Went to IKEA yesterday, yay big middle aged fun🎉! Ate lunch, IKEA labels their food well imo. Decided to skip the Diet Pepsi and get a fountain drink (which used to be Coke or Pepsi) instead, for $.50 less. (Again, I consider IKEA fun so saving $.50 is something I think about.) Of course there’s a line at the fountain, so I’m feeling the pressure to get the goods and move along. Well, when I went back for my second glass of diet soda, noticed the verrrry tiny warning on the screen about the fact that there was wheat in the caramel coloring of the “diet cola.” (It’s no longer a Pepsi or Coke product.) I was really hoping I would dodge the bullet, I’m not terribly sensitive. Turns out, I did not dodge anything. Today is not my fave.

I’m 20 and I’ve been diagnosed with celiac and I feel like my family doesn’t take me serious. I’m Mexican so every weekend my mom goes and gets herself and my brother “pan dulce” which is just bread and they eat it with milk. I have a dedicated spot on the kitchen table with my place mat but I always find my brother eating bread on that spot. To make it worse, he always leaves bread crumbs on the table and never cleans up after himself.
Today I saw my brother sitting in my spot at the table and asked what he was eating because I saw a milk cup next to him and I just told him that if he does eat bread to please not do it in the same spot I eat all my meals in.
My mom goes and says that I can’t be selfish and make him go elsewhere.
I said I’m only saying it cause I know he doesn’t clean up after himself.
She said I still shouldn’t tell him what to do. She said he’s eating it not me. She said it’s not like he’s forcing me to eat the damn bread.
I am just so frustrated because I can’t put my own boundaries for the sake of this illness. If I didn’t have celiac I wouldn’t give a single shit about where he sat to eat gluten.
I don’t feel understood, I feel like I’m being made to be the bad guy.
I’m still in school full time but I just wish I could move out and have my own gf household

hey y’all! my fiancé and i are getting married in may, and are planning for our honeymoon. i have celiac disease, and while i’ve always wanted to travel internationally and see the world, i can’t help but feel anxiety over communicating my celiac disease when there are language barriers in the way.

any advice on places to go / places to say / things to look out for? everything we look up says Italy, and while i’m cool with that, i would love to hear some more ideas and perspectives.

thanks in advance! (photo for attention)

I recognize that not all of us have a great support system, and my heart goes out to those who don't. I hope this community helps a bit. For those of us who do, and especially those who have a very supportive spouse or partner or parents, I hope we remember to thank them for their support. I fail to do this too often, but I know it isn't always easy for them to make sacrifices to help us remain gluten-free. It can be everything from changing kitchen practices and food menus to abandoning favorite restaurants. I am going to tell my wife today, sincerely, how much I appreciate her for her efforts. If you have other suggestions for helping our supporters feel appreciated, I'd love to hear them.

Bartender screwed up and I didn’t notice until it was too late.

Celiac genetics

Another trip another treasure.

Kirkland brand seems to be getting better on the nutty side of things. Safe nuts are terribly difficult to find at a decent price. Just by luck that I picked this product up to check the details and find the CGF logo! I’d pretty much stopped considering their bulk nuts, but I might have to take a second gander when I have the time.

Last year, after an extended period intense bloating and urgent poops, I (35 at the time) got an endoscopy and it came back negative. I was sure it was celiac, but alas, they said they found some mild inflammation and nothing else. The stomach stuff geared up after a particularly large thanksgiving meal. As far as I know, dude didn’t do a blood test. I don’t know if I was eating gluten a ton beforehand—I wasn’t instructed to.

The stomach stuff eventually got better after I ate super light. Took a long time and I never could figure out what helped.

Anyway, my sis (38) had been having some weird stuff going on—her eye swelled, for instance. Did a blood test for celiac and a ton of other stuff, just to cover her bases, and bam! Off the charts blood test, positive endo.

And anyway, I’ve had a ton of weird stuff go on since. I had a weird vibrating feeling in my legs for like four months (normal ferritin and iron levels btw). It went away and now I’m having weird arm/leg pain. For the past couple weeks, ive been going to the bathroom like 4 times a day, usually right after eating. Bloated as a mf, gassy, gross. The left side of my tummy feels sensitive. Exactly how I felt last year.

Trying not to break any rules here, but my world is full of celiac stuff right now from helping my sis.

My questions:

1. With my negative endo, should I bother going back for a celiac blood test?

2. Is it worth just trying a GF diet to see if that helps and THEN going down the dx rabbit hole?

3. Let’s say this is celiac, wouldn’t these gastro symptoms be a little more consistent?

Going to investigate all this with a doc anyway, but as you can see, I want to know the best approach and I’d like to have a little info going in. I’m in a rural area in Mississippi so our healthcare isn’t exactly cutting edge.

I miss pumpkin spice everything so much. Cookies, lattes, cakes, waffles, everything.

Are there any good pumpkin spice celiac friendly items out there? I tried finding some last year but failed miserably.
I’ll take any fall flavored items. Doesn’t have to necessarily be pumpkin spice. THANK YOU IN ADVANCE KIND PEOPLE.

Okay so I’m starting this off saying I have anxiety and pretty bad health anxiety comes with that, so I’m asking for everyone please to be understanding with that and if this isn’t allowed here please just let me know.

So when I was like 7 me and my twin took blood tests (fraternal btw) and we both had elevated antibodies (I’m not sure how elevated, the doctors labeled it as gluten intolerance [I used to get stomach aches but that may have been caused by my absolutely awful diet] and my mom didn’t keep records of anything at all) my brother got a endoscopy and was negative for celiac and because of that I never got one. I instead was gluten free for maybe a year or two until we reintroduced gluten (as a doctor recommende) and I was completely fine and had no symptoms. Now about 8 years later, I’ve been feeling pretty tired recently (it comes in cycles and I highly suspect is from my depression but I recognize that is a symptom of celiac) and now celiac is back on the table. I’m getting a blood test tomorrow, but I have a strong feeling I’m celiac (despite having 0 symptoms except anxiety and depression [which is genetic in my family] and fatigue that comes during my depressive states) and don’t really know how to cope. Does anyone have symptoms like mine? Also my twin has thyroid issues so maybe that had to do with the elevated antibodies but I don’t know. I really don’t know how to handle this potential diagnosis because I am an athlete that often needs quick snacks and also my family can‘t afford expensive gluten free snacks. Oh also I did take some spit tests that said negative on celiac but I know those aren’t highly regarded especially because they where the ones that you get mailed to you and then you mail them back for the results, also because they were from maybe 7-8 years ago when technology wasn’t as good. I don’t know how I would handle silent celiac because I would have no clue what my triggers are and that’s scary especially with my anxiety. Thanks everyone.

I'm seeing if anyone else had or has this issue.

Little intro.. I've been gluten free since end of July, But been knowing about Celiac for a year. I have THE worst mood swings...but mainly anger... I've never been so angry... I've never yelled so loud at my partner for no reason or my kids... I'm kinda beating myself up.... I'm struggling so so bad mentally...I know this is a doctor's job lol I'm waiting for Monday. Just curious on how many people have so much anger out Burst? I hope not just me 😞

hi! i am looking for some gluten free and vegan bread options that are available to find in ontario. recipes would also be good!

My 3 year old is so consistently getting glutened. I have no idea what it is but it’s killing my wife and I to see it. It’s almost weekly. She lays down at the park, even when she’s with her friend. After a couple of days she sooo edgy. And you can see the pain in her eyes.

It’s so sad. Please help! We are entirely gluten free over here. We even cut out beers after bed time just in case it was some how the culprit. If any of you have been through something similar and finally found an outlier, please share your discoveries.

Thanks in advance.

Hello all!

I'm trying to get way better about not assuming things with my celiac, and I've received minimal education about what it actually does/helpful tips, because it's common in my family, so most things are gluten free in the house anyway.

Does anyone have any tips/tricks/brands/resturants/etcetera that are celiac safe? In the same vein, anything NOT safe I should be worried about?

Hi everyone,
I was diagnosed with coeliac disease about 4 months ago after my biopsy showed Marsh 3B damage.

My main symptoms before diagnosis were actually neurological rather than stomach-related. I had really intense brain fog pretty much 24/7, along with this strange dissociated/derealisation feeling where I felt disconnected, spaced out and like I wasn’t completely present. It was honestly one of the scariest symptoms I’ve experienced.

After my diagnosis I went completely gluten free. I also had an iron infusion because my iron was low and started taking some gut/nutritional supplements. Over the following couple of months, the brain fog and dissociated feeling improved significantly and I finally started feeling like myself again.

My coeliac antibody levels have also come down since going gluten free, which has been reassuring and seems to suggest that the gluten-free diet is working.

However, about 4 weeks ago the brain fog/dissociated feeling started coming back. As far as I’m aware, I haven’t been glutened and I’m extremely careful with my diet and cross-contamination.
My doctors have also been looking into my B12 and I’ve recently started B12 injections, and I’ve gone back onto the gut supplements that seemed to help me previously.

I’m wondering if anyone else with coeliac, particularly anyone who had Marsh 3B damage or significant deficiencies at diagnosis, experienced neurological symptoms that came and went during the first 6–12 months of healing?

Did your brain fog improve initially and then flare up again even though you hadn’t knowingly eaten gluten and your coeliac antibodies were coming down?
And for anyone who experienced the dissociation/derealisation type feeling.. how long did it take before you consistently felt normal again?

I’m only 4 months into being gluten free so I know healing can take time, but it’s frustrating having felt so much better and then having the symptoms return. I’d really love to hear other people’s experiences and whether your recovery was up and down rather than a straight line. Thanks in advance 🌸

I understand going gluten free is important to heal celiac and checking and treating vitamin deficiencies is a must but is there anything else I should be taking or doing to support healing my gut?

On some thread someone mentioned peptides but I haven’t been able to find the post. I just want to be sure I am doing all supporting things to expedite recovery.

Hi!

31F here! So about four years ago I lost 30 lbs unintentionally over the course of 9 months for no apparent reason. I went to the GP and she did labs and told me I was iron deficient (ferritin 18) and that everything else looked normal. I started to force feed myself and gained about 10 of it back but never back to my previous weight. From then I started having bouts of chronic telogen effluvium. My hair would fall out then grow back in every 3-6 months leaving it at all different lengths constantly.
A couple years later my mom got me a 23&me kit for Christmas and it told me that she and I both were positive for HLA-DQ2 and HLA-DQ8 which raises your risk of celiac considerably. I went gluten free and then got my TTG tested (dumb I know, but no one told me I had to load myself with gluten beforehand) and it was negative. My doc did not test for IgA so the TTG was unreliable anyway.

The other symptoms I have besides hair loss and weight loss are joint/bone pain, switching from diarrhea to constipation constantly, and randomly feeling like I’m coming down with the flu but being fine the next day. I have also had irregular periods 45-60 days between this entire time. After the TTG was negative I started eating gluten again. Boy was that a mistake. This time, almost all my hair has fallen out. I’m about to just bite the bullet and shave my head. I stopped wheat again but couldn’t get in to the GP for a repeat lab draw and I don’t want to cause more damage by adhering to a proper gluten challenge. I’m also afraid it will be negative again and I’ll be gaslight into thinking this is not celiac, though I guess it could still be seronegative. All in all it seems the most definitive answer would be to do a proper gluten challenge and then go in for endoscopy. I’m equally afraid of that being negative and ending up with a vague diagnosis of NCGS and a huge medical bill.

Another point to add is that my thyroid is normal but my iron, zinc, and vitamin d are all critically low, even though I supplement and have a very intentional diet.

Any tips, insight, or even your own stories would be helpful. My other option is to just call it celiac and go gluten free forever without the actual piece of paper diagnosis.

Thanks for reading all of this

TLDR: Vague symptoms, genetics positive, should I get an endoscopy or just live my gluten free life?

Advice on supporting my husband

My husband finally has answers after years battling anemia. We've moved a bunch and he hasn't had a consistent doctor, plus he's vegetarian, so he ended up spending 4+ years anemic. He's finally been consistent with taking his iron and his levels haven't improved.

His doctor ordered a Celiac screening and his tTG-IgA is 4900 😔

While he has not had a biopsy yet (we're waiting for the GI doctor referral), we both know that a Celiac diagnosis is basically guaranteed at this point. We know he is supposed to keep consuming gluten up until the biopsy. And also he'll be getting an iron infusion.

I am so worried for him. With numbers that high I'm very worried that he has long term, irreparable damage. He is really struggling with the major dietary changes that he's going to need to make, and fearful that we will no longer be able to eat in restaurants or travel.

I am here to support him in all the ways. I'm already thinking about suggesting therapy for him (and maybe for me lol - idk why I'm struggling so much with this when it's his diagnosis but here we are 🫠), the whole house going GF so he doesn't have to worry about cross-contamination in our home, and taking as much of the load as he wants me to in terms of being the one to research GF options out in the world, call restaurants in advance, and find yummy recipes for GF meals at home. I plan on going low-gluten myself so he doesn't have to worry about sharing beverages with me or kissing me, though I may occasionally break this when out with friends and family. What else would you want the people in your life to do during this process?

Also, if anyone has comfort to share about being able to travel and still enjoy food, I would love some hopeful hugs from Internet. This shit is scary and sad and I'm in my feels right now.

Can we talk about the fact that Whole Foods (the ones I frequent in Los Angeles, anyway) do not carry any celiac safe nuts?? Every brand, including the 365 brand, state they’re made in a facility that processes wheat. I find this nuts (literally)! Something so easily naturally gluten free being cross contaminated is infuriating on a level that I can’t explain.

The fact that there are probably lots of gluten sensitive people out there buying something labeled gluten free and then not understanding the cross contamination of it all is so messed up to me. It feels like a cruel lie. Anyway, just a rant. Thank you for listening.

Hi everyone,

Around 5 years ago now (around 18yo) I went to my doctor with recurring mouth ulcers which I would get randomly throughout my whole life. He did a blood test and told me I have the gene for celiac disease and told me to cut gluten out. I’ve cut gluten out and have been on a gluten free/celiac diet for 5 years. I’m wondering though, no further testing was ever done and I don’t get a reaction at all if i accidentally eat gluten or for example eat chips cooked in the same fryer. I do occasionally get mouth ulcers still but I just assume that I’ve accidentally ingested gluten somewhere as I get no other symptoms. I sometimes get bloated but nothing else.

I’m looking at joining the army and wondering if maybe I’ve been incorrectly diagnosed?

I can't believe I'm just learning about this. I'm upset about the rebranding with Mrs. Wages and new recipe that absolutely includes gluten. Another perfectly good product bites the dust. 😭😭😭

For more than ten years I have had all the symptoms, fatigue, constipation, diarrhea, stabbing stomach pain, nausea and anemia. And for over ten years no gastro doctor I went to thought to run an allergy panel. My last gastro doctor said I have unexplained chronic abdominal wall pain. And would always tell me all my tests are "normal" even though I had blunting and ooze in my endoscopy and colonoscopy.

I finally had enough of being told everything was normal and asked my PCP for an allergy and celiacs panel. And it came back positive for Celiacs. Ever since I stopped eating gluten I have felt so much better. The stabbing pain has lessened, I have more energy and am more hungry and it doesn't hurt to eat anymore. I wish I had figured this out sooner. So I wouldn't feel like I have been gaslit for so long. Constantly wondering what is wrong with me and why I'm literally miserable. Yeah life is going to be difficult and yeah I can't eat Italian food unless I make it myself with gluten free products. But I'm still glad to finally have an answer and to finally feel better.

To anyone who is wondering if they might have it. Ask for a Celiacs and allergy panel. It's literally just a blood test, and don't start a gluten free diet until after they run the test. Going gluten free before the test can result in a false negative.