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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.

What Are Your "glutened" Symptoms?
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Chef16    0

My symptoms are pretty much a combination of gut problems. i.e. (starting about 6-8 hours later) horrible D, vomitting every few minutes followed by dry heaves, excruciating intestinal cramps (i like the glass comparison), nausea, weight loss (i'm already under-weight), uncontrolable shivering, ect. So far I haven't found anything that helps during the "attack", although mine only last a few hours. It may depend on the person, but I've found that heat makes me feel worse. Oh, I also get hives all over my legs at the beginning of the reaction.

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ranger    2

My symptoms usually start within an hour of even tiny amounts. It starts with the stomach rumbling, moves to the big D. I also become tired, depressed and get brain fog. It usually lasts about 3 days.

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thleensd    25

Is this 100 or more topic still up somewhere? I've tried using the search function and can't find it... link, anyone? =)

We discussed that question at our celiac support group meeting last night! My symptoms of being 'glutened' are both typical and atypical. I get bloating, gas and excruciating abdominal pain which feels like bits of broken glass are stuck in my intestines. I also get extreme fatigue, but that's easier to handle (with rest) than those excruciating pains. I drink very strong herbal peppermint tea to relax the cramping pains, take hot showers directing the water spray on painful area, or walk. My gluten symptoms can last 7-10 days even after the initial contamination. 2-4 hours after I eat anything I feel pain in the damaged areas. Fortunately I have not been 'glutened' for over a year. My most recent contamination was from dairy (I also have casein and soy intolerances) 2 months ago. You might also enjoy reading the topic "100 (or more) things to do when you're glutened".

BURDEE

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Nic    1
My fairly immediate (within 30 minutes) symptoms are SEVERE brain fog with auras and headaches, pretty bad lethargy. After a few hours, the brain fog fades, but the headaches and flu-ish symptoms really come into play - the Big D. My skin tingles like I have a fever. Throat hurts, head continues pounding. Next day, the DH starts on my thumbs, forefinger and middle finger on my hands. Not the rest of the fingers. Usually symptoms last 3 - 5 days depending on the severity.

Now that I'm truly gluten-free, I feel like I can "see" my reactions a little better than before.

Hi, when you say, "auras" what are you referring to? For about a year now, more so now than ever, I have been getting this wavy vision in the corner of my eyes. It comes on suddenly and last for up to 10 minutes during which I feel completely wiped out. Sometimes it even come on like a whole in my vision. I went to the doctor and they said optical migrains. My son is a Celiac as well as my dad so I obviously carry the gene although I test negative on the celiac panel. I also have severe gas and bloating, moderate stomach aches, and constipation. I am starting to think I should be gluten free.

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ElleReigh    0

Is it bad that reading about other people's horrendous symptoms makes me feel better? I somehow thought I was the only one, even though that it obviously not true. Glad I came across this board!

My symptoms:

-1st is the anxiety/panic attacks

-next is that "I've been run over by a truck" fatigue

-then comes the depression and brain fog, no motivation, inability to concentrate

-insert GI symptoms here, whatever they may be at the time

-next is DH on my fingers and toes within about 1-2 days

-sometimes mouth ulcers

-occasionally hot flashes and heart palpitations

All of this lasts a few weeks, depending on how long I can go before the next one. In the 2 years I've been militantly gluten-free, I think I've gone for two whole weeks once without getting glutened. Vicious cycle, and all I do is become more restrictive. I think I'm getting more sensitive as I go along... Anyone else have that or know of another post that discusses it?!

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bunnybaby    0

I have not been in here for ages as I lost my old PC and my bookmarks with it. I was doing a google search as I have been glutened yesterday and needed to reassure myself.

Your experiences are so helpful. I use Aloe in fact I started selling it (UK). My symptoms are very similar to Rachels and others lists. The pain is so severe that it scares me.

Aloe is a gel from a leaf and so good quality 99% Aloe should be a thick gel that does not taste nice but can be bought mixed with other stuff but best to use the pure stuff mix a bit of juice or honey or something in if you really can't take it any other way.

The liquid ones are good but are diluted or use not just the gel from the leaf but the juice to which makes it less effective.

Thanks again, it is helpful to read others experience. I had never had nausea like this time before.

Love Ruth

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bunnybaby    0

:D Also wanted to add that my gums and tongue have gone nearly white! It seems odd but all my other symptoms are on the lists but not this wierd one.

Love Ruth

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amoliphant    0

I've never heard this expressed by anyone else but when I get glutened this old, slow, familiar feeling starts to come over me as if my blood pressure is dropping quickly, followed by nausea and sometimes breaking out in a sweat. My eyes feel "squinty" and I feel slightly feverish and achy with a tremendous head-in-a-vice-grip headache. The diarrhea comes later. When that old, familiar like the blood is actually starting to drain from my head downward and the weakness and I might faint feeling comes on, I know I've been glutened. If we are riding in a car the symptoms are magnified like you wouldn't believe. It can be SO humiliating and has happened too many times to count. My husband has to pull over, like immediately (!), I am sweating profusely, head between the knees, weak and shaking all over. Afterward, I am completely wiped out physically for 2-3 days.

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I share symptoms with most already posted, with a few exceptions. Also my symptoms start within the hour usually, or sometimes after 2 hours. The "tummy rumblings" begin probably after 30 minutes but after an hour or two I'm really feeling awful and I'm certain it was gluten and not something else.

Exceptions for myself from what people posted:

--I do not get a skin rash, nor does my father. There are no visible signs for either of us.

--I am significantly more sensitive than my father to gluten, however he has more sensitivities than I do like MSG and chorizo sausage give him issues.

--Headaches are more than just headaches, they are migraines and they last well beyond the rest of my symptoms.

--My abdominal cramps feel almost like terrible/extreme menstrual cramps. My dad can't relate to this one, but for me that's what they feel like. Way "down deep" kind of twisting feeling cramps.

--Burping is my very first symptom, always.

--Weird "tightening" on my left side between my lowest rib and hip. Strange, and not painful but very uncomfortable, like I'm being poked in the side by something broad.

--Severe heartburn (not sure if someone mentioned it). I NEVER experience heartburn as I eat natural and never processed foods. I definitely get heartburn after a cc issue.

My symptoms last all day, and typically all the next day even though the 2nd day is much better. By the 3rd day I'm feeling normal enough to call it normal - even though my gluten-free normal is actually pretty GREAT.

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Becci    1

I am very sensitive to gluten. Just touching it gets me.

My symptoms usually start within 1-3 hours and last 3 days to a WEEK!!

My symptoms are:

Nausea, Vomiting, Sharp pain in my stomach (like knife pricks all over), Weakness, Dizziness, and Fatigue. I also have very bad mood swings, and depression; i turn into a meanie :P.

I want to just fall asleep and stay asleep.

My head gets foggy, and I can't think straight.

My legs feel like they are going to fall out from under me.

And not to be to gross, but I get consipated and it sucks!

Those are my symptoms. Sounds fuuuunnnnn.

I am the lucky kind, to where if there is a millionth of an organism of gluten in something, I will be SCREWED!

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Becci    1
I use Aloe in fact I started selling it (UK). My symptoms are very similar to Rachels and others lists. The pain is so severe that it scares me.

Aloe is a gel from a leaf and so good quality 99% Aloe should be a thick gel that does not taste nice but can be bought mixed with other stuff but best to use the pure stuff mix a bit of juice or honey or something in if you really can't take it any other way.

The liquid ones are good but are diluted or use not just the gel from the leaf but the juice to which makes it less effective.

Thanks again, it is helpful to read others experience. I had never had nausea like this time before.

Love Ruth

Hi Ruth,

my husband was told to take a kind of Aloe Vera to help heal the intestines if I have celiac.

It tastes like water. It is 100% pure aloe, but the unnecessary stuff has been taken out.

You should try it.

It is:

George's "Always Active" Aloe

100% Aloe Vera

Fractionally distilled liquid from aloe vera leaves

Bitter free

no unpleasant taste

no preservatives

no additives

Pure aloe! and it takes like water.

I would suggest trying it if you like using aloe for your symptoms.

Rebecca~ (we bought ours from The Whole Foods Market http://www.wholefoodsmarket.com)

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LBethanyC    0

Whenever I eat gluten, even in the tiniest amount, I get:

-Extreme abdominal swelling and bloating.

-Gas.

-Constipation.

-Ache-y joints.

-Sharp pains in my back.

-Pains in my stomach.

-EXTREME fatigue. (I have to drag myself across the floor, and it takes everything I have to walk a few feet.)

-Trouble breathing at times. (Maybe because I'm so bloated? I'm not sure.)

-Depressed feeling/anxiety. I tend to feel on the verge of tears a lot, 'cause it makes my self-esteem plummet.

-I look very pale and sickly.

-Cravings for more gluten. Haha.

-Nausea and burning in the stomach (Usually the next morning when I wake up.)

-Sometimes I completely lose my appetite. The thought of food makes me want to throw up.

I'm not sure if this is a symptom or not, but yesterday when I had a bad reaction, I had this unbearable pain throughout my entire lower body. From my waist to my ankles was just a horirble ache. I took some tylenol, and it eased up a little. But it was horrible. Today, my elbow joints are aching a lot.

A few months ago, my friends and I went to McDonalds and Tim Hortons while we were on a road trip. An hour after eating, my stomach had gone from flat to several months pregnant. Lol. It was so swollen. Also, my stomach-related symptoms seem to be worse while I'm sitting down. When I stand up, they're still there, but not as painful.

Oh, and, when I get "glutened", the symptoms last for at least 4 or 5 days, if not longer.

A few weeks ago, I realized that I had been accidentally eating gluten, from the chicken breasts that me and my roommate buy. After that, for a period of 4 or 5 days, I had this constant shooting pain through my stomach, and I would break out into sweats, and have to lie down. I couldn't stomach anything but jell-o.

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SLB5757    0

Well I have learned that Gluten is definitely a big no-no for me, but I always get roped into "trying it" just one more time by someone who feels that it just has to be some other issue.

My boyfriend, although VERY great about finding me gluten-free things, suggested this weekend that I try to add back gluten and add fiber also. He feels that if I just go to the bathroom more then I could eat gluten and be fine. Unlike many of the posters I see on the board I have different symptoms. Mine are as follows ( I am in a current "glutening", so I think I know what happens to me fairly well).

*Fairly early after glutening is the severe stomach bloating (This starts very high up under breasts and goes all the way down)

*Constipation - am unable to go to the bathroom for days - like my system completely shuts down

*two or three full days after ingestion I will start to go to bathroom again and it's an all day episode, if not two days

*day four to five seems to be fairly normal and bloating starts to subside

*fatigue

*chin "breaks out" with bumps (never have break outs any other time)

*This episode brought severe headaches

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PMM    0

Wow. I'm so glad to hear you all talk about the deadness from the neck up. When I get glutened I can't think and I have overwhelming lethargy. My gut also looks like any minute I'm going to explode. When I was diagnosed I just thought I was gaining weight and it was all above the beltline.

I also have PVCs like crazy. Anyone else blessed with this symptom? I had to wear a holter monitor and get a nuclear stress test....all good. They make me feel like my heart is skipping a beat and can be quite severe. Although I'm Gluten Free (I really, really work at it) I still have frequent PVC's.

Patty

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Karrin    0

I'm still relatively newly diagnosed (2 months), but the last time I was cross contaminated it took me out for at least 2 weeks, with other symptoms persisting close to a month or more (mostly joint pain and bloating).

When I'm glutened severe fatigue is the worst, I'm bedridden until it passes. Lower back pain, constipation (usually, sometimes I have the big D), nausea, bloating, joint pain, my reynauld's and RA kicks into over drive, face rash, and I have such terrible head fog I can't concentrate long enough to read a sentence in a book. I sometimes have a hard time breathing too (feel unable to catch my breath).

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Karrin    0
Wow. I'm so glad to hear you all talk about the deadness from the neck up. When I get glutened I can't think and I have overwhelming lethargy. My gut also looks like any minute I'm going to explode. When I was diagnosed I just thought I was gaining weight and it was all above the beltline.

I also have PVCs like crazy. Anyone else blessed with this symptom? I had to wear a holter monitor and get a nuclear stress test....all good. They make me feel like my heart is skipping a beat and can be quite severe. Although I'm Gluten Free (I really, really work at it) I still have frequent PVC's.

Patty

I think I have something like this, though with all my other problems I've not really thought to bring it up to a doctor again (the first and only time I did he treated me like I was nuts and decided I had anxiety disorder - needless to say he was dropped for a new doc). It has gotten better since I quit all caffeine, but my heart will, on occasion, go from zero to full speed for something as simple as me walking up the stairs from the couch to the bathroom. I occasionally get really short of breath as well, I feel as though I'm unable to catch it or take a deep enough breath, though the latter has not happened since I went on the diet. I also notice when I've been CC'd and go to the doctor my blood pressure is extremely low. I have a low reading on average - about 104/45, though it used to be more like 110/55, and the last few times I've gone in (and have felt really horrid), it was 90/45 - the nurse was so surprised she read it again and was happy with the 94/45 she got.

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SLB5757    0
I think I have something like this, though with all my other problems I've not really thought to bring it up to a doctor again (the first and only time I did he treated me like I was nuts and decided I had anxiety disorder - needless to say he was dropped for a new doc). It has gotten better since I quit all caffeine, but my heart will, on occasion, go from zero to full speed for something as simple as me walking up the stairs from the couch to the bathroom. I occasionally get really short of breath as well, I feel as though I'm unable to catch it or take a deep enough breath, though the latter has not happened since I went on the diet. I also notice when I've been CC'd and go to the doctor my blood pressure is extremely low. I have a low reading on average - about 104/45, though it used to be more like 110/55, and the last few times I've gone in (and have felt really horrid), it was 90/45 - the nurse was so surprised she read it again and was happy with the 94/45 she got.

My BP is always 90 something over 60 something. No one ever seems concerned. What I think is funny is that when I went in for my scope - a nurse said "well you aren't too worried about this procedure, your BP is only 110 over 80". I told her " That IS high for me". lolol. I contribute it to being small or having poor circulation, not anything with celiac disease.

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merry0709    0
Over this past summer, both of my daughters and I have discovered we are gluten-intolerant, even though we all test negative for celiac disease. We all express our intolerance a little differently -- I through my skin, my youngest daughter through her energy level, and my oldest daughter through her gut.

Skin and energy level are fairly easy to continue with a regular life, but when my oldest gets "glutened," it will wipe her out for 2-3 days with stomach upset, maybe some diarrhea. We have been pretty good at avoiding everything, but there is an occasional slip-up.

I was wondering how other people react to getting glutened. I know there is probably a wide variety of responses. I'm just curious if the 2-3 day range of being out sick is about average. Also, if your stomach is affected, is there anything you do to help it? We've been using heat and Alka-Seltzer Gold (recommended by a nutritionist), which helps a little.

Thanks!

Laura

I get all the same symptoms as everyone else has pretty much stated. Amazing, and quite comforting to know it isn`t in our heads, like some people believe. But the other thing I get is woken up in the middle of the night with my feet burning hot on fire and little twingy spasms in my legs. I see they just linked Restless Leg Syndrome to Celiacs. My mom has that just terrible but wont get tested. the M.D. just keeps upping her meds, and she just keeps eating her cakes, cookies and crackers, with every celiacs symptom in the book,gets sicker and takes mor pills. Frustrating.

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PMM    0
I get all the same symptoms as everyone else has pretty much stated. Amazing, and quite comforting to know it isn`t in our heads, like some people believe. But the other thing I get is woken up in the middle of the night with my feet burning hot on fire and little twingy spasms in my legs. I see they just linked Restless Leg Syndrome to Celiacs. My mom has that just terrible but wont get tested. the M.D. just keeps upping her meds, and she just keeps eating her cakes, cookies and crackers, with every celiacs symptom in the book,gets sicker and takes mor pills. Frustrating.

Wow. Tell mom she'll feel so much better if she finally figures out what she has and does something about it. It's a pain to give up the cake and cookies, but I feel so much better now that I've stopped poisoning myself. I didn't know RLS was linked to Celiac. I used to really suffer with that but I didn't want to go the medication route. It went away about the time I was diagnosed....imagine that!

I was 56 when I was diagnosed and who knows how long I've had it. I had symptoms of fatigue as long as I can remember. The GI stuff didn't really get bad until last year. When I think about how long I suffered before I got scared enough to find out what was wrong with me I just feel stupid. Even the scopes aren't all that bad and I woke up in the middle of mine.

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nasalady    6
Over this past summer, both of my daughters and I have discovered we are gluten-intolerant, even though we all test negative for celiac disease. We all express our intolerance a little differently -- I through my skin, my youngest daughter through her energy level, and my oldest daughter through her gut.

Skin and energy level are fairly easy to continue with a regular life, but when my oldest gets "glutened," it will wipe her out for 2-3 days with stomach upset, maybe some diarrhea. We have been pretty good at avoiding everything, but there is an occasional slip-up.

I was wondering how other people react to getting glutened. I know there is probably a wide variety of responses. I'm just curious if the 2-3 day range of being out sick is about average. Also, if your stomach is affected, is there anything you do to help it? We've been using heat and Alka-Seltzer Gold (recommended by a nutritionist), which helps a little.

Hi Laura,

My husband gets the skin rash (dermatitis herpetiformis - blisters, severe itching) when he's glutened, and it takes literally WEEKS (more than a month for sure) to go away.

If you have dermatitis herpetiformis (DH for short), you have celiac disease, whether or not you tested negative in the bloodwork.

I get both neurological symptoms and gastrointestinal symptoms: horrible migraine headaches (feels like my head is going to explode), vertigo, hand tremors, ataxia, peripheral neuropathy, canker sores all over the inside of my mouth, diarrhea, stomach cramps, bloating, etc.

I don't react to gluten immediately....it usually takes me from 12 to 24 hours, occasionally as long as 48 hours. The gastro symptoms tend to go away after a couple of days but the mouth sores, headaches, vertigo, etc., last for at least a week.

I don't take medications to soothe my stomach, but I do take Imodium for the diarrhea, which tends to work.

JoAnn

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wendstress    0

Just got glutened last week..... I thought the pizza dough tasted way too good to be true! (It had been put in the wrong spot at the bakery and I didn't bother to check).

It took 12-24 hours to hit me, but when it did:

*Headaches - Persistent for 2-3 days

*Fatigue

*Brain Fog

*Peripheral Neuropathy

* Gas

Funny, but I actually didn't get the "D" this time.

I didn't realize I had gotten glutened right away. The first indication was when I woke up the next morning and both of my hands had 'gone to sleep.' I haven't experienced that for months.

The worst was days 3-4. Felt like I got hit by a truck. All I wanted to do was lay in bed and sleep. Couldn't think straight.

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<snip>

I don't react to gluten immediately....it usually takes me from 12 to 24 hours, occasionally as long as 48 hours. The gastro symptoms tend to go away after a couple of days but the mouth sores, headaches, vertigo, etc., last for at least a week.

</snip>

This will sound horrible, but I'm so glad to hear that someone else has such a long delay... it generally takes me 24-48 hours to get good and sick (though I'll be moody immediately).

-Jamie -(-*

Antibody negative, January 2009

Doctor diagnosed "either celiac disease or IBS-GS" January 2009

Doctor diagnosed "IBS-GS" January 2009

Self-diagnosed January 2009 via elimination diet and challenge

Genetic marker negative

Too chicken to go back to gluten to get 'scoped. :P

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I just got glutened last night after a month of improvements :angry:

I feel so fatigued it feels like there are weights attached to me.

I feel weak and dizzy, my BP is low.

Brain fog.

And I am grumpy!! Look out :P

It took about 2 hours for the fatigue to start and overnight got worse. I woke up with a gluten hangover!

I don't get many GI symptoms (very ocassional D w/ stomach pains).

The symptoms that bother me the most are the above.

Does anyone know what one can do to help relieve the fatigue, grumpiness, etc.?

I'm drinking lots of water and taking my vitamins but that's about all I've got.

Any advice would be greatly appreciated :)

Thanks,

Jillian

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luvs2eat    60

I usually have symptoms w/in an hour or so after being glutened. I have nausea and have to try hard not to vomit... I'd probably feel better if I did, but I fight it to the end! I don't just have diarrhea, but explosive D that feels like burning acid!! It lasts for a few days sometimes. Brain fog too... Yuck!

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