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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.

Attack Sent Me To The Er By Ambulance Today!
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26 posts in this topic

Well I ate Ritz Crackers again trying to get a reaction because I had my nerve test scheduled today and I NEVER got to have the test. I had to call the ambulance from the dr's office parking lot because I thought I was dying. The pain in the upper part of my stomach was so unreal that I could barely breath! I was transported by ambulance to the hospital.

Directly before the attack started I went to the bathroom and it was (as usual) extremely soft. Then the stomach pain begun and I still can feel like twitching and muscle movement down my vaginal cavity and my colan!!

Anyone else ever have "SEVERE" abdominal pain with Celiac?

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Yes. Personally passing a kidney stone is less painful than the pain I had from celiac. They thought I was having a heart attack once.

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Well, not that severe. But last night I wanted to go to the ER. Not because I felt I was dying, but because the pain was so intense it just seems as if something serious has to be wrong. If it hadn't been for the location of the pain and lack of UTI symptoms, I would have thought it was another kidney infection. But I think I was glutened on Tuesday, so for me the GI pain takes a while to hit.

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the dr. I saw claimed he had never seen this kind of pain in the upper part of the stomach from Celiac. He suggested I also check out Porphyria!! I checked it out on the net extensively, but most of my symptoms don't quite fit with that. The "obvious" ones do, but none of the others. Plus my daughters rash is not brought on by sun it's brought on by food she eats that contain Gluten.

I have never felt that kind of pain in my entire life. I literally thought my insides had blown up inside me and that they were going to start spewing out at any moment. It was like I was being stabbed continuously OUCH!!I am shocked they didn't even do an ultrasound. They did some X-Rays, and told me all tests came back normal so since I was on prednisone they said the prednisone burned a hole in the lining of my stomach and gave me an ulcer!! Since the pain I feel is constant (but not usually with the stabbing pain) and I've never had a problem with Prednizone before I'm not buying it. I don't even have an acide reflux problem. I think I had a severe glutan reaction and I refuse to eat anything but fresh fruits and veggies until the morning of my Monday Test!! I'm hoping it will show up on short notice like that. I'm going to a New England Patriots game this Sunday and I can't risk an attack!!

My nerve damadge test had to be rescheduled UG!!

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When I was in high school a few years ago I kept suddenly being beset by the worst abdominal pains imaginable. I would have intense hot and cold flashes (tearing all my clothes off in public types) and all kinds of secondary symptoms of the pain (like hyperventilating and losing feeling in my face and hands and things) - the docs could never tell me what was going on, said that all of my bloodwork was normal etc. and I kept living with the knowledge that something was very, very wrong with me, that it could happen again at any time and that I had known more pain than most people do during their lives. So yeah, I feel ya on that one. The abdominal stuff can get really nasty really fast. I'm glad you're past that pain by now.

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Last summer I went to the ER once, because we thought I had a heart attack. They hooked me up to heart monitors, which 'only' showed severe palpitations (they didn't think they were a problem), did an x-ray of the lungs and liver, and did blood tests. The nurse kept telling me to stop hyperventilating, as she said that wasn't helpful. Duh, I knew that, but she should have tried the awful pain I was in, being made to lie still on my back for five hours, and not hyperventilating! Especially because they gave me nothing at all to help with the pain.

In the end, the verdict was, that my heart was fine, the liver and lungs were fine, and that my electrolytes were out of whack, with especially my potassium very low (at that point I had severe, watery diarrhea for a week). And that the pain was 'only' caused by severe stomach and bowel cramps, and that there was nothing wrong with me. And without even fixing the potassium, they sent me home.

The next time that happened, I just curled up on the couch (I was all alone) and prayed to be allowed to die. No point in trusting stupid doctors to be any help, for sure.

Anyway, you sound like the same thing happened to you. I've never had another one of those episodes after going gluten-free, it was obviously caused by celiac disease.

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YES!!! I had SEVERE pain. It felt like a paint scraper scraping the insides of my guts every time I ate. Ultimately, I learned that I had complete villous atrophy .... severe intestinal damage. I never called an ambulance, but oh my goodness the pain was unbearable.

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I'm actually relieved to hear that others have had the same thing. After he made that comment I was thinking that maybe I was on the wrong track here, but I'm pretty sure now that It was caused by celiac. I keep trying to tell myself that there is no way I have this disease, but what I really know is there is no way I DON'T have this disease!!

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I had a similar attack last night, although mine was down lower. It was so intense that if it had been on the right side instead of the left, I would have gone to the ER thinking I had appendicitis.

I did not sleep at all--every time I shifted position, the pain shot through me. I took Extra Strength Bufferin, and tried not to move!

I finally shuffled to the bathroom early in the morning, and almost passed out from the pain of trying to go--but after I did, the pain lessened a bit.

I'm still sore tonight, but it's not nearly as bad as last night. I'm exhausted, and hope to get some sleep tonight <_<

I hope that you're doing better :)

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wow, i think i am in pain just thinking about what you all have felt!!! :(

patti and electra---hope you are both doing ok. xoxo

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I am so sorry that that happened to you. I have had the same intense pain. Sometimes when the pain is so intense, an antispasmotic, or a tranquilizer like ativan may help. Check with your M.D. Recently, I was so sick with d and vomiting that I gave myself a hernia!!!!!!!!

quote name='Electra' date='Dec 1 2006, 06:16 PM' post='241493']

Well I ate Ritz Crackers again trying to get a reaction because I had my nerve test scheduled today and I NEVER got to have the test. I had to call the ambulance from the dr's office parking lot because I thought I was dying. The pain in the upper part of my stomach was so unreal that I could barely breath! I was transported by ambulance to the hospital.

Directly before the attack started I went to the bathroom and it was (as usual) extremely soft. Then the stomach pain begun and I still can feel like twitching and muscle movement down my vaginal cavity and my colan!!

Anyone else ever have "SEVERE" abdominal pain with Celiac?

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There must of been something in the air last night, I also was having pains in my left side and it was hurting terrible. I couldn't even touch my side. I feel like Jerseyangel I am glad it wasn't on my right side I really would of been scared. Not sure what it was, It is also that time of month so who knows. I don't even hardly have those any more maybe 2 or 3 days. Hope every one feels better soon. I took a valium last night so I slept better than usual.

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Well I ate Ritz Crackers again trying to get a reaction because I had my nerve test scheduled today and I NEVER got to have the test. I had to call the ambulance from the dr's office parking lot because I thought I was dying. The pain in the upper part of my stomach was so unreal that I could barely breath! I was transported by ambulance to the hospital.

Directly before the attack started I went to the bathroom and it was (as usual) extremely soft. Then the stomach pain begun and I still can feel like twitching and muscle movement down my vaginal cavity and my colan!!

Anyone else ever have "SEVERE" abdominal pain with Celiac?

Dear Electra,

I am gluten intolerant, and have experienced pain like that. It is like a poking pain all over my stomach. I had so much gas, I thought I was having a heart attack! Last week, I got glutened somehow. My parents leave crumbs everywhere, and I am paranoid careful, so it is anyone's guess what did it. I sometimes take up to twelve hours to feel the full affects. I get terribly nauseous, have diarrhea, stomach bloating, terrible poking pains all over my stomach, my colon hurts, and I shake and my heart palpitates, and my hands often go numb. Luckily, if I get my Promethazine down quick enough, I can prevent it from getting to the point I dry heave with such force that my entire body hurts. I often have trouble breathing until I can belch when I get like this. NO MORE RITZ CRACKERS! It is so not worth the misery. The twitching in your lower body cavities is something I got as well. I hope you feel better soon!

Sincerely,

NoGluGirl

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Electra,

I, too, had a trip to the ER by ambulance a couple of years ago (before I knew I had celiac disease) with pain and bloating. It was like being in the final stages of labor, but the pain was just under my ribcage. I was on a morphine drip for the pain and after numerous MRIs and CAT scans with barium, it resolved (I think the barium acted like a huge Tums). Anyway, when the pain started again a week or two later, I got online where I found out about Celiac. I immediately cut gluten from my diet and felt like a new person! Nothing in my hospital chart says "celiac attack," but we know, don't we? :rolleyes:

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im going through the same thing right now. it started on Wednesday night and i still feel like I have just been hit with a lousiville slugger right under the ribs...its slowly going away- but its so bad i have been taking percocet for the pain. i have had this same thing before and ER trips all end with saying i had heartburn or something stupid on the discharge papers like "you have been diagonosed with _stomach pain_ " :angry: ....

lots of sympathy from me! feel better soon :) eat easy and let yourself heal...

~breann

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I had to giggle when I read these posts. Not because I am laughing at you but because I am totally with all of you in this. My celiac was "inactive" for 33 years. When it finally became "active" with GI pain, D, N, and V.. I ended up in the ER 7 times in the course of 3 months before I was diagnosed. And once, I got taken by ambulance because I fainted in the lobby of my apartment building following a night of D.

I also have a hernia. which I am sure was caused by all the V and D I have had.

There has to be a revision of the Merck Manual to include "celiac attack".

The other day I called my doctor for antinasea medication because the N has been terrible recently. Has anyone ever taken COMPAZINE?

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I was talking to a coworker today who was recently in the hospital for chest pains, they found nothing wrong with her heart, have done several tests , I know she has migraines and other associated feelings of Celiac. I told her to ask about Celiac if they found nothing wrong with her. Sometimes I think I'm associating everyone elses aches and pains with mine, but DR.s seem to miss this diagnosis quite a bit.

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I had to giggle when I read these posts. Not because I am laughing at you but because I am totally with all of you in this. My celiac was "inactive" for 33 years. When it finally became "active" with GI pain, D, N, and V.. I ended up in the ER 7 times in the course of 3 months before I was diagnosed. And once, I got taken by ambulance because I fainted in the lobby of my apartment building following a night of D.

I also have a hernia. which I am sure was caused by all the V and D I have had.

There has to be a revision of the Merck Manual to include "celiac attack".

The other day I called my doctor for antinasea medication because the N has been terrible recently. Has anyone ever taken COMPAZINE?

Dear sillyak,

My mother has taken compazine. It is from the same family of drugs as Phenergan (Promethazine). It does not make you as sleepy as Phenergan. Promethazine has been my saving grace. :) When I got glutened last week, I really was sick. :( Thank God for this pill! One thing with both the Compazine and Promethazine is, stay out of the sun! It makes you very light sensitive.

Sincerely,

NoGluGirl

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I had pain that bad after going on a gluten binge one weekend. This was after being gluten free for a while and feeling better. I though I might be able to have gluten once in a while (yeah right!). The pain was so bad I couldn't walk. I have been though unmedicated labor twice and it was almost as bad as that. I thought I was going to explode. I knew what it was right away and never glutened myself on purpose again.

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I'm so glad I found this thread! I was so stupid yesterday and ate pasta and bread. All last night I thought I was having a heart attack. I had upper g.i. gas and pain, pressure under the ribcage, severe bloating. I felt horrible. It even messes up my sinus and I get fuzzy brained, the works. I was feeling better earlier this afternoon but this evening has been miserable. I've had all my pre-gluten-free diet symptoms return with a vengeance and I have felt horrible. I can't believe I thought one day of wheat wouldn't hurt me! I most certainly have learned my lesson. Last night I knew what was happening even though I had worries of other things. I've had this enough in the past to know what it is and to know better than to do what I did!

I hope you all get to feeling better.

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I concur with all of you--celiac pain can be absolutely unbearable; although, like some other posters, my pain is not high toward the ribcage but rather lower, in the bowels. I don't actually get so much gas, but I do get all of the other classic G.I. symptoms. One thing to add though, if you are a woman, lower pain like that can also be a burst ovarian cyst. I've had several of those before, and I'd say that the pain is comparable. Sometimes it's difficult for me to know if I've been glutened or not based on the severity of the pain.

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Hey NicoleAJ - is that a Smooth Collie? Looks awfully similar to my pal Woody!

On to my post...

I just wanted to say that I found this post extremely helpful! I was diagnosed in June of '06 and have been trying my damnedest to stay gluten free. As you all know, the learning curve can be steep. About 1-2 months ago I cut anything with "flavorings" or "natural flavorings" out of my diet for the first time, and have restricted myself to very safe, known items (a short list :(

A few weeks ago I ate some cheese (Jewel brand Pepperjack) and had a mild reaction - slightly itchy and I got the dermatitis hepeswhatever on my earlobe (again). Nothing major.

For christmas I got a "gluten free" pizza from Lou Malnattis (they actual sell over the web, but we went to the resturant where they actually make 'em). Made with sausage in place of crust, with cheese and tomato sauce on top. Have had some many months ago and felt "safe".

Needless to say, 30+ hours of hell (as described by you all, above) ensued. I had undiagnosed gout for a good 13 years and averaged about a stone or two a year - this was in that same pain ballpark (though my stones always, and I mean always, took 6-8 hours to pass). Like with the stones, I could _feel_ the food as it traversed my large intestine over many hours. This was painfully reminiscent of passing kidney stones - with those I could NOT urinate, so it was 6-8 hours of pushing. I could feel the contractions, feel where the stone was andwhere it currently sat, and would go into spasms (in the urinary tract) after each "push" - each push being perhaps 2 minutes apart on average. Ladies, I feel for you! (giving birth and kidney stone comparison). Sans the spasms and contractions, the experience was pretty similar.

So, just wanted to say, thanks all! Saved me a trip to the emergency room (if it was gluten, as I expected, that trip would have been pointless I believe... woulda spent the whole time trying to convince them it was the gluten).

It was unbelievable - just like passing a stone, my pain just 'went away.' The soreness is still there, and I'm a little shellshocked, but otherwise I'm just happy it's over!

Still amazes me that such small amounts could do it... at a guess, I'm thinking the gluten was from flour floating around in the air. Maybe enough to coat the bowl of a teaspoon? And, wow, the agony it caused.... I had some vicodin I was hoarding (old practice I picked up from dealing with the kidney stones.... get it when you can then sit on it until you really need it). I popped 2 the first day (the pain was much less, and the pills helped). Come today the pain was 10x worse - popped 3 of the buggers and got the slightest amount of relief, but the pain came roaring back worse than ever. Popped 2 more (about 4 hours after the original dose) and nothing happened... about 2 hours after that the pain just stopped within about 60 seconds. I can't imagine it was the vicodin, but the pills did stick around long enough to mute all the general soreness for a feew more hours (kinda getting sore now... but as you all know, "sore" is like heaven compared to what preceded it).

Q: did the pain just shut off for any of you either? There was nothing gradual for me, other than those 60 seconds or so. Kinda felt like someone using a dimmer to slowly turn a light off.

Happy Holidays, all!

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YES!! I get pain that bad, a few days a month even after being gluten-free 1 year this month, I pray I will die. My Dr insists that celiac disease can't cause severe pain.

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My Dr insists that celiac disease can't cause severe pain.

well. He doesn't have it, does he?? :P I've had glutenings that woke me up at night, days when I couldn't move. For 3 YEARS before dx, I felt like I'd been gut kicked all the time, avoided all use of stomach muscles. Worse pain than when I had the swollen spleen from mono.

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Misery loves company 8^)

I'm still recovering, and suspect it'll be a week+ before I'm 'normal' - normal being a very fluid situation recently! Let's just call it an upward trend...

Quick recap of symptoms from the attack:

Extraordinary pain - in retrospect I realize that it's been very, very common (to a much lower frequency) for 13+ years (one tends to get used to these things... at least I did!). And I have had brief (hour or two) acute episodes. What made this last one noteworthy was the 30+ hours of pain that continually got worse (until, as above, it shut off).

Impaired vision - doctor has postulated diabetes (I'm on the low end of pre-diabetic, just diagnosed) and my severe over medication for heart complications (down to undiagnosed sleep apnea) - my BP was at ~55/unreadable for a year or two before I switched doctors. Took me around 6 months to wean off: 300 mg metoprolol, 10 mg Norvasc and 200 mg Hyzaar (at one time that was up to 400 mg Metoporolol, 10 mg Norvasc and 300 mg Hyzaar. Needless to say I had tremors and trouble, uh, doing much of anything). In October I was totally freed from ALL of that and my BP finally bounced back (and got a touch high - 160/100 after a sleepless night) so I'm on 25 mg of Cozaar now, to protect against apneas. Doc thinks my Cpap machine needs tweaking. In any event, the blurred/double vision returned in force after the glutening and is now still a bit off.

Corn cob colored stools returned - yesterday's was immediately followed by the soft-serve ice cream variety (ruddy brown though!). Am thoroughly happy to know that my intestines weren't completely mashed (over the undiagnosed period) and have the ability to bounce back. In fact, that's a guess I have about this last attack - healing was taking place, flattened vilii returning and nerve damage reversing. Wonder if you all have theories? :)

Looks like my motor coordination problems and spelling issues (sigh... I used have immaculate spelling and grammar; nearly freakishly so). Had a neurological test (because of sleep apnea... really for insurance reasons, ultimately) and was found to have some mild impairment in impulsiveness, memory and coordination. Doctor had ascribed that to sleep apnea, but this neurologist was on the ball, and pointed out that the brain damage :( could also be from Celiac leaky gut (white blood cells (and glutens) escaping the intestine and running rampant in my body, attacking whatever's in the way). Doctor quite agreed - and I'm beginning to think that things like the arthritic symptoms and the eyesight might be the Celiac. Doctor's been working on figuring things out, but I think that he was unaware of the severity of my Celiac (see below).

BTW, Lou Malnati's called back and I had a pleasant chat with the gluten free pizza designer. As you all know, it could have been anything, but it sounds like they do try to be very careful. 'Course, Christmas eve... who knows what coulda happened. My mind certainly wouldn't be on the job at hand... and it could well have happened at my end.

Ah, now my doctor... it took some time for the diagnoses (3-4 months) and he was pretty tight lipped on it (no need to worry me, I guess). The 'elimination diet' came after he looked at my ankle. My ankle has ALWAYS had this psoriasis (not my diagnosis - but many specialist's diagnosis!). My mother thinks it first appeared pre-kindergarten. Always there, nary a remission. Sometimes it would get super itchy (to the point of pulling chunks out when itching w/ bloody mess... though little pain, really). At some point ~10 years old my OTHER ankle started to get it - that went away, though (few months)!

Also, I had dropped something big-and-sharp on my right shin 2-3 years ago - the scab never healed and itched all the time.

Doc looked at those (had shown the shin before) and looked at my finger nails and arms (have always had these pimply things there... also on my hack, sometimes on my face, and also on my scalp). Suddenly told me to cut the wheat out. Explained that he, himself was a Celiac! Now, to cut this short (too late!) I believe that a) I was terribly lucky to find him and B) that he has lumped me in with himself, regarding "Celiac". My guess is that he is self-diagnosed, and his knowledge is probably 'old' and often anecdotal (referencing himself).

Doesn't distinguish between a wheat allergy and Celiac (hehe, that's a red flag) :)

Never did a DNA test, as they 'rarely work'. Methinks he doesn't have Celiac, but a wheat allergy or intolerance.

When I called about the pain from the attack he insisted I go to the hospital - he was convinced that a glutening shouldn't give anything like that amount of pain. I didn't, then looked up this thread :) AND faxed it to him. I believe (certainly hope so) that he's giving it a look through.

Anyhow - what luck on finding him! Couple of hiccups, and never particularly got the 'seriousness' from him (comments like "maybe of it's just a little gluten" or "what if I peel the crust off of a pizza") were met with "I really don't think so..."

Hehe... for me, now, those questions would illicit a bout of maniacal laughter :)

<sigh> I just had to be born and live in Chicago. Oh, the pizza I can't have! The "world famous" pizza shops I drive past constantly! Stuffed, deep dish, doughy/thin, crispy/thin.... ugh. Superman in the Land of Kryptonite, I tells yah!

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