, there are also cereals in the standard aisle that are gluten free. Rice Chex for example are gluten free. But beware. Corn Pops and Rice Crispies are not.

Most potato chips and tortilla chips are gluten free. But be careful with the flavoring, some of the flavors like barbeque have gluten in the flavoring.



On the flip side, you are going to have trouble when going out to eat. Lots of stuff has breading, or flour added as a thickener. And some places use the same griddle, even though bacon is gluten free, it may have been cooked on the same griddle as some pancakes. Also fries are cooked in the same deep fryer that held chicken nuggets. You will find that its easier to be gluten free if you frequent asian restaurants, places where rice was the grain, and wheat was not really a thing.
A lot of yoga moms have gotten into gluten free because its a fad, and that has caused concern for those with celiacs. Restaurants roll their eyes now when asked about gluten free, they don't understand that cross contamination is a big problem.


Why do it know this stuff? One of my siblings has a severe gluten allergy. Like, eat a bite of cake and go to the hospital severe. Like cross contamination and spend the rest of the day on the toilet severe. So I have learned a bunch about it from family meals, both cooking in and going out. (my sibling is 20 years younger, so we didn't really grow up together, if that makes any sense)
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Re: Celiac disease: Thoughts, ideas, recipes etc

Post by ImLawBoy »

Jaymon wrote: Thu Sep 19, 2019 9:54 am You will find that its easier to be gluten free if you frequent asian restaurants, places where rice was the grain, and wheat was not really a thing.
Word of caution, however. Most soy sauce is made with wheat, so if they use it in their cooking you could be in trouble. There are good GF soy sauces out there, though.
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Re: Celiac disease: Thoughts, ideas, recipes etc

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GungHo wrote: Wed Sep 18, 2019 5:48 pm My oldest son (9yo) was just diagnosed with celiac disease yesterday and the wife and I are slowly trying to come to terms with it.
So my son was diagnosed with Celiac when he was 11. That was 4 years ago, so I am a future version of what you will be dealing with. (oooooh, I'm from the fuuuuture). Please, please, please feel free to ask me any questions. We have dealt with so many of these issues over the years.

There is already some great advice in this thread, especially about not overcooking GF pasta. The stuff they make now is really good, but you do have to be careful. We had lasagna for dinner tonight!

Like you, our house went completely GF. Got rid of a few items that were hard to clean like the toaster and started from scratch. We have a "few" non-GF items in the house, like some english muffins in the freezer, but we wanted our home to be his celiac safe space. On the plus side, I immediately lost about 5 pounds when we switched over. I don't keep GF out of the house, but it was enough to affect my weight!

His brother is 4 years older and adapted to it like a champ. He's a good kid and was very supportive. The gene is hereditary and he also tested positive for the gene, but it is not active, although it can activate at any time like any other autoimmune disorder.

Some things off the top of my head.

1. Eating out can be a massive pain in the ass. Most people don't realize that even a crumb of gluten will trigger a reaction. If the server is not sure, doesn't understand and can't talk to someone that actually knows whether gluten is present, go somewhere else. With that in mind, prepare to meet your new favorite app....

2. Find Me Gluten Free. Social powered and it works worldwide. The absolute best resource for finding celiac friendly places to eat. Eating out is more difficult, but doesn't have to be limiting. Something I have noticed is that CHAIN restaurants are usually much better for celiacs. They usually list allergies and the staff is generally trained on it. No better feeling than a server knowing exactly what your concerns are.

3. Reddit. Yes the cesspool of humanity is also a good celiac resource. Try: https://www.reddit.com/r/Celiac/ and https://www.reddit.com/r/glutenfree/

4. Substitute kid favorites with GF items. Our house is full of cookies, cakes, pretzels, crackers and pasta! Again we wanted him to be able to enjoy the things other kids could. Parties and school stuff will still be challenging, but talk to the teacher and see if you can't slip in a GF cupcake so he can join in the fun. We used this experience to teach him about health and how living GF can be easier if he chooses healthy options like fruits and salads.

5. Beware of cross contamination. It can come from insidious places. French fries are great. Unless they are fried in a shared fryer with breaded items like nuggets. Most of the time they are. GF pasta on the menu. Yay! But is it boiled in the same water as regular pasta? Boo.

6. Brands. Again off the top of my head. Barilla pastas are great. The aforementioned lasagna was made with it. For bread, Canyon is fantastic. They make bagels, breads, etc. Corn tortillas, tortilla chips, rice noodles, all good. Check out Walmart. They have a surprisingly good GF section.
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Re: Celiac disease: Thoughts, ideas, recipes etc

Post by GungHo »

Yall are awesome. Thank you. Lots to look at here. We had our first experience tonight with the 'the other kids get to eat that, but you don't' after a soccer game when the post-game snacks were handed out. He was disappointed of course but when mom told him he couldn't eat it, he handled it well. The motivation to stop his stomach pain is obviously a powerful one and we need to keep that in focus.

Thank y'all again
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Re: Celiac disease: Thoughts, ideas, recipes etc

Post by Jeff V »

GungHo wrote: Thu Sep 19, 2019 2:11 am plus I don't know how you tell a 9yo he can't eat birthday cake and ice cream...and then eat it right in front of him.
You think that's hard? Wait another 10 years when you have to explain why he can't drink beer.
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Re: Celiac disease: Thoughts, ideas, recipes etc

Post by LawBeefaroni »

Jeff V wrote: Fri Sep 20, 2019 10:22 am
GungHo wrote: Thu Sep 19, 2019 2:11 am plus I don't know how you tell a 9yo he can't eat birthday cake and ice cream...and then eat it right in front of him.
You think that's hard? Wait another 10 years when you have to explain why he can't drink beer.
Or don't. :obscene-drinkingcheers:

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Plus, all the good spirits are gluten free.
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Re: Celiac disease: Thoughts, ideas, recipes etc

Post by Jeff V »

4.5%? I think that is just beer-colored water. ILB, didn't you try such a thing before? I've not seen any favorable reviews on them.
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Re: Celiac disease: Thoughts, ideas, recipes etc

Post by ImLawBoy »

There are some tolerable GF beers out there, but I've not been terribly impressed overall. The best I've tried is probably Glutenberg, which makes a few decent styles. Two Brothers makes a pretty decent beer that is "gluten removed" (Prairie Path golden ale), but I think there may be a minuscule trace of gluten remaining, so I don't know how that would impact someone with Celiac.

But who knows how GF beer may have developed by the time GungHo's kid starts drinking? It's already exponentially better than it was 10 years ago. Plus there's booze, wine, and hard ciders. GF people have plenty of ways to alter their reality if needed. ;)
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Re: Celiac disease: Thoughts, ideas, recipes etc

Post by Jag »

ImLawBoy wrote: Fri Sep 20, 2019 12:14 pm But who knows how GF beer may have developed by the time GungHo's kid starts drinking? It's already exponentially better than it was 10 years ago. Plus there's booze, wine, and hard ciders. GF people have plenty of ways to alter their reality if needed. ;)
I'm already having this discussion with my son. He knows the good GF vodka already. I don't see him being a big drinker though.
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Re: Celiac disease: Thoughts, ideas, recipes etc

Post by El Guapo »

LawBeefaroni wrote: Fri Sep 20, 2019 11:55 am
Plus, all the good spirits are gluten free.
Indeed - that's the good news here.
According to the National Institutes of Health’s Celiac Disease Awareness Campaign, distilled alcohol is inherently gluten-free. This includes gin, vodka, scotch whisky, and rye whiskey. Although whiskeys are derived from wheat, barley, or rye, the distilling process removes the gluten proteins. Wine is almost always gluten-free.
Everyone should be drinking more whiskey than beer anyway.
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Re: Celiac disease: Thoughts, ideas, recipes etc

Post by Jeff V »

El Guapo wrote: Fri Sep 20, 2019 12:33 pm Everyone should be drinking more whiskey than beer anyway.
Bleh. I have a half-bottle of Dewers that's gone untouched since left here by a visitor from Hong Kong about a year ago.
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Re: Celiac disease: Thoughts, ideas, recipes etc

Post by El Guapo »

Jeff V wrote: Fri Sep 20, 2019 12:56 pm
El Guapo wrote: Fri Sep 20, 2019 12:33 pm Everyone should be drinking more whiskey than beer anyway.
Bleh. I have a half-bottle of Dewers that's gone untouched since left here by a visitor from Hong Kong about a year ago.
Drink this instead:

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Re: Celiac disease: Thoughts, ideas, recipes etc

Post by Jeff V »

I've been served way more expensive whiskey than that and have concluded I just don't care for it. Back in childhood when I was getting shitfaced on whatever was available, there was a notable side effect when it came to liquor - by and large, if I hurled after drinking it, I lost all taste for drinking it ever again. The exception might be tequila, but maybe not, I still can't stomach Cuervo but I do like more cultivated brands. Still, not enough to have any in the house.

The hard stuff currently in my house consists of: the aforementioned Dewars, 3/4 bottle of some sort of Polish black cherry vodka, and an unopened bottle of Swedish vodka purchased for a party 4 or 5 years ago. I do like vodka, but I like beer or wine more. We entertain a lot too, and no visitors have ever offered to hit these bottles.
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