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Severe Pain

MadLucy

By MadLucy
in Coping with Celiac Disease

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MadLucy Newbie
MadLucy
Posted

Hello!

I am brand new to this - so, I hope I am doing it correctly.

I was diagnosed with Celiac in April. I am still dealing with very SEVERE pain. I have been on percocet for several months. They think something else is going on due to my pain. But I still think I am being glutened somehow. I just realized that I cannot eat Modified Food Starch. Duh! It has been a pretty big learning process being your own detective.

So, my question is: Does anyone deal with severe pain so bad that they need pain medicine?

All my doctors say that having Celiac CANNOT cause this much pain.

I don't know how many CT Scans, Scopes, etc. that I have had. I think I am going crazy!

I also just read that percocet is not on the drug-free list. Is there any other recommended pain medicine?

And can somebody PLEASE let me know if this is posting correctly? Thanks!

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Kathy Blackwood Newbie
Kathy Blackwood
Posted

I do experience belly pain when I've been glutened.

The pain makes child birth look like a walk in the park.

It starts within 20 minutes of ingesting gluten and can last anywhere from a couple hours to a couple days.

I have a friend who has Celiac Disease as well, and she can be laid out with pain for days.

So in answer to your question - yes other people do experience pain.

You have my sympathies, I know how bad you feel.

Kathy

rinne Apprentice
rinne
Posted

Are you eating dairy?

I found that cutting out dairy helps, it seems that Celiacs often have problems digesting dairy until the villi are healed.

I have a lot of pain, when I get glutened it feels like huge talons are clutching my entire torso with a burning pain across my belly and stabbing pain under the left side of my rib cage. The consequences to eating dairy are bloating, nausea, generalized pain and constipation.

ebrbetty Rising Star
ebrbetty
Posted

sorry you are having so much pain, I have been gluten-free almost 7 months and still get severe stomach pain most everyday.

I also have slow gartic empting, a bad case of IBS among other things.

dairy can cause stomach pain [i'm dairy free] along with chocolate, coffee, raw fruit and insouluble fiber on an empty stomach

do you have IBS too?

you may want to try the IBS diet along with being gluten-free

MadLucy Newbie
MadLucy
Posted
  • Author

I just got the IBS Bible Book from my mom. I am not a big cook but it looks like I will have to be : )

I think it is going to be process of elimination. I do eat a lot of raw fruit and dairy because what else am I supposed to eat these days : )

taz sharratt Enthusiast
taz sharratt
Posted

Hello!

I am brand new to this - so, I hope I am doing it correctly.

I was diagnosed with Celiac in April. I am still dealing with very SEVERE pain. I have been on percocet for several months. They think something else is going on due to my pain. But I still think I am being glutened somehow. I just realized that I cannot eat Modified Food Starch. Duh! It has been a pretty big learning process being your own detective.

So, my question is: Does anyone deal with severe pain so bad that they need pain medicine?

All my doctors say that having Celiac CANNOT cause this much pain.

you can deffinatly get pain, i get a lot of pain in my belly and bowel area, ive had 3 kids and after 24 hrs of labour and then a c section on all 3 i can tell you ide rather have my kids again than do this.

MadLucy Newbie
MadLucy
Posted
  • Author

And what do you do for the pain?

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rinne Apprentice
rinne
Posted

I found that licorice tea, you can buy the sticks at a health food store, simmered for about 10 minutes, just 6 - 8 pieces in two cups of water, really helps.

Also getting horizontal, I can always find a space that is relatively pain free and hang out there for a while, just for a break.

The biggest difference came though when I stopped eating dairy in addition to being gluten free. I also have to avoid the gluten free store bought treats, they seriously overload my system and result in acute discomfort.

And welcome MadLucy.

MadLucy Newbie
MadLucy
Posted
  • Author

Thank you very much!

The tea advice sounds like a great idea!

Is the licorice tea gluten free? I take it that it is but I have found that we cannot have licorice.

If so, I will go to the store tomorrow!

Ursa Major Collaborator
Ursa Major
Posted

Lucy, licorice tea it not made out of licorice, and therefore doesn't contain gluten.

When I first started out on the gluten-free diet I was unable to tolerate ANYTHING raw, including fruit. Eating raw fruit and veggies would give me terribly painful stomach cramps and diarrhea within minutes. I had to cook my vegetables and fruits until completely soft or couldn't digest them at all. You may have to do the same thing (and no, I wasn't able to eat a green salad for about six months, I can now).

And eliminating all dairy at least for a while (possibly a year) is good advice. Another thing: Painkillers may be causing stomach upset! They may be making you worse instead of better.

penguin Community Regular
penguin
Posted

I have severe pain, too, but I never know if it's celiac related or not. It happens about the same amount gluten-free or not gluten-free, so I'm at a loss. I get "pyloric spasms" in which my stomach muscle just goes into spasm and it's incredibly painful and knocks me out for at least a day. I take bentyl, which usually isn't enough, and phenegean when the pain is bad. Don't take both at the same time, though! I learned that the hard way, I slept for two days straight :o

I used to take anything from demerol to vicodin, and phenegran works the best. They've tested me for 'effin everything and can't find a cause.

Sorry, that wasn't much help, but I wanted to let you know that I had severe pain too :)

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