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Celiac Attack, Has This Happened To You?


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#1 oldman

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Posted 05 September 2011 - 02:48 PM

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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#2 Sarah Alli

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Posted 05 September 2011 - 03:49 PM

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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Sick and tired of being sick and tired.

#3 Michael & Rachel

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Posted 05 September 2011 - 03:53 PM

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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#4 ravenwoodglass

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Posted 05 September 2011 - 03:56 PM

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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Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#5 oldman

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Posted 05 September 2011 - 04:03 PM

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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#6 Katie B

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Posted 05 September 2011 - 06:16 PM

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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Diagnosed with eczema 1999, IBS 2004, Horner's syndrome 2004, severe anemia (B12) 2006, reactive hypoglycemia 2007, hypopituitarism due to autoimmune attack 2009 (diabetes insipidus - lack of vasopressin, lack of cortisol), potential Celiac Disease - difficulty getting 100% diagnosis but have gone gluten-free and am feeling better.

#7 color_me_confused

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Posted 06 September 2011 - 05:41 AM

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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#8 GlutenFreeManna

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Posted 06 September 2011 - 06:00 AM

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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A simple meal with love is better than a feast where there is hatred. Proverbs 15:17 (CEV)


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