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

Pooped Out Pancreas?

vbecton

By vbecton
in Coping with Celiac Disease

Recommended Posts

vbecton Explorer
vbecton
Posted

Went back to the GI doctor yesterday for test results. I'm steadily getting worse. My bowels are in full-attack, military distress, calling all cars mode!!! Can't hardly leave the house for fear of "D" as I never know when it's going to strike. It's the sneak attack D, the kind without much warning.

The doctor thinks my pancreas could be the problem, but he's treating me currently for SIBO (& Giardia for good measure), then he'll do my colonoscopy in 10 days to check for colitis.

Here's the deal, I'm dropping weight, but eating 3500 calories per day. All food makes me sick, I eat anyway. My bowels contain large chunks of undigested foods. My malabsorption continues to be a major problem (amino acids, some vitamins). I turned in a stool sample today to test for parasites (that was my request ;) ), and a Sudan Fat Stain, which I think my doctor wants as a baseline?

What tests do you know of that could test for a faulty pancreas? One that obviously can't supply the right enzymes to break down food? My GI said something about a 3 day stool sample that would measure fat dumping. I'm determined to find the culprit...so bring on the suggestions!

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

Celiac.com Sponsor (A8-M):


ravenwoodglass Mentor
ravenwoodglass
Posted

Here is a link to a WebMD page on pancreatic testing. Hope it helps.

Open Original Shared Link

Roda Rising Star
Roda
Posted

I just did a 24 hour fecal fat quantatitive test. Very similar to the 3 day. It tests how much fat is in the stool. If over a certain amount then you have "malabsorption". Mine was 25.8 with a reference range of 0-6. However it did not differentiate what kind of "fat" it was. THe lab where mine was run I found that there is a fecal fat qualitative test that can tell whether it is neutral fats or spit fats. This seems to me that whichever it was it could direct them to the pancreas/gallbladder as a culprit. I wish I had that done also, but at the time I didn't know anything about it. I am thinking my problem is either one just don't know which one to blame right now. I am taking some pancreatic enzymes I bought at the health store (I did discontinue them for about a week before testing) and they do help. My loose/diarrhea yellow stools have gotten more normal and are not yellow anymore. However I still continue to see visible fat, but not as much. I'm thinking maybe a rx strentgh enzyme might help but I also get a pinching/ache sensation in my right upper abdomen too. The nurse called me yesterday and said the doctor wanted me to take prednisone for a month and follow up. I said I didn't want to do anything especially steroids until I discuss some things in person. I have an appointment next Tuesday.

Open Original Shared Link

vbecton Explorer
vbecton
Posted
  • Author

Here is a link to a WebMD page on pancreatic testing. Hope it helps.

Open Original Shared Link

Thanks ravenwood, I guess we are on the right track with the stool testing. My GI said the blood testing was too non-specific to really give us anything to go on. He also said the pancreas isn't easy to diagnosis. There are lots of things to rule out first, unless it's an acute problem.

vbecton Explorer
vbecton
Posted
  • Author

I just did a 24 hour fecal fat quantatitive test. Very similar to the 3 day. It tests how much fat is in the stool. If over a certain amount then you have "malabsorption". Mine was 25.8 with a reference range of 0-6. However it did not differenciate what kind of "fat" it was. THe lab where mine was run I found that there is a fecal fat qualitative test that can tell whether it is neutral fats or spit fats. This seems to me that whichever it was it could direct them to the pancreas/gallbladder as a culprit. I wish I had that done also, but at the time I didn't know anything about it. I am thinking my problem is either one just don't know which one to blame right now. I am taking some pancreatic enzymes I bought at the health store (I did discontinue them for about a week before testing) and they do help. My loose/diarrhea yellow stools have gotten more normal and are not yellow anymore. However I still continue to see visible fat, but not as much. I'm thinking maybe a rx strentgh enzyme might help but I also get a pinching/ache sensation in my right upper abdomen too. The nurse called me yesterday and said the doctor wanted me to take prednisone for a month and follow up. I said I didn't want to do anything especially steroids until I discuss some things in person. I have an appointment next Tuesday.

Open Original Shared Link

Good info! My doc did mention there was a qualitative and a quantitative test. There was so much information talked about during our meeting that I can't remember my head from my tail, but I do remember him saying he wanted a full 3 days of specimen to get an average of fat. But, I'll email him to make sure he's looking for both types of fat.

Did you have undisgested food in your poo? I am just noticing this myself. I usually don't inspect my goods, I just check the color, the size and flush :P .

ravenwoodglass Mentor
ravenwoodglass
Posted

Thanks ravenwood, I guess we are on the right track with the stool testing. My GI said the blood testing was too non-specific to really give us anything to go on. He also said the pancreas isn't easy to diagnosis. There are lots of things to rule out first, unless it's an acute problem.

Glad the info was helpful. You asked in another post about seeing undigested food. when I had pancreatitis from an adverse reaction to a drug I was seeing undigested food. Everything looked the same when it came out as when it went in. Sorry for the TMI. The pancreatic enzymes helped with that pretty quickly. Make sure to mention the undigested food to your doctor if you haven't already.

Roda Rising Star
Roda
Posted

Did you have undisgested food in your poo? I am just noticing this myself. I usually don't inspect my goods, I just check the color, the size and flush :P .

Yes, and more so when not taking the enzymes. It also would get very, what I consider acidic, because it caused irritation and burning in other areas that I had to get a steroid/nystatin cream from the gyn. At my worst I was fearful of not making it to the bathroom in time and was having a seeping problem. UGG! THe other thing that has me thinking gb/pancreas is the fact I'm not loosing weight and I do not have impared absorption of nutrients. Everything in that catagory is A.O.K. When I eat no fat at all my BM are almost normal.

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

Celiac.com Sponsor (A8-M):


kayo Explorer
kayo
Posted
My loose/diarrhea yellow stools

I'm glad this was mentioned as it describes my symptoms too. I'm also seeing undigested food. Well, hello carrots! I googled yellow stool and the pancreas was mentioned which scares the dickens out of me. A good friend of mine who also had RA and took the same RA med as I do died of pancreatic cancer a few years ago.

The pain I get is in the front just under my last set of ribs, if that makes sense. It's lower than my stomach which I would estimate is under my ribs but closer to the base of my breast. So I can't tell which organ it is - pancreas or colon?

I'm on a histamine blocker which seems to be helping but the D hasn't subsided yet. The improvement is the pain is less sharp, less annoying and even though I have big D it's not the 'OMG, I need to find a bathroom now' kind of D. It's still yellow though.

The other reason I think it might be my pancreas is I can't handle sugar on an empty stomach - I get severe pain in that spot. I've had to experiment to find a non-sweet breakfast that wouldn't give me pain (sweet potatoes work best). I'm not a breakfast person at all and hate to eat in the morning but need to take the med at breakfast time 15-20 mins before eating.

At last check my vitamin levels were all good. I'm perplexed unless this is all symptoms of too much histamine and/or recovery from SIBO.

Archived

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

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


  • Member Statistics

    • Total Members
      128,252
    • Most Online (within 30 mins)
      7,748
    MI-Hoosier
    Newest Member
    MI-Hoosier
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.1k
    • Total Posts
      70.8k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • MI-Hoosier
      Test uncertainty

      By MI-Hoosier · Posted

      Hi,  I was recently diagnosed with stage 3 NASH and doctor is concerned something is caused my disease to progress quicker than they would expect.   During blood tests a celiac screen was pulled as my mom is a celiac. My ttg was a 49.4 (normal >15) but my endomysial antibody was negative. I have never had gluten symptoms and no issues with bread and am 54. Do I need a biopsy to rule celiac in or out with this mixed test? Any thoughts are appreciated.  
    • Sunshine4
      Neurologic symptoms - Muscle Twitching and Hand Tremors

      By Sunshine4 · Posted

      Many apologies for somehow changing your first name Scott! 
    • Sunshine4
      Neurologic symptoms - Muscle Twitching and Hand Tremors

      By Sunshine4 · Posted

      Mark, do you have suggestions as to celiac centers that could be helpful? Oklahoma/Texas neurologists have only offered me the “eat gluten free” advice and then when I ask about the hands or muscle twitching they said they just don’t know. I appreciate your great information on supplements, thank you for your help!  Scott, do you have suggestions as to celiac centers that could be helpful? Oklahoma/Texas neurologists have only offered me the “eat gluten free” advice and then when I ask about the hands or muscle twitching they said they just don’t know. I appreciate your great information on supplements, thank you for your help! 
    • Scott Adams
      Neurologic symptoms - Muscle Twitching and Hand Tremors

      By Scott Adams · Posted

      It sounds like you’ve been through a challenging journey since your celiac diagnosis, especially with the unexpected neurologic symptoms like muscle twitching and hand tremors. While celiac disease is primarily known for gastrointestinal issues, it’s important to recognize that it can also manifest in non-GI ways, including neurological symptoms. Research has shown that celiac disease can sometimes be linked to conditions like gluten ataxia, peripheral neuropathy, or even myoclonus (involuntary muscle twitching), which might explain what you’re experiencing. The fact that your symptoms have fluctuated with dietary changes suggests a possible connection, even if it’s not yet fully understood by your local neurologists. It might be worth seeking out a specialist who has experience with celiac-related neurological issues or consulting with a celiac-focused research center. In the meantime, staying strict with your gluten-free diet is a good step, as even small amounts of gluten can trigger immune responses that may contribute to these symptoms. You’re not alone in this—many with celiac report similar struggles, and connecting with online communities or support groups could provide additional insights and reassurance. The most common nutrient deficiencies associated with celiac disease that may lead to testing for the condition include iron, vitamin D, folate (vitamin B9), vitamin B12, calcium, zinc, and magnesium.  Unfortunately many doctors, including my own doctor at the time, don't do extensive follow up testing for a broad range of nutrient deficiencies, nor recommend that those just diagnosed with celiac disease take a broad spectrum vitamin/mineral supplement, which would greatly benefit most, if not all, newly diagnosed celiacs. Because of this it took me decades to overcome a few long-standing issues I had that were associated with gluten ataxia, for example numbness and tingling in my feet, and muscle knots--especially in my shoulders an neck. Only long term extensive supplementation has helped me to resolve these issues.      
    • Sunshine4
      Neurologic symptoms - Muscle Twitching and Hand Tremors

      By Sunshine4 · Posted

      I was initially diagnosed with celiac in June 2024. I had no G.I. issues but got chest and pelvic pain. I changed my diet – although I was not great at watching cross-contamination – and had no problems until the end of October 2024 when I started getting headaches. At the end of December 2024 the headaches ended but I started having twitching throughout my body. Not long-term twitching just a fast burst twitch. In addition, I had tremors start in both of my hands. Sometimes it is stronger in one hand than the other and sometimes it seems to die off and then comes back. This has gone on for two months and the twitching has gradually lessened although sometimes it comes back with a vengeance. I have been really strict about  my diet and cross contamination so I feel these symptoms are related to my celiac disease although I’m not certain and I’m unsure that the strict diet is what has helped. I’ve been tested for everything -  MS, lupus, ALS and a variety of other things which were all negative. I can only relate these symptoms to my celiac but no neurologist in my area seems to know anything about celiac causing anything other than gastric issues. I’m so frustrated and just looking for others that have had similar symptoms and doctors that are more knowledgeable about celiac and neuro issues. Thank you! 
×
×
  • Create New...