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      READ FIRST: Super Sensitive Celiacs Disclaimer   09/23/2015

      This section of the forum is devoted to those who have responses to gluten beyond the experience of the majority of celiacs. It should not be construed as representative of the symptoms you are likely to encounter or precautions you need to take. Only those with extreme reactions need go to the lengths discussed here. Many people with newly diagnosed celiac disease have a condition known as leaky gut syndrome, which can lead to the development of sensitivity to other foods until the gut is healed - which may take as long as one to three years. At that time they are often able to reincorporate into their diet foods to which they have formerly been sensitive. Leaky gut syndrome leads many people to believe they are being exposed to gluten when they are in fact reacting to other foods.
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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

What's The Normal Reaction To Eating Gluten After Being gluten-free Celiac For Almost Two Years
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11 posts in this topic

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?

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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.  

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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

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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.

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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! 

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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...

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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?

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

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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.

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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?

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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.

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