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Why Do I Now Get Sick From Gluten When I Didn't Before Going Gluten Free

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This seems to have gone off topic in a big way. Please limit your replies to those that are responsive to the original poster and her original topic, and are constructive.


Diagnosis by biopsy of practically non-existent villi; gluten-free since July 2000. I was retested five years later and the biopsy was normal. You can beat this disease!

Type 1 (autoimmune) diabetes diagnosed in March 1986

Markham, Ontario (borders on Toronto)

Celiac.com - Celiac Disease Board Moderator since 2007

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But anyhow -back to your original post - your reaction to gluten will likely become more and more severe. Its the way of the world - mine are far worse now than when I was eating it every day. Doh!

HLA DQ8, gluten-free since January 2011

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Nope...I'm just careful. Very careful. :) I was just trying to make the point that this is not something to be taken lightly, or to get after people for taking it too seriously.

And to turn this back to the OP: Honestly I had to intentionally gluten myself one time to really get how serious this is. I was on vacation and I thought...gluten free is just too hard so I let loose a little bit. Then ended up in bed for 3 weeks. I've learned a lot since then, and I really have felt this forum to be more helpful than anything else. I've referred a lot of friends here too.

I believe you're a great mom. Hopefully you won't be turned off from the site. I have been here a long time and I'm telling you the most helpful and caring people responded to your post. I think when babies or kids are involved we just get worried...it's a pretty serious situation.


Thanks for coming back to share your experiences. I know you have worked hard to make things safe for you and your daughter.

( maybe I am a tad paranoid about the use of the word "paranoid" on the forum sometimes :lol: )

All the best,


"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014


Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif

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no one can judge anyone, i am like u i dont believe the doctors untill i see it for my own eyes, i am sure now u r convinced that you really have celiac, when my son was diagnosed i put him on a strict diet for about 2 months he changed dramatically over that period, but i was still not convinced i thought to my self maybe it is a coincidence so it was birthday and everyone was eating cake, if i would have known that they were going to do me a beirthday party i would have got him his special cake but i didnt know, so everyone was eating cake and he was nagging(he was 2.5 then) so i said to my self what is the worst thing that can happen so i gave him a piece of cake, about one hour later he started crying adn throwing up, ii called the doctor he said that becasue his digestive system was healed and suddenly he ate somethign that triggered it, but before it was already damaged so no more damage was being done that is why every once in a while he would throw up not every time he ate gluten

for those who had bad criticism for what you did i tell them that i would rather get my son exposed to gluten and see the reaction with my own eyes than him be diagnosed by the doctor with celiac and i am not convinced, at least now i make 100000% sure that my son's environment is gluten free

and i am sure that now after u saw your reactions you are going to do the same thing... good luck with your pregnancy

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It's difficult to remain gluten free as we all know and I don't think it is unusual to experiment with gluten to see h ow gluten does effect our bodies. We did.

I am the mom of a teen who had positive DGP IGA and IGG but neg biopsy and genes. Initially I was told celiac and immediately had her gluten free. However, she was still sick and we found a long standing severe sinus infection where her sinus could not drain. She had surgery where they rebuilt sinus and drained it. Long story short she came home from surgery crying in joy as to how good she felt, not too long after that met with GI who said it wasn't celiac. So we slowly added gluten back into diet for a myriad of reasons and all was well for months. About six months later she started getting chronically sick again and has since gone back gluten free but is still ill while we search for a resolution to her current health problems.

And by the way, before she went gluten free a year ago I was noticing that eating pizza was making her sick but I never put two and two together. No other food would create the same feeling of illness. I found it odd and still do.

I wish you the best of luck!

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I agree that is difficult at the begining but after some time you get used to it. Every time you reintroduce gluten to your diet you will get worst reaction than the time before. This is because your body cleaned up itself from toxicity and it started to heal itself. But still not everyone has the same reaction. I am an extreme case and i know not everyone is. Still if you are celiac we are having a same kind of war going on in our bodies and you need to avoid gluten to make it stop.

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I have read all of the posts, including JulieAC initial post, and I am thankful for ALL of the replies, even the seemingly harsh ones.


I typed into Google, "why do I get sick from gluten when I didn't before" and this popped up. You see, I have been gluten free since September 2012 mainly because my 'Angels, God/Love, Spirit" told me to 'STOP EATING WHEAT' when I truly thought I had stomach cancer.


I'd been in constant pain for nearly 2 years and it culminated in September when I looked about 8 months pregnant (which by the way is IMPOSSIBLE since I had a hysterectomy from cervical cancer at age 21). I was certain I had intestinal cancer and had been to the doctor and received an order to have a plethora of tests. That was on a Friday, on Saturday morning in meditation I heard CLEARLY, "stop eating wheat" and I KNEW I needed to be gluten free. That was the first time I found Celiac.org as I had NO IDEA what being gluten free would entail. I also had NO idea how much gluten showed up in EVERYTHING I had been eating. I mean, barley (in my Teeccino), wheat (obviously in EVERYTHING), malt (do you KNOW how upset I feel that I can NEVER again have a malted milkshake??) and rye... Seriously, is there anywhere that Doesn't have gluten?


So I came here to find out what to do. I was grateful to find recipes, and information about a gluten free lifestyle. Then the test came back NEGATIVE for Celiac. However since being gluten free I was already feeling 1000% better and KNEW to listen to Spirit over doctors anyday, so I maintained a strict gluten free diet.


Then, Saturday night, I was at a work dinner banquet (you know dressing up and all) and I took a BIG FORK FULL of what I THOUGHT was Rice. Turned out to be Israeli Couscous (which is FULL of gluten). Now, I KNEW immediately that this was not rice when I put it in my mouth, and being a high profile person in the organization I didn't want to spit out the food in my napkin, so I reluctantly ate it. I kept thinking 'well, at least I don't have Celiac, and I am just sensitive to gluten so it ought not be a big deal right?' HA! WRONG!!


Within about 20 minutes I started feeling pains in my stomach, then feeling nauseous, and the longer I sat there the worse the pains got. I finally had to leave the banquet early and go home. I felt ill all night, and the next morning (which by the way I had to be at WORK by 6am) I was bloated, experiencing diarreaha, and feeling still nauseated. I worked until about 3pm and when I got home had the WORST pains and diarrhea that I remember having since I had food poisioning over 4 years ago (which actually I DID have food poisioning, gluten is now poison to my body). I started feeling better last night and then today have been exhausted and not even able to get out of bed.


So I wondered, am I the ONLY one who has had this experience? When I Googled the question and found the forum I felt relieved. My sister kept trying to say 'it's all in your head, you can't be that sick from just a little gluten and you're blowing it way out of proportion'. I YELLED back, 'You have NO idea what you're talking about, and I hope you NEVER have to experience what I just did'


I would also offer that to ANYONE reading these posts. Even though I do not have 'diagnosed Celiac', I cannot eat gluten (don't even get me started on GMO's). The fact that I don't have a medical diagnosis does NOT make my symptoms or body behave any differently. Gluten makes me sick, and I now know I cannot eat it, at all.


So what's next? What happens the next time I unknowingly eat pasta, or something with wheat? Well I'll tell you one thing, banquet, wedding or Oscars, I'll be spitting it right out into the napkin!


Thank you ALL for your loving support of this community!

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I think your body is actually recovering, so you get a stronger reaction.  Once upon a time, your body was overwhelmed with gluten continuously.  Now, sometimes it is over it, so it becomes easier for your body to send out warnings.  Symptoms are a really good detterent and I am glad for mine.



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Hi GL,


Welcome to the forum! :)


NCGI is being researched now, but we don't know the full story yet.  How it affects the gut damage wise in the long term is not known.  How it affects the whole body in the long term is not known.  They do think it involves an immune system reaction, but it it the innate immune system instead of the adaptive immune system.  That doesn't mean it isn't a bad thing for people's guts.  We just don't know the details yet.


Helpful threads:

FAQ Celiac com

Newbie Info 101


NCGI info:


Non-celiac wheat sensitivity article

Innate immune response in AI diseases


Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."

Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.

Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, eggplant, celery, strawberries, pistachios, and hard work. Have a good day! 🙂 Paul

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