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.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      127,034
    • Most Online (within 30 mins)
      7,748

    Janna Hyten
    Newest Member
    Janna Hyten
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      69.8k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scott Adams
      Around 5 years ago I visited Tokyo, and luckily had my sister in law with me who is from there, otherwise it would have been more difficult. The bottom line is that there are tons of naturally gluten-free food options there, but you need to be able to communicate your needs to restaurant staff. Here is a gluten-free restaurant card for American visitors in Tokyo. It includes a request for a gluten-free meal and mentions common gluten-containing ingredients to avoid, like soy sauce and miso. English: Thank you. Japanese:   You can also download the Google Translate app, and besides being able to help you speak with people there about this, it has a camera app that translates Japanese text to English in your camera, so you can use it when shopping in a supermarket.
    • Scott Adams
      Be careful about how much B6 you take, as it can cause issues if you take too much of it over time.
    • Scott Adams
      Since it is such a long time away, you may want to have her go gluten-free for 2 months and see how she responds to the diet. If her symptoms go away, then that would be another indicator that she has celiac disease. Discuss this approach with her doctor, and if they want her to do an endoscopy, then she will need to consume lots of gluten--several slices of wheat bread's worth per day, at least two weeks prior to the procedure.
    • Scott Adams
      Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article may be helpful:    
    • Scott Adams
      The one B vitamin that you don't want to take too much of is B6. Too much B9 can also lead to issues.   Vitamins and Minerals Generally Safe in Excess of Recommended Daily Allowance (RDA): Vitamin C (Ascorbic Acid): Excess vitamin C is usually excreted in the urine and is considered safe in higher doses. However, very high doses may cause digestive upset in some individuals. Vitamin B1 (Thiamine): Water-soluble, excess thiamine is generally excreted through urine. It is considered safe in higher doses but consult with a healthcare professional. Vitamin B2 (Riboflavin): Water-soluble, excess riboflavin is excreted in the urine and is generally safe in higher doses. Vitamin B3 (Niacin): Water-soluble, niacin has a well-defined upper limit, but moderate excess is often excreted. Consultation with a healthcare professional is advisable. Vitamin B5 (Pantothenic Acid): Water-soluble, excess pantothenic acid is generally excreted through urine and considered safe in higher doses. Vitamin B7 (Biotin): Water-soluble, excess biotin is typically excreted and is considered safe in higher doses. Vitamin B12 (Cobalamin): Water-soluble, excess B12 is typically excreted in the urine and is considered safe in higher doses. Consultation with a healthcare professional is advisable. Choline: While not a true vitamin, choline is water-soluble, and excess is usually excreted. It's considered safe in higher doses but consult with a healthcare professional.   Vitamins and Minerals with Potential for Toxicity in Excess of Recommended Daily Allowance (RDA): Vitamin A (Retinol): Excessive vitamin A intake, especially from supplements, can lead to toxicity, causing symptoms like nausea, dizziness, and, in severe cases, organ damage. Vitamin B6 (Pyridoxine): Long-term use of high doses of Vitamin B6, typically above 200 mg per day, can lead to toxicity. Symptoms of Vitamin B6 toxicity include nerve damage (neuropathy), which can cause pain, numbness, and difficulty walking. The condition is usually reversible once supplementation is stopped, but in severe cases, nerve damage may be permanent. Vitamin B9 (Folate): The UL for Folic Acid is set at 1,000 mcg (1 mg) per day for adults. This limit primarily applies to synthetic folic acid found in supplements and fortified foods, not naturally occurring folate in food. High intake of folic acid can mask the symptoms of Vitamin B12 deficiency, which can lead to neurological damage if left untreated. This is because folic acid supplementation can correct anemia caused by B12 deficiency without addressing the underlying neurological damage. Some studies suggest that excessive folic acid intake might increase the risk of certain cancers, such as colorectal cancer, particularly in individuals who have precancerous lesions. Vitamin D -  While moderate excess may be excreted, prolonged high doses can lead to vitamin D toxicity, resulting in hypercalcemia, kidney damage, and other complications. Vitamin E (Tocopherols): Excess vitamin E is usually excreted, but high doses from supplements may have adverse effects. Obtaining it through a balanced diet is preferable. Vitamin K: Excess vitamin K from supplements can interfere with blood thinning medications and cause issues in some individuals. Iron: Excessive iron intake, especially from supplements, can lead to iron toxicity, causing symptoms like nausea, abdominal pain, and, in severe cases, organ failure. Zinc: While zinc is essential, excessive intake can lead to zinc toxicity, affecting the immune system and causing digestive issues. Copper: High copper levels, often from supplements, can lead to toxicity, causing symptoms such as nausea, vomiting, and liver damage. Selenium: Excessive selenium intake, especially from supplements, can lead to selenosis, causing symptoms like hair loss, gastrointestinal issues, and neurological problems.
×
×
  • Create New...