Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

What Is Your Worst Symptom When Glutened?

Googles

By Googles
in Coping with Celiac Disease

Recommended Posts

Googles Community Regular
Googles
Posted

I was wondering what people's worst symptom is when you get glutened. I have been gluten free for about 2.5 years now. When I first started learning about celiac and what would happen when glutened I assumed that the GI problems would be the worst thing about being glutened. However, for me it ends up being the emotional dis-regulation and the insomnia. The two together just make me a mess. I end up being a weepy mess that can't control my down moods. What is your worst symptom to deal with when glutened?

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


Poppi Enthusiast
Poppi
Posted

For me it's the burning pain in my back.

The emotional stuff passes pretty quickly for me and even the fatigue and nausea is gone in a week but the horrible burning pain in my back and neck can last for months. And nothing helps.

lynnelise Apprentice
lynnelise
Posted

For me it's GI symptoms that bother me most. Once they hit I have a very small window of time to find a bathroom. It's miserable and embarrassing. Also I have chronic mono and it seems to cause a major flare up of that if I'm glutened. I never feel good but I do have some good days...a glutening leads to about a week or two of bad days!

Dana Ward Newbie
Dana Ward
Posted

For me it's GI symptoms that bother me most. Once they hit I have a very small window of time to find a bathroom. It's miserable and embarrassing. Also I have chronic mono and it seems to cause a major flare up of that if I'm glutened. I never feel good but I do have some good days...a glutening leads to about a week or two of bad days!

Same for me. I know for sure when my stomach starts to twist.

Kansas Rookie
Kansas
Posted

The neuro symptoms I experience are the worst with the GI running a close second, Then knowing it will take a month to 6 weeks before I feel super again really hits hard, because every time I have been glutened is when I decide I can try something labeled gluten free. I have now decided that the only things I eat will be certified gluten free and whole foods. I also have dairy and soy issues, so the whole foods works for me and I feel really good.

Jenny (AZ via TX) Enthusiast
Jenny (AZ via TX)
Posted

I would have to say it is a migraine with "D". It usually hits me about 8 hours after. However, I can only assume it's gluten. I'm just never sure if that's what it really is. However, it usually is when I eat out (even though they have told me it's gluten-free - I suspect cc).

Skylark Collaborator
Skylark
Posted

I was wondering what people's worst symptom is when you get glutened. I have been gluten free for about 2.5 years now. When I first started learning about celiac and what would happen when glutened I assumed that the GI problems would be the worst thing about being glutened. However, for me it ends up being the emotional dis-regulation and the insomnia. The two together just make me a mess. I end up being a weepy mess that can't control my down moods. What is your worst symptom to deal with when glutened?

Me too, me too! I can handle the GI stuff no problem but the depression/anxiety is truly awful.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


Celtic Queen Explorer
Celtic Queen
Posted
[Googles, on 21 December 2011 - 01:08 PM, said:

I was wondering what people's worst symptom is when you get glutened. I have been gluten free for about 2.5 years now. When I first started learning about celiac and what would happen when glutened I assumed that the GI problems would be the worst thing about being glutened. However, for me it ends up being the emotional dis-regulation and the insomnia. The two together just make me a mess. I end up being a weepy mess that can't control my down moods. What is your worst symptom to deal with when glutened?

Me too, me too! I can handle the GI stuff no problem but the depression/anxiety is truly awful.

/quote]

Me too on the depression. I get so apathetic and I hate feeling that way. The brain fog is a bad one for me too.

navigator Apprentice
navigator
Posted

The overwhelming fatigue and joint aches. I glutened myself with spices on Thursday night. I started to feel an improvement yesterday and thought that I was getting over it but today I'm worse than ever. :(

beebs Enthusiast
beebs
Posted

Intussusception is by far the worst for me. Last time I started with violently projectile vomiting everything and then bile where I can't get a breath in and then the agonising pain started (very much up there with labour), I ended up in emergency and felt as if I was going to die it lasted about 3 hours from start to finish. Then of course all the other symptoms like GERD and C last for weeks and weeks after :blink:

dilettantesteph Collaborator
dilettantesteph
Posted

The depression is terrible, but so is not making it to the toilet in time. I don't know which is worst.

TeknoLen Rookie
TeknoLen
Posted

Someone described previously said it best, "twisting guts". That can be quite uncomfortable...

bartfull Rising Star
bartfull
Posted

I'm still not sure if this undiagnosed jaw pain is strictly gluten/corn related or not, so even though that is my worst health problem, I don't think I can name that.

So I'd have to say the insomnia and all of the fatigue, low energy, and emotional fragility it brings.

Kate79 Apprentice
Kate79
Posted

Migraines with nausea are by far the worst, with emotional symptoms and fatigue second. I do get some GI symptoms, but those have been manageable so far.

Chad Sines Rising Star
Chad Sines
Posted

GI. I am always fatigued, but nausea is one of those things that really impairs a person. That low-grade come and go is a killer.

IrishHeart Veteran
IrishHeart
Posted

Definitely the Neuro symptoms :rolleyes: ---what I call "Gluten Head" --you know, the 7 dwarves: spacey, dopey, racy, anxious, depressed, agitated, and clumsy.

The increased joint and nerve pain comes in second--ooh, that's just great. <_<

The GI stuff --nausea, burning, churning, and the rest?---is just the joyful icing on the cake. :blink:

Lasts about 2 weeks.

Gluten is a bugger.

beebs Enthusiast
beebs
Posted

I'm still not sure if this undiagnosed jaw pain is strictly gluten/corn related or not, so even though that is my worst health problem, I don't think I can name that.

So I'd have to say the insomnia and all of the fatigue, low energy, and emotional fragility it brings.

I get jaw pain when the GERD is really bad, So for me Jaw pain is very much related to eating gluten:)

IrishHeart Veteran
IrishHeart
Posted

I get jaw pain when the GERD is really bad, So for me Jaw pain is very much related to eating gluten:)

Me too!

My jaw and face and neck muscles--all ache from gluten. Anxiety is provoked by gluten and we clench our jaw muscles. Inflammation from gluten will hit any joint or muscle group.

I am working on an article on this very topic for the TMJD specialist and the MT who works on his patients.

Guess what's the one factor we all share? Gluten intolerance.

irish daveyboy Community Regular
irish daveyboy
Posted

Within 6 hrs of Gluten ingestion I get

projectile vomiting

followed by at least 24hrs of diarrhoea and chronic fatigue (depending on how bad the glutening was).

CarolinaKip Community Regular
CarolinaKip
Posted

Someone described previously said it best, "twisting guts". That can be quite uncomfortable...

This is what I have as well. It's so painful, I'm in a fetal position for hours. I don't run to the bathroom, just have the twisting terrible pain!!

navigator Apprentice
navigator
Posted

I'm still not sure if this undiagnosed jaw pain is strictly gluten/corn related or not, so even though that is my worst health problem, I don't think I can name that.

So I'd have to say the insomnia and all of the fatigue, low energy, and emotional fragility it brings.

For decades my jaw pain was diagnosed as a result of my heart murmur- i now believe it's coeiac disease. I was first aware as of it as a teenager. I'm 54 and diagnosed this year.

Huge improvement in heart palpitatiions.

beebs Enthusiast
beebs
Posted

Me too!

My jaw and face and neck muscles--all ache from gluten. Anxiety is provoked by gluten and we clench our jaw muscles. Inflammation from gluten will hit any joint or muscle group.

I am working on an article on this very topic for the TMJ specialist and the MT who works on his patients.

Guess what's the one factor we all share? Gluten intolerance.

What is a TMJ and MT?? Sorry - still catching up on the jargon!

silk Contributor
silk
Posted

The twisting gut IS very accurate! My first symptom though is a feeling of being completely stuffed full of food. It usually happens after just a few bites and within 15 minutes of consumption, followed by rapidly repeating burping for several minutes. Does anyone else experience this? I will tell you that that initial discomfort (at least for me and my 3 daughters who all have celiac as well) is eased by a little bit of wine. Not sure what the wine actually does but suspect that it might just 'relax' things a little. The wine does nothing for the symptoms that follow that initial response and usually go on for a few days but it at least helps a little.

IrishHeart Veteran
IrishHeart
Posted

What is a TMJ and MT?? Sorry - still catching up on the jargon!

sorry, hon.... I should have been more specific.

Temporal mandibular joint--- TMJ dysfunction is pain in this joint .

Open Original Shared Link

MT --massage therapist :)

dilettantesteph Collaborator
dilettantesteph
Posted

projectile vomiting

My son gets that. I'd have to agree that's the worst. With not making it to the toilet, at least you could wear diapers and do what you have to do. It's hard to attach a sac to your face.

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,929
    • Most Online (within 30 mins)
      7,748
    Mike Rowicki
    Newest Member
    Mike Rowicki
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • lehum
      4.5 years into diagnosis, eating gluten-free and still struggling: would love support, tips, & stories

      By lehum · Posted

      Hi and thank you very much for your detailed response! I am so glad that the protocol worked so well for you and helped you to get your health back on track. I've heard of it helping other people too. One question I have is how did you maintain your weight on this diet? I really rely on nuts and rice to keep me at a steady weight because I tend to lose weight quickly and am having a hard time envisioning how to make it work, especially when not being able to eat things like nuts and avocados. In case you have any input, woud be great to hear it! Friendly greetings.
    • Hmart
      Is this celiac?

      By Hmart · Posted

      I was not taking any medications previous to this. I was a healthy 49 yo with some mild stomach discomfort. I noticed the onset of tinnitus earlier this year and I had Covid at the end of June. My first ‘flare-up’ with these symptoms was in August and I was eating gluten like normal. I had another flare-up in September and then got an upper endo at the end of September that showed possible celiac. My blood test came a week later. While I didn’t stop eating gluten before I had the blood test, I had cut back on food and gluten both. I had a flare-up with this symptoms after one week of gluten free but wasn’t being crazy careful. Then I had another flare-up this week. I think it might have been caused by Trader Joe’s baked tofu which I didn’t realize had wheat. But I don’t know if these flare-ups are caused by gluten or if there’s something else going on. I am food journaling and tracking all symptoms. I have lost 7 pounds in the last 10 days. 
    • trents
      Is this celiac?

      By trents · Posted

      Welcome to the forum, @Hmart! There are other medical conditions besides celiac disease that can cause villous atrophy as well as some medications and for some people, the dairy protein casein. So, your question is a valid one. Especially in view of the fact that your antibody testing was negative, though there are also some seronegative celiacs. So, do you get reactions every time you consume gluten? If you were to purposely consume a slice of bread would you be certain to develop the symptoms you describe?
    • klmgarland
      Help I’m cross contaminating myself,

      By klmgarland · Posted

      I have a lot to learn!  Thank you
    • DebJ14
      Does anyone here also have Afib

      By DebJ14 · Posted

      I only went on the multi vitamin AFTER a couple of year of high dose, targeted supplementation resolved most of my deficiencies.  I was on quite a cocktail of vitamins that was changed every 6 months as my deficiencies resolved.  Those that were determined to be genetic are still addressed with specific doses of those vitamins, minerals and amino acids. I have an update on my husband and his A Fib.  He ended up in the hospital in August 2025 when his A Fib would not convert.  He took the maximum dose of Flecainide allowed within a 24 hour period.  It was a nightmare experience!  They took him into the ER immediately.  They put in a line, drew blood, did an EKG and chest Xray all within minutes.  Never saw another human for 6 hours.  Never got any results, but obviously we could see he was still in A fib by watching the monitor.  They have the family sign up for text alerts at the ER desk.  So glad I did.  That is the only way we found out that he was being admitted.  About an hour after that text someone came to take him to his room on an observation floor.  We were there two hours before we saw another human being and believe it or not that was by zoom on the TV in the room.  It was admissions wanting to know his vaccine status and confirming his insurance, which we provided at the ER desk.  They said someone would be in and finally a nurse arrived.  He was told a hospitalist was in charge of his case.  Finally the NP for the hospitalist showed up and my husband literally blew his stack.  He got so angry and yelled at this poor woman, but it was exactly what he needed to convert himself to sinus rhythm while she was there.  They got an EKG machine and confirmed it.  She told him that they wanted to keep him overnight and would do an echo in the morning and they were concerned about a wound on his leg and wanted to do a doppler to make sure he did not have a DVT.  He agreed.  The echo showed everything fine, just as it was at his annual check up in June and there was no DVT.  A cardiologist finally showed up to discharge him and after reviewing his history said the A Fib was due to the Amoxicillan prescribed for his leg wound.  It both triggers A Fib and prevents the Flecainide from working.  His conversion coincided with the last dose of antibiotic getting out of his system.  So, make sure your PCP understands what antibiotics you can or cannot take if susceptible to A Fib.  This cardiologist (not his regular) wanted him on Metoprolol 25 mg and Pradaxa.  My husband told him that his cardiologist axed the idea of a beta blocker because his heart rate is already low.  Sure enough, it dropped to 42 on the Metoprolol and my husband felt horrible.  The pradaxa gave him a full body rash!  He went back to his cardiologist for follow up and his BP was fine and heart rate in the mid 50's.  He also axed the Pradaxa since my husband has low platelets, bruises easily and gets bloody noses just from Fish Oil  He suggested he take Black Cumin Seed Oil for inflammation.  He discovered that by taking the Black Seed oil, he can eat carbs and not go into A Fib, since it does such a good job of reducing inflammation.   Oh and I forgot to say the hospital bill was over $26,000.  Houston Methodist!  
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.