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What Are Your Glutened Symptoms?

Rick-O-Shay

By Rick-O-Shay
in Coping with Celiac Disease

  

32 members have voted

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

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

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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!

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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.

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    • captaincrab55
      Finding gluten free ingredients

      By captaincrab55 · Posted

      Imemsm, Most of us have experienced discontinued, not currently available or products that suddenly become seasonal.   My biggest fear about relocating from Maryland to Florida 5 years ago, was being able to find gluten-free foods that fit my restricted diet.  I soon found out that the Win Dixie and Publix supper markets actually has 99% of their gluten-free foods tagged, next to the price.  The gluten-free tags opened up a  lot of foods that aren't actually marked gluten-free by the manufacture.  Now I only need to check for my other dietary restrictions.  Where my son lives in New Hartford, New York there's a Hannaford Supermarket that also has a gluten-free tag next to the price tag.  Hopefully you can locate a Supermarket within a reasonable travel distance that you can learn what foods to check out at a Supermarket close to you.  I have dermatitis herpetiformis too and I'm very sensitive to gluten and the three stores I named were very gluten-free friendly.  Good Luck 
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long?   DGP IgG antibodies are produced in response to a partial gluten molecule.  This is different than what tissue transglutaminase antibodies are  produced in response to.   TTg IgA antibodies are produced in the intestines in response to gluten.  The tTg IgA antibodies attack our own cells because a structural component in our cell membranes resembles a part of gluten.  There's a correlation between the level of intestinal damage with the level of tTg antibodies produced.  You are not producing a high number of tTg IgA antibodies, so your level of tissue damage in your intestines is not very bad.  Be thankful.   There may be reasons why you are not producing a high quantity of tTg IgA antibodies.  Consuming ten grams or more of gluten a day for two weeks to two months before blood tests are done is required to get sufficient antibody production and damage to the intestines.  Some undiagnosed people tend to subconsciously avoid lots of gluten.  Cookies and cakes do not contain as much gluten as artisan breads and thick chewy pizza crust.  Anemia, diabetes and thiamine deficiency can affect IgA antibody production as well.   Do you carry genes for Celiac?  They frequently go along with EDS.
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
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      High DGP-A with normal IGA

      By knitty kitty · Posted

      Food and environmental allergies involve IgE antibodies.  IgE antibodies provoke histamine release from mast cells.   Celiac disease is not always visible to the naked eye during endoscopy.  Much of the damage is microscopic and patchy or out of reach of the scope.  Did they take any biopsies of your small intestine for a pathologist to examine?  Were you given a Marsh score? Why do you say you "don't have intestinal damage to correlate with lifelong undiagnosed celiac disease"?   Just curious.  
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