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 Are Your Symptoms When You Get Glutened?


livelifelarge24

Recommended Posts

livelifelarge24 Enthusiast

I got glutened yesterday & I'm having a really rough time today. I'm curious what symptoms you all have when you get glutened. I'm still having a hard time believing what's going on with me.


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



Celiac.com Sponsor (A8-M):



ravenwoodglass Mentor

I don't get as many neuro symptoms as I used to so now my symptoms are mostly GI related. Even after 9 years at this I sometimes make a mistake. Like earlier this week. :( I will bloat for a day or two and have severe stomach pain. Then the D hits, usually at night and that will last for anywhere from 3 to 24 hours and that is then followed by bleeding for a few hours. Once the GI stuff is over I usually will have a couple weeks of joint pain and a bit of brain fog.

It can take some time to get over a good glutening but hopefully you will be feeling better soon.

livelifelarge24 Enthusiast

That sounds awful. Bleeding? I have the diarrhea, a migraine, emotional down in the dumps feeling, muscle weakness, back pain, and feeling like my insides are bei g squeezed.

adab8ca Enthusiast

Once i got glutened i had D for 6 weeks, insomnia, anxiety, nerve pain, joint pain...

last week i did something stupid and had nerve/joint/muscle pain and anxiety but it only lasted about a week...No D this time.

zus888 Contributor

I've only been glutened once, and I started the diet in March. I had no GI effects whatsoever, but had fatigue and some serious depression. Enough of a depression to contact a therapist (before I realized it was gluten that caused it). It was pretty bad. I have a bad attitude about the whole gluten-free diet, so the depression just made that a million times worse.

shadowicewolf Proficient

Neurological stuff (burning and tingling)

Indigestion

C

Knee pain

anxiety

lack of energy

AVR1962 Collaborator

24 hours after having gluten I will have a gassy stomach, sometimes diarrhea, odd headache, very tired, I am off balance, brain fog, and sometimes my blurred vision comes back.


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



Celiac.com Sponsor (A8-M):



ENF Enthusiast

I got glutened earlier this month, about 10 times over the course of about two weeks, as detailed in my thread yesterday in the Gluten-Free Ingredients & Food Labeling Issues section here:

It wasn't nearly as bad as thought it would be, I had some D, emotional and neurological issues, but these problems were not nearly as severe they were for a few years before diagnosis and going gluten-free. During this recent setback I was able to go bicycle riding, and even traveled a fair distance by subway to attend a music concert despite the issues I was having. I didn't suspect glutening, I thought it was my nerves and/or something I ate other than gluten that didn't totally agree with me. This was probably the worst, or possibly the only, incident of glutening I've had in the past six years, so maybe my system was able to handle it better, for a brief time, at least.

Poppi Enthusiast

About 2-3 hours after a glutening I get this sudden emotional dive, I feel hopeless and weepy

Tummy gurgling starts shorty after

fatigue hits around the same time, is pretty intense for the first few days and then slowly lifts over the next 10 days

The next morning I usually have a few bouts of D, followed by a week or so of C

The nausea, joint pain, headaches and depression usually hit full force about 12-24 hours after the glutening and last a week or two

The back pain is by far my worst symptom and can last 2-4 weeks. The first 10 days is really awful and then it slowly gets better. I am starting physio on my back tomorrow morning with the hopes that a stronger back might help alleviate some of the pain, it can't hurt.

livelifelarge24 Enthusiast

Wow I'm sorry for everything you all go through but I appreciate you sharing because it does help me to not feel crazy. Three times this has happened & it always starts first with an extreme emotional dive then onto the physical stuff later. The last two times I was struggling to figure out how I got contaminated- this time I knew the second I grabbed my boyfriends beer instead of my gluten free & took a huge swig. It's much much worse this time but I'm not sure if it's because I took such a large amount of gluten inner because I knew to wait for it so maybe psychosomatically ive made it worse? I did ok today despite feeling awful but I'm laid up in bed now with a heating pad on my belly praying that I'll feel better.

PainfulSpaghetti Newbie

For me, I suffer from depression, cramping, gas, bloating, bad taste in my mouth, bleeding, headaches, brain fog, muscle weakness, joint pain, limb tingles, dizziness, some D, some C it varies, and alot of mucus in the stools. Even the teeniest bit will cause problems, and now my mouth will swell, and burn, and I get a rash.

I do my very best to be a food nazi, and stay away from anything suspect but it IS difficult.

Good luck to all!

Jenniferxgfx Contributor

Oh man, I feel like everything goes wrong when I get glutened and the world is ending! First my right hand tingles (so weird), then my stomach hurts and I get nauseous. In a few hours, my stomach still turns, I'm anxious and weepy, and my asthma acts up. In the next days, I'm irritable, get D or C, and have lots of fibromyalgia pain, headaches or migraines, my skin flares up (DH), and nothing sits real well in my stomach. My pain medicine for my back is also less effective.

It's miserable. I'm sorry you've been glutened! I hope you feel better soon.

Cattknap Rookie

I will develop throbbing pain in my left lower abdomen within a few hours after being glutoned, I won't sleep well that night and I will be extra tired the next day. I have never noticed any emotional symptoms.

Goof Rookie

Sudden mood swing - angry

Stomach and intestinal pain

Fatigue

Then, over the course of a week...

Insomnia, Constipation, Brain Fog

mbrookes Community Regular

My symptoms are mostly intestinal... D and nausea. I never had emotional or depression problems at my sickest. OK, I AM Pollyanna, but I always have been. Dull headache sometimes. Arthritic knee a little worse. Usually lasts a couple of days. Bad enough to follow diet as closely as possible, but not a bad as many of you.

dws Contributor

Wow I'm sorry for everything you all go through but I appreciate you sharing because it does help me to not feel crazy. Three times this has happened & it always starts first with an extreme emotional dive then onto the physical stuff later. The last two times I was struggling to figure out how I got contaminated- this time I knew the second I grabbed my boyfriends beer instead of my gluten free & took a huge swig. It's much much worse this time but I'm not sure if it's because I took such a large amount of gluten inner because I knew to wait for it so maybe psychosomatically ive made it worse? I did ok today despite feeling awful but I'm laid up in bed now with a heating pad on my belly praying that I'll feel better.

Hope you will be feeling better soon. On the positive side, the more gluten reactions you have, the better you get to know your symptoms. You can find courage and faith in knowing what to expect and knowing that though you have to go through it, it will end eventually. Doesn't hurt to chat with the man upstairs. Been there, done that! Once you get through the worst of the symptoms, I think it helps to stay as busy as you can. If I am involved in something like work or an activity, I can ignore the residual gut pain better than if I am doing nothing.
livelifelarge24 Enthusiast

You are right about that. Sometimes I think I "can't" get out and do anything but if I force myself to it usually helps. I just feel like it sets me back light years emotionally to go through this :/

lcarter Contributor

For me it means a delayed reaction. I believe that this is more common with celiac disease than not. It lasts anywhere from 3-10 days depending on how much I accidently ingest.....

1. Nausea, usually within 30-60 min. or so of ingestion of gluten or dairy

2. Followed by bloating for a day or more

3. Then, either loose stools and/or diarrhea for a day or longer

4. Frequently accompanied by headache, muscle ache, brain fog, and general malaise

The only thing that seems to help me, when it gets really bad, is to.....

1. Stop eating solids and drink liquids for about 24 hrs

2. Followed by a day of liquids, rice, and applesauce

3. Then, gingerly start back on regular gluten-free + DF foods

dws Contributor

You are right about that. Sometimes I think I "can't" get out and do anything but if I force myself to it usually helps. I just feel like it sets me back light years emotionally to go through this :/

I know what you mean. It is a lot easier to be optomistic when you are not feeling badly. The true test comes when you feel sick. I tend to get pessimistic and have irrational thoughts like "this might last forever". I am working on overcoming that tendency. I often wonder though, if depression is really a true symptom or just a natural side effect. Who wouldn't tend to be depressed about feeling so bad? I feel dissapointment and frustration as much or more than depression. Each time I feel good, I hope I will never feel glutened again. It's hard to take when it happens. You feel like you have had more than your fair share and don't deserve anymore problems.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,561
    • Most Online (within 30 mins)
      7,748

    Valentino
    Newest Member
    Valentino
    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

    • Scott Adams
      Oats naturally contain a protein called avenin, which is similar to the gluten proteins found in wheat, barley, and rye. While avenin is generally considered safe for most people with celiac disease, some individuals, around 5-10% of celiacs, may also have sensitivity to avenin, leading to symptoms similar to gluten exposure. You may fall into this category, and eliminating them is the best way to figure this out. Some people substitute gluten-free quinoa flakes for oats if they want a hot cereal substitute. If you are interested in summaries of scientific publications on the topic of oats and celiac disease, we have an entire category dedicated to it which is here: https://www.celiac.com/celiac-disease/oats-and-celiac-disease-are-they-gluten-free/   
    • knitty kitty
    • knitty kitty
      Hi, @Ginger38, I've had shingles in the past.  I understand how miserable you're feeling.   Not only do i have the chickenpox virus lurking about, I also have the cold sore virus that occasionally flares with a huge cold sore on my lip when stressed or exposed to gluten.  The virus lives dormant in the nerves on the left side of my face.  It causes Bell's Palsy (resulting in drooling).  The cold sore virus is also in my eye.  My eye swells up and my vision is diminished permanently whenever I have a flare, so it's of the utmost importance to keep flares away and treat them immediately if they do happen so I don't lose any more vision.   I take the amino acid supplement L-Lysine.  Lysine messes with the replication of viruses, which helps the body fight them off.   I haven't had an outbreak for several years until this year when exceptionally stressed and contaminated, it flared up again. Lysine has been shown to be beneficial in suppression of viruses like the cold sore virus (a herpetic virus), the chickenpox virus (also a herpetic virus), as well as the HIV virus, and even the Covid virus.   I also take additional Thiamine in the form TTFD (tetrahydrofurfuryl disulfide) because Thiamine has antiviral properties as well.   For pain, a combination of Thiamine (like TTFD or Benfotiamine or Thiamine Hydrochloride), with B12 Cobalamine, and Pyridoxine B6 have been shown to have analgesic properties which relieve pain and neuropathy.    The combination of Thiamine B1, Pyridoxine B6 and Cobalamine B12 really does work to relieve pain.  I take it for back pain from crushed vertebrae in my back.  This combination also works on other pain and neuropathy.   I usually buy a supplement that combines all three and also Riboflavin B2 called EXPLUS online.  However, it's made in Japan and the price with the tariffs added makes it really expensive now.  But the combination of Thiamine B1, Pyridoxine B6 and B12 Cobalamine (and Riboflavin B2) still work even if taken separately.   I can't take Tylenol or ibuprofen because of stomach upsets.  But I can take the vitamin combination without side effects.  However, you can take the three vitamins at the same time as other pain relievers for added benefit.  The vitamins help other pain relievers work better. I hope you will try it.  Hopeful you'll feel better quickly. Interesting Reading: Thiamine, cobalamin, locally injected alone or combination for herpetic itching: a single-center randomized controlled trial https://pubmed.ncbi.nlm.nih.gov/23887347/ Mechanisms of action of vitamin B1 (thiamine), B6 (pyridoxine), and B12 (cobalamin) in pain: a narrative review https://pubmed.ncbi.nlm.nih.gov/35156556/ Analgesic and analgesia-potentiating action of B vitamins https://pubmed.ncbi.nlm.nih.gov/12799982/ A Narrative Review of Alternative Symptomatic Treatments for Herpes Simplex Virus https://pmc.ncbi.nlm.nih.gov/articles/PMC10301284/
    • Mari
      I think, after reading this, that you areso traumatized by not being able yo understand what your medical advisors have been  what medical conditions are that you would like to find a group of people who also feel traumatized who would agree with you and also support you. You are on a crusade much as the way the US Cabinet  official, the Health Director of our nation is in trying to change what he considers outdated and incorrect health advisories. He does not have the education, background or experience to be in the position he occupies and is not making beneficial decisions. That man suffered a terrible trauma early in his life when his father was assonated. We see now how he developed and worked himself into a powerful position.  Unless you are willing to take some advice or  are willing to use a few of the known methods of starting on a path to better health then not many of us on this Celiac Forum will be able to join you in a continuing series of complaints about medical advisors.    I am almost 90 years old. I am strictly gluten free. I use 2 herbs to help me stay as clear minded as possible. You are not wrong in complaining about medical practitioners. You might be more effective with a clearer mind, less anger and a more comfortable life if you would just try some of the suggestions offered by our fellow celiac volunteers.  
    • Jmartes71
      Thus has got to STOP , medical bit believing us! I literally went through 31 years thinking it was just a food allergy as its downplayed by medical if THEY weren't the ones who diagnosed us! Im positive for HLA-DQ2 which is first celiac patient per Iran and Turkey. Here in the States especially in Cali its why do you feel that way? Why do you think your celiac? Your not eating gluten so its something else.Medical caused me depression. I thought I was safe with my former pcp for 25 years considering i thought everything I went through and going through will be available when I get fired again for health. Health not write-ups my health always come back when you're better.Im not and being tossed away at no fault to my own other than shitty genes.I was denied disability because person said he didn't know how to classify me! I said Im celiac, i have ibs, hernia, sciatica, high blood pressure, in constant pain have skin and eye issues and menopause intensified everything. With that my celiac nightmare began to reprove my disregarded disease to a bunch of clowns who think they are my careteam when they said I didn't have...I feel Im still breathing so I can fight this so no body else has to deal with this nightmare. Starting over with " new care team" and waisting more time on why I think I am when diagnosed in 1994 before food eliminated from my diet. P.s everything i went through I did write to medical board, so pretty sure I will continue to have a hard time.
×
×
  • 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.