Gluten-Free / Celiac Disease thread

Being recently diagnosed with Celiac, and seeing the explosion in the gluten-free food industry, was wondering if anyone else here is in the same boat?  It's a huge lifestyle adjustment, to say the least.

Out of curiosity - how did you find out? 

Blood test

celiac here. diagnosed around 8 years ago.  was scoped and had a biopsy to confirm. the blood test can be inaccurate but if your symptoms line up then it's most likely correct. 

it's way easier to be GF today than it's ever been. many more options in the grocery store and when eating out.. but there's still lot's of explaining i have to do sometimes. it's more understood and more people in restaurants are aware of what celiac means but that doesn't mean they always get it right. 

i said good bye to beer long ago and gave up finding good beer that is truly GF. much of it is gluten removed which isn't the same thing as gluten free.. even though it's sold in stores as gluten free. i stick to wine and cider when i have a drink. 

there's a lot of things you don't expect to have wheat in the ingredients list. i read everything even when it says gluten free. vinegar that isn't distilled has gluten somehow.  lot's of sauces and stuff are not GF. 

i just try to stick to meat and veggies and once in a while make some GF pancakes or get a GF pizza (there's good GF pizza in portland) and lot's of resaurants will make GF versions of things.  

i can ramble about this stuff but if you have any questions ask away. i'll do my best. also there's a subreddit r/celiac which can be useful. 

https://www.reddit.com/r/Celiac/

Good info, I'm reading all the time, and checking ingredients & Google on a daily basis for diet.  Also was gifted a Nima Gluten Tester, which will hopefully come in handy overseas, as well as some foreign language Celiac cards describing my condition.

https://www.nimasensor.com/

I'm celiac too, as is my sister.  Got diagnosed over 5 years ago and yeah, it was a big lifestyle adjustment alright.  Hardest ting by farr  at the time was having to give up beer.  I'm over that now and drinking whiskey like a true champeen (all distilled spirits are GF praise the lawd).  Like Iggy I can't get into the GF attempts at beer, but a good dry cider every once in a while is nice.

  On 8/23/2019 at 3:41 AM, ignatius said:

it's way easier to be GF today than it's ever been.

Words to live by, I constantly remind myself of that everyday I wake up is the best day to be living with this condition.

Best advice I can offer is find a real specialist doctor to help you manage it, not just a regular gastroenterologist for whomst've celiac is one of dozens of conditions they need to keep current on. I'm fortunate to be only a 1 hr+ drive to Boston where I see a Dr who's also heads the research program at Harvard med school.  Turns out there's a spectrum (lol) of celiacs out there, I'm highly sensitive but paradoxically have very few symptoms apart from getting DH on my elbows and knees if I accidentally ingest gluten.  OTOH were my sister to have gluten she's be lying on the couch w/ abdominal pain for hours.

Also, oats, while innately GF are very susceptible to cross-contamination due in large part to how they're mass-produced alongside wheat.  They're still a regular part of my diet but I can only have products that have been tested/certified GF (Quaker GF oats and Bob's red mill are generally good in this dept.).  Cheerios can't truss em.

sounds like a pain in the ass.

  On 8/23/2019 at 4:53 AM, usagi said:

sounds like a pain in the ass.

it can be annoying and frustrating at times.. especially when traveling.. but i'm often surprised when i ask about GF stuff and i get the GF menu brought out to me. there's also many 100% GF restaurants all over the world that make amazing food. apparently Italy has great GF restaurants. pretty much everywhere in the USA you can find something GF but road trips can be tough. i pack food and snacks.

what's cool.. if you fly you can request a GF meal in advance.. usually when booking a flight. they need 24 hours in advance to get it. it's usually not bad. it's on par w/airplane food i guess. 

there's a lot of dumb stuff though. i've read that some breakfast chains put things in their eggs to make them fluffier.. shit like that. i always order over easy so i know i'm not getting scrambled eggs w/pancake batter added to them or something. 

i've heard that strip clubs are naturally gluten free. 

how do you guys feel about the gluten free diet fad among non-celiac people being conflated with the real medical condition and therefore lessening the importance of requests for gluten free food in the minds of those who are ignorant regarding the topic?

  On 8/23/2019 at 6:17 AM, Zeffolia said:

how do you guys feel about the gluten free diet fad among non-celiac people being conflated with the real medical condition and therefore lessening the importance of requests for gluten free food in the minds of those who are ignorant regarding the topic?

My partner used to watch the Kardashian crap, and Kourtney got busted by that ex-husband of hers for being fake Celiac, which I guess he really is.  I'd say the non Celiac popularity is maybe a 50/50 celebrity influencers / Millennial hipsters.  IMO, any attention brought to the subject and subsequent new food products available is all good, except for the big food companies processing the shit out of their GF products, thereby defeating the purpose of eating whole foods.

I’ve been eating (largely) gluten free for the past year, not because I have celiac, but because I have eosinophilic esophagitis (food gets stuck in my esophagus and I can’t swallow or vomit. It’s fucking terrible. I’ve had to go to the hospital to have my esophagus stretched a few times. No fun).

I’ve found it is often aggravated by most breads and most meats, besides fish... although I’ve read that some people with the condition have it aggravated by fish... not for me tho.

Once I started avoiding most things with gluten and meats (as well as dairy, alcohol and sugar... and white rice) I’ve been able to swallow semi-normally. 

I’m very happy that there are lots of gluten free options out there, especially with pastas. Trader Joe’s brown rice pasta is a big winner for me.

Also, Mexican food is a lifesaver. 

  On 8/23/2019 at 8:18 AM, J3FF3R00 said:

I’ve been eating (largely) gluten free for the past year, not because I have celiac, but because I have eosinophilic esophagitis (food gets stuck in my esophagus and I can’t swallow or vomit. It’s fucking terrible. I’ve had to go to the hospital to have my esophagus stretched a few times. No fun).

I’ve found it is often aggravated by most breads and most meats, besides fish... although I’ve read that some people with the condition have it aggravated by fish... not for me tho.

Once I started avoiding most things with gluten and meats (as well as dairy, alcohol and sugar... and white rice) I’ve been able to swallow semi-normally. 

I’m very happy that there are lots of gluten free options out there, especially with pastas. Trader Joe’s brown rice pasta is a big winner for me.

Also, Mexican food is a lifesaver. 

Expand  

what about indian food? for someone who grew up on mexican food, indian food is the next level of deliciousness and it's kind of similar, it's mandatory

  On 8/23/2019 at 10:01 AM, Zeffolia said:

what about indian food? for someone who grew up on mexican food, indian food is the next level of deliciousness and it's kind of similar, it's mandatory

I can handle Indian food fairly well, aside from white rice and anything with meat. It's usually (and by usually, I mean 80-90% of the time) lean white meat or beef that gets stuck.

I do ok with Indian veggies and tofu but I still try to avoid breads like naan, samosas, etc. It's sad.

Oddly, spicy food doesn't seem to be a problem for me. For example, I've never had trouble with spicy Thai food (veggies, seafood or tofu), especially if it's with the yummy purple rice.

Potatoes are sometimes a problem but sweet potatoes seem fine. Tomato sauce tends to give me reflux, so I still avoid it. Scaring from reflux is suspected to have contributed to the whole debacle in the first place... hence I try to also avoid dairy, sugar, alcohol, and meat. Those things all do a number on my stomach. I'll cheat and have a glass of wine here and there, tho. 

  On 8/23/2019 at 8:18 AM, J3FF3R00 said:

I’ve been eating (largely) gluten free for the past year, not because I have celiac, but because I have eosinophilic esophagitis (food gets stuck in my esophagus and I can’t swallow or vomit. It’s fucking terrible. I’ve had to go to the hospital to have my esophagus stretched a few times. No fun).

I’ve found it is often aggravated by most breads and most meats, besides fish... although I’ve read that some people with the condition have it aggravated by fish... not for me tho.

Once I started avoiding most things with gluten and meats (as well as dairy, alcohol and sugar... and white rice) I’ve been able to swallow semi-normally. 

I’m very happy that there are lots of gluten free options out there, especially with pastas. Trader Joe’s brown rice pasta is a big winner for me.

Also, Mexican food is a lifesaver. 

Expand  

My father and I both have problems with esophagus, he had to have surgery for it.  I find, when I have problems swallowing, even liquid, that tilting your head all the way back to straighten out your throat helps me to swallow, even if it's painful going down.

Me when I have to take one of my kids to a birthday party at some bouncy-zone place:

I joined that club 2 years ago, but realized what it is earlier this year.

One thing that for whatever reason works for me in situations where i couldn't avoid ingesting gluten or didn't realize that i did, is to ingest a fluid antiallergic agent called "Dimethindene Maleate", that calms my belly down in desperate situations.

I'm not sure what products are out on other the markets than the german one, here this stuff is called "Fenistil".

  On 8/23/2019 at 4:17 AM, Rubin Farr said:

https://www.nimasensor.com/

Amazing! I want one!

I've been prescribed Creon to take with meals, it's also a good supplement when eating something questionable:

https://www.creon.com/about-creon

(Funny)

I used to joke and bash on pretend celiacs when the trend started... I've had a nebulous and chronic type of prostatitis/CPPS for about 10 years, the kind that docs can't touch, and personally found out about two years ago that going gluten free (among other diet restrictions, stretching and warmth treatment) is one of the only things on the planet that help with the main symptoms (strained/painful pelvic intramusculature and having to pee a lot). It's hard to keep up for a bread and pasta lover and it takes a month or two before the flora stabilizes and symptoms change, but it's pretty amazing what a difference it makes. 

We all have varying chemistries and intolerances, but gluten is an irritant and gluten products are mostly sugary. Food is a big deal, equally medicine and poison, there's so much to watch out for out there. You never know how long you have before your body starts punishing you for careless diet choices. 

  On 8/23/2019 at 6:17 AM, Zeffolia said:

how do you guys feel about the gluten free diet fad among non-celiac people being conflated with the real medical condition and therefore lessening the importance of requests for gluten free food in the minds of those who are ignorant regarding the topic?

I've experienced mild annoyance or simply obliviousness from clerks when asking about gluten contents and substitutes. I don't care - a lactose intolerant kid almost died recently because the staff at a local coffee shop stupidly served him dairy ice cream. Sadly, gluten makes bread fluffy and delicious...  substitutes at Subway and similar joints are depressing! Pasta substitutes are kinda pricey and not great either (ever had a glutenfree spaghetti bundle remain a bundle after you've cooked it?). I find it easier to just make different meals.

Gluten intolerance in men = Lack of testosterone. 

  On 10/20/2019 at 7:44 AM, Schlitze said:

Gluten intolerance in men = Lack of testosterone. 

"eat some bread pussy"

the other night I ate a little something i thought was GF but wasn't.  my guts felt like they were being twisted in opposite directions. i'll spare you the rest of the details

Just baked some nice german gluten free sourdough bread.