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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. chrisinpa
      - chrisinpa commented on Scott Adams's article in Skin Problems and Celiac Disease
      2

      Celiac Disease and Skin Disorders: Exploring a Genetic Connection

      Maybe they can attribute certain skin conditions to either being susceptible to getting Celiac......or the other way around....but I have to ask if certain people are prone to Celiac because of genetics and some people aren't. It's kind of the same thing as what came first.....the chicken or the egg.?
    2. knitty kitty
      - knitty kitty replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      3

      My journey is it gluten or fiber?

      @xxnonamexx, There's labeling on those Trubar gluten free high fiber protein bars that say: "Manufactured in a facility that also processes peanuts, milk, soy, fish, WHEAT, sesame, and other tree nuts." You may want to avoid products made in shared facilities. If you are trying to add more fiber to your diet to ease constipation, considering...
    3. trents
      - trents replied to sha1091a's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Issues before diagnosis

      Welcome to celiac.com @sha1091a! Your experience is a very common one. Celiac disease is one the most underdiagnosed and misdiagnosed medical conditions out there. The reasons are numerous. One key one is that its symptoms mimic so many other diseases. Another is ignorance on the part of the medical community with regard to the range of symptoms that celiac...
    4. trents
      - trents commented on Jefferson Adams's article in Other Diseases and Disorders Associated with Celiac Disease
      6

      Celiac Disease Patients Face Higher Risk of Systemic Lupus

      What kind of practitioner did the blood test? Was this a medical doctor, a naturopathic doctor, a GI doc? I would certainly follow up with them and ask why they advised you not to eat red meat. I mean, it could be something like they, themselves, are a vegetarian and give that advice to everyone. Have you had an endoscopy with biopsy of the small bowel...
    5. knitty kitty
      - knitty kitty replied to EndlessSummer's topic in Food Intolerance & Leaky Gut
      2

      Dizziness after eating green beans?

      @EndlessSummer, You said you had an allergy to trees. People with Birch Allergy can react to green beans (in the legume family) and other vegetables, as well as some fruits. Look into Oral Allergy Syndrome which can occur at a higher rate in Celiac Disease. Switching to a low histamine diet for a while can give your body time to rid itself of...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,691
    • Most Online (within 30 mins)
      7,748
    4Nic8ion
    Newest Member
    4Nic8ion
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • knitty kitty
      My journey is it gluten or fiber?

      By knitty kitty · Posted

      @xxnonamexx, There's labeling on those Trubar gluten free high fiber protein bars that say: "Manufactured in a facility that also processes peanuts, milk, soy, fish, WHEAT, sesame, and other tree nuts." You may want to avoid products made in shared facilities.   If you are trying to add more fiber to your diet to ease constipation, considering eating more leafy green vegetables and cruciferous vegetables.  Not only are these high in fiber, they also are good sources of magnesium.  Many newly diagnosed are low in magnesium and B vitamins and suffer with constipation.  Thiamine Vitamin B1 and magnesium work together.  Thiamine in the form Benfotiamine has been shown to improve intestinal health.  Thiamine and magnesium are important to gastrointestinal health and function.  
    • trents
      Issues before diagnosis

      By trents · Posted

      Welcome to celiac.com @sha1091a! Your experience is a very common one. Celiac disease is one the most underdiagnosed and misdiagnosed medical conditions out there. The reasons are numerous. One key one is that its symptoms mimic so many other diseases. Another is ignorance on the part of the medical community with regard to the range of symptoms that celiac disease can produce. Clinicians often are only looking for classic GI symptoms and are unaware of the many other subsystems in the body that can be damaged before classic GI symptoms manifest, if ever they do. Many celiacs are of the "silent" variety and have few if any GI symptoms while all along, damage is being done to their bodies. In my case, the original symptoms were elevated liver enzymes which I endured for 13 years before I was diagnosed with celiac disease. By the grace of God my liver was not destroyed. It is common for the onset of the disease to happen 10 years before you ever get a diagnosis. Thankfully, that is slowly changing as there has developed more awareness on the part of both the medical community and the public in the past 20 years or so. Blessings!
    • knitty kitty
      Dizziness after eating green beans?

      By knitty kitty · Posted

      @EndlessSummer, You said you had an allergy to trees.  People with Birch Allergy can react to green beans (in the legume family) and other vegetables, as well as some fruits.  Look into Oral Allergy Syndrome which can occur at a higher rate in Celiac Disease.   Switching to a low histamine diet for a while can give your body time to rid itself of the extra histamine the body makes with Celiac disease and histamine consumed in the diet.   Vitamin C and the eight B vitamins are needed to help the body clear histamine.   Have you been checked for nutritional deficiencies?
    • sha1091a
      Issues before diagnosis

      By sha1091a · Posted

      I found out the age of 68 that I am a celiac. When I was 16, I had my gallbladder removed when I was 24 I was put on a medication because I was told I had fibromyalgia.   going to Doctor’s over many years, not one of them thought to check me out for celiac disease. I am aware that it only started being tested by bloodwork I believe in the late 90s, but still I’m kind of confused why my gallbladder my joint pain flatulent that I complained of constantly was totally ignored. Is it not something that is taught to our medical system? It wasn’t a Doctor Who asked for the test to be done. I asked for it because of something I had read and my test came back positive. My number was quite high.Are there other people out here that had this kind of problems and they were ignored? 
    • trents
      Dizziness after eating green beans?

      By trents · Posted

      Welcome to celiac.com, @EndlessSummer! Do you react to all vegetables or just specific kinds or families of them? What you describe with green beans sounds like it has an anaphylaxis component. Like you, walnuts are a problem for me. They will often give me a scratchy throat so I try to avoid them. Does it matter if the vegies are raw or will-cooked in how you react to them?
×
×
  • 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.