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Celiac Attack, Has This Happened To You?
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Hello, I'm sorry if this is the wrong place to post this but I'm hoping some folks can share with me what they go threw when the have an attack.

I was diagnosed with celiac at the start of the year, I have been very strict with no cheating but still seem to have a few what I called attacks since. But nothing like this.

Starting Saturday night I woke up with a bad pain in my left side, felt like my stomach, I was able to get back to sleep but ended up getting up around nine in the morning feeling like I was going to have a washroom episode..

I then had a doozie of a washroom experience, Diarrhea, really bad nausea, cramps, dizzy, I haven't experienced it this bad since before I was diagnosed.

Now in most cases that would be it, I would head back to bed and sleep, however this time the pain in my stomach got a lot worse and started to spread so the the pain went from left to right across my belly button and stayed there.

I also still felt bloated and felt like I still needed to use the washroom but nothing was in me to come out or didn't want to.

I finally decided to go into the hospital. I live in Canada and health care is free but the wait times are simply horrendous. So after 4 hours of sitting in a chair I got a bed and the waited another 5 hours for the doc.

During that time the pain moved all the to my right side, lower ab section.

So the doctor finally comes in, tells me the blood work is fine, after a long talk about what I've experienced over the last year he says that this is more than likely a celiac attack with a low possibility it could be an appendix issue. I was told I could go home and if anything gets worse to come back in.

So I'm happy to get out of there but my right side is sore as all heck, I'm thinking it's even more irritated at being poked at, I get home drink a little water as I had not eaten anything since the day before.

I crawl into bed and really fight to try and find a comfortable position to sleep, around 4 in the morning I string together a couple hours together.

Get up around nine and try to start rehydratin myself, but feel nauseated when drinking, pain in my right side is pretty bad and I'm contemplating going back to the hospital.

But I take another nap and slowly I seem to be able to get comfortable and get some sleep....the pain in my right side has gotten better but still very sore.

It seems like now I can lay down and after the initial pain hits when I move I'm able find a position where it dosnt hurt............I even sat in the chair for a couple hours playing some vids with no pain until I got up........it was like everything had tightened up and by getting up I was stretching everything out, that hurt.......but I'm laying back down writing this on my right side with no pain.......but I know when I get up it will still be there.

So.......dose this sound like a celiac attack?

How long do your attacks last for?

Sorry if this post sounds like whining......just getting sick of the pain, any advice is much appreciated.

Thank you

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Sorry if this post sounds like whining......just getting sick of the pain, any advice is much appreciated.

Thank you

Yikes. Take your temperature- if you have anything resembling a fever go straight back to the hospital and this time demand a CT scan. More than likely it is just the celiac, but you really don't want to take any chances if there's a possibility of ruptured appendix or (if you're a lady) ovarian torsion.

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My daughter Rachel very recently underwent a Celiac Panel test and as one of her antibodies was very high, the doctor told us that she probably has Celiac. However, only a biopsy can confirm it.

Like you, Rachel has been very careful to go completely gluten-free for about two weeks. However, she has continued to have nausea, some days worse than others. Not sure if these are consistent with your description of an "attack."

Like you, we live in Canada and to get a referral for a biopsy could take 6 - 9 months.

In the meantime, Rachel is continuously suffering from nausea and while it may not completely answer your question, we are hopeful that someone else who has been through this can shed some light as to whether it is common for someone with Celiac to have "up and down" days.

Good luck.

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Have you been able to eat anything yet? If not try something very bland like plain rice or cream of buckwheat cereal. If you are still having pain and are still feeling sick to your stomach or are running a fever you might want to go back to the hospital to make sure it isn't your appendix. If you are slowly starting to feel a bit better and are able to eat a bit and move around then it may just be muscle strain from the violence of your reaction. Wish I could be more helpful and I hope this passes soon.

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I did have an egg this morning and just finished some rice n fish...... No nausea or stomach pain. Still the same right side pain, when I'm layin in bed it's fine

So I'm guessing this isn't the norm for an attack?

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Sounds a lot like appendix issues - I thought I had some before and when I was reading through your description it sounded like it. Where are you located in Canada? Usually they triage people according to their needs. If you say you're in 100% pain, can't sleep and think it's your appendix then they might prioritize you. Alternatively, you can wait until 4:00am or 5:00am or so and go when no patients are around. I personally wouldn't wait - I wouldn't necessarily associate specific pain with celiac - your pain is where the small intestine meets the large intestine and where the appendix is located. I wouldn't mention celiac if I went back to the ER as they might not be open-minded about other causes. Just my opinion! Hope you're feeling better soon.

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I finally decided to go into the hospital. I live in Canada and health care is free but the wait times are simply horrendous. So after 4 hours of sitting in a chair I got a bed and the waited another 5 hours for the doc.

Here in the USA health care is expensive and the wait times are also horrendous. My wife once spent 10 hours in an ER waiting room with a kidney stone, dry heaving in a bucket. My pleas to get her re-triaged fell on deaf ears, I nearly called an ambulance to pick her up from the waiting room to take her back to the same ER.

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Here in the USA health care is expensive and the wait times are also horrendous. My wife once spent 10 hours in an ER waiting room with a kidney stone, dry heaving in a bucket. My pleas to get her re-triaged fell on deaf ears, I nearly called an ambulance to pick her up from the waiting room to take her back to the same ER.

It really depends on where you live and how crowded the hospital is. I have been to ER's in 5 different states and only had one experience where I was waiting hours and hours to be seen. My one time being stuck in the ER all night (and eventually admitted) was when I had gallstones and I was also throwing up green bile into a bin. It was a nightmare because I was travling and barely knew what city I was in.

Anyway, to OLDMAN: I was thinking as I read your description that it sounds very much like a gallbladder attack to me. I had to have my gallbladder out after one attack where the pain did not go away and ultra-sound revealed stones were blocking a duct. I would go back, mention that you were there earlier and the dr thought it could be your appendix (don't mention the celiac) and that your pain has not gone away and see if you can get seen quicker.

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    • Did your doctor check for SIBO, H. pylori, ulcers, etc. when he was obtaining biopsies to check for celiac disease?  
    • Oh, and as I mentioned in my own post on pain, xanax. I swear. I tried it just to deal with the occasional panic I had at weird scary symptoms and clueless doctors. I am not a fan of long term use. But I recently found that .25 mg seems to aid with the neuropathic pain. It does not go away, but it helps. 
    • It does sound like a Glutening and you are just a few months into the diet.  It might help if you read our Newbie 101 thread under the "Coping" section.   Here is some information about rice milk: https://www.verywell.com/is-rice-dream-gluten-free-562354 Many, many celiacs are often lactose intolerant temorarily or permanently if you are naturally genetically inclined.  When I am glutened, I lose the ability to digest lactose for a while.   Salad?  Great but it can be rough on a sore gut!  Think soups, stews, easy-to-digest foods that you prepare yourself until you feel better.  Did your folks give you salad after a bout of flu?  Or did you stick with jello and broth?  I am intolerant still after three years to garlic and onions (the lactose resolved, thankfully).  You have a leaky gut (Google zonulin and Dr. Fasano who is a leading celiac researcher to verify that this is true) and that means you can become intolerant to anything (hopefully, just temporarily).   If you are 100% sure that you have had no access to gluten....did you eat out lately?.....then see your doctor.  Remember, celiac disease symptoms can change.  And here is the biggie.....it can take weeks, months or years to heal from celiac disease.  Two months in is nothing, really.  Why?  It takes time to figure out the diet and time for antibodies to come down.  celiac disease is an autoimmune disorder triggerEd by gluten.  once triggered it can go on and on damaging your gut especially with repeated glutenings (accidental or through cross contamination). I hope you feel better soon!  
    • I concur! I literally feel your pain as well. Like, at the moment, lol. Did you have an endo to see inflammation or damage? I am close to begging my GI for carafate or something to coat and protect. How about testing your antibodies to see if they are still rising? I read somewhere here rice milk may not be a good option.  Folks here have also suggested to me to stick with whole foods. Limit processed. Especially stuff that is not certified gluten-free, like chex. I think small amounts of gluten are in processed foids and can add up. I too reacted to lettuce the other day like I was ingesting glass. My sibling  had a food sensitivity panel done and it came back positive for a few things he had been eating a lot of. He can now eat them, but had to cut them out of his diet. Lettuce is probably on mine.  I have been drinking carrot and pomegranate juice,  dandelion root tea with hiney, aloe water, lots of squash, fish. Mild, no garlic, no onions or hot sauce. No coffee. It sucks.  Inflammation can tick off other organs, you mention a "Pain below". Not exactly sure which side, but certainly call your doc Monday. Sooner if the pain increases.
    • You should see a GI specialist before you go gluten free.  They should do a upper endoscopy to check for celiac damage.  Colonoscopy won't show anything related to celiac.  Also no you should not feel worse on gluten free, you should feel better.
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