going gluten-free

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ResearchMed
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Re: going gluten-free

Post by ResearchMed »

rene wrote: Thu Feb 08, 2024 2:56 pm
ResearchMed wrote: Thu Feb 08, 2024 2:39 pm
rene wrote: Thu Feb 08, 2024 12:45 pm There was a comment upstream about how ‘sensitive’ one can be towards gluten and adjust lifestyle based on that. NO NO NO. You go 100% gf when you have a celiac diagnosis. While one person might puke violently after ingesting a crumb of gluten, others barely react but internally damage in the intestines still occurs. Just don’t.

I'm not aware that there is damage from cross contamination for everyone.
IF the blood levels are low/normal, rather than sky-high "off the charts", our physicians at our major teaching hospital and medical school seem to think DH is doing fine now, as long as his bloodwork remains so low. We'll continue to work with them.

I'm not sure it's a good idea to tell others - strangers -"NO NO NO" or "Just don't" and making alarming statements about how "damage ... still occurs." That goes beyond discussions of where to get various types of specialty foods, etc.
Much better for everyone to work with their own medical team to make their own decisions.

And what is "504 celiac"?

RM
Just telling you what our doctors told us.. to not think that there is no internal damage when a child does not show immediate and aggressive symptoms. With celiac there is no 95% gluten free... sure some have worse effects than others when they take that gluten but damage occurs even if it doesn't show 'externally'. But the ONLY thing that works is 100% GF

I don't disagree with you... we just talk different things.

I agree that the standard to go by is the blood test values... every 6 months at the start, then annually you will get results and you will basically get an idea how successful you have been keeping gluten out of the system of you child.

I think we are talking different things here... when it comes to cross contamination I said already that I don't treat gluten as radioactive. I don't limit my purchases to only certified gf labels, plain gf labels etc... I use common sense and a bit of experience from how my girl reacts and that together with years of blood test results has made me comfortable in my approach. That said... i am talking about this idea that you can have a little bit of gluten because the reactions are not extreme. That is where we differ. There is only 100% gluten free for celiac patients. Btw, my wife is celiac and only found out after DD diagnosis... decades she lived with it and showed no signs of vomiting etc. Silent celiac... but the damage internally is there and continues until you go 100% GF. Now for cross contamination you can indeed (and I am) have different attitudes... I do eat with my DD at Chipotles and In&Out and don't use the Allergy Flag to make them change their gloves etc... we are good, there has been no issues with reactions and the blood test confirm we are doing good.

Thats all

As for the 504... its like an IEP at school that travels with this child during school years. You can stipulate things like "48 hours notice before field trip, providing home made lunch for those trips, no gluten food in class or cooking class, separate table for eating lunch, permission to go to toilet anytime etc etc

https://celiac.org/main/wp-content/uplo ... AL-pdf.pdf

It is not necessarily easy to get one. My school was difficult in doing this but at the same time we have an excellent relationship with DD's teachers and staff and they are doing all the right things for her

I'll repeat: "I'm not sure it's a good idea to tell others - strangers -"NO NO NO" or "Just don't" and making alarming statements about how "damage ... still occurs."
(In my opinion, statements like that can and do alarm people, regardless of whether you happen to think gluten is "radioactive". I'm not sure why that type of language is used otherwise.)

This type of wording may be among the reasons that some threads get locked...
Much better for everyone to work with their own medical team to make their own decisions."


And not everyone with celiac disease is a school child. Your wife apparently isn't, just as DH isn't; he was diagnosed very late in life.
It's too bad they don't generally do regular screening tests, but... that's in the past now.

RM
This signature is a placebo. You are in the control group.
rene
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Re: going gluten-free

Post by rene »

ResearchMed wrote: Thu Feb 08, 2024 3:57 pm
I'll repeat: "I'm not sure it's a good idea to tell others - strangers -"NO NO NO" or "Just don't" and making alarming statements about how "damage ... still occurs."
(In my opinion, statements like that can and do alarm people, regardless of whether you happen to think gluten is "radioactive". I'm not sure why that type of language is used otherwise.)
I still think we are talking past each other. There is literally nothing controversial in my comments. Do NOT feed anyone gluten if they are diagnosed with Celiac. If they want to block me or close a thread for that so be it.

From your handle it sounds like you may have a better medical education than me... entertain me with a study that shows me where I am wrong.

Also I know not everyone is a school child.. hence me bringing up my wife. The op is talking about a school child so my reply was focused on exactly that.
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familythriftmd
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Re: going gluten-free

Post by familythriftmd »

rene wrote: Thu Feb 08, 2024 4:36 pm
ResearchMed wrote: Thu Feb 08, 2024 3:57 pm
I'll repeat: "I'm not sure it's a good idea to tell others - strangers -"NO NO NO" or "Just don't" and making alarming statements about how "damage ... still occurs."
(In my opinion, statements like that can and do alarm people, regardless of whether you happen to think gluten is "radioactive". I'm not sure why that type of language is used otherwise.)
I still think we are talking past each other. There is literally nothing controversial in my comments. Do NOT feed anyone gluten if they are diagnosed with Celiac. If they want to block me or close a thread for that so be it.

From your handle it sounds like you may have a better medical education than me... entertain me with a study that shows me where I am wrong.

Also I know not everyone is a school child.. hence me bringing up my wife. The op is talking about a school child so my reply was focused on exactly that.
Yes, do not give gluten to celiac.

But the thread was started to discuss what foods people like to eat, especially in context of families where some can eat gluten in order to avoid discussing medical advice, which on this forum is verboten. Keeping it to food discussion I believe allows this to stay within the acceptable limits of discussion for the consumer subforum.
rene
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Re: going gluten-free

Post by rene »

familythriftmd wrote: Thu Feb 08, 2024 4:42 pm
the thread was started to discuss what foods people like to eat, especially in context of families where some can eat gluten
Understood.

On that note :

Trader Joes is quite good. They used to have a GF pdf list but I think they now use the search engine to filter GF. Lots of choices. When they label or say GF you can feel safe even if it does not show 'certified'.

https://www.traderjoes.com/home/product ... e%22%5D%7D

We buy their GF cookies and their GF muffins. They also have some decent GF baking/cake mixes.

For pasta we highly prefer the Barilla pastas. Note that you usually overcook GF pasta a bit. Also leftover GF pasta is disgusting so don't plan on making extra for the next day

Restaurants chains :

In&Out has an allergy flag process (they change gloves, serve individually) and dedicated fryer. We used to order "cheesburger protein wrap, flag for gluten allergy".. now we just order it without the flag.

Chick-Fil-A has a GF bun you can order. Not every store has one all the time so be ready for that
https://www.chick-fil-a.com/customer-su ... luten-free

Amy's drive through... that awesome question when you ask for GF... is it lifestyle choice or allergy reasons? Not that celiac is an allergy but Amy's gets it though and its a good place for celiac kids.

If your child is into sushi, ask your chef if they can make rolls with tamari or gf soy sauce.

Chipotle.. our DD's favorite... order a bowl and they understand the gluten allergy process. If you flag it they will wipe counter, change gloves.

We had to search but we found a local pizzeria that makes their GF dough off site and knows how to do GF pizza's. For reference, if we go to MOD Pizza and order their Gluten Friendly pizza she will react due to the massive cross contamination there.

Costco has some good GF items. For example their GF frozen cheese pizzas, Franz's bread is a good buy for $10 for a double pack. GF bread is a nightmare, no matter what they say it will suck compared to the real deal but it is something you get used to somewhat.

Again, it is a PITA to mix the kitchen with some GF and some non-GF. It becomes too much of a hassle. We make an exception when we do burger or pulled pork night. The GF buns are from Trader Joes as they are the best value but the boys have their gluten buns. Cooking GF is easy though, there are plenty of recipes that are naturally GF or can be made GF. Yes, pizza, bread and breaded items are not going to be the same but instead of fried chicken I make chicken pakora with rice/chickpea flour. When we make home made pizza pretend its awesome and later in the week will scarf a slice in town to make up for it.

For the parents of younger kids, become a king or queen in the kitchen to make a good/decent cupcake or cookies. You will need this skill for the many birthday parties where you want to make sure you kid doesn't get left out.

A lot of candy has gluten btw so check that during Halloween. Since you are starting this process don't be surprised if you continue to find gluten containing items in your kitchen even after checking one or two times already. you will make mistakes... it is okay.

Realize that you can't burn away gluten on the grill. No more gluten buns on the grate please. Also those cutting boards, the toaster etc need to be replaced. Buy some sleeves for toasters when you are traveling so you can use the AirBnB or hotel toaster. Be ready to shift holidays away from hotels to family suites that have a kitchen so you can cook your own food.

That question about a dedicated fryer is easy to forget when you go out for dinner... you will find your trusty few places and will stick to them.

And on and on.
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heartwood
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Re: going gluten-free

Post by heartwood »

For years our go-to frozen GF pizza has been Freschetta. It comes in margarhita, pepperoni or four cheese. https://www.freschetta.com/collections/ ... luten-free

The crust is rice starches and tapioca. We prefer the four cheese and add our own sausage. It's gotten pricey, currently $16.50 for one in the stores near our condo, with generally very limited availability.

We'd thought we'd tried all the other available brands and in general do not like Cauliflower crusts.

While in Costco I saw the Kirkland Supreme Cauliflower pizza. It was 2 for $11.99. No way to go seriously wrong trying it; two for less than one of the other, and it was available.

It's great! Very generous toppings and excellent taste and texture. The only drawback is the size of the 2-pack double carton makes it harder to fit in the freezer.

https://www.costcobusinessdelivery.com/ ... 20606.html

We still like the Freschetta, but the Kirkland is it's equal or better.
Merrilee
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Re: going gluten-free

Post by Merrilee »

All first degree relatives should be tested. Not sure if that is medical advice or also financial, there's costs involved, for sure. https://celiac.org/about-celiac-disease ... 5%20years.

Trader Joe's GF record is spotty, but improving. This is a resource we've found to be very helpful over the years - Gluten Free Watch Dog info on cross contamination, safe souces of oats, shared fryers, arsenic in rice products, etc.
https://www.glutenfreewatchdog.org/search?q=trader+joes
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