Gluten-Free / Celiac Disease thread

[thebotmakes]

Another gluten intolerant here, diagnosed 10 years or so ago as a result of standard tests they do if you’re diabetic cause the two are linked.  Things are a lot better know than they were even 10 years ago, selection is much better.   Still a total pain if you’re going out socially though.

[Rubin Farr]

8 hours ago, thebotmakes said:

Another gluten intolerant here, diagnosed 10 years or so ago as a result of standard tests they do if you’re diabetic cause the two are linked.  Things are a lot better know than they were even 10 years ago, selection is much better.   Still a total pain if you’re going out socially though.

Are you affected by airborne wheat flour?  I keep reading conflicting info about its risk, or if the somewhat hypochondriac wing of Celiac patients overplay it.

[Entorwellian]

I have it here too. It was a huge problem for me from 2012-2016. The first "gluten attack"  I had I thought I was having a heart attack. It was the second most painful thing I ever went through. I eat nothing but beans, rice, lots of vegetables, eggs and the occasional white meat. It sucked the first couple of months but your brain adjusts and makes the boring food more flavorful for you. I felt so much better and it is a relief not having to run to the bathroom 15 times a day.

 

Before that I had a really bad diet. Like cinnamon toast crunch for breakfast, pizza for lunch and then ribs and fries for dinner for like 15 years.

Edited March 11, 2020 by Entorwellian

[thebotmakes]

2 hours ago, Rubin Farr said:

Are you affected by airborne wheat flour?  I keep reading conflicting info about its risk, or if the somewhat hypochondriac wing of Celiac patients overplay it.

Not sure tbh.  My wife was great and when I was diagnosed we went 100% gluten free in the house (since we had my daughter we’ve changed that, but still don’t have flour in the house and bread etc is all on one isolated work surface).  
 

I do know though that when I go to other people’s houses and stay I tend to get a bit of a sore stomach afterwards even if they’re really careful, not a full blown attack but a bit bothered, so I guess there’s something in it.  No other explanation for it really.  Just something I’ve had to come to expect (the alternative is hiding in your house and fuck that ).

[BobDobalina]

1 hour ago, thebotmakes said:

(the alternative is hiding in your house and fuck that ).

Pretty sure Coronavirus got you covered blud

I feel like I'm on the way end of some Celiac spectrum.  If I accidentally ingest gluten I have no GI distress/pain at all (maybe if I housed a baguette but I'm not about to find out).  Not counting the anemia the led to my diagnosis, the only real symptom I've ever had is DH, which is where your epidermis somehow gets tRiGGeReD by gluten and results in a rash (usually on elbows and/or knees).

Quote

DH affects 10-15% of people with celiac disease. DH patients frequently have no digestive symptoms. DH can affect people of all ages, but most often appears for the first time in those between the ages of 30 and 40. People of northern European descent are more likely than those of African or Asian heritage to develop DH.

This is me to a tee, thankfully since I've been strict GF for a couple of years now it's quite rare I get it these days (usually the result of a fuckup on my part) and when do it's really mild and unnoticeable.

Edited March 11, 2020 by BobDobalina

[ignatius]

was just informed about this place which is a 10 minute drive from my house. some how hadn't heard of it but i mostly eat at home these days until i can't stand my own cooking. 

https://www.backtoedenbakery.com/cafe

all GF and vegan. that's fine w/me. i'll have to try it when i get a craving. there's a lot of GF options in this town though. 

[Rubin Farr]

Holy cow!

https://sciencenorway.no/gluten/new-pill-against-celiac-disease-protects-fully-against-the-effects-of-gluten/1886151

[ignatius]

5 hours ago, Rubin Farr said:

Holy cow!

https://sciencenorway.no/gluten/new-pill-against-celiac-disease-protects-fully-against-the-effects-of-gluten/1886151

saw this the other day. it's promising but seems still lot's of work to do. it'll take multiple options for people. the trials said they didn't likely have people who have the most severe symptoms when being glutened because those people are very unlikely to take part in trials. 

sounds like it could be effective against accidental glutening and treatment... but would still be a roll of the dice for many w/celiac. hopefully more testing brings more good news.  so glad this work is being done and discoveries are being made. i'd love a murphy's irish stout and a slice of real pizza some day. 

[Rubin Farr]

1 hour ago, ignatius said:

saw this the other day. it's promising but seems still lot's of work to do. it'll take multiple options for people. the trials said they didn't likely have people who have the most severe symptoms when being glutened because those people are very unlikely to take part in trials. 

sounds like it could be effective against accidental glutening and treatment... but would still be a roll of the dice for many w/celiac. hopefully more testing brings more good news.  so glad this work is being done and discoveries are being made. i'd love a murphy's irish stout and a slice of real pizza some day. 

Real pizza, sandwiches, calzone, soft pretzels, churros, cakes, pies, cookies, strudel, soy sauce, fried food, eating at restaurants again, the list is endless! Now I’m hungry.

[ignatius]

1 hour ago, Rubin Farr said:

Real pizza, sandwiches, calzone, soft pretzels, churros, cakes,  pies, cookies, strudel, soy sauce, fried food, eating at restaurants again, the list is endless! Now I’m hungry.

there's Kikkoman GF soy sauce. not tried it but seems like it's more or less the same. fuckn bagels and croissants and donuts...fucking ay. i miss a good donut.  lot's gf GF eats in portland though.. lucky for that. 

[Rubin Farr]

10 minutes ago, ignatius said:

there's Kikkoman GF soy sauce. not tried it but seems like it's more or less the same. fuckn bagels and croissants and donuts...fucking ay. i miss a good donut.  lot's gf GF eats in portland though.. lucky for that. 

When I do eat sushi, I make do with this, but is it hella salty.

[Petajaja]

For anyone who's just gluten sensitive / intolerant (not celiac) I recommend looking into rebalancing gut microflora / leaky gut / things you can do to help the health of your gut lining. My GF was having really severe reactions to wheat / rye (not spelt for some reason) after having been on proton pump inhibitors for way longer than one's supposed to which damaged her gut (medical incompetence).

After strictly dieting for almost a year as well as eating foods / supplements that help kill candida overgrowth and then eating foods that help heal gut (lots of collagen like bone broth) she eventually and quite suddenly one day was able to eat these foods again and has been smashing the gluten ever since after spending so long being completely unable to eat the smallest amount (even soy sauce could set her off)

Happy to give more info for anyone who's going through something similar

[Rubin Farr]

15 minutes ago, Petajaja said:

For anyone who's just gluten sensitive / intolerant (not celiac) I recommend looking into rebalancing gut microflora / leaky gut / things you can do to help the health of your gut lining. My GF was having really severe reactions to wheat / rye (not spelt for some reason) after having been on proton pump inhibitors for way longer than one's supposed to which damaged her gut (medical incompetence).

After strictly dieting for almost a year as well as eating foods / supplements that help kill candida overgrowth and then eating foods that help heal gut (lots of collagen like bone broth) she eventually and quite suddenly one day was able to eat these foods again and has been smashing the gluten ever since after spending so long being completely unable to eat the smallest amount (even soy sauce could set her off)

Happy to give more info for anyone who's going through something similar

De-toxing from gluten is a slow but rewarding process, and as you say, rebalancing and relearning are essential. I also have to take Creon with all food, which is a digestive enzyme that costs $1,000 a bottle here. I have about $10,000 worth hoarded for an emergency, hurricane, lapse in insurance, etc. 

[Petajaja]

Even if not for the sake of gluten intolerance / sensitivity, sorting ones gut is a life changer, I did the same thing when my gf was doing the diet and there and I noticed a massive decrease in general brain foggyness

Man, sucks to hear that you need the Creon and it's so expensive, how long does a bottle generally last you?

[ignatius]

the first ingredient in Soy Sauce is Wheat. so.. a small amount will set off anyone sensitive to gluten. it's literally wheat, soy and salt water. 

i read a lot about probiotics which leads me to believe when taken as a supplement (like many supplements) they don't do anything. one study showed that even taking them after a round of antibiotics did not bring back good gut bacteria and actually SLOWED the return of normal gut bacteria balance. when eaten in foods like yogurt this might be different and have some benefit. 

the only OTC thing i've taken to help w/gut issues other than heart burn meds.. is papaya enzyme extract which is something that aids in digestion and helps w/some nausea sour stomach type symptoms. i don't take it often.. maybe once a week.

my friend's sister had leaky gut and it took FOREVER to figure out. she had an allergic reaction to some food.. then was suddenly allergic to many many foods. when the initial reaction happened the inflammation in her gut caused other things already in her stomach to be reacted to by her immune system.. then the inflammation lasted for a long time so anything she ate was making her sick.. she had to do some anti inflammatory things and restrict diet until it subsided then her immune system was retrained on foods. weird. guts and bodies are weird. 

ymmv of course. if something works for you and isn't harmful in other ways then obviously.. do it. 

 

[Rubin Farr]

35 minutes ago, Petajaja said:

Even if not for the sake of gluten intolerance / sensitivity, sorting ones gut is a life changer, I did the same thing when my gf was doing the diet and there and I noticed a massive decrease in general brain foggyness

Man, sucks to hear that you need the Creon and it's so expensive, how long does a bottle generally last you?

It depends on what I eat, meals don’t usually work for me, so small healthy snacks throughout the day. So snacks = 1,2 capsules, a meal involving meat or protein = 4 capsules. Whenever they auto refill, I grab (3) bottles at once, just to stock up on such an expensive med. These are 36,000 unit caps, the largest capsule they make, I believe. They’re like horse pills  

And yes, processed soy, even tofu, is full of wheat. Go to your local grocery frozen food isle, and try to find something that doesn’t contain soy or wheat. Unless it’s frozen veggies, you’re SOL.

[ignatius]

2 minutes ago, Rubin Farr said:

It depends on what I eat, meals don’t usually work for me, so small healthy snacks throughout the day. So snacks = 1,2 capsules, a meal involving meat or protein = 4 capsules. Whenever they auto refill, I grab (3) bottles at once, just to stock up on such an expensive med. These are 36,000 unit caps, the largest capsule they make, I believe. They’re like horse pills  

wow. that's some maintenance you have to deal with. fuckn pancreas! at a minimum you should get some kind of refund from the universe or like a ten minute phone call w/god to make complaints and consult on future designs. 

glad you have the meds you need. i stock up on my meds as much as possible as well. it is weird to have that kind of background anxiety about medication and chronic health stuff. i hope you're coping w/that well. i came to terms w/a lot of it over the last couple years. relativity helps. 

[Rubin Farr]

This would be so great if it happens. Gluten labeling in the US is a complete farce.

[Rubin Farr]

Monoclonal antibodies being studied as celiac treatment: 

https://www.beyondceliac.org/research-news/monoclonal-antibody-investigated-celiac-disease-treatment/

[ignatius]

Monoclonal antibodies being studied as celiac treatment: 
https://www.beyondceliac.org/research-news/monoclonal-antibody-investigated-celiac-disease-treatment/

Sounds promising and I like that it’s presented in a realistic way instead of overhyped clickbait.


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[Rubin Farr]

[BobDobalina]

lol

TBF Bob makes a shit-ton of GF products, so for some Steve Brule type stockboy to do this is understandable

[Rubin Farr]

Celiac service dogs, very cool but very pricey

https://www.platinumperformance.com/articles/canine-companion-with-a-cause.html

the fact they can train dogs to detect Red Dye 40 is amazing 

[Rubin Farr]

 

[ignatius]

11 hours ago, Rubin Farr said:

 

so long as they don't mix up the boxes by mistake.. i mean.. someone has to keep track of which boxes have dismembered journalists in them and which boxes have the GF foods. 

edit: unless the dismembered journalist is also GF.. i know.. it's a bad joke. it was early

Edited September 7, 2022 by ignatius