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
      132,004
    • Most Online (within 30 mins)
      7,748
    Daffodil
    Newest Member
    Daffodil
    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

    • Wheatwacked
      Chances of being coeliac

      By Wheatwacked · Posted

      Welcome @JoJo0611. That is a valid question.  Unfortunately the short answer is slim to none.  Be proactive, when the diagnosis process is completed, start GFD.  Remember also that the western diet is deficient in many nutrients that governments require fortification.  Read the side of a breakfast cereal box. Anti-tTG antibodies has superseded older serological tests It has a strong sensitivity (99%) and specificity (>90%) for identifying celiac disease. A list of symptoms linked to Celiac is below.  No one seems to be tracking it, but I suspect that those with elevated ttg, but not diagnosed with Celiac Disease, are diagnosed with celiac disease many years later or just die, misdiagnosed.  Wheat has a very significant role in our economy and society.  And it is addictive.  Anti-tTG antibodies can be elevated without gluten intake in cases of other autoimmune diseases, certain infections, and inflammatory conditions like inflammatory bowel disease. Transient increases have been observed during infections such as Epstein-Barr virus.Some autoimmune disorders including hepatitis and biliary cirrhosis, gall bladder disease. Then, at 65 they are told you have Ciliac Disease. Milk protein has been connected to elevated levels.   Except for Ireland and New Zealand where almost all dairy cows are grass fed, commercial diaries feed cows TMR Total Mixed Rations which include hay, silage, grains and concentrate, protein supplements, vitamins and minerals, byproducts and feed additives. Up to 80% of their diet is food that cannot be eaten by humans. Byproducts of cotton seeds, citrus pulp, brewer’s grains (wheat and barley, rye, malt, candy waste, bakery waste. The wheat, barley and rye become molecules in the milk protein and can trigger tTg Iga in persons suseptible to Celiac. I can drink Grass fed milk, it tastes better, like the milk the milkman delivered in the 50's.  If I drink commercial or Organic milk at bedtime I wake with indigestion.    
    • captaincrab55
      Celiac getting dentures

      By captaincrab55 · Posted

      Can you please share your research about MMA acrylic containing gluten?   I comin up blank about it containing gluten.  Thanks in Advance,  Tom
    • Aretaeus Cappadocia
      Dedicated gluten-free Restaurants in East Bay (near San Francisco):

      By Aretaeus Cappadocia · Posted

      I strongly recommend 2 dedicated gluten free (gluten-free) restaurants in my area (East Bay of San Francisco Bay Area) (2025) -- Life is Sweet Bakery and Café in Danville. I've been a few times with friends and tried multiple entrees and salads. All very good and worth having again. I've also tried a number of their bakery goods. All extremely good (not just "good for gluten-free"). https://lifeissweetbakeryandcafe.com/ -- Kitara Kitchen in Albany (they have additional locations). I've been once and had the "Buritto Bowl". Six individual items plus a sauce. Outstanding. Not just "for gluten-free", but outstanding in its own right. Vibrant flavors, great textures. I can't wait to go back. https://www.kitava.com/location/kitava-albany/  
    • Martha Mitchell
      Celiac getting dentures

      By Martha Mitchell · Posted

      I'm 67 and have been celiac for 17yrs. I had cataract surgery and they put a gluten lens in my eye. Through a lot of research, I found out about MMA acrylic...it contains gluten. It took 6 months for me to find a DR that would remove it and replace it with a gluten-free lens . I have lost some vision in that eye because of it . I also go to a prosthodontist instead of a regular dentist because they are specialized. He has made me a night guard and a few retainers with no issues... where my regular dentist didn't care. I have really bad reactions to gluten and I'm extremely sensitive, even to CC. I have done so much research on gluten-free issues because of these Drs that just don't care. Gluten is in almost everything shampoo, lotion, food, spices, acrylic, medication even communion wafers! All of my Drs know and believe me I remind them often.... welcome to my world!
    • trents
      Chances of being coeliac

      By trents · Posted

      If this applies geographically, in the U.K., physicians will often declare a diagnosis of celiac disease based on the TTG-IGA antibody blood test alone if the score is 10x normal or greater, which your score is. There is very little chance the endoscopy/biopsy will contradict the antibody blood test. 
×
×
  • 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.