Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Severe Pain

MadLucy

By MadLucy
in Coping with Celiac Disease

Recommended Posts

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!

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


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?

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


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 :)

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,563
    • Most Online (within 30 mins)
      7,748
    Bob Madden
    Newest Member
    Bob Madden
    Joined
  • Celiac.com Sponsor (A20):

  • Celiac.com Sponsor (A22):



  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • Scott Adams
      gluten-free Oatmeal

      By Scott Adams · Posted

      Oats naturally contain a protein called avenin, which is similar to the gluten proteins found in wheat, barley, and rye. While avenin is generally considered safe for most people with celiac disease, some individuals, around 5-10% of celiacs, may also have sensitivity to avenin, leading to symptoms similar to gluten exposure. You may fall into this category, and eliminating them is the best way to figure this out. Some people substitute gluten-free quinoa flakes for oats if they want a hot cereal substitute. If you are interested in summaries of scientific publications on the topic of oats and celiac disease, we have an entire category dedicated to it which is here: https://www.celiac.com/celiac-disease/oats-and-celiac-disease-are-they-gluten-free/   
    • knitty kitty
      My only proof

      By knitty kitty · Posted

      Well said, @Mari!
    • knitty kitty
      Shingles - Could It Be Related to Gluten/ Celiac

      By knitty kitty · Posted

      Hi, @Ginger38, I've had shingles in the past.  I understand how miserable you're feeling.   Not only do i have the chickenpox virus lurking about, I also have the cold sore virus that occasionally flares with a huge cold sore on my lip when stressed or exposed to gluten.  The virus lives dormant in the nerves on the left side of my face.  It causes Bell's Palsy (resulting in drooling).  The cold sore virus is also in my eye.  My eye swells up and my vision is diminished permanently whenever I have a flare, so it's of the utmost importance to keep flares away and treat them immediately if they do happen so I don't lose any more vision.   I take the amino acid supplement L-Lysine.  Lysine messes with the replication of viruses, which helps the body fight them off.   I haven't had an outbreak for several years until this year when exceptionally stressed and contaminated, it flared up again. Lysine has been shown to be beneficial in suppression of viruses like the cold sore virus (a herpetic virus), the chickenpox virus (also a herpetic virus), as well as the HIV virus, and even the Covid virus.   I also take additional Thiamine in the form TTFD (tetrahydrofurfuryl disulfide) because Thiamine has antiviral properties as well.   For pain, a combination of Thiamine (like TTFD or Benfotiamine or Thiamine Hydrochloride), with B12 Cobalamine, and Pyridoxine B6 have been shown to have analgesic properties which relieve pain and neuropathy.    The combination of Thiamine B1, Pyridoxine B6 and Cobalamine B12 really does work to relieve pain.  I take it for back pain from crushed vertebrae in my back.  This combination also works on other pain and neuropathy.   I usually buy a supplement that combines all three and also Riboflavin B2 called EXPLUS online.  However, it's made in Japan and the price with the tariffs added makes it really expensive now.  But the combination of Thiamine B1, Pyridoxine B6 and B12 Cobalamine (and Riboflavin B2) still work even if taken separately.   I can't take Tylenol or ibuprofen because of stomach upsets.  But I can take the vitamin combination without side effects.  However, you can take the three vitamins at the same time as other pain relievers for added benefit.  The vitamins help other pain relievers work better. I hope you will try it.  Hopeful you'll feel better quickly. Interesting Reading: Thiamine, cobalamin, locally injected alone or combination for herpetic itching: a single-center randomized controlled trial https://pubmed.ncbi.nlm.nih.gov/23887347/ Mechanisms of action of vitamin B1 (thiamine), B6 (pyridoxine), and B12 (cobalamin) in pain: a narrative review https://pubmed.ncbi.nlm.nih.gov/35156556/ Analgesic and analgesia-potentiating action of B vitamins https://pubmed.ncbi.nlm.nih.gov/12799982/ A Narrative Review of Alternative Symptomatic Treatments for Herpes Simplex Virus https://pmc.ncbi.nlm.nih.gov/articles/PMC10301284/
    • Mari
      My only proof

      By Mari · Posted

      I think, after reading this, that you areso traumatized by not being able yo understand what your medical advisors have been  what medical conditions are that you would like to find a group of people who also feel traumatized who would agree with you and also support you. You are on a crusade much as the way the US Cabinet  official, the Health Director of our nation is in trying to change what he considers outdated and incorrect health advisories. He does not have the education, background or experience to be in the position he occupies and is not making beneficial decisions. That man suffered a terrible trauma early in his life when his father was assonated. We see now how he developed and worked himself into a powerful position.  Unless you are willing to take some advice or  are willing to use a few of the known methods of starting on a path to better health then not many of us on this Celiac Forum will be able to join you in a continuing series of complaints about medical advisors.    I am almost 90 years old. I am strictly gluten free. I use 2 herbs to help me stay as clear minded as possible. You are not wrong in complaining about medical practitioners. You might be more effective with a clearer mind, less anger and a more comfortable life if you would just try some of the suggestions offered by our fellow celiac volunteers.  
    • Jmartes71
      My only proof

      By Jmartes71 · Posted

      Thus has got to STOP , medical bit believing us! I literally went through 31 years thinking it was just a food allergy as its downplayed by medical if THEY weren't the ones who diagnosed us! Im positive for HLA-DQ2 which is first celiac patient per Iran and Turkey. Here in the States especially in Cali its why do you feel that way? Why do you think your celiac? Your not eating gluten so its something else.Medical caused me depression. I thought I was safe with my former pcp for 25 years considering i thought everything I went through and going through will be available when I get fired again for health. Health not write-ups my health always come back when you're better.Im not and being tossed away at no fault to my own other than shitty genes.I was denied disability because person said he didn't know how to classify me! I said Im celiac, i have ibs, hernia, sciatica, high blood pressure, in constant pain have skin and eye issues and menopause intensified everything. With that my celiac nightmare began to reprove my disregarded disease to a bunch of clowns who think they are my careteam when they said I didn't have...I feel Im still breathing so I can fight this so no body else has to deal with this nightmare. Starting over with " new care team" and waisting more time on why I think I am when diagnosed in 1994 before food eliminated from my diet. P.s everything i went through I did write to medical board, so pretty sure I will continue to have a hard time.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.