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's The Normal Reaction To Eating Gluten After Being gluten-free Celiac For Almost Two Years


Gabybelle

Recommended Posts

Gabybelle Newbie

I have been diagnosed celiac for two years gluten-free since then. Prior to diagnosis I was tired, suffered malaise, diahreah all the time. Since I'm much better unless I've eaten somewhere (restaurants, friends house) and the gluten-free food given to me was either not gluten-free or cross contaminated. I usually react by vomiting a few times and feeling sick and sinister for a few weeks.

Today I did something really stupid. My daughter came in with a bag is cookies. I quickly read the bag and saw "flour free" . I ate one. About an hour later I got dizzy, ears bothered by noise, very agitated and then I began to vomit, usually it's volatile but over quick. This went on for an hour plus non stop. Bile, stomach pains, dizziness, weakness, flush. I asked my daughter to bring me the cookie bag as it was the o my thing I had eaten recently. It said "flour fresh". NOT gluten free. My sister is celiac also and not as careful as I am about cross contamination. They treat me like I'm faking these reactions. Does anyone else react as I do.. Has it gotten worse for u too?


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



Celiac.com Sponsor (A8-M):



dilettantesteph Collaborator

I'm sorry that you got so sick.  I can only tell you that I react to trace gluten more than I used to.  I haven't eaten anything with actual gluten ingredients since I was diagnosed almost 6 years ago.  I hope it doesn't take you too long to get over it.  I am sorry that your family members aren't being more supportive.  Feeling terrible and having people act like you are faking it is pretty awful.  

twe0708 Community Regular

I get very sick too if I eat something containing gluten.  One cookie will make me vomit and put me in bed for 4 to 5 hours.  It's feels like I have the flu.  I think everyone is different but I don't hear of a lot of people having reactions like you and I do.  In a way I am glad I have this type of reaction because I NEVER cheat.  Now if I could only be like this when it come to sweets.   :P

jrohr Newbie

I have been diagnosed celiac for two years gluten-free since then. Prior to diagnosis I was tired, suffered malaise, diahreah all the time. Since I'm much better unless I've eaten somewhere (restaurants, friends house) and the gluten-free food given to me was either not gluten-free or cross contaminated. I usually react by vomiting a few times and feeling sick and sinister for a few weeks.

Today I did something really stupid. My daughter came in with a bag is cookies. I quickly read the bag and saw "flour free" . I ate one. About an hour later I got dizzy, ears bothered by noise, very agitated and then I began to vomit, usually it's volatile but over quick. This went on for an hour plus non stop. Bile, stomach pains, dizziness, weakness, flush. I asked my daughter to bring me the cookie bag as it was the o my thing I had eaten recently. It said "flour fresh". NOT gluten free. My sister is celiac also and not as careful as I am about cross contamination. They treat me like I'm faking these reactions. Does anyone else react as I do.. Has it gotten worse for u too?

I am always worried I will do something similar with some kind of food :unsure: . I have been gluten free for a year. I am also very sensitive to contamination. My reactions are very violent GI symptoms at first and fade away over the course of a week. I get this pain just below my stomach, it really hurts and nothing makes it better but time. Lots of really substantial belching and stomach flu-like symptoms. 

Before I knew gluten was a problem and went gluten free, symptoms were similar, but I don't think it seemed as as painful or that I felt as sick, though I was suffering from severe D when I'd eat anything and lost lots of weight. I just think I was used to it. It's a million times better when I don't have any gluten, but yeah, I think it's tougher now when I encounter any.

  • 1 month later...
Ms.Lisa Newbie

I have been diagnosed celiac for two years gluten-free since then. Prior to diagnosis I was tired, suffered malaise, diahreah all the time. Since I'm much better unless I've eaten somewhere (restaurants, friends house) and the gluten-free food given to me was either not gluten-free or cross contaminated. I usually react by vomiting a few times and feeling sick and sinister for a few weeks.

Today I did something really stupid. My daughter came in with a bag is cookies. I quickly read the bag and saw "flour free" . I ate one. About an hour later I got dizzy, ears bothered by noise, very agitated and then I began to vomit, usually it's volatile but over quick. This went on for an hour plus non stop. Bile, stomach pains, dizziness, weakness, flush. I asked my daughter to bring me the cookie bag as it was the o my thing I had eaten recently. It said "flour fresh". NOT gluten free. My sister is celiac also and not as careful as I am about cross contamination. They treat me like I'm faking these reactions. Does anyone else react as I do.. Has it gotten worse for u too?

Yes, I have the very same reactions.Last week I went to see my doc & every time she tells me "you are way to thin, you have to gain some weight!". So, I came home & started eating gluten food (crossing my fingers for no bad reactions) I had two meals & I went down hard with all the symptoms you have:( I also had a new reaction come up, 1 ulcers in my mouth & 2 on my throat. One of the worst sore throats I have ever had! Now I'm a week into recovering & finally able to get out of bed. YAY!  I will stay thin forever before I do that again! 

  • 3 weeks later...
Stoddybear Newbie

scary. not diagnosed yet but I feel exactly like what I am reading. had dinner last night one glass red wine, a burger on bread, salad with blue cheese. 5 hours later I get sick as a dog. hives, bumps, super red hot skin. starts with upset stomach, then hives start out on butt and spread from head to toe like wildfire. lasts an hour ot two of seriously sick episode. eatdrums itch like crazy. sweats... same thing happened after one blue moon wheat ale on the 4th of July. sometimes feels like my passenger side kidney area is going to explode. how long typically does it take to trigger a reaction? with me I dont know for several hours and its too late. awaiting celiac blood test. think I am bummin...

  • 2 weeks later...
T.H. Community Regular

So sorry your family is not that supportive - sometimes, I think that can be the hardest, when you have celiacs who are NOT as sensitive and they use THAT as a measuring stick against you.

 

My mother-in-law has a celiac friend, who eats out all the time and all she does is ask if they add gluten to anything and avoid that. She takes no care whatsoever about avoiding cross-contamination. When my daughter was diagnosed, she would do things like cut a loaf of bread with a knife on a cutting board, and then brush off the crumbs and cut up some fruit on the same board using the same knife for my daughter. She was furious when my daughter saw her doing it and refused to eat the food because it was contaminated. 

 

My family has four celiacs right now. ALL of us have had symptoms grow worse since we went gluten free, but it's all very different. My father started with getting the runs a little and that was it. He cheated all the time. Then he started getting cramps and the runs, and felt more flush and 'bad' in general and cramps and runs, and now he feels bad enough that he's stopped cheating entirely and is much more careful about eating out. 

 

My brother had nausea and the runs, and he still has it, only it's a bit worse.

 

My daughter had exhaustion and depression. After a couple months or so, she had severe nausea and limbs shaking after getting gluten, a fever spike (who knew?) and a kind of hysterical anxiety thing that would hit a day later. Then this last December, after she hadn't been glutened for over 6 months, she got gluten contamination and was vomiting all night long, was knocked flat like she had influenza, and wasn't able to keep food down more than liquid for a couple more days after that. It was pretty awful.

 

So your reaction? Totally within the realm of possibility.

 

 

I have been diagnosed celiac for two years gluten-free since then. Prior to diagnosis I was tired, suffered malaise, diahreah all the time. Since I'm much better unless I've eaten somewhere (restaurants, friends house) and the gluten-free food given to me was either not gluten-free or cross contaminated. I usually react by vomiting a few times and feeling sick and sinister for a few weeks.

Today I did something really stupid. My daughter came in with a bag is cookies. I quickly read the bag and saw "flour free" . I ate one. About an hour later I got dizzy, ears bothered by noise, very agitated and then I began to vomit, usually it's volatile but over quick. This went on for an hour plus non stop. Bile, stomach pains, dizziness, weakness, flush. I asked my daughter to bring me the cookie bag as it was the o my thing I had eaten recently. It said "flour fresh". NOT gluten free. My sister is celiac also and not as careful as I am about cross contamination. They treat me like I'm faking these reactions. Does anyone else react as I do.. Has it gotten worse for u too?


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



Celiac.com Sponsor (A8-M):



  • 1 month later...
Porcelina Contributor

I react within 24 hours, BUT if its a liquid, its usually while I'm still drinking (ie beer=headache instantly).

  • 2 months later...
RNGayle Enthusiast

Once I was drinking a flavored coffee and started having severe stomach cramping after only a few sips (that's how I discovered flavored coffees are not gluten free). At other times, when I experience cross-contamination, I will have a cluster of canker sores on the roof of my mouth. Oh, I also found out that not all olives are gluten free. I was drinking a vodka martini made with Titos and Vermouth and one olive. I got severely nauseated after drinking one-third of my drink. Of course, I didn't finish it. I didn't even eat the olive. Now, I have my martins with a squeeze of lemon. All fine. Frustrating to have to be so careful. All that to say my reactions are varied, sometimes immediate and sometimes take several hours. Also, I have been gluten free for about 6 months.

dilettantesteph Collaborator

Where did the olive come from?  How could it have contained gluten?  Does it have to do with how they are marinated?  Could it be malt vinegar was used?

RNGayle Enthusiast

Where did the olive come from?  How could it have contained gluten?  Does it have to do with how they are marinated?  Could it be malt vinegar was used?

Funny thing was I thought these were gluten free. The brand was Mezzetta but this particular kind did not say it was gluten free. Their "Martini" olives do say they're gluten free but this kind was not marinated in Vermouth like their Martini olives. Go figure.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,983
    • Most Online (within 30 mins)
      7,748

    CRae
    Newest Member
    CRae
    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

    • Wheatwacked
      @Riley., Welcome to the forum.   It was once believed that Celiac Disease was only a childhood disease and it can be outgrown.  That was before 1951, before gluten was discovered to be cause of Celiac Disease, also called Infantilism.  Back then Cileac Disease was thought to be only a gastro intestinal disease, once you  "outgrew" the colicky phase, you were cured. You were so lucky to be diagnosed at 5 years old so your developing years were normal.  Gluten can affect multiple systems.  The nervous system, your intellegence. The muscules, skeleton. It can cause neurological issues like brain fog, anxiety, and peripheral neuropathy.  It can cause joint pain, muscle weakness, and skin rashes. Epilepsy is 1.8 times more prevalent in patients with celiac disease, compared to the general population. Because through malabsorption and food avoidances, it causes vitamin D and numerouus other essential nutrient deficiencies, it allows allergies, infections, poor growth, stuffy sinuses and eustacian tubes. There is even a catagory of celiac disease called "Silent Celiac".  Any symptoms are explained away as this, that or the other thing. Gluten is one of the most addictive substances we consume.  Activating the Opiod receptors in our cells, it can numb us to the damage that it, and other foods are causing.  It has become socially acceptable to eat foods that make us feel sick.  "There's a pill for that".   It is generally accepted that n fact you are weird if you don't. The hardest part is that if you don't eat gluten you will feel great and think why not.  But slowly it will effect you, you'll be diagnosed with real diseases that you don't have. You'll be more susseptable to other autoimmune diseases.  As you read through the posts here, notice how many are finally dianosed, after years of suffering at older ages.  Is it worth it? I think not. Perhaps this book will help:  Here is a list of possible symptoms:   
    • Riley.
      Hi! Im Riley, 18 years old and have been diagnosed for 13 years.. the testing started bc I stopped growing and didn’t gain any weight and was really small and thin for my age.  I got diagnosed when I was 5 and have been living gluten free since, in elementary and middle school it was hard for me and I kept contaminating myself bc I wanted to fit in with my friends so so badly. I ate gluten secretly at school and mostly regretted it 30 minutes later.  I’ve had symptoms like diarrhea, nausea, headaches, stomachaches, threw up a lot and was really emotional.  In 2022 I really started working on myself and tried to stay gluten free and if I did eat gluten I wouldn’t tell anyone and suffer in silence.  Last year in July I begged my mom to let me „cheat“ one day bc I just wanted to fit in… I ate a lot of different stuff, all the stuff I missed out on in my childhood like nuggets, pizza and all that.. I didn’t have symptoms that day and was doing really fine My mom and I wanted to test how far we can go and said we would test it for 12 weeks to get my blood taken after to see if I’m doing good or if symptoms start showing  As a now 18 year old girl who finally gained a normal weight and doesn’t get symptoms I’m to scared to get tested/my blood taken cuz I finally found comfort in food and it got so much easier for me and my family.  A year and 4 months later i still didn’t get any symptoms and have been eating gluten daily.  I’m scared to get tested/my blood taken cuz what if I’m actually not fine and have to go back to eating gluten free. Any tips to get over that fear and „suck it up“ cuz I know I could seriously damage my body… sorry if I seem like a idiot here… just don’t really know what to do :,)
    • Mari
      There is much helpful 'truth' posted on this forum. Truths about Celiac Disease are based on scientific research and people's experience. Celiac disease is inherited. There are 2 main Celiac 'genes' but they are variations of one gene called HLa - DQ What is inherited when a person inherits one or both of the DQ2 or the DQ8 is a predisposition to develop celiac disease after exposure to a environmental trigger. These 2 versions of the DQ gene are useful in diagnosing  celiac disease but there are about 25 other genes that are known to influence celiac disease so this food intolerance is a multigenic autoimmune disease. So with so many genes involved and each person inheriting a different array of these other genes one person's symptoms may be different than another's symptoms.  so many of these other genes.  I don't think that much research on these other genes as yet. So first I wrote something that seem to tie together celiac disease and migraines.  Then you posted that you had migraines and since you went gluten free they only come back when you are glutened. Then Scott showed an article that reported no connection between migraines and celiac disease, Then Trents wrote that it was possible that celiacs had more migraines  and some believed there was a causal effect. You are each telling the truth as you know it or experienced it.   
    • tiffanygosci
      Another annoying thing about trying to figure this Celiac life out is reading all of the labels and considering every choice. I shop at Aldi every week and have been for years. I was just officially diagnosed Celiac a couple weeks ago this October after my endoscopy. I've been encouraged by my local Aldi in that they have a lot of gluten free products and clearly labeled foods. I usually buy Milagro corn tortillas because they are cheap and are certified. However, I bought a package of Aldi's Pueblo Lindo Yellow Corn Tortillas without looking too closely (I was assuming they were fine... assuming never gets us anywhere good lol) it doesn't list any wheat products and doesn't say it was processed in a facility with wheat. It has a label that it's lactose free (hello, what?? When has dairy ever been in a tortilla?) Just, ugh. If they can add that label then why can't they just say something is gluten free or not? I did eat some of the tortillas and didn't notice any symptoms but I'm just not sure if it's safe. So I'll probably have to let my family eat them and stick with Milagro. There is way too much uncertainty with this but I guess you just have to stick with the clearly labeled products? I am still learning!
    • tiffanygosci
      Thank you all for sharing your experiences! And I am very thankful for that Thanksgiving article, Scott! I will look into it more as I plan my little dinner to bring with on the Holiday I'm also glad a lot of research has been done for Celiac. There's still a lot to learn and discover. And everyone has different symptoms. For me, I get a bad headache right away after eating gluten. Reoccurring migraines and visual disturbances were actually what got my PCP to order a Celiac Panel. I'm glad he did! I feel like when the inflammation hits my body it targets my head, gut, and lower back. I'm still figuring things out but that's what I've noticed after eating gluten! I have been eating gluten-free for almost two months now and haven't had such severe symptoms. I ate a couple accidents along the way but I'm doing a lot better
×
×
  • 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.