Severe Pain

[MadLucy]

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!

[Kathy Blackwood]

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]

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]

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]

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]

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]

And what do you do for the pain?

[rinne]

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]

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]

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]

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

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