Jump to content

  • 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):

Chronic Diarrhea

Miserable

Recommended Posts

Miserable Newbie
Miserable
Posted

Hi all,

I have been suffering from chronic diarrhea for over two years now, and it is seriously effecting my quality of life. I put it down to bad IBS but recently I have gotten so sick of the symptoms I went to my doctor to find out if there were any other underlying causes. He mentioned coeliac disease to me and I am now wondering if my symptoms fit. I have read a few posts on this forum and it seems to me that there are a lot of people who suffer from weight loss and lethargy but little mention of diarrhea. Is diarrhea a major symptom of coeliac disease? I am constantly tired even though I sleep over 12 hours a night but I have experienced no weight loss. On top of that I have become extremely sensitive to lactiose, so I have cut that out of my diet and it has helped. I have always been lactose intolerant, but it is worse now than before. Also, would I be able to ask for feedback on test results I am expecting on Monday (blood and stool)?

Thank you for any feedback I get given on this!

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

Celiac.com Sponsor (A8-M):


shopgirl Contributor
shopgirl
Posted

You're definitely a Celiac candidate but if you want accurate test results, you need to keep eating gluten. Cutting it out for even a short time can effect your tests. You need to keep it in your system.

And I'm surprised you didn't see diarrhea as a symptom since that's always been the classic symptom of the disease although many of us don't have it.

Miserable Newbie
Miserable
Posted
  • Author

Thank you for the feedback. I am not cutting out any gluten at the moment because I am mindful that it would effect future tests. Have you had an endoscopy? What is it like? It doesn't sound pleasant....I think that I will probably press for that to make certain that I don't have coeliac disease. As I said, blood tests come in on Monday. What constitutes a result of coeliac disease?

shopgirl Contributor
shopgirl
Posted

Before the endoscopy, they give you a small cocktail of drugs similar to cold medicines to make you very drowsy. You're technically responsive

Marz Enthusiast
Marz
Posted

Welcome, I hope you get some firm results from the blood test and endoscopy. Please do post your results, we can help explain them if the doctor isn't being helpful. Also I hope the doctor has requested the full celiac blood test panel?

Yes, diarrhea and chronic fatigue are classic signs, with or without weight loss. Most doctors just look out for the classic symptoms, but as someone else mentioned, there's a huge range of symptoms associated with celiac disease/gluten intolerance.

Even if the test and endoscopy comes back negative, it's quite possible you're still gluten-intolerant. Once tests are done (including endoscopy), you can immediately start the gluten-free diet, and see if it makes a difference to your symptoms. Some people follow that up with a "gluten challenge" a few weeks later to see what response the re-introduction of gluten will do, a re-appearance of symptoms pretty much conclusively tells you gluten's the problem. You won't need to do that if your tests are positive though :)

Just note that if you do try the gluten-free diet, you need to be strict to see good results quickly - a small amount of gluten will still keep the inflammation going in your system.

It can take a few days to several weeks to see improvement, I hope in your case it will be rapid relief from the big d! :)

Miserable Newbie
Miserable
Posted
  • Author

Thank you for describing the endoscopy test for me. It doesn't sound as bad as I was imagining. I am getting my test results on Monday for blood and stool and I will post them here for feedback. I really hope that I can get this diarrhea cleared up, I really can't go on living like this! Thanks for your support.

luvs2eat Collaborator
luvs2eat
Posted

Thank you for describing the endoscopy test for me. It doesn't sound as bad as I was imagining. I am getting my test results on Monday for blood and stool and I will post them here for feedback. I really hope that I can get this diarrhea cleared up, I really can't go on living like this! Thanks for your support.

Endoscopy is about the best test I've ever had! There's no yucky prep involved... they knock you out good... I wasn't responsive at all, I was OUT, completely under anesthesia. I work up w/ just a little scratchy throat. I went home and took a nice nap.

Diarrhea was my main symptom. Immodium helped and my doctor told me I could take it every day if I needed to.

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

Celiac.com Sponsor (A8-M):


Sammyj Apprentice
Sammyj
Posted

Endoscopy is about the best test I've ever had! There's no yucky prep involved... they knock you out good... I wasn't responsive at all, I was OUT, completely under anesthesia. I work up w/ just a little scratchy throat. I went home and took a nice nap.

Diarrhea was my main symptom. Immodium helped and my doctor told me I could take it every day if I needed to.

I eliminated diarrhea when I eliminated Coffee.

Miserable Newbie
Miserable
Posted
  • Author

I am already avoiding coffee and dairy products. Both have improved the diarrhea but not gotten rid of it. It is especially bad in the mornings, and I suffer from the moment I wake up. I am confused about one thing: for coeliacs, do they experience diarrhea after eating gluten or at any time of the day. I don't feel any better or worse immediately after eating bread or other glutens. Is that normal for someone with coeliac disease?

Miserable Newbie
Miserable
Posted
  • Author

I got my test results today for coeliac disease and it came back negative, less than 5. So I guess that I don't have coeliac disease. The diarrhoea is still a mystery, I am booked for a colonoscopy in a few weeks time. Would coeliac disease show up on that? Or would it only be on an endoscopy?

shopgirl Contributor
shopgirl
Posted

Celiac can't be diagnosed through a colonoscopy

  • 2 months later...
andreae2 Newbie
andreae2
Posted

Hey Miserable

Please give us an update.

I'm new to this forum, and have similar symptoms as you. I have had the colonscopy and gastroscopy (at the same time!!) and I'm not celiac. I believe I may still have gluten intolerance.

I am day 9 into a gluten/dairy/sugar free diet and am having diarrhoea days 5, 6, 7 and 9. I think raw nuts are causing my diarrhoea, so today I am cutting out nuts and tahini (which I was really enjoying!!!). Hopefully I'll see some improvement soon.

I am 97kgs, 44, female and have suffered from IBS on and off for most of my adult life. I also suffer really bad back and period pain. 18 months ago I had a procedure which burned the inside lining of my uterus, so the period pain has lessened 90%. The back pain and IBS symptoms continue. This is my major last ditch attempt to work out my dietary intolerances, so I can deal with whatever I need to deal with. Sugar cravings are gone, I'm aiming to keep it that way!

Love to hear an update of how you are going.

:)

Archived

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

Go to topic listing

  • 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. trents
      - trents replied to ThomasA55's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Iron loss and potential celiac.

      Being as how you are largely asymptomatic, I would certainly advise undertaking a gluten challenge in order to get formal testing for celiac disease. We have many forum participants who become violently ill when they undertake a gluten challenge and they therefore can't carry through with it. That doesn't seem to be the case with you. The reason I think it...
    2. ThomasA55
      - ThomasA55 replied to ThomasA55's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Iron loss and potential celiac.

    3. trents
      - trents replied to ThomasA55's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Iron loss and potential celiac.

      Welcome to the celiac.com community, @ThomasA55! Before I give my opinion on your question about whether or not you should undergo a gluten challenge, I would like to know how you react when you get a good dose of gluten? Are you largely asymptomatic or do you experience significant illness such as nausea and diarrhea? You mentioned intermittent joint...
    4. Joseph01
      - Joseph01 replied to bethmon's topic in Gluten-Free Foods, Products, Shopping & Medications
      14

      We Keep Getting Glutened With Vegetable Oil

      This is way past due for your post. I have Celiac and have been recovering for more than a year. Doing well. Used Essential oil to day to fry some chicken. Read the label all good. Then ate some chicken. Here comes the gluten reaction. I haven't had a gluten reaction since year. I am angry. I have been so careful with this crap and don't wan't any...
    5. ThomasA55
      - ThomasA55 posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Iron loss and potential celiac.

      Hey everyone. I'm a young adult who had very high iron in 2024. 64% saturation 160 ferritin. In 2025 I had far lower iron. 26% saturation and 130 ferritin. I know this is still in range but it seems to be a large drop. That combined with the fact that I developed some intermittent joint pain between the two years makes me wonder if I could be celiac. My dietary...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      134,086
    • Most Online (within 30 mins)
      10,442
    Joseph01
    Newest Member
    Joseph01
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.7k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • trents
      Iron loss and potential celiac.

      By trents · Posted

      Being as how you are largely asymptomatic, I would certainly advise undertaking a gluten challenge in order to get formal testing for celiac disease. We have many forum participants who become violently ill when they undertake a gluten challenge and they therefore can't carry through with it. That doesn't seem to be the case with you. The reason I think it is important for you to get tested is that many or most people who don't have a formal diagnosis find it difficult to be consistent with the gluten-free diet. They find ways to rationalize that their symptoms are due to something other than celiac disease . . . especially when it becomes socially limiting.  The other factor here is by being inconsistent with the gluten free diet, assuming you do have celiac disease, you are likely causing slow, incremental damage to your gut, even though you are largely asymptomatic. It can take years for that damage to get to the point where it results in spinoff health problems.
    • ThomasA55
      Iron loss and potential celiac.

      By ThomasA55 · Posted

    • trents
      Iron loss and potential celiac.

      By trents · Posted

      Welcome to the celiac.com community, @ThomasA55! Before I give my opinion on your question about whether or not you should undergo a gluten challenge, I would like to know how you react when you get a good dose of gluten? Are you largely asymptomatic or do you experience significant illness such as nausea and diarrhea? You mentioned intermittent joint pain before you began experimenting with a low gluten diet. Anything else?
    • Joseph01
      We Keep Getting Glutened With Vegetable Oil

      By Joseph01 · Posted

      This is way past due for your post.  I have Celiac and have been recovering for more than a year.  Doing well.  Used Essential oil to day to fry some chicken.  Read the label all good.  Then ate some chicken.  Here comes the gluten reaction.  I haven't had a gluten reaction since year.  I am angry.   I have been so careful with this crap and don't wan't any set backs!!!!! Good luck to you with your post.   Celiac is HELL!
    • ThomasA55
      Iron loss and potential celiac.

      By ThomasA55 · Posted

      Hey everyone. I'm a young adult who had very high iron in 2024. 64% saturation 160 ferritin. In 2025 I had far lower iron. 26% saturation and 130 ferritin. I know this is still in range but it seems to be a large drop. That combined with the fact that I developed some intermittent joint pain between the two years makes me wonder if I could be celiac. My dietary intake of iron was pretty steady (mostly in the form of red meat). I did carnivore (therby eliminating gluten) for a bit after the second test and felt improvements in my joints and digestion. I still consume gluten occasionally socially, for religious reasons, and through cross contamination/food sharing. For these reasons, I would need to know if I had it, because although my lifestyle is low gluten its not at the strict level it should be if it turned out I was celiac. I will get a gene test first and hope I don't have DQ2.5,DQ2.2, or DQ8, but if I had any combination of those do you guys think I need proper screening through a gluten challenge / blood test? Other context. From 2024-2025, my b12 stayed about the same in the mid 600s folate went up slightly, but I heard it takes longer for celiac to affect the absorption of these. ANA negative, CRP low, ESR low.  I don't know how much noise exists around the saturation and ferritin, but it caught my eye and Celiac seemed like a possibility. I'm under no illusion that it is probable that I have celiac, only that it may be worth screening given my overall profile.   
×
×
  • Create New...