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 Happenes When You Are "glutened"?


SLB5757

Recommended Posts

nasalady Contributor

I have both neuro and gastric symptoms, and what happens when I've been glutened can vary a bit. My symptoms don't usually start right away, but within 12 to 72 hours later. The only time I knew immediately that I had been glutened my tongue started to tingle then I broke out with canker sores.

Anyway, generally within a day or two after a glutening I have a severe migraine headache, vertigo, hand tremors, diarrhea, stomach cramps and severe bloating, canker sores, gas, peripheral neuropathy, and SERIOUS brain fog!

Brain fog is a real problem for me because I work two jobs, and my part-time job is teaching math at a community college. :blink:


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



Celiac.com Sponsor (A8-M):



ghostcat Newbie

I'm so glad I found this board!!!!! Left side pain.....like a rock or CANNONBALL (perfect description,) in my gut! It got so bad that I developed severe back pain because I was always standing funny to compensate and I'd see pictures of myself out with people and I was hunched over because I remember being in severe pain and trying to hide it. It was hard to just stand......I had to be moving, leaning on something or sitting all the time. What is the exact mechanism of what's going on?

I've never been constipated from it, but it felt like I was rotting inside. It wasn't quite diarreah either, just not digesting anything. Hungry, always. I kept shoving more food in my face to settle my stomach and ginger and green tea.......I'd even buy those little jars of pickled ginger for sushi and just eat them straight or actually chew pieces of raw ginger. My gut just felt rotten. And I was puffy and retaining water, but had to pee all the time because I wanted to empty out my insides so that cannonball would have more room.

So left side pain is common huh? That's so funny because that was why the last doctor I went to wanted to just slap the label diverticulitis on me.....left side pain...who knew?

OptomisticMom - I almost forgot about my biggest symptom (the left sided pressure/pain)!! Glad Im not the only one who has that issue. That has been the one constant throughout and my biggest complaint.
SLB5757 Enthusiast

Ghostcat -

Left sided pain had been my one constant throughout this whole journey. Of course I also have the short stature, brain fog, had a stillbirth child, dental enamel defects, etc. etc etc. But the Left sided pain has been my biggest complaint of all. It gets to the point if I am glutened that I can hardly breathe. It seems like one of the common attributes to Celiac/gluten intolerance - but not being very medically versed - I am not sure why. maybe someone on the boards has a good explanation as to why this happens??

Stacy

Hummingbird4 Explorer

After the few accidental glutenings (that I know of), I had no reaction whatsoever. That's both a good thing and a bad thing! I try to be very careful about what I eat, and I don't take many chances. I rarely eat out in restaurants or at other people's homes, so I feel like I'm doing the right thing and taking this disease very seriously.

ChaiTea Newbie

I usually have no immediate symptoms, but by the next morning, the corners of my mouth are cracked and my tongue is sore. 48 hours later (almost exactly...which makes it pretty easy to pinpoint the problem) I get severe stomach cramps, then diarrhea. That usually lasts about half a day, then a day or so later, I get sore joints and muscles and the rash. The rash usually lasts a week or so but has lasted up to three months and itches like mad.

I'm right in the middle of a reaction now...not sure whether it was the Fixodent I used on my dentures, or a Dove Promises Bananas Foster candy. I was supposed to go see my son who just got home from Cuba, but instead, I'm camped out in the bathroom. I usually don't take ANY chances and don't know why I didn't check both products out thoroughly before trying them. It's not worth it.

linda7276 Newbie

My symptoms are slow and subtle, fluid retention is one of the first things I notice along with slight numbness and tingling in my extremities, bloating, fatigue, bone pain, and the s/s of malabsortion return...will not gross you out with the details...:). I also have unexplained anemia, which I'm hoping that now that I am not doing dairy anymore, that that will clear up too. Quitting gluten was not enough to stop that. I quit gluten, soy, dairy and only eat occas popcorn. My bone pain stopped when I quit the dairy...though it does return when I've been glutened. It usually takes me about a week now to recover from an incident which I think is an improvement.

Karrin I used to have terrible mind fog...omg...it was ridiculous, now it's almost non existent... :D . In fact, If I start acting like a space cadet it's the first thing I question. And nasalady I used to have hand tremors too...my son has that but he won't listen to me about gluten...I do not have tremors anymore. My family all reacts neurologically to gluten.

Karrin Rookie
My symptoms are slow and subtle, fluid retention is one of the first things I notice along with slight numbness and tingling in my extremities, bloating, fatigue, bone pain, and the s/s of malabsortion return...will not gross you out with the details...:). I also have unexplained anemia, which I'm hoping that now that I am not doing dairy anymore, that that will clear up too. Quitting gluten was not enough to stop that. I quit gluten, soy, dairy and only eat occas popcorn. My bone pain stopped when I quit the dairy...though it does return when I've been glutened. It usually takes me about a week now to recover from an incident which I think is an improvement.

Karrin I used to have terrible mind fog...omg...it was ridiculous, now it's almost non existent... :D . In fact, If I start acting like a space cadet it's the first thing I question. And nasalady I used to have hand tremors too...my son has that but he won't listen to me about gluten...I do not have tremors anymore. My family all reacts neurologically to gluten.

I get twitches in my hands! I never would have put that to eating gluten, but it makes sense. Occasionally, when I hold something, my hands shake really bad. My father saw it once and told me I was turning into an old woman (not far from the truth some days).


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



Celiac.com Sponsor (A8-M):



linda7276 Newbie
I get twitches in my hands! I never would have put that to eating gluten, but it makes sense. Occasionally, when I hold something, my hands shake really bad. My father saw it once and told me I was turning into an old woman (not far from the truth some days).

It's amazing how varied the symptoms of gluten sensitivity are, this is part of why it's difficult for some people to realize that it's their problem, they think if they don't have the same symptoms as you or I, then they don't have a problem with gluten, but we all know that gluten affects us all is some similar ways, but also in many not so typical ways...and it's different for everyone, and what makes it even worse is that some people have no symptoms, and are being seriously damaged, but don't have a clue. Gluten is poison....period.

betsb90 Newbie

hey everyone. I'm relieved to know I'm not the only one experiencing all these symptoms and it seems like I'm on the right track by eliminating gluten and dairy from my diet. I know a couple people have mentioned red bumps or breakouts as part of a gluten reaction, but I've been noticing that the skin on my arms and legs is covered in fleshcolored bumps that look like the texture of a basketball (sort of like goosebumps, but I'm not cold). I was just wondering if anyone else had experienced this or if it might be unrelated.

Ariauna Apprentice
When I first was diagnosed (5 years ago), I would get sick within 10 minutes of eating gluten. Which made it easy to figure out where I slipped up as I was just learning. But, after I was gluten free for a long time, the symptoms took longer to show. Like sometimes an hour. Now if I get accidentaly gluten, I get severe (and I mean severe) heartburn. Then the day after, the neurological problems kick in. I stagger around like I am drunk, hit the walls, because I can't judge the distance and wind up with a black and blue body. I have even fractured my arm during one of these episodes. I have had them last from a week to 3 months. So, for me, the recovery time depends on how much gluten I have accidently ingested. The neuro problem that lasted 3 months, was from one pill that was suppose to be gluten free.

I am so sorry that you got glutened Patty. May you feel a lot better real soon.

I've been gluten-free for about 3 months now and have been cc'd and just made a bad decision and not read a label. Within 30 minutes to 2 hours after I eat gluten my upper stomach starts twisting against my ribs the pain is just horrible and makes me feel like puking (although I don't I thenbecause I immediately pop a Bentyl), then my bowels start rumbling, twisting and just horribly cramp up on me. I end up in the bathroom with "D" usually 4 or 5 times in the first 4 hours until the Bentyl starts to work. Then for the next 36 hours I face bloating, gas and pain on my left side. Usually about 30 hours later I am able to start an intake of very bland foods and by the 4th day I am back to my gluten-free normal diet. Then for up to 7 days I face severe fatigue as in I can barely make it up and down the stairs it just feels as if my muscles have shut down, that along with muscle tremors in my hands and calves and an intense irritability, I really have to think before I speak and react to things during that time.

Archived

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

  • 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. - Mari replied to Jmartes71's topic in Related Issues & Disorders
      15

      My only proof

    2. - Rejoicephd commented on Jefferson Adams's article in Gluten-Free Cooking
      1

      Your Complete Gluten-Free Thanksgiving Plan: Recipes, Tips & Holiday Favorites

    3. - marion wheaton replied to marion wheaton's topic in Gluten-Free Foods, Products, Shopping & Medications
      3

      Are Lindt chocolate balls gluten free?

    4. - trents replied to marion wheaton's topic in Gluten-Free Foods, Products, Shopping & Medications
      3

      Are Lindt chocolate balls gluten free?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,417
    • Most Online (within 30 mins)
      7,748

    Idontknowu
    Newest Member
    Idontknowu
    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

    • Mari
      Years  ago a friend and I drove north into Canada hoping to find a ski resort open in late spring,We were in my VW and found a small ski area near a small town and started up this gravelled road up a mountain. We  got about halfway up and got stuck in the mud. We tried everything we could think of but an hour later we were still stuck. Finally a pickup came down the road, laughed at our situation, then pulled the VW free of the mud. We followed him back to the ski area where where he started up the rope ski lift and we had an enjoyable hour of skiing and gave us a shot of aquavit  before we left.It was a great rescue.  In some ways this reminds me of your situation. You are waiting for a rescue and you have chosen medical practitioners to do it now or as soon as possible. As you have found out the med. experts have not learned how to help you. You face years of continuing to feel horrible, frustrated searching for your rescuer to save you. You can break away from from this pattern of thinking and you have begun breaking  away by using some herbs and supplements from doTerra. Now you can start trying some of the suggestions thatother Celiacs have written to your original posts.  You live with other people who eat gluten foods. Cross contamination is very possible. Are you sure that their food is completely separate from their food. It  is not only the gluten grains you need to avoid (wheat, barley, rye) but possibly oats, cows milk also. Whenever you fall back into that angry and frustrated way of thinking get up and walk around for a whild. You will learn ways to break that way of thinking about your problems.  Best wishes for your future. May you enjpy a better life.  
    • marion wheaton
      Thanks for responding. I researched further and Lindt Lindor chocolate balls do contain barely malt powder which contains gluten. I was surprised at all of the conflicting information I found when I checked online.
    • trents
      @BlessedinBoston, it is possible that in Canada the product in question is formulated differently than in the USA or at least processed in in a facility that precludes cross contamination. I assume from your user name that you are in the USA. And it is also possible that the product meets the FDA requirement of not more than 20ppm of gluten but you are a super sensitive celiac for whom that standard is insufficient. 
    • BlessedinBoston
      No,Lindt is not gluten free no matter what they say on their website. I found out the hard way when I was newly diagnosed in 2000. At that time the Lindt truffles were just becoming popular and were only sold in small specialty shops at the mall. You couldn't buy them in any stores like today and I was obsessed with them 😁. Took me a while to get around to checking them and was heartbroken when I saw they were absolutely not gluten free 😔. Felt the same when I realized Twizzlers weren't either. Took me a while to get my diet on order after being diagnosed. I was diagnosed with small bowel non Hodgkins lymphoma at the same time. So it was a very stressful time to say the least. Hope this helps 😁.
    • knitty kitty
      @Jmartes71, I understand your frustration and anger.  I've been in a similar situation where no doctor took me seriously, accused me of making things up, and eventually sent me home to suffer alone.   My doctors did not recognize nutritional deficiencies.  Doctors are trained in medical learning institutions that are funded by pharmaceutical companies.  They are taught which medications cover up which symptoms.  Doctors are required to take twenty  hours of nutritional education in seven years of medical training.  (They can earn nine hours in Nutrition by taking a three day weekend seminar.)  They are taught nutritional deficiencies are passe' and don't happen in our well fed Western society any more.  In Celiac Disease, the autoimmune response and inflammation affects the absorption of ALL the essential vitamins and minerals.  Correcting nutritional deficiencies caused by malabsorption is essential!  I begged my doctor to check my Vitamin D level, which he did only after making sure my insurance would cover it.  When my Vitamin D came back extremely low, my doctor was very surprised, but refused to test for further nutritional deficiencies because he "couldn't make money prescribing vitamins.". I believe it was beyond his knowledge, so he blamed me for making stuff up, and stormed out of the exam room.  I had studied Nutrition before earning a degree in Microbiology.  I switched because I was curious what vitamins from our food were doing in our bodies.  Vitamins are substances that our bodies cannot manufacture, so we must ingest them every day.  Without them, our bodies cannot manufacture life sustaining enzymes and we sicken and die.   At home alone, I could feel myself dying.  It's an unnerving feeling, to say the least, and, so, with nothing left to lose, I relied in my education in nutrition.  My symptoms of Thiamine deficiency were the worst, so I began taking high dose Thiamine.  I had health improvement within an hour.  It was magical.  I continued taking high dose thiamine with a B Complex, magnesium. and other essential nutrients.  The health improvements continued for months.  High doses of thiamine are required to correct a thiamine deficiency because thiamine affects every cell and mitochondria in our bodies.    A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function.  The cerebellum of the brain is most affected.  The cerebellum controls things we don't have to consciously have to think about, like digestion, balance, breathing, blood pressure, heart rate, hormone regulation, and many more.  Thiamine is absorbed from the digestive tract and sent to the most important organs like the brain and the heart.  This leaves the digestive tract depleted of Thiamine and symptoms of Gastrointestinal Beriberi, a thiamine deficiency localized in the digestive system, begin to appear.  Symptoms of Gastrointestinal Beriberi include anxiety, depression, chronic fatigue, headaches, Gerd, acid reflux, gas, slow stomach emptying, gastroparesis, bloating, diarrhea and/or constipation, incontinence, abdominal pain, IBS,  SIBO, POTS, high blood pressure, heart rate changes like tachycardia, difficulty swallowing, Barrett's Esophagus, peripheral neuropathy, and more. Doctors are only taught about thiamine deficiency in alcoholism and look for the classic triad of symptoms (changes in gait, mental function, and nystagmus) but fail to realize that gastrointestinal symptoms can precede these symptoms by months.  All three classic triad of symptoms only appear in fifteen percent of patients, with most patients being diagnosed with thiamine deficiency post mortem.  I had all three but swore I didn't drink, so I was dismissed as "crazy" and sent home to die basically.   Yes, I understand how frustrating no answers from doctors can be.  I took OTC Thiamine Hydrochloride, and later thiamine in the forms TTFD (tetrahydrofurfuryl disulfide) and Benfotiamine to correct my thiamine deficiency.  I also took magnesium, needed by thiamine to make those life sustaining enzymes.  Thiamine interacts with each of the other B vitamins, so the other B vitamins must be supplemented as well.  Thiamine is safe and nontoxic even in high doses.   A doctor can administer high dose thiamine by IV along with the other B vitamins.  Again, Thiamine is safe and nontoxic even in high doses.  Thiamine should be given if only to rule Gastrointestinal Beriberi out as a cause of your symptoms.  If no improvement, no harm is done. Share the following link with your doctors.  Section Three is especially informative.  They need to be expand their knowledge about Thiamine and nutrition in Celiac Disease.  Ask for an Erythrocyte Transketolace Activity test for thiamine deficiency.  This test is more reliable than a blood test. Thiamine, gastrointestinal beriberi and acetylcholine signaling.  https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/ Best wishes!
×
×
  • 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.