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

Diarrhea Question . . . Sorry!


LisaJ

Recommended Posts

LisaJ Apprentice

So I know it's a gross topic, but I'm getting a little freaked out . . . so I was diagnosed with Celiac and have been gluten free for about 6 weeks now. I feel great! I am concerned though about one thing . . . I have diarrhea every day now. I realize that it may take a long time for my body to heal, but I am concerned because I only occasionally had diarrhea before I started the gluten-free diet - now it is every day - why would this get worse?? Any ideas?? Thanks!


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



Celiac.com Sponsor (A8-M):



AmandaD Community Regular

Probably a couple different reasons -

a) You could have temporary lactose intolerance, I was diagnosed and then for about the first few months really had to lay low on dairy

B) You might still be getting some gluten in there - check and check and check your diet again and again. I screwed up a few times with a brand of rice milk I'd been drinking. Watch the vitamins - I take Naturemade...

Lisa Mentor

Have you checked your lipstick, lotion, shampoo and toothpaste?

Anything that can get into your mouth will add gluten to your system if not gluten free.

GlutenWrangler Contributor

I've been gluten/dairy-free for 5 months and still have diarrhea daily. Enterolab told me not to expect it to go away for 3-6 months. If this is true, I guess it's normal to have it for a while after going on the diet.

-Brian

Marlene Contributor

Hello Lisa,

Are you taking any probiotics at all? A good probiotic AND L-Glutamine help to heal the lining of your intestines quicker. It should help with the diarrhea. (Unless you are eating something which is causing the diarrhea.)

Marlene

happygirl Collaborator

Lisa,

Never apologize for asking ANYTHING on this board. We all have strange lives so its ok---we really do understand :)

Celiac is strange and odd things can happen, esp in the beginning. So while it might not be 100% normal, its not out of the realm of possibility at ALL. ;)

Are you eating out at all? How well do you think you are doing, gluten free wise?

I recommend immodiums until it calms down...the pills are gluten free, esp for those times when you are "out and about."

Laura

kristend Rookie
So I know it's a gross topic, but I'm getting a little freaked out . . . so I was diagnosed with Celiac and have been gluten free for about 6 weeks now. I feel great! I am concerned though about one thing . . . I have diarrhea every day now. I realize that it may take a long time for my body to heal, but I am concerned because I only occasionally had diarrhea before I started the gluten-free diet - now it is every day - why would this get worse?? Any ideas?? Thanks!

Wow! Same thing happened to me. I felt fine when I was diagnosed barely any symptoms and now since being gluten-free I have every symptom I could possibly have including what you are mentioning, plus the dizziness and brain fog. Its horrible. I am wondering the same thing..why am I getting worse by the week...???


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



Celiac.com Sponsor (A8-M):



LisaJ Apprentice

Thank you all for the advice - I appreciate it!! It's also good to know I'm not alone :D

par18 Explorer

Lisa,

It's weird how we all react differently. Mine was chronic 'before" diagnosis and completely disappeared the second day on the diet never to return. That was over 18 months ago. I think if I were you I would try to eliminate different things from your diet (like dairy) and keep a log of what you eat. I did this for the first couple of weeks or so when I started. Like some of the other posters indicated it could be non-food item. Have you "added" something to your diet that you did not eat before you went gluten free?

Tom

Tasha2004 Contributor

I posted this elsewhere but just saw this topic. My 81 yr old Mom has been Celiac about 17 years. Her recent Celiac blood panel showed nothing getting through. A colonoscopy and Endoscopy showed gastritis only. She is now having Diarrhea from many foods, most especially fats or fruits. She can eat rice.

I worry because she is drinking rice milk, but she says it is gluten free. They told her no fats, no dairy and they set her up for an abdominal CT scan. I think that is very very drastic. They have not discussed how she is feeling with her, and they only just today ran a blood test looking for possible causes.

If the Celiac panel was fine, does it truly mean no gluten is slipping in?

Poor Mom, she is so upset and just worried that something severe is wrong. Yet I think with the Celiac, there are so many possibilities.

Any thoughts would be appreciated.

daisey Newbie

Hang in there, I had severe D for about 2 years after being diagnosed. It turns out that I have many allergies I was unaware of, eggs, dairy, red beans, white beans and a few others. Perhaps get an allergy test now and again in a few months. You are not alone, my thoughts are with you. Also, make sure you have your own toaster!!!!!!!

Daisey

LisaJ Apprentice

Thanks again everyone. I think I am going to try eliminating dairy, then maybe soy and see if that's it. I don't remember having a problem with those before, but I am eating more of it now than I was before. I have checked everything in my house for gluten - I am definitely not new to gluten-free - I was gluten-free from age 2 to 18, until a dumb doctor told me I did not have Celiac, then was just "re-diagnosed" about 6 weeks ago (long story - ugh!) :angry:

Thanks for all your help! You guys are great.

mamabear Explorer
Thanks again everyone. I think I am going to try eliminating dairy, then maybe soy and see if that's it. I don't remember having a problem with those before, but I am eating more of it now than I was before. I have checked everything in my house for gluten - I am definitely not new to gluten-free - I was gluten-free from age 2 to 18, until a dumb doctor told me I did not have Celiac, then was just "re-diagnosed" about 6 weeks ago (long story - ugh!) :angry:

Thanks for all your help! You guys are great.

Doubt this is the cause, but don't forget about licking envelopes!!!! And check and double check your spices.....

LisaJ Apprentice

ah-ha! found the problem. I guess I was in denial, but I'm pretty sure it's the dairy. Went off dairy for 3 days - D totally disappeared right away. Ate a big bowl of my gluten-free cereal this morning - D came back full force about an hour later. Guess you were right Amanda D :P I don't remember having a problem with dairy before, but maybe it was just covered up with all my other symptoms I was having before I went gluten-free . . .

Thanks everyone!

Lisa

CMCM Rising Star

Lisa, when I got tested thru Enterolab, I did their full panel and found out I am also intolerant to the casein (dairy) protein. IN addition to that, I could ALSO be lactose intolerant. Dr. Fine at Enterolab said casein could cause me the same types of reactions as gluten.

On top of all this, when I went off gluten and dairy I STILL had huge problems, and decided it was some component of the gluten free foods I ate (the baked goods such as breads, rolls, cookiesl, cakes etc)....perhaps tapioca flour, rice flour, I really don't know exactly what it was. I had to stop eating all those things and found I do best on simple things like vegetables, fruits, some meat and fish, eggs, and that's about it. I tend to eat from a very small universe of food choices and that suits my system best.

ah-ha! found the problem. I guess I was in denial, but I'm pretty sure it's the dairy. Went off dairy for 3 days - D totally disappeared right away. Ate a big bowl of my gluten-free cereal this morning - D came back full force about an hour later. Guess you were right Amanda D :P I don't remember having a problem with dairy before, but maybe it was just covered up with all my other symptoms I was having before I went gluten-free . . .

Thanks everyone!

Lisa

PetitHaricotVert Newbie

Hi Carol,

I'm new to this particular forum. Your post about something in the gluten-free foods intrigues me. How are you with plain potatoes and plain rice?

I was dx last August and have been having problems with diarrhea since last October. I've been seeing my GI, allergist and a nutrionist and they are all currently helping me locate my problem. I've heard from a few fellow celiac people that carbs found in potatoes, rice, corn, etc are particularly difficult to digest so they avoid them. I'm wondering if that's where I'm heading.

Any feedback is greatly appreciated :-)

Lisa, I'm glad you found what was giving you D. I'm still struggling so I was empathizing with you.

Donna

Mary Contrary Rookie
So I know it's a gross topic, but I'm getting a little freaked out . . . so I was diagnosed with Celiac and have been gluten free for about 6 weeks now. I feel great! I am concerned though about one thing . . . I have diarrhea every day now. I realize that it may take a long time for my body to heal, but I am concerned because I only occasionally had diarrhea before I started the gluten-free diet - now it is every day - why would this get worse?? Any ideas?? Thanks!
get checked for Microscopic/lymphocytic colitis...I have been doing lots of reading about it, it is what I have..see my sig..anyway lots of people with celiacs have this as well....look it up on google and see if it sounds like your symptoms...it is hard to diagnose and I was lucky enough to go to a good Endo who found it right away...

try Physillum husk, two teaspoons, three times a day, with meals, that should help you with the D.

LisaJ Apprentice
get checked for Microscopic/lymphocytic colitis...I have been doing lots of reading about it, it is what I have..see my sig..anyway lots of people with celiacs have this as well....look it up on google and see if it sounds like your symptoms...it is hard to diagnose and I was lucky enough to go to a good Endo who found it right away...

try Physillum husk, two teaspoons, three times a day, with meals, that should help you with the D.

Hi Mary -

Thanks for the info - I like educate myself :) My D has totally disappeared (except for a couple of days after I accidentally glutened myself during Christmas) now that I have been taking Lactaid with all my dairy - so I'm pretty sure that was the problem.

Hope you are feeling better! Cute puppy BTW :P

Tasha2004 Contributor
Hi Mary -

Thanks for the info - I like educate myself :) My D has totally disappeared (except for a couple of days after I accidentally glutened myself during Christmas) now that I have been taking Lactaid with all my dairy - so I'm pretty sure that was the problem.

Hope you are feeling better! Cute puppy BTW :P

Seems to be a common problem, the lactose.

My Mom finally figured out she was having d. from probably eating foods and not taking a Lactaid pill with them.

She finally seems to be getting better. Whew.

CMCM Rising Star

Hi Donna,

Interesting you asked about potatoes and rice. Way before I got diagnosed, I'd identified potatoes as a problem. And I LOVE potatoes, more than just about any veggie. But they kill me, and I have to be very very careful with them and eat them very sparingly. For some odd reason, what affect me the worst are mashed potatoes....probably due to the milk in them creating a double whammy for me (I'm casein sensitive too, and probably also lactose intolerant). As for rice, I've never been a bit rice eater and I think it probably does bother me a bit. I tend to avoid it, or eat it in very small amounts only occasionally (such as when eating Thai food or something).

I actually feel that I don't do well with any of the starches.....there were a lot of starchy things in the gluten free baked goods, and those things tend to really upset my system a great deal. Some my big problem areas are: gluten, dairy, starches such as potatoes, rice, corn kills me too. I need to learn to never eat any of these things, I guess!

Carole

Hi Carol,

I'm new to this particular forum. Your post about something in the gluten-free foods intrigues me. How are you with plain potatoes and plain rice?

I was dx last August and have been having problems with diarrhea since last October. I've been seeing my GI, allergist and a nutrionist and they are all currently helping me locate my problem. I've heard from a few fellow celiac people that carbs found in potatoes, rice, corn, etc are particularly difficult to digest so they avoid them. I'm wondering if that's where I'm heading.

Any feedback is greatly appreciated :-)

Lisa, I'm glad you found what was giving you D. I'm still struggling so I was empathizing with you.

Donna

hiasun Newbie

Hi Lisa,

My doctor says that many people are lactose intolerant when they are eating gluten, and once they are off of gluten they are able to tolerate lactose again (adults average 2 years, children 6 months).

Better days ahead.

Hiasun

betterbelly Rookie

ME TOO! I was doing fabulous until the 6 week mark: then Diarrhea everyday! Totally freaked out; because I rarely got it before this...

outOfThisWorld Newbie

Quick Question. I went to see my doc yesterday and he was hesitant in getting me tested for celiac because I don't have Diarrhea. Instead I experience the opposite, C on a daily basis. Based on some of the threads I have read I was wondering if Diarrhea is a true indicator of Celiac, or is it still possible to have Celiac without it?

super-sally888 Contributor

Hi,

Some people get C, some people get D. I recently met a lady here whose main symptom is C when she eats gluten.

For me, I get C for several days and then it turns to D - and then repeat. Fun stuff. Seems to be improving off gluten (though Christmas season have not been strict and am paying for it now - at least I know for SURE that gluten free helps) :)

If a Dr. thinks D is the only possibility they are not very knowledgeable.

Sally

Quick Question. I went to see my doc yesterday and he was hesitant in getting me tested for celiac because I don't have Diarrhea. Instead I experience the opposite, C on a daily basis. Based on some of the threads I have read I was wondering if Diarrhea is a true indicator of Celiac, or is it still possible to have Celiac without it?

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. - asaT replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      48

      Supplements for those Diagnosed with Celiac Disease

    2. - asaT replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      48

      Supplements for those Diagnosed with Celiac Disease

    3. - nanny marley replied to hjayne19's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      20

      Insomnia help

    4. - David Blake commented on Scott Adams's article in Product Labeling Regulations
      1

      FDA Moves to Improve Gluten Labeling—What It Means for People With Celiac Disease

    5. - nanny marley replied to wellthatsfun's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      4

      nothing has changed

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

    • Total Members
      133,343
    • Most Online (within 30 mins)
      7,748

    emoryprose
    Newest Member
    emoryprose
    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

    • asaT
      plant sources of calcium, such as spinach, have calcium bound to oxalates, which is not good. best source of calcium is unfortunately dairy, do you tolerate dairy? fermented dairy like kefir is good and or a little hard cheese. i do eat dairy, i can only take so much dietary restriction and gluten is hard enough! but i guess some people do have bad reactions to it, so different for everyone.  
    • asaT
      i take b12, folate, b2, b6, glycine, Nac, zinc, vk2 mk4, magnesium, coq10, pqq, tmg, creatine, omega 3, molybdnem (sp) and just started vit d. quite a list i know.  I have high homocysteine (last checked it was 19, but is always high and i finally decided to do something about it) and very low vitamin d, 10. have been opposed to this supp in the past, but going to try it at 5k units a day. having a pth test on friday, which is suspect will be high. my homocysteine has come down to around 9 with 3 weeks of these supplements and expect it to go down further. i also started on estrogen/progesterone. I have osteoporosis too, so that is why the hormones.  anyway, i think all celiacs should have homocysteine checked and treated if needed (easy enough with b vit, tmg). homocysteine very bad thing to be high for a whole host of reasons. all the bad ones, heart attack , stroke, alzi, cancer..... one of the most annoying things about celiacs (and there are so many!) is the weight gain. i guess i stayed thin all those years being undiagnosed because i was under absorbing everything including calories. going gluten-free and the weight gain has been terrible, 30#, but i'm sure a lot more went into that (hip replacement - and years of hip pain leading to inactivity when i was previously very active, probably all related to celiacs, menopause) yada yada. i seemed to lose appetite control, like there was low glp, or leptin or whatever all those hormones are that tell you that you are full and to stop eating. my appetite is immense and i'm never full. i guess decades or more ( i think i have had celiacs since at least my teens - was hospitalized for abdominal pain and diarrhea for which spastic colon was eventually diagnosed and had many episodes of diarrhea/abdominal pain through my 20's. but that symptom seemed to go away and i related it to dairy much more so than gluten. Also my growth was stunted, i'm the only shorty in my family. anyway, decades of malabsorption and maldigestion led to constant hunger, at least thats my theory. then when i started absorbing normally, wham!! FAT!!!    
    • nanny marley
      Great advise there I agree with the aniexty part, and the aura migraine has I suffer both, I've also read some great books that have helped I'm going too look the one you mentioned up too thankyou for that, I find a camomile tea just a small one and a gentle wind down before bed has helped me too, I suffer from restless leg syndrome and nerve pain hence I don't always sleep well at the best of times , racing mind catches up I have decorated my whole house in one night in my mind before 🤣 diet changes mindset really help , although I have to say it never just disappears, I find once I came to terms with who I am I managed a lot better  , a misconception is for many to change , that means to heal but that's not always the case , understanding and finding your coping mechanisms are vital tools , it's more productive to find that because there is no failure then no pressure to become something else , it's ok to be sad it's ok to not sleep , it's ok to worry , just try to see it has a journey not a task 🤗
    • nanny marley
      I agree there I've tryed this myself to prove I can't eat gluten or lactose and it sets me back for about a month till I have to go back to being very strict to settle again 
    • trents
      You may also need to supplement with B12 as this vitamin is also involved in iron assimilation and is often deficient in long-term undiagnosed celiac disease.
×
×
  • 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.