Celiac Abdominal Pain

[TTNOGluten]

My gastro's tell me it is not common to have abdominal pain with celiac to the degree that I have it, which sucks by the way, because I have it and am not making it up just to spend the money for an office visit.

I know some folks don't have pain at all, just like I have no diarrhea, but for those who do, was wondering what your felt like, and how long after being gluten free, if ever, did the pain get better, as mine is constant for 4 months with virtually no improvement despite being gluten and dairy free

Please help, would love to here everyone's response

[Lilypad517]

I have severe pain during an attack, and mild pain the rest of the time. I just got diagnosed, and today is my big appointment. My pain is in my right side, and when severe impacts my breathing. I have been told it was from bloating and swelling pressing against the diaphragm.

Good luck. I will let you know if my doctor has any more insight to pain.

[IrishHeart]

I always love it when a doctor says "That never happens in Celiac"... I also love it when someone tries to tell ME what my level of pain "should be" or how it cannnot possibly be "that bad". The last time a doctor said this to me, suggesting I was exaggerating it or I would be curled up in a ball, crying in bed all day long, I said "I did cry this morning. As I cry every morning, but then, I get up, get dressed and get on with it. How dare you doubt me. If YOU had this much pain, buddy-- you'd cry like a little girl. Do you walk in my shoes? NO? Then please, do NOT tell me what MY pain level is. "

That shut him up.

I had HORRIBLE abdominal pain for 3 YEARS before my celiac DX!!!! So, IT DOES happen in Celiac.

The swelling and cramping and constant pain went away entirely after about 6-7 months.

But I was long UN-Dxed and my entire pelvic floor --the muscles, tissues, bones and joints---all impacted as a result of inflammation from celiac. I have neuropathy and parasthesia as well and I am in physical therapy and have neuromuscular/massage therapy for it. It has taken me almost a year to be able to walk, sit and lie down without excruciating pain. I make slow progress.

No doctor could explain those symptoms to me for 3 years, but my new GI doctor--who is "Celiac-savvy" --said he has NO doubt it is a result from celiac. Anything is possible with this thing.

Hang in there!--- and if you do not get relief from the abdominal pain in a few months, seek a second opinion . You should not have to suffer.

Right after DX, my GI did a GI series with barium to rule out any other disorders. Did yours?

And not to be too personal, but you said no D, but are you having any constipation? That may be causing your discomfort.

Try probiotics and drink a LOT of water. Works wonders!

Best wishes!

[burdee]

My gastro's tell me it is not common to have abdominal pain with celiac to the degree that I have it, which sucks by the way, because I have it and am not making it up just to spend the money for an office visit.

I know some folks don't have pain at all, just like I have no diarrhea, but for those who do, was wondering what your felt like, and how long after being gluten free, if ever, did the pain get better, as mine is constant for 4 months with virtually no improvement despite being gluten and dairy free

Please help, would love to here everyone's response

I gave up on traditional docs after they told me I had "IBS", should learn to live with it, but eat more wheat bran for my chronic constipation. When my constipation got so bad that I had impacted stools, I decided to try naturopaths.

The first naturopath I saw told me that I didn't have celiac, because I had severe constiption, rather than diarrhea. He gave me enyzymes to treat 'malabsorption symptoms'. He gave me enzymes to treat 'malabsorption'. Eventually I realized those enzymes contained 'malt diastaste' from barley and stopped taking them. SIGH

The second naturopath I saw, when I suspected celiac, told me that we don't feel pain in our intestines, because there are no pain sensors there. I wanted to kick him in the gut and tell him he shouldn't feel pain. LOL

My third naturopath was better. He agreed with my Enterolab test results. He tested me for other food allergies and found 6 other causes of my pain and suffering (all but 1 of my allergies cause gut pain, but one causes tachycardia and nausea). He also tested me for intestinal bacteria, parasites and fungus.

After I was diagnosed and treated for 8 different gut infections during a 4 year period, I found another naturopath who actually looked for WHY I kept getting all those gut infections, besides the fact that I had undiagnosed celiac for many years and a very leaky gut. She found that I had neutropenia (low white blood cells), low vitamin D level, hypothyroidism, and low adrenal function (low DHEA, androsterone, etc.) from blood tests than no other doctor considered. So 7 years after my celiac diagnosis I was finally diagnosed with Hashimoto's hypothyroidism, which causes constipation, rather than diarrhea. Even though I had low thyroid symptoms for years, I wasn't overweight. So they ignored my higher and higher TSH levels. Likewise, docs ignored all my other celiac symptoms (fatigue, gut pain, low weight), because I didn't have constipation.

My experience taught me that most docs are so focussed on treating symptoms that they can't see the big picture. Even though I got relief from some of my symptoms, I continued to believe that I could feel better. Now I do.

[Reba32]

yeah, I just love it when doctors or health care providers say you can't have Celiac unless you have diarrhea! I have read that statistically, only about 35% of Celiac patients have diarrhea. Another 35% have constipation, and the rest have no such symptoms at all.

I only have pain when I get glutened, and then it's excruciating. I can hardly breathe or stand up straight.

[tehjrow]

He said there's no pain?!??!?!? ARE YOU KIDDING???? My pain is CRIPPLING!!

[TTNOGluten]

I explained to him that I have constant abdominal pain in the upper part of abdomen, mind you this is two diff. gastro docs, one at mayo and one at home, both of whom said that is atypical for me to have pain, as usually celiac disease causes more of an upset stomach and bloating, but shouldn't cause real significant pain. This is 24/7 discomfort I told him, why would I make it up?? Even being gluten free has not really helped to ease it off, every once in awhile I get a little break from it, but not much, hurts in my ribs and back as well.

[tehjrow]

I explained to him that I have constant abdominal pain in the upper part of abdomen, mind you this is two diff. gastro docs, one at mayo and one at home, both of whom said that is atypical for me to have pain, as usually celiac disease causes more of an upset stomach and bloating, but shouldn't cause real significant pain. This is 24/7 discomfort I told him, why would I make it up?? Even being gluten free has not really helped to ease it off, every once in awhile I get a little break from it, but not much, hurts in my ribs and back as well.

It took 2 months of being gluten free for my symptoms to begin to ease up.

[moose07]

One of my first recognizable signs was abdominal pain on my right side. The pain was constant nothing I did made it go away. The pain took months and months to go away after going gluten free. I still get every so often probably when I get glutened.

[IrishHeart]

I explained to him that I have constant abdominal pain in the upper part of abdomen, mind you this is two diff. gastro docs, one at mayo and one at home, both of whom said that is atypical for me to have pain, as usually celiac disease causes more of an upset stomach and bloating, but shouldn't cause real significant pain. This is 24/7 discomfort I told him, why would I make it up?? Even being gluten free has not really helped to ease it off, every once in awhile I get a little break from it, but not much, hurts in my ribs and back as well.

Oh yes, my ENTIRE rib cage, chest, back---it all HURT LIKE HELL.

Bone, joint, muscles all swell from inflammation from celiac. I went UnDXed for so long and my doctor now says it's criminal what happened to me.

Really? "typical celiac symptoms" do not include abdominal pain ???...what a crock!! These idiots are so clueless!!!

I still have pain, but not at all like it was. I felt like I was swollen inside my own skin, like a stuffed sausage, tight, burning, itchy and lit on fire. I burned and throbbed with pain from head to toe 24/7. No kidding.

Your pain is real, hon. We "get it".

If anyone thinks you are "making it up" ask this simple question..."Really? what's my motivation? "...see what he says.

Idiot doctors.