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 Glutened Symptoms?

Rick-O-Shay

By Rick-O-Shay
in Coping with Celiac Disease

  

32 members have voted

You do not have permission to vote in this poll, or see the poll results. Please sign in or register to vote in this poll.

Recommended Posts

Rick-O-Shay Apprentice
Rick-O-Shay
Posted

I was just curious as to what peoples top complaints were out of these choices.

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

Celiac.com Sponsor (A8-M):


rosetapper23 Explorer
rosetapper23
Posted

I'd like to add joint pain, foggy brain, headache, stuffy nose, puffy eyes, dizziness, and sleeplessness.

beebs Enthusiast
beebs
Posted

And re-occurent chest/Ear infections, mouth and nose ulcers and Intussusception which is by far my worst symptom. Ugh.

AVR1962 Collaborator
AVR1962
Posted

My most troublesome symptom is the dizziness. The bloating and the digestive issues, the brain fog, depression, headche, and being tired leave after 3 days but if I have one grain o gluten I will be constantly dizziness for 3+ weeks and that is not fun!

Ellie84 Apprentice
Ellie84
Posted

My symptoms occur very rapidly: within a few seconds. This is also a mystery to my GI because you'd expect this with an allergy, but an allergy has been ruled out.

Within a few seconds my abdomen starts to swell up to very large proportions, I can go from a flat stomach to 6 months pregnant in less than a minute. This is accompanied by violent burping and gagging. This can last up to an hour in case of serious contamination. When that stage is over I get intestinal cramps, constipation and some sort of tingling sensation in my stomach that's comparable to an itch. Dependent on how much gluten I've had I can also get dizzy and disoriented in such an attack. After a severe case I can be moody, tired and have GI problems for days.

It sounds weird, but because of these symptoms I don't dare to visit restaurants. When you get ill so directly and so graphically it instantly ruins the night out. Not only for us but also for the other diners. People tend to get very worried, even up to the point of calling an ambulance.

Duhlina Apprentice
Duhlina
Posted

Mine are usually mild compared to others. It starts with a headache, which turns into a migraine and then I get fatigued and brain fog along with being bloated/swollen. I don't typically have any gastro issues.

newlifeforme Newbie
newlifeforme
Posted

Brain fog, instant fatigue and a really bad mood were missing!

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

Celiac.com Sponsor (A8-M):


sahm-i-am Apprentice
sahm-i-am
Posted

I would like to add Vomiting to my Nausea vote. Starts 1-2 hours after gluten accident and lasts for 2+ hours, depending on how much gluten I ingested. Then I sleep it off and fine next day. I do worry that the farther away I get from my diagnosis date the worse my symptoms may get. But so far, it just comes quicker, but not any new symptoms.

Celtic Queen Explorer
Celtic Queen
Posted

I'd add depression, brain fog, fatigue, apathy and hair loss.

Jestgar Rising Star
Jestgar
Posted

Mine are usually mild compared to others. It starts with a headache, which turns into a migraine and then I get fatigued and brain fog along with being bloated/swollen. I don't typically have any gastro issues.

Except for the migraine, this is mine too.

ciamarie Rookie
ciamarie
Posted

Brain fog, instant fatigue and a really bad mood were missing!

+1, as well as joint pain (right knee in particular, sometimes elsewhere).

twe0708 Community Regular
twe0708
Posted

It depends...if I just get hit with a little cross contamination then bloating and maybe a little tired. If I was to eat something like a cookie or piece of toast, then I get extremely sick within 45 minutes to an hour. I am shocked at how sick I get from just a cookie or toast and it lasts for a good 4 hours. Throwing up is only during the first hour and maybe on the toilet once or twice. But I feel like I have a bad case of the flu so I am very careful about eating when I go out. I have gone through this 3 times by accident and because of this I never feel the need to cheat!

saintmaybe Collaborator
saintmaybe
Posted

I'd add depression, brain fog, fatigue, apathy and hair loss.

me too, plus migraine! And anxiety.
melikamaui Explorer
melikamaui
Posted

I voted because I have a lot of the GI stuff too. But the worst part for me is the migraines, ataxia and the seizures. I could deal with the stomach stuff but I HATE the neuro symptoms.

Rick-O-Shay Apprentice
Rick-O-Shay
Posted
  • Author

me too, plus migraine! And anxiety.

I have anxiety too. Right now I'm on Klonopin for it. Eventually I would like to ween off after being gluten free for awhile.

Macbre Explorer
Macbre
Posted

I have anxiety too. Right now I'm on Klonopin for it. Eventually I would like to ween off after being gluten free for awhile.

Is Klonopin the same as "colozapan" (not sure of spelling)? The reason I ask this is because my mother was on Colozapan for anxiety and she was recently diagnosed with early dementia, but it was being caused by her anxiety med. She was taken off gradually about 2 mths ago and she is back to normal again. Just wanted to give you an fyi just in case it was the same. That is a very strong medicine.

saintmaybe Collaborator
saintmaybe
Posted

I have anxiety too. Right now I'm on Klonopin for it. Eventually I would like to ween off after being gluten free for awhile.

I was on Klonopin, for awhile, but the above poster is right. It turned me into a drugged out zombie. I hated it, and consider myself a drug addict because of it. I'm very bitter because of that experience, and seriously hate psychotherapeutic meds of any kind. I'm still on prozac and topamax, which off label is used for anxiety, but I'm hoping to be off both with a strict gluten free dietand supplementation.

My anxiety became very manageable gluten free. And some anxiety is natural- we celiacs have a serious, potentially fatal disease. We lead a very challenging lifestyle. Not to mention many of the other health challenges we face, plus life's normal ups and downs. I would be surprised if anxiety went *completely* away. You just don't want it to be free floating and disconnected to your circumstances.

Rick-O-Shay Apprentice
Rick-O-Shay
Posted
  • Author

Is Klonopin the same as "colozapan" (not sure of spelling)? The reason I ask this is because my mother was on Colozapan for anxiety and she was recently diagnosed with early dementia, but it was being caused by her anxiety med. She was taken off gradually about 2 mths ago and she is back to normal again. Just wanted to give you an fyi just in case it was the same. That is a very strong medicine.

Hello,

Yes, Clonazapam is the generic for Klonopin, and believe me, I am well aware of the strength of the medication! I have been on it for over a year now. One of the side effects of it is short term memory loss... of course they never tell you that when they prescribe it to you.... I really want to stop. I have tried in the past but even at a taper I start having paradoxial effects. I am on 1 mg. As I go gluten free and I going to begin another taper to see if gluten is the culprit of my anxiety. Do you know the dose and how long of a taper your mom was on? I have a new plan of .125 mg taper per week (which will take 2 months to get off 1 mg!).

Thank you for your concern and information.

These poll results are interesting. Please keep them coming, I'd like to see the results of more people, even if they are not on the listed poll.

love2travel Mentor
love2travel
Posted

I have no idea! When I was diagnosed I had no obvious symptoms at all as I found out through screening. After going strictly gluten free I was tested and my antibodies were in the negative range. My most recent test shows the same which tells me I am not ingesting any gluten. I am super careful. I am so glad I did not get sick but did have miscarriages and have fibromyalgia which are related. It is difficult, though, as it is impossible to know whether I have been glutened or not - I honestly cannot tell whether I have over the past eight months. And I am not about to try something containing gluten to find out!

paulaann15 Newbie
paulaann15
Posted

I never associated some of these things to gluten. I get migraines too but never associated that with gluten. I thought it was from msg.

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. knitty kitty
      - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      @Jane02, I hear you about the kale and collard greens. I don't do dairy and must eat green leafies, too, to get sufficient calcium. I must be very careful because some calcium supplements are made from ground up crustacean shells. When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly. This is safe...
    2. Jane02
      - Jane02 replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency. I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently...
    3. knitty kitty
      - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      Hello, @Jane02, I take Naturewise D 3. It contains olive oil. Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets. Fractionated coconut oil is not the same as coconut oil used for cooking. Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the...
    4. Scott Adams
      0

      Penobscot Bay, Maine: Nurturing Gluten-Free Wellness Retreat with expert celiac dietitian, Melinda Dennis

      until
      Hello! Join me and treat yourself to a four-day, three-night restorative gluten-free retreat in a peaceful, private coastal retreat setting near Penobscot Bay in Maine. Dates: April 10-13, 2026 Enjoy engaging classes...
    5. Scott Adams
      - Scott Adams replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product.
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,335
    • Most Online (within 30 mins)
      7,748
    johnfreirefr
    Newest Member
    johnfreirefr
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • knitty kitty
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By knitty kitty · Posted

      @Jane02, I hear you about the kale and collard greens.  I don't do dairy and must eat green leafies, too, to get sufficient calcium.  I must be very careful because some calcium supplements are made from ground up crustacean shells.  When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly.  This is safe and nontoxic.  Vitamin D level should be above 70 nmol/L.  Lifeguards and indigenous Pacific Islanders typically have levels between 80-100 nmol/L.   Levels lower than this are based on amount needed to prevent disease like rickets and osteomalacia. We need more thiamine when we're physically ill, emotionally and mentally stressed, and if we exercise like an athlete or laborer.  We need more thiamine if we eat a diet high in simple carbohydrates.  For every 500 kcal of carbohydrates, we need 500-1000 mg more of thiamine to process the carbs into energy.  If there's insufficient thiamine the carbs get stored as fat.  Again, recommended levels set for thiamine are based on minimum amounts needed to prevent disease.  This is often not adequate for optimum health, nor sufficient for people with absorption problems such as Celiac disease.  Gluten free processed foods are not enriched with vitamins like their gluten containing counterparts.  Adding a B Complex and additional thiamine improves health for Celiacs.  Thiamine is safe and nontoxic even in high doses.  Thiamine helps the mitochondria in cells to function.  Thiamine interacts with each of the other B vitamins.  They are all water soluble and easily excreted if not needed. Interesting Reading: Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ Safety and effectiveness of vitamin D mega-dose: A systematic review https://pubmed.ncbi.nlm.nih.gov/34857184/ High dose dietary vitamin D allocates surplus calories to muscle and growth instead of fat via modulation of myostatin and leptin signaling https://pubmed.ncbi.nlm.nih.gov/38766160/ Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial https://pubmed.ncbi.nlm.nih.gov/31746327/ Vitamins and Celiac Disease: Beyond Vitamin D https://pmc.ncbi.nlm.nih.gov/articles/PMC11857425/ Investigating the therapeutic potential of tryptophan and vitamin A in modulating immune responses in celiac disease: an experimental study https://pubmed.ncbi.nlm.nih.gov/40178602/ Investigating the Impact of Vitamin A and Amino Acids on Immune Responses in Celiac Disease Patients https://pmc.ncbi.nlm.nih.gov/articles/PMC10814138/
    • Jane02
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Jane02 · Posted

      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
    • knitty kitty
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By knitty kitty · Posted

      Hello, @Jane02,  I take Naturewise D 3.  It contains olive oil.   Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets.  Fractionated coconut oil is not the same as coconut oil used for cooking.  Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the jar, and thus may be irritating to the digestive system. I avoid supplements made with soy because many people with Celiac Disease also react to soy.  Mixed tocopherols, an ingredient in Thornes Vitamin D, may be sourced from soy oil.  Kirkland's has soy on its ingredient list. I avoid things that might contain or be exposed to crustaceans, like Metagenics says on its label.  I have a crustacean/shellfish/fish allergy.  I like Life Extension Bioactive Complete B Complex.  I take additional Thiamine B 1 in the form Benfotiamine which helps the intestines heal, Life Extension MegaBenfotiamine. Thiamine is needed to activate Vitamin D.   Low thiamine can make one feel like they are getting glutened after a meal containing lots of simple carbohydrates like white rice, or processed gluten free foods like cookies and pasta.   It's rare to have a single vitamin deficiency.  The water soluble B Complex vitamins should be supplemented together with additional Thiamine in the form Benfotiamine and Thiamine TTFD (tetrahydrofurfuryl disulfide) to correct subclinical deficiencies that don't show up on blood tests.  These are subclinical deficiencies within organs and tissues.  Blood is a transportation system.  The body will deplete tissues and organs in order to keep a supply of thiamine in the bloodstream going to the brain and heart.   If you're low in Vitamin D, you may well be low in other fat soluble vitamins like Vitamin A and Vitamin K. Have you seen a dietician?
    • Scott Adams
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Scott Adams · Posted

      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product. 
    • trents
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By trents · Posted

      Contact 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.