#celiac disease

[sugarcoatednightshade]

Yeah I’ve seen ingredients lists vaguely labeled with “starch” or just “thickening agents” and gives no clue as to whether it’s thickened with corn starch or wheat starch or potato dust from mars.

Disability is not a punishment, but I think the world would be genuinely improved if every person involved in writing or regulating ingredient labels was mysteriously inflicted with at least one food allergy falling under each of the following categories: "natural flavors," "modified food starch," "artificial flavors," "spices," and "color." Down with ingredient labels so vague that they defeat the entire fucking point.

[joe-spookyy]

experience i just had while searching for celiac disease management tips

[talkethtothehandeth]

If you have celiac and buy the brand Van’s for their waffles, please know that 9 days ago there was a recall because some of the packages of the gluten free waffles may contain “undeclared” wheat. And if you have celiac, you know “may” might as well mean “does”.

This recall only applies to boxes with the matching lot codes and numbers, and do not pertain to other products that Van’s has to offer. These boxes were distributed in AZ, CA, FL, GA, IL, NC, & WA. Please check your boxes immediately to ensure your own safety and save yourself the painful reactions to gluten. It’s advised the purchased packages be either thrown out (or given to someone who can eat wheat so as not to waste it) or return the product to where you’ve purchased it from.

“The U.S. Food & Drug Administration website published the recall July 3. It applies to certain packs of Van's Gluten Free Original Waffles with lot code UW40193L, expiration date Jan. 19, 2024, and UPC 0 89947 30206 4. According to the Van's recall, some of the packs of waffles may contain undeclared wheat.”

[slipintotragedy]

it’s disability pride month so i want to talk about one of my least favorite stigmas around celiac disease

in lots of media, being gluten free is played as a joke or something someone is to be annoying/pretentious. the amount of times i’ve heard jokes like that is honestly disheartening.

it also doesn’t help with the general population’s belief that celiac disease/gluten sensitivities are not serious. i’ve been diagnosed with celiac disease for 3 years now, i’ve been gluten free for about 4, and it has substantially improved my quality of life. i can’t afford risking cross-contamination because it leaves me sick for days. nearly every time i have a reaction to gluten, it’s hard for me to even drink water the next day because my body is an absolute mess. i’m miserable and fatigued for days until my body heals. not to mention the long term effects that have left me unable to stand/walk around for extended periods of time because my joints are pretty weak.

being gluten free NEEDS to be taken seriously. it’s not a choice i’ve made because i’m hoping on the latest fad, its not a preference, it’s an autoimmune disorder.

[spookysalem13]

I'm chronically ill. I'm disabled physically and mentally. I live a rough life from day to day. People always tell me how strong I am.

This may be with the best of intentions but in all honesty I'm not strong, I'm very weak from being broken down every single second of my life from my chronic illnesses.

I don't get to live my life, I'm surviving not thriving.

[sometimes-men-need-help-too]

Whether we're talking about allergies or intolerances or something autoimmune like celiac disease, it is never okay to "test" someone by putting that forbidden substance into their food

Even you're doubtful. Even if you think it's not real. Even if you think it's part of a fad. Even if it doesn't make sense to you. Even if you think it's fine because "it's okay to live a little."

It. Isn't. Okay.

Let's be real, it isn't a "test" it's poisoning them

[crippleprophet]

psa for usamericans with food allergies :\

ID: a screenshot which reads: FARE will continue to share alerts as we have in the past, but the food allergy community should be aware that because of a recent presidential administration directive, there has been a mandated pause in external communications from the Department of Health and Human Services. This includes external FDA sharing of food allergen recalls. Until this changes, you may also want to check FDA's recall page directly for most up-to-date information. end ID

FDA recall page link

FARE allergy alert website & email notification link

[mindblowingscience]

For roughly one in every hundred people, food containing even the smallest amounts of gluten can deliver a gutful of hurt. While a domino effect of immunological reactions can be traced back to their genetic roots, a number of contributing factors are also involved, making it difficult to map the precise chain of events that causes an allergy to gluten to emerge. Using transgenic mice, an international team led by scientists from McMaster University in Canada has identified a crucial role played by the very cells making up the gut's lining, describing a major stepping stone that could lead to new therapies.

Continue Reading.

[finnlongman]

Heads up to UK coeliacs: Lidl have changed the recipe of their fake pringles (previously the only ones that didn't contain wheat) and they now contain wheat! Not just a "may contain" but an actual ingredient! Be careful, check the ingredients, and tell your gluten-free/wheat-free friends.

[consolecadet]

Tips for freshly diagnosed celiac-havers

Someone I knew asked me for advice after getting diagnosed with celiac. I gave her some. I might as well share them with you as well!

I am not a doctor, and not your doctor, I'm just some guy with celiac disease. Ask an actual doctor for help with medical decisions. I'm in the northeastern United States, so you might have to go hunting for equivalent resources if you live elsewhere.

Are you done with testing?

If you had a tTG-IgA blood test with an elevated result, or a doctor just told you you have celiac, but you have not gotten a biopsy via endoscopy to confirm your diagnosis, WAIT! You may not want to stop eating gluten quite yet. You have to be eating gluten for the biopsy test to work.

It is not fun to stop eating gluten, start feeling better, and then have to start eating it again just to prove that you really have celiac disease.

Your choice in this area is personal. If you know you're going to have to wait years to get an endoscopy, it would probably be healthier and more pleasant to stop eating gluten now and then do a "gluten challenge" for a few weeks before your endoscopy.

If it's unlikely you will ever get an endoscopy (too expensive, inaccessible, phobia, etc), there's no point in waiting for something that may never come -- just stop eating gluten now.

But if you can schedule an endoscopy for a month or two from now, it's probably best to keep eating gluten until the endoscopy. Sorry.

Please eat food. Like, enough food.

The most important tip I got early in my diagnosis is that if you stop eating gluten and you start feeling crummy -- dizzy, cranky, tired, etc -- it's not because you're going through "gluten detox" or some shit. It's because you're hungry!

It's easy to accidentally start eating way less when you start eating gluten free. A celiac diagnosis can make you want to avoid eating because food feels scary and stressful. Cutting a major ingredient from your diet without knowing what to replace it with can also leave you undernourished.

You really need nourishment when you are recovering from celiac! Your body need energy from food to use on healing your intestines. If you've lived with celiac for a long time, you probably have vitamin deficiencies you're trying to bounce back from. The emotional difficulty of adjusting to a new diagnosis is also much easier to face if you're not starving.

All of this advice applies equally regardless of body size. Yes, even if you are very fat. If you're hungry, eat.

Where to find information about gluten-free food

The gold standard for basic celiac info is celiac nonprofits. There's a ton of info about celiac disease and the gluten free diet on their websites. I recommend:

Celiac Disease Foundation

Beyond Celiac

You know what's not a legitimate celiac nonprofit? Gluten Free Society. Do not listen to anything GFS or its founder Peter Osborne have to say. Osborne is not an actual doctor, nor is he doing actual nutrition science. He is a chiropractor (i.e. quack) so bad that his state's board of chiropractors threatened to revoke his license. Don't let anyone tell you celiac means you can't have corn!!! Truly, wtf @ this guy.

Google's AI summaries for searches like "Is XYZ food gluten free" are often inaccurate (because they pick up sites like GFS). I always click through to the source to be sure. "Is XYZ food celiac safe" sometimes gives more useful search results.

I also like this presentation "I Have Celiac" for a super in-depth guide to having and living with celiac. The OP made it to show to loved ones to explain their deal, but it's so thorough that I found it helpful for myself when I got my diagnosis.

I want to buy food that's safe for celiac...how do I do that?

You should be able to find gf food at any supermarket. The selection of baked goods and processed foods may be lacking, depending on where you live, but produce, raw unmarinated cuts of meat, and other whole foods like milk and eggs are generally safe even if not labeled gf.

A lot of supermarkets have an indicator on the price labels to help you -- for example, at Stop and Shop, the labels on the shelf have an orange circle that says "gf" in it under foods that are gluten free. It's best to check the packaging too, since Stop and Shop sometimes gets it wrong!

Something that says "gluten free" or "certified gluten free" on it is safe for celiac*. Something that doesn't say "gluten free" on the packaging may also be safe, so long as it also doesn't contain wheat, barley, or rye, or have a wheat allergy warning under the ingredient list. Here are some tips for what to look for on ingredient labels.

Labels can get real complicated real fast, so just use your best judgment. It's okay if you don't get it right 100% of the time. The goal when living with celiac is to reduce gluten exposure as much as possible, not to hermetically seal yourself in a deep well where a single molecule of gluten can never possibly reach your tongue. You, and only you, get to decide how much exposure risk you're comfortable with.

My favorite grocery store post-diagnosis is Wegmans. My nearest one is a bit of a hike, so I don't go that often, but it's such a treat when I do. Wegmans has a huge gluten free aisle with gf staples and fun snacks, plus lots of food items that can be harder to find gf, like fresh pasta and baked goods.

I also like the online health food store iHerb for finding new gf snacks and ingredients. You can filter the whole store by dietary needs, so you can also find gf skincare/makeup items and supplements if you want. I have a discount link for 20% off: https://secure.iherb.com/rewards/rewards-program?rcode=DRO2876

The best way to find restaurants that can accommodate celiac is Find Me Gluten Free. It's essentially a gluten-free Yelp. People use the site/app to review of restaurants for 1) what cross-contact precautions the restaurant takes and 2) crucially, if the food was good!

Gf food can be expensive, ngl. The National Celiac Association has advice for how to save money on gf food, including a database of food pantries that set aside gf food for people who need it.

GF ~influencers~

If you want to follow some people who Get It, I like:

Phil Hates Gluten (on IG, TT, and YT) has EoE (another gluten-related autoimmune condition). He reviews gf food and restaurants and makes silly videos about the gf experience.

Robyn's Gluten-free Living on YouTube has gf baking videos and advice about traveling, eating at restaurants, saving money on gf food, and more.

Here on Tumblr, @gluttonysansgluten and @certifiedceliac (and I would love more recommendations for celiac related Tumblr accounts!)

Having celiac is really hard. But it does get easier.

I felt overwhelmed and honestly kind of doomed when I got my celiac diagnosis. For the first few months I felt like I couldn't trust any food and I was going to be totally excluded at all social events forever. It sucked. But then I got a lot of practice figuring out which foods were safe for me, advocating for myself at restaurants and when my friends were planning get-togethers involving food, and now things are really not that bad. And I feel way, way less sick.

If you feel overwhelmed or don't know how to interpret the 1 million sources online telling you what's gluten free, I really recommend seeing a dietician. Your best bet is a weight-neutral or HAES dietician who mentions celiac somewhere on their website or online profile. You can generally count on those folks to give you practical information about how to live with celiac, as well as emotional support as you adjust to what is probably a pretty big and stressful change in your life and how you view yourself!

You got this!

*Please do not talk about Cheerios on my post. Make your own.

[lifblogs]

The google ai is so bad for trying to search if foods are safe for me to eat, or if they’ll try to kill me. And underneath the ai answer bullshit there are hardly any reliable links.

If someone has even said the words gluten free in something then google will tell you the product is gluten free even if it’s not.

This is DANGEROUS!

[certifiedceliac]

Today is National Banana Day! Did you know bananas and celiac disease have a very interesting history? Before celiac was well understood and gluten was identified as the problem, a banana-based diet was used to treat the disease in children (and at the time, presumed to have "cured" them).

[lee-romee]

chocolate peanut butter banana bread

i've been kicking this recipe around in my head for months at this point --- i used peanut butter instead of any type of dairy/oil, & it turned out so moist & flavourful

275g bananas ((about 2 large))

132g peanut butter ((½c))

150g white sugar ((¾c))

2 large eggs

1tb vanilla extract

1c oats

40g cocoa powder ((½c))

1tsp baking soda

¼tsp salt

½tsp cinnamon

100g chocolate

blitz the oats to flour & set aside

preheat over to 370F

mash bananas in an empty bowl

add in peanut butter, sugar, eggs, & vanilla, & combine fully

whisk together the drys, then add them + the chocolate & fold until just combine

grease loaf pans ((i used 3 mini ones)), & pour batter in ((1½c in each mini pan))

bake for ~40min, or until a toothpick comes out with a few crumbs / just some moisture

cool in the pans until they are cool enough to be handled with bare hands, then remove using a toothpick to until the edges, then cool fully on a baking rack

[chronic-gastro-illness-culture]

hows the tummy hurty fandom doing

[arctic-hands]

I love food. Would love to be able to actually tolerate eating it one day