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 Diarrhea


Miserable

Recommended Posts

Miserable Newbie

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

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

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

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

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

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

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

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

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

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

Celiac can't be diagnosed through a colonoscopy

  • 2 months later...
andreae2 Newbie

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.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,635
    • Most Online (within 30 mins)
      7,748

    dysmathers
    Newest Member
    dysmathers
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • deanna1ynne
      Dd10 was tested for celiac four years ago bc two siblings were dx’d (positive labs and biopsies). Her results at the time were positive ema  and ttg (7x the UL), but a negative biopsy. We checked again three months later and her ttg was still positive (4x the UL), but ema and biopsy were negative. Doc said it was “potential celiac” and to keep eating gluten, but we were concerned about harming her growth and development while young and had her go gluten-free because we felt the labs and ema in particular were very suggestive of early celiac, despite the negative biopsies. She also had stomach aches and lethargy when eating it. We just felt it’d be better to be safe than sorry. Now, four years later, she doesn’t want to be gluten-free if she doesn’t “have to be,” so underwent a 12 week gluten challenge. She had labs done before starting and all looked great (celiac panel all negative, as expected.) Surprisingly, she experienced no noticeable symptoms when she began eating gluten again, which we felt was a positive sign. However, 12 weeks in, her labs are positive again (ttg 4x the UL and ema positive again as well). Doc says that since she feels fine and her previous two biopsies showed nothing, she can just keep eating gluten and we could maybe biopsy again in two years. I was looking up the ema test and the probability of having not just one but two false positives, and it seems ridiculously low.  Any advice? Would you biopsy again? She’s old enough at this point that I really feel I need her buy-in to keep her gluten-free, and she feels that if the doc says it’s fine, then that’s the final word — which makes me inclined to biopsy again and hope that it actually shows damage this time (not because I want her to have celiac like her sisters, but because I kind of think she already does have it, and seeing the damage now would save her more severe damage in the long run that would come from just continuing to eat gluten for a few more years before testing again.)  Our doc is great - we really like him. But we are very confused and want to protect her. One of her older sibs stopped growing and has lots of teeth problems and all that jazz from not catching the celiac disease sooner, and we don’t want to get to that point with the younger sis. fwiw- she doesn’t mind the biopsy at all. It’s at a children’s hospital and she thinks it’s kind of fun. So it’s not like that would stress her out or anything.
    • Inkie
      Thanks for the replies. I already use a gluten-free brand of buckwheat flakes I occasionally get itchy bumps. I'm still reviewing all my food products. I occasionally eat prepackaged gluten-free crackers and cookies, so I'll stop using those. I use buckwheat flakes and Doves Farm flour as a base for baking. Would you recommend eliminating those as well? It's a constant search.
    • Wheatwacked
      Gluten free food is not fortified with vitamins and minerals as regular food is.  Vitamin deficiencies are common especially in recently diagnosed persons,  Get a 25(OH)Vitamin D blood test. And work on raising it.  The safe upper blood level is around 200 nmol/L.    "Low serum levels of 25(OH)D have been associated with increased risk of autoimmune disease onset and/or high disease activity. The role of vitamin D in autoimmune diseases   🏋️‍♂️Good job!   I find the commercial milk will give me mild stomach burn at night, while pasture/grassfed only milk does not bother me at all.  While you are healing, listen to your body.  If it hurts to eat something, eat something else.  You may be able to eat it later, or maybe it is just not good for you.  Lower your Omega 6 to 3 ratio of what you eat.  Most omega 6 fatty acids are inflammation causing.    The standard american diet omega 6:3 ratio is estimated at upward of 14:1.  Thats why fish oil works
    • Inkie
      I  notice a reaction to tea bags, possibly due to gluten or other substances. Is this recognizable?
    • trents
      The blood tests you had done are not the main ones. The two main ones are the "Total IGA" (to check for IGA deficiency) and the "TTG-IGA". Current guidelines for the "gluten challenge" when people have been gluten free for a significant time period are the daily consumption of at least10g of gluten (about the amount in 4-6 slices of wheat bread) for at least two weeks leading up to the day of the blood draw. That should give you some perspective.
×
×
  • 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.