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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 Celiac.com's FREE weekly eNewsletter   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

How Soon After Gluten Do You React?
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Is it always instantly??

I made a stupid mistake last night and ate some tastee sandwiches, well just the meat, no bread. My grandma thought they were fine, well after this morning I am thinking they were not. I looked up the recipe and there was liption onion soup mix, which pretty positive that is not okay if that is the recipe they used. Guess I can't assume anything, lesson learned.

I've been going to the bathroom a lot, stomach cramps, and joint pain....probably gluten, huh?? I didn't know if it had soy sauce (allergic to soy), but I don't think so.

I was just curious, I am usually VERY careful.....how long does it last for you??

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Is it always instantly??

I made a stupid mistake last night and ate some tastee sandwiches, well just the meat, no bread. My grandma thought they were fine, well after this morning I am thinking they were not. I looked up the recipe and there was liption onion soup mix, which pretty positive that is not okay if that is the recipe they used. Guess I can't assume anything, lesson learned.

I've been going to the bathroom a lot, stomach cramps, and joint pain....probably gluten, huh?? I didn't know if it had soy sauce (allergic to soy), but I don't think so.

I was just curious, I am usually VERY careful.....how long does it last for you??

I'm sorry about the glutening. It's always an awful mistake. I get primarily neuro reactions starting 45 minutes after ingestion. It peaks at days 2 and 3 then gets tolerable by day 5-6. I still feel poorly for 2+ weeks, but it's manageable. I hope you are feeling better soon and just remember that the potty problems are helping to rid that poison from your system. I wish I had a magic cure for getting rid of the symptoms. Oh, how I wish that.

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It seems like since going gluten free my stomach issues are pretty minor. I tend to go into a brain fog and my joints flare up pretty much right away. Sometimes I'll get nauseous even as I'm eating...cue to stop eating right now...The brain fog and joint pain can last a couple of days or more. Usually the nauseous stomach goes away in 2 to 4 hours. I hope your symptoms clear very quickly.

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It depends, I got glutened at the beach but it was all CC and took 2 days to get REALLY sick. Other times I have been sick within 2 hours of eating it.

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I ate artificial bacon bits a couple of weeks back (not knowing that they are wheat based) and reacted within the hour of ingestion... actually I felt sick while I was eating the salad, but I was so hungry that I just ignored all the warnings signs... is it normal to react that fast? I hadn't been gluten free for very long - gluten reduced for a couple of months, but only completely gluten free for a couple of weeks...

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I think I got glutened today at a wedding. I only had fruit, and some salami-type roll up things for appetizers. Dinner was a salad (it did have croutons mixed in, but I didn't eat them), potatoes and chicken. It was probably the croutons and the little bit of sauce the chicken had. I've only been dx'd for a month and this was my first event I had been to that I had not control over. Guess my lesson was learned the hard way, because even though we ate about 3 hours ago, I am just now starting to feel awful. Bed, here I come.

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I think I got glutened today at a wedding. I only had fruit, and some salami-type roll up things for appetizers. Dinner was a salad (it did have croutons mixed in, but I didn't eat them), potatoes and chicken. It was probably the croutons and the little bit of sauce the chicken had. I've only been dx'd for a month and this was my first event I had been to that I had not control over. Guess my lesson was learned the hard way, because even though we ate about 3 hours ago, I am just now starting to feel awful. Bed, here I come.

So sorry you got glutened. Weddings are hard.... but yes, definitely if something has croutons mixed in it's a no-no whether you eat the croutons or not. Also unidentified sauces are really dangerous. But we have to have these learning experiences to teach us what to avoid in the future. Sauces and marinades will get you most often, also processed foods with 'natural flavourings' although they're supposed to label wheat on packages, but they can also put them in wedding banquet stuff too!

It does get easier. This has been a good learning experience, and you are gamer than I was -- I didn't tackle something like this for more than a year :P

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Interesting....my joint pain is def better, but my stomach systems are still going, but I am sure that is my body detoxing.

So the longer you are gluten free does that mean the worse your reaction will have?? I haven't been gluten-free a terribly long time, just was thinking about that.

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I usually don't have reactions until the next day. Then it is 3 or so days for the neuro symptoms and aches to go away. The gut symptoms go away usually in about 6 hrs. But it depends how much I was eating at the same time and what exactly it was I was eating. At least this far.

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For me it seems to depend on what I've eaten recently, and what it is that's glutenous.

If it's a drink, it's pretty much immediate (maybe a 10-15 minute delay at most). If it's food, almost always between the 3 and 4 hour marks. Even my boyfriend will occasionally shout "horray!!" when it's been 4 hours since I've eaten something questionable, and have yet to rush to the bathroom.

-Aeva

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I know within about 20 minutes.

FYI Lipton onion soup is gluten free as far as I know. Do a search for it on here. It used to have gluten if I remember correctly.

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FYI Lipton onion soup is gluten free as far as I know. Do a search for it on here. It used to have gluten if I remember correctly.

We've got to watch those boxes of Lipton onion soup. I just grabbed one at the store one day, which was in the dept. with all the other soups and it has autolyzed yeast extract (barley) in the ingredient list. Strangely the next box I bought at another store doesn't have that in it. The boxes look identical. Even though I buy a product I've used safely before, I always re-read the ingredient list of any product before I actually use it.

Had it been an expensive product, I would have returned it. Since it's not, it'll go in my donate bag for when the Boy Scouts have their food drive before Thanksgiving.

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Mine seem to be coming on faster now that I've been gluten-free for a while (8 months). I took an accidental direct hit a couple of weeks ago eating Thai food in Japan- I ordered what was supposed to have been a safe green curry over rice, but it's entirely possible that wheat starch or flour was used to thicken the sauce or bread the chicken- HUGE language barrier and not particularly good service (not food poisoning as the husband ate some of my food). I was starting to feel "off" before we even left the restaurant. I had a headache within the hour and was dry heaving within two hours. I managed to CC myself yesterday on some candy (wrapped Snickers Minis, which apparently have a high risk of CC- wish I'd known before I started eating them). I felt "off" within a few minutes and sure enough, I had a headache all afternoon and evening- one of those unpleasant, shaky, nauseated ones that I only get with gluten.

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This is interesting because I had some smoked brisket last night at a friends house. Her dad cooked it on a brand new grill, her mom has celiac so he has learned how to work around it. There was food with gluten in it around but I only had the meat. Today my stomach is upset but that's all I have right now. Also, her mom drank a beer, I almost fell over! I was like "Um...you do know that's going to make your DH show up, right? It's a HUGE nono!" and she just looked at me and said "yeah, I jsut feel like being a little crazy tonight". Um, fine, you kill your intestines, I'll be over here. Also, I was a little jealous. I can't help but think how much easier my life would be if I was either asymptomatic or only had DH. Instead I have to agonize over what I eat, sauces, and deal with a husband deployed. It's so tiring sometimes.

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K8ling, actually we're the ones who have it easier in the long run. We have major incentive not to eat gluten. Thus, our guts can actually heal and we can recover. If we were asymptomatic, we'd probably be fine with cheating every so often, destroying our health slowly without even realizing it, then getting sick with any one of several more severe, less controllable, possibly fatal diseases.

Not that it doesn't suck sometimes to have to turn down that nice, cold hoppy beer or yummy cookie. But I think in the long run it will suck less for us than it will for someone asymptomatic who won't stick to the diet.

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I respectfully reserve the right to change my response upon further data collection in my food journal. :P

Until such time- I'll have to say:

Depending on either the type of gluten ingested or the amount (although I have not narrowed this to an exact science)- vomiting before the meal is over OR D within one hour of the meal lasting for several days. Vomiting is followed by D later in the day and lasts for several days.

GERD, acid reflux and chest pains within an hour or two- last for days/weeks.

Skin rash flare ups within a day and seem to last forever.

Exhaustion is immediate and lasts for days. Brain fog too.

Body aches and pains within a day and last for 3-4 days.

Depression hits around Day 2 to 3.

And people wonder why I don't want to allow any gluten in my home. B)

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Hello, I am new to the forum.  I was diagnosed with temporal lobe epilepsy last November, and discovered gluten intolerance in December.  Basically I've been gluten free since then (I am not celiac), and saw great changes--gone my constant morning diarrhea, gone my muscle aches and pains, gone my persistent headaches.  And best of all, no more seizures!  My doctor was not convinced that gluten was the trigger, but agreed to give me a 6 month trial meds free, and this Monday morning I awoke, panicked, because all of the symptoms were back (5 a.m.).  Thought, I will have to call her and get on meds, I guess--partial seizure  (at least not generalized this time!), shakes, vomiting, the works!  Then my husband reminded me that we had eaten tabouleh, which I thought was made with quinoa.  WRONG--bulgar wheat, and I only had 3 tablespoons.  I have been better, after a day of migraine, followed by nausea and stuffiness.  Today I have muscle and joint pain, which I haven't had since December. So that is a delayed reaction, I guess.  Sigh.  At least it confirms my suspicions.

Aseneth

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It depends, I got glutened at the beach but it was all CC and took 2 days to get REALLY sick. Other times I have been sick within 2 hours of eating it.

K8tling, how do you know that it was cc at the beach, and not something after -- i ask because I'm still pretty new to this and this is the part I find confusing.  How will I know if/what 'got' me.

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K8tling, how do you know that it was cc at the beach, and not something after -- i ask because I'm still pretty new to this and this is the part I find confusing.  How will I know if/what 'got' me.

This post was on a 2 year old thread. Not sure K8 is still on.

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Hello, I am new to the forum.  I was diagnosed with temporal lobe epilepsy last November, and discovered gluten intolerance in December.  Basically I've been gluten free since then (I am not celiac), and saw great changes--gone my constant morning diarrhea, gone my muscle aches and pains, gone my persistent headaches.  And best of all, no more seizures!  My doctor was not convinced that gluten was the trigger, but agreed to give me a 6 month trial meds free, and this Monday morning I awoke, panicked, because all of the symptoms were back (5 a.m.).  Thought, I will have to call her and get on meds, I guess--partial seizure  (at least not generalized this time!), shakes, vomiting, the works!  Then my husband reminded me that we had eaten tabouleh, which I thought was made with quinoa.  WRONG--bulgar wheat, and I only had 3 tablespoons.  I have been better, after a day of migraine, followed by nausea and stuffiness.  Today I have muscle and joint pain, which I haven't had since December. So that is a delayed reaction, I guess.  Sigh.  At least it confirms my suspicions.

Aseneth

Are you sure you are intolerant and not celiac?  

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For me, generally I have symptoms in 12 to 24 hours if its gluten, and usually feel really crummy for 2-3 days, and semi crummy at days 4-5 ...and then pretty much back to good again. 

 

Something to remember and think about is that if you react to something immediately to within 2-3 hours at the outside, it is generally an allergic reaction, not an intolerance. So if you're reacting to something that fast, you might want to see an allergist. Lots of people don't really understand the differences between allergies and intolerances. If you have both, you should learn the differences to help you identify what's going on with you.

 

 I have Celiac, along with intolerance to dairy of any sort, and multiple food allergies, andwith the allergies, I react very fast (immediately to within 2 hours). If I get glutened, 12-24 hours have passed, before I notice it...and then I REALLY notice it! :( Its not fun for the next  5-6 days. Hope this helps a little.

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My head starts feeling swimmy before I finish the meal and 45mins later I'm in the bathroom with bad stomach pains, it effects pretty bad with head aches and fatigue for a couple days. I haven't been gluten-free for very long so I can't answer how it changes over time sorry but I'm sure you will always have a reaction of some sort and it probably depends in how much you ingest.

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