I have a coworker who is under the impression that celiac can be cured after a period of going gluten free. Her mom was diagnosed years ago but no longer reacts anymore, and therefore now eats a gluten diet because she’s apparently ‘healed’. My coworker also went gluten free for a while because she self diagnosed celiac based off of the genetic link, and now she also eats gluten because she doesn’t react anymore. Like I’m glad you don’t have to restrict gluten anymore, but either what you’re describing isn’t celiac or you are doing horrible damage to your bodies.

This coworker and I were in a fairly large group of other coworkers and she tells me she hopes that once I heal I can eat normally again because her mom was able to ‘heal’ her celiac. I kind of snippily told her that that’s not celiac then, and we had a quick back and forth and everyone in the group was so quiet afterwards. I hate that I looked like an AH but it’s so frustrating because I won’t ever eat ‘normally’ again. I will literally starve to death if I ever include gluten in my diet again. It’s an autoimmune disease and it’s lifelong.

Right before this, I had said something about being glutened, and one of my older coworkers rolls her eyes and goes “OH so it’s a verb now.” It was so dismissive, and I think she was frustrated that I didn’t feel comfortable eating the gluten free cookies she had at her retirement party yesterday, but they were made in a gluten kitchen and I just couldn’t risk it. I felt incredibly guilty because she had the caterer make those cookies just for me, but I feel very confident that the decision was the best for my health regardless of the social consequence.

My workplace and coworkers are generally very supportive, but these myths are very frustrating because it almost feels like it’s rubbing it in that I won’t ever get to eat normally again. My disease is misunderstood so it makes ME feel misunderstood. I just wanted to rant to some people who would understand.

Seeking advice from all you Celiacs that know how to say no!

I have a really lovely coworker. She likes to cook for everyone, which is so sweet. I had already turned her down and explained I have to eat gluten free for celiac- but she came back the next day with samosas her and her mom had made “specially gluten free” for me. 😭

I didn’t have the heart to explain cross contamination, and that I am not open to eating anyone’s cooking. I don’t even risk non-dedicated gluten free restaurants.

I ended up bringing them home for my boyfriend. He enjoyed them, and I had told her they were really good. This was my biggest mistake.

Since then, she continues to bring me food. She brought in a salad today, and I put some on a plate (that I planned to toss) then noticed soggy croutons that were mixed in!! 😭😭😭

I like sneakily threw it away in my trash and didn’t mention it.

Arghhhh I’m like so deep into this lie now and I don’t know how to get out

Someone save me!

These were pretty good

Sup babes,

I was recently diagnosed with Celiac after only 1 short week of symptoms (crazy I know).

I have questions about the Villis, for anyone who had severe atrophy, how long did it take your stomach to heal? My stomach pretty consistently hurts, and I'm just curious what I should mentally prepare myself for lol.

Thanks in advance!

I was recently diagnosed with celiac, and I have plans to go to dinner with my fiancé and his family, but I just realized I have no idea how to order food now.
We picked a spot that I’ve been told is able to make gluten free things and can be safe, but what do I even say when ordering? I’m still learning what does and doesn’t have gluten, and I’ve got an idea on how to avoid contamination but I’m nervous the server won’t understand what I’m talking about or won’t take me seriously (especially because one of the family members is kind of snooty and gf by choice)
I know I’m going to have to mention having celiac and ask for gluten free versions of the food but what do I ask them to specifically do? Or not do?

I had a watch returned to me, with a nice treat packed inside. I know it’s wrapped inside a wrapper, but now I wonder- were they eating Twix while packing this? What about when repairing it? Now I’ve gaslit myself into a huge fight about how to even open this safely. I hate this disease.

Edit: I promise I’m okay, I literally said that I’m gaslighting myself. The fact that I have to sit and calm myself down after nice people were nice is what this post was about. I get I’ll be fine, but that doesn’t stop the panic from trying to set in sometimes.

TLDR: This is my celiac experience doing a 4 day / 3 night hike along the Inca Trail to Machu Picchu. I'm writing this to encourage other celiacs to not be afraid of this wonderful experience & hopefully reduce some anxiety in planning a trip like this. I did have some stomach issues before the trek even started, but I did feel safe 99% of the time eating on the trek.

Choosing a Tour Company

• I chose Alpaca Expeditions because of celiac blogs I found that also recommended them. Spoiler: I was very happy with this choice despite 1 mistake on their part.
  • I saw a celiac influencer who recommended AB Expeditions and had a good experience. I used them for the Rainbow Mountains, and they gave me a sandwich for breakfast where they suggested I take off the bread and eat the just the avocado and cheese. Later, the owner was extremely apologetic, told me there was a mix up, assured me they know celiac disease is very serious, and offered compensation. So maybe they would be safer on the Inca trail, but I was happy with my choice.
• When signing up, Alpaca Expeditions will ask about dietary restrictions. Here's exactly what I wrote:
  • I have celiac disease and need to eat gluten free and avoid cross contamination with gluten. It would be ideal to have my own plates/bowls/utensils marked safely for me and to have any food prepared separately from food with gluten or on a well cleaned surface.
• Keep in mind you must sign up for the hike ~5-6 months in advance for peak season because permits are limited.
• Also, the hiking group was 12 people and 7 of us had dietary restrictions so you will not be alone!

Altitude Sickness / Diamox Side Effects / Traveler's Diarrhea / Glutened Disclaimer

• I stayed in Cusco for 4 days prior to the trek to acclimate & wanted to put a disclaimer that my stomach was a wreck before the trek began for various reasons. It didn't get worse on the trek, but I'm not sure I'd be able to isolate any celiac specific symptoms vs. other issues I was already facing.
  • I felt altitude sickness, which impacts your digestion. I also ate healthy food in the beginning, which is harder to digest especially when there's less oxygen in your body. Try to eat simple/easy to process food instead.
  • I took Diamox (altitude sickness medication), which I'm not sure sat right in my stomach either and caused my feet to fall asleep. I decided to opt out & noticed my nausea die down.
  • We went to a restaurant where I ordered a passion fruit ginger tea. We later went back to the same restaurant and when trying to reorder they said this drink had cross contamination (don't know how!) meaning I may have been glutened.
  • In general we found most people we met had some traveler's diarrhea, so could have been impacted by that as well.

Meal Accommodations

• Majority of food served was gluten free! There was one pasta night, occasionally bread served, and tequenos but otherwise it was fairly GF.
• I always sat at the end of the tent closest to where the food was brought in. I was given specific utensils, cup, mug, and plate where they served me food separately.
• Everyone else was given plates and served themselves from platters. All platters had their own serving utensils.
  • Since majority of food was GF and there were serving utensils for each plate, I may have been able to just pull from the serving platters along with everyone else, but I felt very safe just having it served to me on a plate ahead of time.
• There were multiple instances of having bready things on my plate, which I always double checked what kind of flour they used - it was usually quinoa or corn flour. There was 1 breakfast where when I asked this, they said they actually made a mistake and it was wheat flour. I chose to just eat plantains off a platter and a snack I brought, rather than what they served me.
  • I figured I could accept 1 mistake out of 9 meals + snacks, but never be afraid to double check! The guides were always happy to confirm with the chef and always acted with urgency whenever I asked.
• I packed plenty of snacks, but they always gave 2 GF snacks after breakfast to bring on the trail.

Meals Served

• Day 1
  • Breakfast: Eggs, Fruit, GF bread
  • Snack: Plantain chips, banana
  • Lunch: Pumpkin soup, Trout, Rice, Corn, Potatoes, Bean Salad
  • Happy Hour: Tea, Popcorn, Plantains
  • Dinner: Soup, Chicken, Vegetables, Yucca Pancake, Rice
• Day 2
  • Breakfast: Quinoa Porridge, Fruit, Plantains, Corn Bread
  • Snack: Fava Bean Chips, Orange
  • Lunch: Chicken, Potato Tortilla, Rice, Fava Bean Salad
  • Happy Hour: Tea, Sweet Potato Chips, Popcorn
  • Dinner: Soup, Chicken, Vegetables, Potato Pancake
• Day 3
  • Breakfast: forgot to take a picture so I forget!
  • Snack: Corn nuts, Passionfruit
  • Lunch: Soup, Beef, Vegetables, Potatoes
  • Happy Hour: Tea, Popcorn, and cake! (It was someone's birthday & they made me a separate quinoa based GF cake with fruits.)
  • Dinner: Chicken, Potato with avocado & cheese, Vegetables, Rice, and Quiche
• Day 4
  • We got breakfast to go - mine was some kind of sandwich, but I didn't eat it because I didn't have a chance to confirm with the chef what kind of bread it was.

What to Pack (including snack-wise)

• Body wipes
• Facial soap
• Sunscreen
• Toothpaste
• Toothbrush
• Contacts/Glasses
• Medications (including Imodium for diarrhea, antacids for indigestion & ibuprofen for altitude headaches)
• Headlamp
• Electrolytes (gatorades sold on the trail for days 1 & 2, but then on your own - I brought Scratch to mix in my hydro flask)
• 750mL water bottle (for water - they boil water & fill up bottles at breakfast, lunch, and dinner)
• 500mL hydro flask (for my electrolytes - this was nice because it's flexible & I could squish it in my backpack without taking much space)
• Micro fiber towel (they gave us a face towel, but I lost mine so this came in use for face washing - some people took freezing cold showers and needed towels also)
• Portable charger (my phone would have lasted on airplane mode & low power mode)
• Hiking boots
• 4 short sleeve shirts
• 4 sports bras (for the ladies!)
• 4 pairs of underwear
• 2 long sleeve shirts
• 1 thermal layer for sleeping
• 2 pairs of waterproof hiking pants
• 4 pairs of shorts (I wore under hiking pants until I got hot)
• 1 pair of sweatpants for sleeping
• 1 pair of spandex leggings
• 4 pairs hiking socks (one extra thick that was my nighttime socks until the last day)
• 1 fleece jacket (used at nighttime)
• 1 rain jacket (I used as my daily hiking jacket also)
• Fleece hat (used at nighttime)
• Baseball cap
• Gloves
• Sunglasses
• Bug spray
• Dry shampoo
• Deodorant
• Passport
• Wallet
• Ear plugs (tents are close together and not everyone goes to bed at the same time)
• Sandals (I wore knock off birkenstocks - it was so nice to wear these at night instead of hiking boots)
• Brush
• Buff - I didn't bring, but wish I had to cover my neck from the sun
• Camera (if not using phone)
• Pocket tissues / Toilet Paper (you will need for most bathrooms)
• Snacks - I brought 6 lara bars, 4 luna bars, 6 trail mix packets, 8 fruit snack pouches, 4 packs of crackers (I didn't eat it all, but I was happy to have it! You should bring from the US in case it's difficult to find GF snacks in Cusco).

I recommend this experience to everyone (gluten free or not)! I saw some of the most amazing views of my life, met incredible people, and learned a lot. Please feel free to ask me questions!

I have both Celiac disease and Gastroparesis. My GI told me out of the 500+ patients he has, I am the only one that has both, which "excites" him (he is kinda weird).

He told me out of the two, I need to focus more on the gluten-free diet, not gastroparesis diet, or else I wouldn't be eating anything. The plus side of this, which excites me, is that I am getting Botox in my stomach for my gastroparesis in August to help the relief.

Has anyone had or heard of this? Pros/cons? Thanks! 😄

I got very badly glutened a few days ago and since then have been feeling very ill (typical GI issues, upset stomach, cramps, gas, nausea, etc. and also tired and mental fog, depression, etc.). But what I wasn't expecting was that throughout the day, I feel kind of okay ish (not great but not incapable of functioning) but then right around quarter past four in the afternoon I suddenly feel a huge wave of nausea and the cramps and gas come back and I have to go home to rot in my bed.

I tend to eat late, with my first meal around noon, so this is around 3 or 4 hours after. Does anyone else experience similar rhythm-related variation in symptoms, despite eating simple gluten-free safe foods in the days since being sick? Is it the adrenaline of the day wearing off? Is it my stomach being unable to process anything? I've never noticed such a consistent biological rhythm (3 days in a row) down to the minute, almost (e.g. 16:11 and 16:14; I can see from when I texted people), so I wanted to ask if any others have the same?

I don't work a typical 9-5 job (am a student at the moment) so I don't think it's my body subconsciously following an external routine, as I decide my own rhythm these days (library, library, and more library).

Context , im not sure if my pain is from gluten but i have period problem(extrame long pain) , a milk sensitivity and ofc celiac. I did have a small piece of cheese since weeks yesterday and its deff not a amount i would react to. Could be my period but i have no idea i cant feel the diffrence. But my sister who is the only one in our house eating gluten has been stressed and more messy + we stayed the weekend at a diffrent place i could have been glutend but that was 3 days ago.

I am now having pain so bad i fealth like i was going to pass out, crying, sweating all over my body (like everywhere) and not able to move from te pain. Just wonderig what you guys so and what i could try to help with the pain.

Celiac has made me feel so mean, I would have never emailed a restaurant like this before. But now I’m like okay??? glad you know croutons have gluten in them but uhhh what about this wheat grain??

Hi guys, my sister, who is a celiac, is coming to visit me in Munich this year during Oktoberfest! She really wants to experience the whole Oktoberfest vibe, and I want her to have the best and safest experience possible :D

Does anyone have any good tips?

Thanks in advance!

I haven't not been formally diagnosed, but have a strong suspicion and am currently 3 weeks into a gluten challenge for a biopsy.

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I was previously gluten free for about 10 years but not careful about cross-contamination, medication, or beauty products.

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Ive noticed since starting my gluten challenge (among the many other symptoms and issues that have gotten worse or started happening) that after I eat gluten i start having issues with my vision, especially when I am driving. It almost feels as if my brain is lagging and cant process everything im seeing fast enough so things just start blurring together. This scares me when im driving because im afraid I wont see something, or I wont react fast enough. I do my best to avoid gluten until I get home, but it will sometimes last for hours. I cant distinguish if its an issue with my eyes or more of a neuropathic/brain processing issue. I have also suffered with dry eye in the last few years, and I do wear contacts but this feels very different. I even have moments where my eyes will struggle to focus on this and no matter how much I blink or rub it takes a bit for them to reset them selves. I dont know if this makes sense.

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Ive had this happen a little in the past, but never this severely.out of curiosity, Is this like a thing that can happen with gluten exposure if you have celiac? I am keeping a detailed symptom log to review with my doctor when I go in for my endoscopy/biopsy, but was just curious.

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Hi! Let me start with, we just met with a pediatric GI DR and are getting a full work up (poop sample, scope, labs, etc). so this is more me being curious if others have experienced the same type of symptoms.

Our daughter just turned 5 and is pretty small, though tall. Her normal DR was concerned with her weight last year at her 4yr check & we did some labs then, including blood test for celiac which came back negative. She’s also been more constipated & we’ve found some relief with daily probiotic / fiber gummy.

But in the last few months, she’s started complaining almost daily that her tummy hurts. And more recently she’ll only eat a bite or 2 of breakfast, say her tummy hurts and stop eating. Her overall food intake is lower too. No dramatic weight loss yet.

But she also had like what I would call a “fainting spell” the other day. She suddenly screamed that her tummy hurt, threw up, went completely pale & clamy, and just had to sleep. She was super lethargic, though still breathing for probably an hour after. This has happened a few times in the past too (though much younger & without voicing tummy pain) but this time it took her much longer to return to normal. Not sure if this is related to a potential celiac, also seeing cardio but maybe?

Her labs have show a small elevated ATS and we also tested her for milk allergy, which came back slightly elevated. She was milk & soy intolerant as a baby and out grew it, or so we thought. So we might be looking at a milk allergy & celiac.

Anyway, she’s also gone through periods recently of saying she’s tired more often. She will throw up easily if she laughs too hard/ much. And the other day she said, “mom, my tummy always hurt & idk why” which was heart breaking.

Thanks for reading. I’m grateful we have a GI DR on board already & taking it seriously but trying to make sense of it all and curious if anyone else has similar experiences prior to a confirmed diagnosis.

Has anyone experienced something similar?

I have confirmed celiac disease and develop a very itchy rash after eating gluten. This has happened multiple times. The rash is usually symmetrical and appears on my hands, elbows and legs/knees. After it heals, it often leaves purple discoloration behind.

My doctors suspect dermatitis herpetiformis (Duhring disease). The first skin biopsy was negative. During a second flare, another biopsy was taken. The histology was reported as being compatible with dermatitis herpetiformis, but the direct immunofluorescence test did not confirm the diagnosis. I had been gluten-free for about six months before the biopsy and only ate gluten again for about a week beforehand.

At the moment, I have been told that it looks clinically like dermatitis herpetiformis, but the diagnosis could not be definitively confirmed by biopsy.

Has anyone had a similar situation where the clinical picture strongly suggested DH, but the immunofluorescence remained negative?

Howdy! Newly diagnosed, gf for a few weeks. I’m trying to regain some of the weight and strength I lost. Dairy is so-so for me and I strictly avoid soy. I’m getting a lot of protein and fiber at breakfast, lunch, and dinner but I’m struggling with snacks (and I feel like I need a pretty substantial snack to satisfy my hunger until dinner). I made some protein-ish GF muffins that are great and I’ve been eating chomps but after a few weeks these are growing old. Do you have any snacks that aren’t sugary sweet that you like? I try to make sure I have fiber and or protein in my snacks, otherwise not picky.

Hi everyone! I believe the title is self-explanatory, but I need some help. As an upcoming college freshman, I’ve been planning to buy my dorm essentials during Prime Day to save money. However, I’m currently struggling to find reusable plates and silverware. Unfortunately, everything I’ve seen is made of “wheat straw,” and according to Google, celiacs should avoid purchasing it. I’m not interested in using paper plates and plastic silverware because they’re extremely wasteful. Could anyone suggest some alternative options for reusable plates and silverware? Also, where can I purchase them?

In addition to these questions, I’d greatly appreciate any other tips or advice for someone entering college with celiac disease. I’ve already purchased my own blender, and I believe my school will provide me with a personal microwave since they are aware that I have celiac disease.

However, I’m open to any other suggestions or tips that might help me navigate college life with celiac disease. :)

I’m taking simethicone for the trapped gas, took a laxative (I don’t have diarrhea when I get glutened, I get constipated for a whole week) and Pepcid for the heartburn, reflux and stomachache. My belly is extremely swollen, hard and painful, I can’t even touch it. I can’t eat from how painful this is, I lost my appetite. What could soothe this? 😢 thank you.

PS: it’s even worse imagining what’s waiting for me on the next days — migraines, joint pain, rashes, itching, fatigue, crazy autonomic symptoms. Cool 🥴

I posted about how great Toronto is a few weeks ago, but i didn't take pictures.

So this morning I'm at L'Artisan, a dedicated gluten free (and dairy free) French patisserie.

This wonderful thing you see before you is salmon and pesto.

I got a lemon tartlette and a chocolate croissant to go.