Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - cristiana replied to Farralley's topic in Related Issues & Disorders
      3

      Sore mouth lining and Coeliac Disease.

    2. - Ann13 replied to Iris Kraft's topic in Gluten-Free Foods, Products, Shopping & Medications
      19

      Inhaler problem

    3. - Farralley replied to Farralley's topic in Related Issues & Disorders
      3

      Sore mouth lining and Coeliac Disease.

    4. - cristiana replied to Farralley's topic in Related Issues & Disorders
      3

      Sore mouth lining and Coeliac Disease.

    5. - Farralley posted a topic in Related Issues & Disorders
      3

      Sore mouth lining and Coeliac Disease.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      128,849
    • Most Online (within 30 mins)
      7,748

    Patricia D.Jones
    Newest Member
    Patricia D.Jones
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.1k
    • Total Posts
      71.3k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • cristiana
      A pleasure.   It could just be the oats (even pure ones can cause problems for some coeliacs, as I mentioned) but don't be discouraged if that is the issue, as for most of us that passes.  Very odd, really, as before going on a gluten free diet, they had no effect on  me at all!    
    • Ann13
      My POINT trents, was actually related to food more than inhalers causing your issue. My POINT is that even though gluten free food is supposed to not cause a reaction it does and can in some people so think about what you're eating...premade foods labeled gluten free like breads, pastry, cookies....whatever you're consuming....may be causing the reaction. I can't eat any gluten free breads from stores & certain pasta is a no too...others are OK. You may want to eliminate certain foods and see if your problem clears up.  2. Check with the inhaler manufacturer to ensure it's gluten free. Other than those two points if it continues a throat scope by an ENT may be needed to rule out other things. 
    • Farralley
      Thanks Christina.  The Granola products I tried were marked Gluten Free so supposed to be suitable.  I've had many tests done but no results yet but I get the results in next day or so.   I may well have these issues due to deficiencies. Just wanted to get some anecdotal feedback about the issue before I see the GE specialist   If and wwhenI get an answer, I'll post it her. Cheers!! Carmel  
    • cristiana
      Hi @Farralley and welcome to the form I have had soreness, ulcers and also find my tongue and inside my mouth is very sensitive and blisters easily (blood blisters) if I bite something sharp.  Ulcers were a big issue twice before I was diagnosed, the doctors didn't put two and two together and think of coeliac disease, but I had two episodes where I had so many, even eating toast and marmalade made me think I was chewing glass. In your case, what you are describing could well be due to a reaction to cross contamination, or perhaps even a sensitivity to oats?  Are you consuming gluten free oats - i.e. certified pure oats, free from contamination?  You will probably know that coeliacs cannot eat standard oats, they have to be oats that are grown and processed separately from gluten containing grains, and certified as such.  But even then, a small percentage of coeliacs cannot tolerate pure oats, in the short term while they are recovering, or even in the longer term, unfortunately.  It took me eight years before I stopped reacting to even pure oats and now eat them with no issues, but for some a reaction to the protein avenin in oats can be either a temporary or long term issue. Another issue is you may be short of iron or B12 and other B vitamins, which can leave your mouth sore and prone to ulcers.  Have you had these levels tested recently?  If the burning continues, I'd definitely ask your doctors to do another blood test. Lastly - you may have burning mouth syndrome, do have a look into that, which could just be a temporary reaction to something - food, a new toothpaste, reflux? For now, in your shoes I'd probably keep an eye on any recurrences and perhaps keep a food diary to see if there is a pattern.  Have the blood test to check for deficiencies, and try to eat soft, bland food for a few days to help recovery along. Hope this helps, Cristiana  
    • Farralley
      Hi all I was diagnosed wuth Coeliac Disease about 9 months ago after my GP was investigating chronic anaemia. I had an endoscopy and 'total atrophy of the villa' was observed. I have recently had test to check fir other nutrient deficiencies. The test resilts will be shared with me soon during a visit to the Gastro Entrologist.  My concern is a sore mouth lining. I'm not certain but thought that consumption of a gluten free Granola which contained freeze dried berries seems to coincide with the soreness.. it's taken weeks and a range of over-the-counter remedied to reduce the soreness.  I've also been casting around for a remedy and a genuine cause. Perhaps foolishly I  purchased another similar product ( no frozen berries) and my mouth has become a lot sorer almost immediately.  No doubt my doctor will have some ideas. Just wondering if  1. Others had mouth soreness 2. Others had difficulty with gluten-free Granola-like cereal. TThans in advance. Farralley     . 
×
×
  • Create New...