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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 What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

How Long After Being Glutened Do You Feel It?
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icelandgirl    80

I think I've been glutened...but I'm not sure. I've been feeling better daily until today. Had the big D after a week and a half without. Stomach cramping, achy joints, fuzzy head. Awful...tired...etc.

I ate out for the first time on Saturday...felt fine then, Sunday and yesterday. Then today it's awful. Could it take this long? I've looked at everything else I've eaten and prepared myself and I don't see anything. Thanks

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luvs2eat    60

How long have you been gluten free? It seems like people's reactions happen faster when they've been gluten-free for longer periods of time. When I first started eating gluten-free, I made lots of mistakes and never had any symptoms. A few years later, I was glutened and it took about 4 hours for the explosive D to hit. I've been gluten-free for more than 10 years and the last time I was glutened (last year), it was within an hour and incredibly violent as my body simply purged itself for hours and hours from both ends.

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icelandgirl    80

How long have you been gluten free? It seems like people's reactions happen faster when they've been gluten-free for longer periods of time. When I first started eating gluten-free, I made lots of mistakes and never had any symptoms. A few years later, I was glutened and it took about 4 hours for the explosive D to hit. I've been gluten-free for more than 10 years and the last time I was glutened (last year), it was within an hour and incredibly violent as my body simply purged itself for hours and hours from both ends.

It's been about 4 weeks. I feel like I've been so careful.

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CaliSparrow    21

That's awful luvs2eat! I've heard the symptoms can get worse but I am not there yet. Icelandgirl, I've been gluten-free for 15 months. The third and fourth days are the most obvious for me. The first thing it impacts is my ability to think so it sometimes takes the symptoms getting a head of steam for me to realize it's happened. That's unless I try out a restaurant (which is rare) and if I leave really dopey & tired, I know I've been hit. When I don't expect it, I become clueless until the bigger symptoms happen. Also, I have found that stress and lack of sleep can give me some symptoms. Sometimes, I feel generally unwell because the gut hasn't had time to fully heal and sometimes it's because I'm sensitive to a food other than gluten. The first year was hard for me.

I hope you feel better soon!

Cali

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icelandgirl    80

That's awful luvs2eat! I've heard the symptoms can get worse but I am not there yet. Icelandgirl, I've been gluten-free for 15 months. The third and fourth days are the most obvious for me. The first thing it impacts is my ability to think so it sometimes takes the symptoms getting a head of steam for me to realize it's happened. That's unless I try out a restaurant (which is rare) and if I leave really dopey & tired, I know I've been hit. When I don't expect it, I become clueless until the bigger symptoms happen. Also, I have found that stress and lack of sleep can give me some symptoms. Sometimes, I feel generally unwell because the gut hasn't had time to fully heal and sometimes it's because I'm sensitive to a food other than gluten. The first year was hard for me.I hope you feel better soon!Cali

Thanks Cali. Ugh...it feels icky. And it's so disappointing after starting to feel better. I think I'm gonna have to blame it on the restaurant and it took me 2 1/2 days to feel it.

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icelandgirl    80

Just throwing this out there... any chance it's a bug?

I'm not a doctor so I don't know I guess. It feels much more like everything I was feeling before going Gluten-Free. Even my lower left rib cage is sore again and that was going away.

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icelandgirl    80

Looking over everything I've eaten leading up to what I think is glutening I also realized that I had oats for the first time since my diagnosis. They were Bob's Red Mill gluten free. So...The 2 thoughts are either being glutened by Red Robin and feeling it about 48 hours after or the oats and feeling it less than 2 hours after.

Does anyone else have delayed reactions? How long does it take to get better? And is there anything I can do to help it?

Thanks so much for any advice.

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I haven't touched oats since my diagnosis so I can't say for sure whether I could tolerate them.  But both my uncle and my mother have Celiac and neither of them can tolerate oats - even the certified gluten-free ones.  They both react the same to them as they would to wheat or anything else with gluten in it.  (Which is why I haven't gone near them.)

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icelandgirl    80

I haven't touched oats since my diagnosis so I can't say for sure whether I could tolerate them.  But both my uncle and my mother have Celiac and neither of them can tolerate oats - even the certified gluten-free ones.  They both react the same to them as they would to wheat or anything else with gluten in it.  (Which is why I haven't gone near them.)

I really didn't think anything of it. I was making meatloaf and it called for oats and I had gluten free ones. Now I'm suffering.

Have you ever been glutened? What does it feel like? How long does it last? Does anything help? I was feeling so encouraged and this feels like a setback and it's hard emotionally.

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I really didn't think anything of it. I was making meatloaf and it called for oats and I had gluten free ones. Now I'm suffering.

Have you ever been glutened? What does it feel like? How long does it last? Does anything help? I was feeling so encouraged and this feels like a setback and it's hard emotionally.

 

I was glutened once when I took a little tiny taste of tabuli that I got mixed up with another salad.  The tabuli had bulgar wheat in it - and I couldn't have eaten more than about 6 or so tiny pieces of it.  A few hours later I went to bed and shortly afterwards was woken up with chills and cold sweats - like what you get when you come down with the flu or get food-poisoning.  Thankfully I didn't experience any intestinal symptoms and was able to force myself to go back to sleep.  The next day I couldn't concentrate, was still freezing cold, and completely exhausted.  I was tired and "off" for about 5 days and was irritable for a couple weeks or so.  I was so pissed at myself!

Everyone seems to have different reactions though - partially based on how much gluten they actually consume.  Seems like a person's reaction will vary over time too.

Many Celiacs can tolerate gluten-free oats, but some of us can't.  Sorry you had to learn the hard way.

Did you put ketchup on the meatloaf?  I don't think all ketchup is gluten-free either.

 

Edited to add: Forgot to mention, my first sign that I was going to get symptoms was bloating.  Before I went to bed my stomach blew up like a balloon - I swear I looked pregnant.

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icelandgirl    80

I was glutened once when I took a little tiny taste of tabuli that I got mixed up with another salad.  The tabuli had bulgar wheat in it - and I couldn't have eaten more than about 6 or so tiny pieces of it.  A few hours later I went to bed and shortly afterwards was woken up with chills and cold sweats - like what you get when you come down with the flu or get food-poisoning.  Thankfully I didn't experience any intestinal symptoms and was able to force myself to go back to sleep.  The next day I couldn't concentrate, was still freezing cold, and completely exhausted.  I was tired and "off" for about 5 days and was irritable for a couple weeks or so.  I was so pissed at myself!Everyone seems to have different reactions though - partially based on how much gluten they actually consume.  Seems like a person's reaction will vary over time too.Many Celiacs can tolerate gluten-free oats, but some of us can't.  Sorry you had to learn the hard way.Did you put ketchup on the meatloaf?  I don't think all ketchup is gluten-free either. Edited to add: Forgot to mention, my first sign that I was going to get symptoms was bloating.  Before I went to bed my stomach blew up like a balloon - I swear I looked pregnant.

Thanks...I'm bummed. The ketchup was gluten free. So either the oats or red robin. I'm so painfully gassy and constantly burping and uncomfortable and the D. Hopefully it starts to get better soon? I just went and got digestive enzymes since a lot of people on here say those help.

I guess I want to think it was glutening because I don't want to have something else be wrong with me. Between late December and late January I received 4 diagnoses...Uterine polyps, gallbladder polyps, h pylori and celiac. I'm 2 weeks out of gallbladder removal and uterine polyp removal and was really ready to have my life maybe start feeling normal. Sigh.

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notme!    287

I'm not a doctor so I don't know I guess. It feels much more like everything I was feeling before going Gluten-Free. Even my lower left rib cage is sore again and that was going away.

when i get that lower left under the rib cage pain, it is a dead giveaway.  my reaction time is also 2 days - very frustrating!  lolz - and the last time i ate out, it was (ta daaa!)  red robin.  i had eaten there before with no issue, but they got me the second time i tried it.  i start getting a headache and gradually, joint pain, fatigue, the big D, all those lovely symptoms i lived with for years.  annnd for me it takes 14 days to get back to normal.  sorry you got hit - hope you feel better (everybody's duration of symptoms seem to be different, as well...)

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GF Lover    201

I feel it before my dinner is over.  Takes the question work right out of the equation.

 

Colleen

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icelandgirl    80

when i get that lower left under the rib cage pain, it is a dead giveaway.  my reaction time is also 2 days - very frustrating!  lolz - and the last time i ate out, it was (ta daaa!)  red robin.  i had eaten there before with no issue, but they got me the second time i tried it.  i start getting a headache and gradually, joint pain, fatigue, the big D, all those lovely symptoms i lived with for years.  annnd for me it takes 14 days to get back to normal.  sorry you got hit - hope you feel better (everybody's duration of symptoms seem to be different, as well...)

OMG...The rib pain. I hate it. Does anything help with it? It's a constant.

I was so excited to go out to eat...first time since being diagnosed. The waitress was very knowledgeable. And now this...ugh.

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