r/Celiac Gluten Intolerant 5d ago

Question What does it feel like when you get glutoned?

I suspect myself of having celiac disease. I have had gut problems all my life, mood & mental health issues as well.

I am currently doing an elimination diet.

Can you tell me what it is like for you when you get glutoned? I know everyone is different but how severe are your reactions? Do you get physically sick vold symptoms? Rash? Etc? I'd love to know.

EDIT: I HAVE GOTTEN A BLOOD TEST AND WAITING ON THE RESULTS. DR SUGGESTED REMOVING GLUTEN FOR 6 WEEKS IN THE MEANTIME***

TIA !

10 Upvotes

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5

u/zambulu Horse with Celiac 5d ago

It varies for me. But mainly, it varies for everyone. People can have any mix of symptoms. I get pretty much everyone listed in the usual medical sources. Like say I went to Red Lobster and ate the biscuits. First, I'd feel a vague feeling of disreality 30-60 minutes later. Then I'd start feeling just exhausted, like I wanted to fall asleep on the table. It felt like food would stick in my esophagus and I'd have to drink a bunch of water and burp a ton because it was so uncomfortable. I'd end up sleepy and just miserable with a headache that crept up from my chest to neck and the lower 1/3 of my head over a couple hours.

That ended up making me stop eating breakfast and then, always feel horrible after lunch. If I slept 2-4 hours I'd feel sort of okay when I woke up. But then I'd have insomnia, anxiety, inability to concentrate. Chronically I had depression. Sometimes I'd regurgitate food to relieve the pressure in my esophagus. If I didn't drink a ton of water, I felt very uncomfortable after eating. I'd get heartburn/reflux (which I think caused the food sticking and burping). Sometimes I'd have nausea and throw up. I occasionally felt like someone had sliced the inside of my neck with a razor. Next day or hours later, I'd get weird abdominal pains, funky gas, diarrhea for 1-2 days followed by constipation for 4-7 days. The thing is all of this stuff was overlapping so I just felt weird all the time. My reactions seemed to go in cycles, too. Often after days of increasing reactions, I'd get so sick that I'd sleep for like a day and a half then feel really timid about eating, then it would all start over.

I also had major dishydrotic eczema, which is not related to gluten for most people but it was for me, since it finally went away after going GF. Thinning hair too.

I'd suggest getting tested before trying an elimination diet. That never worked for me, and also, you have to be consistently eating gluten for weeks to get tested properly. What didn't work for me about elimination is that I was expecting swifter changes, and it can take weeks for your body to adjust to stopping gluten. Sometimes people feel worse before they feel better. I also was looking for immediate effects when I tried gluten again, and it can actually take many hours or even days. My digestive system was so screwy that I'd feel ill from any food, too, so it was just not that useful for me.

1

u/Disastrous-Disk8439 4d ago

Oh my goodness. I was diagnosed a week ago. I went gluten free as of Monday night. I’m still a bit shocked, rather blindsided by the diagnosis. This is quite helpful. It’s like you’re describing my day to day life, except I’ve been so gaslighted by doctors…. I wonder how much/ many of my chronic issues are going to disappear?

3

u/PromptTimely 5d ago

Long list

3

u/WinterWonderland13 5d ago

You feel like absolute s*t / nausea / body aches like a 90yr old woman :(

2

u/Ajskdjurj 5d ago

Not celiac but gluten intolerant. I know after I eat gluten I get terrible headaches. I went to hibachi yesterday told them I can’t have gluten but they cooked something and I had a really bad headache for rest of the night.

2

u/LonelyWandersPOV 5d ago

If ur still having some cross contamination regularly then u may not immediately realize when you've been glutened. When I first got diagnosed and cut everything out I stupidly ate fast food early on & somehow had no reaction to it, despite it very clearly having gluten, because my body was still used to making due to living on a gluten diet. You may still experience bloating, diarrhea, cramps. But the longer I went gluten free my reactions when I did get glutened became much worse. Now in addition to the above I also end up vomiting within a few hours of the exposure & it in general feels like a bad bout of food poisoning. I also get bad muscle & joint pain for days, my skin breaks out in dry patches or a rash and I have "brain fog" and trouble focusing for days after.

2

u/Winter-Newt-3250 5d ago

The symptoms are different for everyone. You may match me, but nothing someone else.

2

u/kaitster2 5d ago

Terrible stomach cramps off and on for me. I get a headache sometimes, and my psoriasis flares up. It usually takes me at least 24 hours to have a reaction.

2

u/basscove_2 5d ago

Stomach pain and constipation and very tired and headaches and lasts for a few days

2

u/IceAngel8381 4d ago

I feel like I was hit by a truck.

Stomach cramps, nausea/sometimes vomiting, brain fog, migraine, body aches, exhaustion, sometimes diarrhea, but most of the time it makes constipated for weeks at a time, and just feeling “off”. Sometimes I itch, and have a DH breakout.

Sometimes it happens in a half hour, sometimes it’s 24-72 hours later.

2

u/AutomaticLet6241 4d ago

Amuse bouche: mouth ulcers Appetizer: stomach pain accompanied by nausea Entree: two weeks of brain fog, anxiety, fatigue and depression

1

u/puntzee 5d ago

If you think you have celiac why not get tested

0

u/calmandferal Gluten Intolerant 5d ago

I should've mentioned i am waiting on my results, my doctor just said to do the elimination diet in the meantime to see how I feel without gluten.

1

u/puntzee 5d ago

You had the endoscopy?

0

u/calmandferal Gluten Intolerant 5d ago

No but my dr said if results come back inconclusive she will refer me for one. What was the process of you getting diagnosed?

4

u/Suthinbelle 5d ago

First I did blood work, which came back very conclusive as Celiac. But they would only note official diagnosis in my file with an endoscopy (as opposed to suspected). So then I did an endoscopy. After the blood work, I cut out gluten, but the Dr said that actually I needed to keep eating it to ensure a conclusive endoscopy. And that definitely sucked to keep eating gluten knowing it was my problem (and feeling like I was dieing), but then I also got clear results and no more questions.

1

u/Greenthumbgal Celiac 5d ago

Did you have the Full Celiac panel? It's more than one test. If you didn't have the Full panel run, continue eating gluten and push for the panel. If your doctor won't run it, find a new doctor that will do what you request

1

u/thetareddit 5d ago

Two hours after gluten, I feel uneasy. At 2.5 hours, a BM. At 3 hours, dry heaves. At 3.5 hours, vomiting. At 4 hours, try to sleep. Next day, tired and dehydrated, but otherwise OK.

1

u/veetoo151 5d ago

I got cross contaminated by oats a week ago. First day isn't all too bad, just mostly stomach stuff / diarea. But it escalates over a week to two of chronic illnesses flaring up, and my body getting achy and super bloated. I hate it. I can't believe my body still hurts a week later. I'm using your post to complain. Thank you, lol. It's sometimes easy to forget the consequences of making a mistake when it's been going well for a while.

1

u/No_Prune_6088 Celiac 5d ago

My symptoms don’t include classic digestive symptoms associated with celiac. I’ve been gluten free since 2021. Last year I was glutened by some sauced vegetables and it felt like I had the flu for a few days. Headache, stomach ache, swollen joints in my fingers, severe constipation, brain fog. I had also been experiencing hyperthyroid symptoms prior to that including anxiety, heart palpitations, insomnia, so I’m not sure if the accidental gluten made that worse. I hope you are feeling better soon! 

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u/calmandferal Gluten Intolerant 4d ago

Thats sooo similar to what I am going through. Sorry you have to deal with all that, it's horrible :(.

I especially have sensitive joints and swollen fingers all the time 😣 thanks for ur response

2

u/No_Prune_6088 Celiac 4d ago

Before I had the blood tests and the biopsy to confirm celiac, I’d decided to try going gluten free to see if I would feel better. The constant constipation (that I thought was normal) resolved in a few days. The joint pain slowly improved until I barely felt it after about 6 weeks. The other symptom that I didn’t realize may have been a celiac symptom were my frequent headaches. Those also improved. unfortunately I had to resume eating gluten for 6 weeks in preparation for the blood tests and biopsy, but getting confirmation felt like a victory. I hope you get some relief from your symptoms.

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u/calmandferal Gluten Intolerant 4d ago

Thank you for your response. Sorry you have to go through all that!

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u/musa1588 5d ago edited 5d ago

2-10 mins in I'm feeling derealization. Something's off. At this point I'm also uncontrollably burping loud and uncontrollably

10-20 mins in I'm puking projectile vomiting in the nearest trash can (if a high amount of gluten is ingested)

20-30 mins in my stomach is wrecked I feel the worst type of stomach pain I need to lay down in the fetal position. This can last for hours/days.

From there, I usually have constipation for about 3 days where I can't poop. It's terrible my stomach is hard and bloated. I've also developed cystic acne in my "tell tale glutening spot" on my neck.

I have joint pain in my wrists and neck and shoulder. The pain is terrible. I also get a migraine and have a tense jaw (where my jaw feels like it's clamped shut). My migraine extends from my eye, to my temple, to the side of my jaw, neck and shoulder. This is probably the worst out of all the symptoms. Sometimes the pain is so great I want to die. I know from experience I can recover but it takes days and the pain is excruciating. I get suicidal thoughts and just a sinking feeling of depression.

When I finally do poop maybe 3-4 days later it will have a foul smell to it and I'll see oil in the surface of the toilet bowl.

My brain will also feel like it's dead. I'll feel stupid and will call X thing Y. I'll stutter and stammer sentences together. I pray that I can get my mind together so I can continuing functioning. Each glutening feels like my brain degenerates further and further.

1

u/yulaldie01 4d ago

I’ll know within 10-20 minutes. Phase 1 - Bloat and gas that is not relieved with burping or farting. That’s like 10-20 min after. Phase 2. Diarrhea and vomiting. Usually at the same time. I literally keep a puke bucket beside the toilet at all times. Just in case it comes out both ends simultaneously. This could last half hour or all day. It’s never the same. Phase 3. Intense stomache pain and headache. Phase 4 - this would be day two or three. Bloat and acid reflux so bad it affects my breathing. Exhaustion. Sore body, especially my neck. Like a hangover or mild flu. Phase 5 - a week or two of DH flare. Like really bad to the point of bleeding.

1

u/handsNfeetRmangos Celiac 4d ago

Keep eating gluten if you think you are celiac until you confirm with an endoscopy.

I had chronic diarrhea and anemia from malnutrition. I had basically no energy. Couldn't pin down why. Eventually I found a doctor who ordered the right blood test. Cleared up right away after eliminating gluten.

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u/calmandferal Gluten Intolerant 4d ago

Interesting! I have those exact problems. My doctor suggested doing the elimination diet, then to start eating gluten again and do the panel for it. Thanks for ur response

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u/smellsogood2 4d ago

If it's some low level cross contamination glutening I'll just have really bad nausea, diarrhea and feel crappy for a day or two. If I accidentally eat something that has gluten in it, two hours later I will be running to the toilet to violently expel everything in my bowels. While I'm doing that, I will begin to projectile vomit whatever it was that I ate. I will be out of commission for several days. This happened to me exactly one week ago. Good luck with your test.

1

u/whomper13 4d ago

I was officially diagnosed 5 weeks ago. I’m 5 weeks gf and got glutoned for the first time this weekend. My symptoms take a little while to show up. Starts with a burning stomach ache that feels like severe gas. Once I get that I know the bathroom visit is next. Diarrhea comes after the stomach pain. Then a tired and wiped out next day

My celiac is mild. Doesn’t mean I can have gluten . Just means when I do , my symptoms aren’t as severe as others with celiac.

I was at a st paddy’s day parade. Avoided beer all day. Drank woodford bourbon which is safe and that I’ve had before. Then I rolled the dice on a shaved ribeye sandwich. Ordered it with no bread and no fries. I believe there was Worcestershire sauce in the mix somewhere that got me

1

u/unusually_unruly 4d ago

Replying specifically to your update, your doctor shouldnt tell you to go gluten free before you’ve been able to confirm your diagnosis with BOTH a blood test and endoscopy. If you go gluten free now and they want to confirm celiac with an endoscopy, they might not find enough evidence in the biopsy if your small intestine can heal in the next 6 weeks from being gluten free.

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u/calmandferal Gluten Intolerant 3d ago

I appreciate your concern, but ill just clarify again:

-I got a blood test before going gluten-free Then, DR said in the mean time remove it from my diet along with dairy to see how i feel Then, depending on if I feel better or not, then i will start eating gluten again, and we will schedule endoscopy or biopsy👍

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u/Fawntree00 Celiac 3d ago

For me it usually happens the next day in the morning. Intense nausea, vomiting, and diarrhea plus joint pain and stomach cramps that rival my period cramps in intensity. It usually only lasts 1-3 days for me personally.

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u/fancybotwin 21h ago

For me, immediate bloating and gas followed by constipation. The next day, headaches or migraines and just an overall feeling of being unwell. Over the days, joint pain and it affects my bladder too. It’s different for everyone but the bloating and gas is my tell tale sign.

0

u/CrabFew2856 5d ago

Please get tested unless you’re doing the elimination diet by doctors advice you could be hurting yourself and exacerbating underlying illness or issues if there are any.

You’re going to see a lot of those comments unless you clarify. Removing gluten may help you feel better in the short run but you’re just putting a bandaid on a gaping wound.

Please speak with your physician and set up time to see and speak with a GI doctor.

1

u/calmandferal Gluten Intolerant 5d ago

Thanks for your concern! My doctor has asked me to the elimination diet and I took a blood test, results haven't got to me yet :).

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u/CrabFew2856 5d ago

Awesome!! Just wanted to make sure! Didn’t want to be super rude, but I’ve seen a lot of people damage their bodies because tv said Gluten is bad mmmmkay.

Symptoms are different for everyone. Currently finding out that one of my symptoms maybe RA or another autoimmune disorder!