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

Chronic Abdominal Pain


missyf

Recommended Posts

missyf Newbie

I was diagnosed with Celiac a little over 2 years ago. Since then I have still had severe abdominal pain and want to be rushed to the ER at times. Four months ago, I had my second endoscopy to check for healing. I never had the blood test done. The healing came back a little better?????? My GI told me that because it had been over the 2 year mark, that was as good as it was going to get and sent me back to my family physician. She is now treating me, with what she calls, the worst IBS she has ever seen. I have been on numerous different medications and none are helping. Bentyl worked for about a month, I am now on Librax, 1 pill every 4 hours, after 2 hours, the pain returns.

Does anyone have chronic abdominal pain. I know my Celiac pain is different feeling pain then my IBS. I keep telling her that it isn't where my IBS pain typically is and that it doesn't feel the same. I am 36 yrs old and have had IBS diagnosed at 20.

Any suggestions on what to do next, where to go, anything that helped others.


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



Celiac.com Sponsor (A8-M):



confused Community Regular

I would give up casein for 6 weeks and see if u feel better, if you are still in pain in those 6 weeks then take away casein and soy and see how you feel. i would almost bet that it is casein or soy that is keeping u sick.

Are you sure you are 100 percent gluten free, even in personal care products. Coud you be getting cc by anything? Do you go out to eat alot?

paula

missyf Newbie
I would give up casein for 6 weeks and see if u feel better, if you are still in pain in those 6 weeks then take away casein and soy and see how you feel. i would almost bet that it is casein or soy that is keeping u sick.

Are you sure you are 100 percent gluten free, even in personal care products. Coud you be getting cc by anything? Do you go out to eat alot?

paula

I am a freak about gluten because of the constant pain, and I do not eat out ever. I will try the caesin and soy thing though.

CarlaB Enthusiast

What about parasites? Check out www.humaworm.com.

Or bacterial dysbiosis?

I had both .... You can Google them to see if they seem like they may be a problem for you, too. With your intestines being so damaged from celiac, you're bound to have other issues along with it .... your ongoing IBS shows that you do .... it's just a matter of finding out what it is.

It may take some more alternative type medicine to bring you back to health ... conventional medicine seems to be telling you you are as healthy as they can get you ... they are medicating your symptoms.

MyMississippi Enthusiast

Have you had a colonoscopy? (Is that how your IBS was diagnosed?)

If I were having SEVERE stomach pains--- I would first be requesting a total GI work-up -==including the colonoscopy and stool sample testing === for starters.---

If you've already done that and everything is o.k. (except for IBS) I would next try to track down any food allergies, or food intolerances ---- ( as others have suggested--- )

IBS can be difficult ---- but I wouldn't think it would be causing SEVERE pain.

Keep looking for the CAUSE------- And I hope you are feeling better soon.

GlutenWrangler Contributor

Missy,

I have chronic abdominal pain as well. I am 99% sure that it is attributed to Sphincter of Oddi Dysfunction in my case. Look it up to see if the symptoms apply to you. It could also be problems with your gallbladder, liver, pancreas, etc. Important questions that need to be asked: Where is the pain located? How long does it last when it comes? Is it sharp, dull, burning, stinging, etc? Is it accompanied by any other symptoms?

By the way I would never accept IBS as a diagnosis. It's the mark of a lazy doctor. There's always a reason as to why your digestive system isn't working right. Doctors love to treat the symptoms and not the cause. Don't accept that. I hope you feel better soon. Good luck,

-Brian

ravenwoodglass Mentor
I was diagnosed with Celiac a little over 2 years ago. Since then I have still had severe abdominal pain and want to be rushed to the ER at times. Four months ago, I had my second endoscopy to check for healing. I never had the blood test done. The healing came back a little better?????? My GI told me that because it had been over the 2 year mark, that was as good as it was going to get and sent me back to my family physician. She is now treating me, with what she calls, the worst IBS she has ever seen. I have been on numerous different medications and none are helping. Bentyl worked for about a month, I am now on Librax, 1 pill every 4 hours, after 2 hours, the pain returns.

Does anyone have chronic abdominal pain. I know my Celiac pain is different feeling pain then my IBS. I keep telling her that it isn't where my IBS pain typically is and that it doesn't feel the same. I am 36 yrs old and have had IBS diagnosed at 20.

Any suggestions on what to do next, where to go, anything that helped others.

After 2 years your villi should be more than 'a little better'. Have you checked every med you are on, either OTC or script for gluten? You mention Librax, I was on that for years. It was my doctors drug of choice for me because it contains Valium and he was convinced I needed a tranquilizer and refused to take one. For me this drug did next to nothing although it does help many folks. Be aware though that it is not a drug you can stop suddenly, you will need to taper the dose if you decide to stop taking it. Also it does react with a lot of other drugs including antiacids so you may want to google it for more info. I stopped it along with all my other drugs before my elimination diet and never needed to add any back in.

I agree also that you should consider removing casien and soy from your diet for a bit. It may be tough at first but when you are feeling better then you can add them back in and see of they may be a problem. You also may want to go with naturally gluten-free foods for a bit if you are not already. Many mainstream foods are not as safe as they look due to hidden barley or CC issues.


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



Celiac.com Sponsor (A8-M):



  • 4 weeks later...
Rocco C Newbie

Can you describe where your pain is? I have just come out of the hospital due to chronic pain and they said there was no apparent reason for the pain.

I have steady pain in my lower left front/side. It does not go away and does get worse if I eat.

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - SilkieFairy replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      IBS-D vs Celiac

    2. - par18 replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      IBS-D vs Celiac

    3. - trents replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      IBS-D vs Celiac

    4. - SilkieFairy replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      IBS-D vs Celiac

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,340
    • Most Online (within 30 mins)
      7,748

    Abbyyoung417
    Newest Member
    Abbyyoung417
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • SilkieFairy
      I realized it is actually important to get an official diagnosis because then insurance can cover bone density testing and other lab work to see if any further damage has been done because of it. Also, if hospitalized for whatever reason, I have the right to gluten-free food if I am officially celiac. I guess it gives me some legal protections. Plus, I have 4 kids, and I really want to know. If I really do have it then they may have increased risk. 
    • par18
      Been off this forum for years. Is it that important that you get an official diagnosis of something? It appears like you had a trigger (wheat, gluten, whatever) and removing it has resolved your symptom. I can't speak for you, but I had known what my trigger was (gluten) years before my diagnosis I would just stay gluten-free and get on with my symptom free condition. I was diagnosed over 20 years ago and have been symptom free only excluding wheat, rye and barley. I tolerate all naturally gluten free whole foods including things like beans which actually helps to form the stools. 
    • trents
      No coincidence. Recent revisions to gluten challenge guidelines call for the daily consumption of at least 10g of gluten (about the amount in 4-6 slices of wheat bread) for a minimum of 3 weeks. If possible, I would extend that two weeks to ensure valid testing.
    • SilkieFairy
      Thank you both for the replies. I decided to bring back gluten so I can do the blood test. Today is Day #2 of the Challenge. Yesterday I had about 3 slices of whole wheat bread and I woke up with urgent diarrhea this morning. It was orange, sandy and had the distinctive smell that I did not have when I was briefly gluten free. I don't know if it's a coincidence, but the brain fog is back and I feel very tired.   
    • knitty kitty
      @Jane02, I hear you about the kale and collard greens.  I don't do dairy and must eat green leafies, too, to get sufficient calcium.  I must be very careful because some calcium supplements are made from ground up crustacean shells.  When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly.  This is safe and nontoxic.  Vitamin D level should be above 70 nmol/L.  Lifeguards and indigenous Pacific Islanders typically have levels between 80-100 nmol/L.   Levels lower than this are based on amount needed to prevent disease like rickets and osteomalacia. We need more thiamine when we're physically ill, emotionally and mentally stressed, and if we exercise like an athlete or laborer.  We need more thiamine if we eat a diet high in simple carbohydrates.  For every 500 kcal of carbohydrates, we need 500-1000 mg more of thiamine to process the carbs into energy.  If there's insufficient thiamine the carbs get stored as fat.  Again, recommended levels set for thiamine are based on minimum amounts needed to prevent disease.  This is often not adequate for optimum health, nor sufficient for people with absorption problems such as Celiac disease.  Gluten free processed foods are not enriched with vitamins like their gluten containing counterparts.  Adding a B Complex and additional thiamine improves health for Celiacs.  Thiamine is safe and nontoxic even in high doses.  Thiamine helps the mitochondria in cells to function.  Thiamine interacts with each of the other B vitamins.  They are all water soluble and easily excreted if not needed. Interesting Reading: Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ Safety and effectiveness of vitamin D mega-dose: A systematic review https://pubmed.ncbi.nlm.nih.gov/34857184/ High dose dietary vitamin D allocates surplus calories to muscle and growth instead of fat via modulation of myostatin and leptin signaling https://pubmed.ncbi.nlm.nih.gov/38766160/ Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial https://pubmed.ncbi.nlm.nih.gov/31746327/ Vitamins and Celiac Disease: Beyond Vitamin D https://pmc.ncbi.nlm.nih.gov/articles/PMC11857425/ Investigating the therapeutic potential of tryptophan and vitamin A in modulating immune responses in celiac disease: an experimental study https://pubmed.ncbi.nlm.nih.gov/40178602/ Investigating the Impact of Vitamin A and Amino Acids on Immune Responses in Celiac Disease Patients https://pmc.ncbi.nlm.nih.gov/articles/PMC10814138/
×
×
  • 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.