• Ads by Google:
     




    Get email alerts Celiac.com E-Newsletter

    Ads by Google:



       Get email alertsCeliac.com E-Newsletter

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

What Is Your Worst Symptom When Glutened?
0

42 posts in this topic

Recommended Posts

Googles    27

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?

  • Upvote 1

Share this post


Link to post
Share on other sites
Ads by Google:
Ads by Google:


Poppi    101

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.

Share this post


Link to post
Share on other sites
lynnelise    109

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!

Share this post


Link to post
Share on other sites
Dana Ward    0

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.

Share this post


Link to post
Share on other sites
Kansas    5

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.

Share this post


Link to post
Share on other sites
Ads by Google:


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).

Share this post


Link to post
Share on other sites
Skylark    935

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.

Share this post


Link to post
Share on other sites


Ads by Google:


Celtic Queen    33
[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.

Share this post


Link to post
Share on other sites
navigator    31

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. :(

Share this post


Link to post
Share on other sites
beebs    61

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:

Share this post


Link to post
Share on other sites


Ads by Google:


bartfull    565

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.

Share this post


Link to post
Share on other sites
Kate79    16

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.

Share this post


Link to post
Share on other sites
Chad Sines    69

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.

Share this post


Link to post
Share on other sites


Ads by Google:


IrishHeart    1,633

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.

Share this post


Link to post
Share on other sites
beebs    61

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:)

Share this post


Link to post
Share on other sites
IrishHeart    1,633

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.

Share this post


Link to post
Share on other sites

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).

Share this post


Link to post
Share on other sites
CarolinaKip    67

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!!

Share this post


Link to post
Share on other sites
navigator    31

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.

Share this post


Link to post
Share on other sites
beebs    61

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!

Share this post


Link to post
Share on other sites
silk    11

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.

Share this post


Link to post
Share on other sites

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.

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

0

  • Forum Statistics

    • Total Topics
      107,871
    • Total Posts
      938,418
  • Member Statistics

    • Total Members
      65,768
    • Most Online
      3,093

    Newest Member
    cdpierce97
    Joined
  • Popular Now

  • Topics

  • Posts

    • Eeh bah gum, ta JMG!  I find it fascinating that it has almost the same (or is it the same) colour label as Lea and Perrins?  I wonder which came first? Hopefully they have moved from the building in the photo as they are selling so many bottles that they need bigger premises.    Funny though - I thought you'd sent me a picture of a pub when I first saw it.  Bet it was a pub before they took it over!  
    • I would just generally eat healthy. Avoid milk and fructose for a while as they can be difficult to digest before your intestine heals.  Glutamine powder is a protein that is available in grocery stores. Glutamine is the main fuel for the cells that line the intestine, and it may help them grow back faster.  I don't know for sure about alchohol but I would avoid it. Gluten I think is soluble in high concentration alcohol. This may cause a more intense immune response. 
    • http://hypothyroidmom.com/10-nutrient-deficiencies-every-thyroid-patient-should-have-checked/ Here's an article that explains all the nutrients the thyroid needs to function properly and the consequences to the thyroid if there's a deficiency.   Some thyroid problems will correct themselves if existing nutritional deficiencies are corrected.   Check with your doctor to see if any nutritional deficiencies need to be addressed. Hope this helps.  
    • Thanks guys! Ill defintley ask about the full thyroid panel. I did antibodies for those thyroid ones a year ago do i have to get that again.  Thanks Ennis for those recommandations I will resort back to my food diary!
    • To add to the good advice above. I think your husband has to take it on himself to communicate with his parents that this is a serious, medically diagnosed condition that their grandson has to live with for the rest of his life. He needs them to back you up, be supportive etc. On no account should you be cast as the fussy daughter-in-law who has to have her crazy notions indulged - they need to know that their son is 100% on board with this and that the pair of you are united. Just one other point. It's very difficult for most people to conceptualise celiac, they tend to think of it as they would a problem with spicy food say. Something that you should probably avoid but a little bit now and then won't hurt. So without getting scientific, it would be good if your husband could get that key point across. That a little is just about as bad as a lot when the body's immune system is involved.  That there can't be any compromises or cheating. Even the suggestion will be harmful for your son in adjusting. Also that you understand that their house cannot be a gluten-free environment and you don't expect them to change their lives whilst your there - but that you need to take reasonable precautions to keep your son safe.  I think as long as people understand there's reasons for all the precautions etc its easier for them to accept. They may not agree with it or understand it but they can at least understand your thought process.  Finally, get as much of this communicating done in advance so you, your husband and your son can just enjoy himself without constant references to his diet.  Hope it goes well!
  • Upcoming Events