Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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

Help How Common Is Abdominal/digestion Pain - Sometimes Severe?


Klauren

Recommended Posts

Klauren Apprentice

I had SEVERE abdominal pain for weeks and eventually noted that it seemed associated with eating and stooling. The pain has subsided to some extent, but I did have an attack yesterday. The pain is inside AND to the touch, its so bad I cannot wear any pants because the waist hits me where it hurts. The doctors have said they find this odd and they don't see Celiac patients with severe abdominal pain like this.

PLEASE let me know what you think. I am struggling with anxiety and even though I have a firm Celiac diagnosis, after 2 weeks and 2 days gluten free, I am still VERY weak and tender above the navel, cannot wear any pants and have gained little weight. My appetite has come back a bit, but I wouldn't say its good. I know everyone is different, but has ANYONE here had this kind of experience? I worry that there is something else the matter??!!

Thanks for your help!

-Kim


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



Celiac.com Sponsor (A8-M):



GFinDC Veteran

Hi Kim,

You should certainly see your doctor about continued pain like that. It could very well be caused by something else as you said.

As far as your doctors not thinking celiac can cause pain though, I'd say they are way off the mark there. At least in my experience they are.

oceangirl Collaborator

Yes, you may want to get another opinion about what is going on.

However! Are they KIDDING?????!!!!! No abdominal pain with celiac? They do not know what they are talking about. The pain for me was off the charts! And, I had given natural birth to a 10 pound baby (and another) and had kidney stones prior to that. I have experience with pain.

Get another opinion.

Feel better,

lisa

whitball Explorer

I want to know what makes the doc think that your stomach doesn't hurt? It's like having a male doc tell a woman that having aunt flo visit does not cause mood swings! Geeez! I have severe stomach pain when I accidentally ingest gluten. I would suggest that you check the pain out though. If the doc doesn't listen, find someone else if it's possible.

teemaree Apprentice

I agree.... stomach pains were a definate for me also.....

that's exactly how I know I have been glutened.... that's the very first sign I get!

even before I knew I had celiac , my husband use to say to me, why are you holding your stomach all the time?...

Are you in pain?....

Then when I went gluten free..... I couldn't believe that my stomach wouldn't end up in pain each time I ate...

Klauren Apprentice

Great fast responses - THANKS SO MUCH! Actually the pain was very very severe from the time I gave birth 8 1/2 weeks ago (and has surgery, two likely triggers, not to mention the stress of child number FOUR) until I went to the ER (3 1/2 weeks ago) and I was given "bowel rest" - basically I was starved and that helped the pain, but in hindsight it accelerated the malnutrition, I suppose. Anyway, the pain has been less severe in the last 3 weeks and I am slightly stronger since starting the diet but it is going VERY slow!.

QUESTION - just to clarify, you all had severe pain and it was pain to the touch as well as digestion pain? I am going to keep working on whether there is something else going on, but I am relieved to hear that what I have had could be attributable to Celiac and there doesn't have to be something else wrong.

THANKS!!!

Kim

GlutenGuy36 Contributor
Great fast responses - THANKS SO MUCH! Actually the pain was very very severe from the time I gave birth 8 1/2 weeks ago (and has surgery, two likely triggers, not to mention the stress of child number FOUR) until I went to the ER (3 1/2 weeks ago) and I was given "bowel rest" - basically I was starved and that helped the pain, but in hindsight it accelerated the malnutrition, I suppose. Anyway, the pain has been less severe in the last 3 weeks and I am slightly stronger since starting the diet but it is going VERY slow!.

QUESTION - just to clarify, you all had severe pain and it was pain to the touch as well as digestion pain? I am going to keep working on whether there is something else going on, but I am relieved to hear that what I have had could be attributable to Celiac and there doesn't have to be something else wrong.

THANKS!!!

Kim

Yes I had severe abdominal pains for 9-10 months before they would even send me to a gastro doc. Then I had all kinds of tests. Colonoscopy, endoscopy, mri and cat scans. It would be a good idea just to get it checked out to make sure nothing else is going on.

Celiac can cause you sever abdominal pains. I know first hand.


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



Celiac.com Sponsor (A8-M):



oceangirl Collaborator

I'm not sure about the pain to the touch so I do think it's a good idea for you to follow up. However, it would be no surprise to hear gluten can cause that, too. You absolutely need a new doctor.

take care,

lisa

mimommy Contributor

I can only speak from the point of view of an observer here, but from what I witnessed of my daughter's symptoms her NUMBER ONE complaint was of severe abdominal pain--and yes, it hurt her to be touched there. In fact, she could show me and the docs. the exact place it hurt (always in the area of the stomach, below the ribs and way above the navel.) But, yes, definitely seek medical attention if it hasn't improved. There are other health issues with similiar symptoms, such as pancreatitis, liver problems, and gall bladder or appendix. After my c-section I had pain (not severe) for 7 months, and could feel it all the way up to my digestive organs. Pain can and often does travel, especially if muscle or nerve tissue has been severed. Feel better!

Ursa Major Collaborator

I had absolutely horrible pain before I diagnosed myself. My stomach was so inflamed that wearing a bra or tight pants was impossible, it caused so much pain.

So, not only did I have severe stomach and bowel cramps, but just slightly poking me in the stomach area (just below the rib cage, but also lower) would make me cry out if caught unawares.

Its only been two weeks for you. It took me six months before that pain subsided. Also, I was unable to eat anything raw for those six months. I had to cook all vegetables and even fruits until well done, or they would cause the terrible stomach pain and explosive D within minutes of eating them. That includes salad.

I also couldn't eat any gluten-free replacement foods (bread, cookies etc.) or dairy products for many months.

So, seeing you had the same symptoms as me, you may have to eliminate raw foods as well. They are hard to digest.

  • 2 years later...
brookevale Newbie

Thank you for confirming that we do indeed feel pain--terrible pain. I have three kids and the abdominal pain I have been experiencing is off the charts. I can barely focus at work. I cry all the time as it is so intense and NOTHING helps it. My GI tells me the prilosec should work--well, it doesn't! I'm frustrated and wonder if I will ever feel normal.

mushroom Proficient

What you have to concentrate on right now is healing your gut, which is suffering from inflammation from the gluten. Make things easy for it. Eat only foods that are easily digestible, avoid raw foods and salads and things with hard skins which are tough to digest. Since it is coming on winter, fish out your crockpot (or buy one) and make lots of soups and casseroles that are nutritious, gluten free and easy to digest. Take a good quality probiotic to help provide your gut with good flora, and take a digestive enzyme with meals to give the pancreas a helping hand.

I hope your pain eases soon and yes, one day you will feel normal again, but we can't tell you when that day will be. You will suddenly recognize it :D Your GI obviously doesn't have celiac disease :blink:

beebs Enthusiast

Have they done an ultrasound? It really sounds like you need one!

beebs Enthusiast

What kind of pain is it? Sharp.Dull/ burning. On a scale of 1 to10 how bad? Is it similar to labour? Does it wax and wane or is it there all the time. When you say its related to stooling what do you mean? That you feel better after a BM etc etc?

sandsurfgirl Collaborator

Abdominal pain not part of celiac???? Please ask those doctors for me if they are smoking crack. Tell them Heather wants to know "Are you on crack?" WTF? YES absolutely celiac causes pain.

Now that being said, you may want to have more testing done to be certain it isn't something else, but honestly if you have a choice, get a new doctor. Print out this page and show it to them. That's ridiculous to say that. Again W.T.F. is wrong with doctors?

You are only gluten free for 2 weeks and that is just a baby in celiac world. It takes awhile to heal and for me it was 6 months. I had improvements right away with lots of things, but full healing was a long time.

We need to make sure you are totally gluten free. New toaster. New Plastic and wooden cooking utensils. Get rid of your colander.

Check all of your bath and beauty products for wheat and replace them. It's too hard to make sure no face powder gets on your mouth. If wheat is in your soap or lotions then it's on your hands when you touch your food.

Eat CLEAN. Don't go buying gluten free donuts and cookies now. Your body needs good fuel to heal all that damage and it needs simple easy to digest foods. Veggies, fruits, lean meats, rice - no more than 3 ingredients is a good rule.

Tinkyada pasta is good- just made of rice. Gluten Free Pantry Basic Sandwich bread has pretty simple ingredients too compared to other brands.

Most of us cut dairy and soy for awhile to promote healing and some cut nightshades- tomatoes, potatoes and eggplant. Are bell peppers a nighshade too? I forget. I need an oldbie to remind me.

mushroom Proficient

Are bell peppers a nighshade too? I forget. I need an oldbie to remind me.

Yes, all bell peppers, chilis, paprika, members of the nicotine family too

Takala Enthusiast

Reminder that the beginning of this thread is from 2009.

Your physician may be working off of medical theory from 1909. :P

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      128,158
    • Most Online (within 30 mins)
      7,748

    Elaine Gilbert
    Newest Member
    Elaine Gilbert
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.1k
    • Total Posts
      70.7k

  • Celiac.com Sponsor (A22):




  • Who's Online (See full list)

    • There are no registered users currently online

  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      Did your symptoms improve after going on a gluten-free diet?
    • Scott Adams
      Thank you for sharing your genetic test results and background. Your results indicate you carry one half of the DQ2 heterodimer (DQA1*05), which is associated with a very low celiac disease risk (0.05%). While most celiac patients have either DQ2 or DQ8, these genes are also present in people without celiac disease, so the test alone doesn’t confirm a diagnosis. Since you’ve been gluten-free for 10 years, traditional diagnostic methods (like endoscopy or blood tests) would not be reliable now. If an official diagnosis is important to you, consider discussing a gluten challenge with your doctor, where you reintroduce gluten for a period before testing. Alternatively, you could focus on symptom management and dietary adherence, as your gluten-free diet seems to be helping. Consulting a gastroenterologist or celiac specialist could provide further clarity.  Here is more info about how to do a gluten challenge for a celiac disease blood panel, or for an endoscopy: and this recent study recommends 4-6 slices of wheat bread per day:    
    • Scott Adams
      @cvz Thank you for sharing your daughter’s story. It sounds like she is managing multiple complex conditions with great care and diligence. It’s encouraging to hear that she is compliant with her gluten-free diet and that her Addison’s disease symptoms are under control. The addition of electrolytes seems like a thoughtful suggestion, especially given her fluid intake. It’s also reassuring that she hasn’t shown noticeable symptoms from accidental gluten exposure, though it’s understandable how challenging it can be to monitor for such incidents. The unexplained high lipase levels are intriguing—perhaps further investigation or consultation with a specialist could provide more clarity. Wishing you both continued strength and success in managing her health. Please keep us updated on her progress!
    • Kj44
      Hello I received this in a genetic lab test I requested from my provider.    The patient is positive for DQA1*05, one half of the DQ2 heterodimer. The celiac disease risk from the HLA DQA/DQB genotype is approximately 1:1842 (0.05%). This is less than the 1% risk in the general population. Allele interpretation for all loci based on IMGT/HLA database version 3.55 HLA Lab CLIA ID Number 34D0954530 Greater than 95% of celiac patients are positive for either DQ2 or DQ8 (Sollid and Thorsby, (1993) Gastroenterology 105:910-922). However these antigens may also be present in patients who do not have Celiac disease.   Some background, I have been eating gluten free for about 10 years now. I have never had an official celiac diagnosis due to endoscopy and labs tested after I had already been eating gluten free for over 1 year. I was constantly sick and told you slowly remove foods and see what effects my symptoms. I have also come to realize that I have other symptoms of celiacs and recently requested the genetic testing shown above.    I am looking to see if anyone has other recommendations for testing or just to clarify the results for me as I feel the official diagnosis could be helpful but I am not positive that it is even true for me. 
    • cvz
      My daughter, age 48, has Down syndrome, hypothyroidism, Addison's disease, and Celiac disease, which was diagnosed based on blood tests last July.  After a small intestine biopsy last fall, we were told that she has severe celiac disease.  She is taking both levothyroxine and leothyronine for her hypothyroidism and both hydrocortisone and fludrocortisone for Addison's disease.  She also takes Folic acid, magnesium, vitamin B-12, DHEA (DAGA), and a multivitamin.  In July, she started on a gluten-free diet and is very compliant.  She has had constipation and diarrhea issues all her life and now controls the constipation with Miralax, prunes, and apricots.  Shel has only very occasional syncopes or vasovagal events and muscle aches in her upper back and neck.  She drinks 4-6 or more 12 oz bottles or of liquid per day.  Her doctor has just suggested adding electrolytes to one of those bottles daily.   We are sorry to learn about the issues you are having and would like to stay in touch.  We do not know anyone else with both Addison's disease and celiac disease.  So far, she has no recognizable symptoms.  We are doing our best to keep her gluten-free, but have no way of knowing if she has had an exposure to it unless we catch it ourselves.  For example, a few weeks ago, a restaurant mistakenly breaded her fish, and I did not notice it until she had eaten most of it.  She had no identifiable symptoms of the exposure then or days later. By the way, the reason she was screened for Celiac disease was that her blood lipase levels were unexplainably high.  They still are.  We have no idea why.    
×
×
  • Create New...