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

How Often Is Too Often?!

hbunting86

By hbunting86
in Coping with Celiac Disease

Recommended Posts

hbunting86 Newbie
hbunting86
Posted

Hi

 

I have a question regarding symptoms I'm experiencing and wondered if anyone has experienced anything similar.

 

I've had constant diarrhea now for months.  Literally months - each time I go to the bathroom its undigested food.  Also whenever I eat I have an immediate urge to go and can't ignore it.  This isn't necessarily after a meal, it could be a few bites into whatever it is I'm eating.

 

My question is where to go from here?  I've cut out gluten, wheat and dairy but something is obviously still very wrong as it can't possibly be normal to have to tolerate this.  I'm job hunting at the moment and already worrying about this, as I'm a psychologist by profession so can't exactly leave in the middle of a therapy session!

 

Any advice would be gratefully received.

 

Thanks

Heather

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

Celiac.com Sponsor (A8-M):


flowerqueen Community Regular
flowerqueen
Posted

Hi

 

I have a question regarding symptoms I'm experiencing and wondered if anyone has experienced anything similar.

 

I've had constant diarrhea now for months.  Literally months - each time I go to the bathroom its undigested food.  Also whenever I eat I have an immediate urge to go and can't ignore it.  This isn't necessarily after a meal, it could be a few bites into whatever it is I'm eating.

 

My question is where to go from here?  I've cut out gluten, wheat and dairy but something is obviously still very wrong as it can't possibly be normal to have to tolerate this.  I'm job hunting at the moment and already worrying about this, as I'm a psychologist by profession so can't exactly leave in the middle of a therapy session!

 

Any advice would be gratefully received.

 

Thanks

Heather

Could your problem be IBS? Everyone's symptoms vary and if you are under a lot of stress, it can make it worse. Also, do you get adequate fibre in your diet? I have both Celiacs and IBS and to begin with, found it difficult getting enough fibre in my diet, but gradually found alternative sources of fibre, which seems to help - my main problem was stomach cramps.

Hope this helps.

kareng Grand Master
kareng
Posted

Hi

 

My question is where to go from here?  

 

Thanks

Heather

How about a doctor?

Have you been tested for parasite and Bacteria overgrowth? Maybe you don't have a gluten or dairy issue at all and just need to get that treated.

hbunting86 Newbie
hbunting86
Posted
  • Author

Hi

 

Sorry should have explained more - I was diagnosed earlier this year with celiacs and then was told by my doctor to try cutting out dairy as there has been no improvement in my symptoms since being gluten free. 

 

I haven't been tested for anything bacteria-wise as far as I'm aware.  I did wonder about also having IBS - I know my dad had stomach issues for many years before he passed away and I'm sure he had IBS (I'd have to check with my mum) although I'm not sure that's hereditary/genetically linked in any way.

 

My concern is obviously that I'm not getting adequate nutrition from what I'm eating, even though my diet is good and I always cook from scratch.  I also get very very tired and lethargic, but maybe that's due to the frequency of dashing to the bathroom and being dehydrated perhaps?

 

Thanks

Heather

bartfull Rising Star
bartfull
Posted

Could you be getting CC'ed? Do you share a home with gluten eaters? Keep your own condiments, have your own toaster, not use scratched teflon or plastic, not use old or shared wooden spoons or cutting boards? How about your supplements and medications? Have you checked your toothpaste, shampoo and lipstick? Do you kiss a gluten eater? Do you eat in restaurants?

flowerqueen Community Regular
flowerqueen
Posted

Hi

 

Sorry should have explained more - I was diagnosed earlier this year with celiacs and then was told by my doctor to try cutting out dairy as there has been no improvement in my symptoms since being gluten free. 

 

I haven't been tested for anything bacteria-wise as far as I'm aware.  I did wonder about also having IBS - I know my dad had stomach issues for many years before he passed away and I'm sure he had IBS (I'd have to check with my mum) although I'm not sure that's hereditary/genetically linked in any way.

 

My concern is obviously that I'm not getting adequate nutrition from what I'm eating, even though my diet is good and I always cook from scratch.  I also get very very tired and lethargic, but maybe that's due to the frequency of dashing to the bathroom and being dehydrated perhaps?

 

Thanks

Heather

You really need to see a doctor! Before I was diagnosed I was severely malnourished, even though I was eating. I was so weak I had to walk with a stick, even just down my garden, I had no muscle tone at all and my hair was falling out. I am not trying to scare you but I would hate you to get as ill as that before you sought help. You need various vitamin and mineral levels checking.

Remember though, it can take a while before things settle down on a gluten free diet, it doesn't happen overnight, especially if there's a possibility that you are being contaminated by something unwittingly.

Gemini Experienced
Gemini
Posted

Heather......IBS is not a diagnosis.  It is a set of symptoms that the docs give a cute moniker to and then they symptom treat it.  if you have been told you have IBS, all they are saying is that your bowel is irritated....nothing more.  I don't think you need to be told what you already know.  The key is to finding out why your bowel is so irritated.

 

One of the hallmarks of constant, unrelenting diarrhea is Microscopic Colitis.  It occurs frequently with Celiac Disease.  You may not be eating gluten at all but have another problem like this.  I would ask the doc about it and, at least, be tested for it.  When your large intestine is inflammed, it cannot do it's job of pulling water from waste and it never becomes solid.  You end up with diarrhea all the time.

 

I wish you luck in finding the problem but don't assume that you are eating gluten and do not let them tell you it's IBS.  That's their cop-out for being unable to find the problem.

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

Celiac.com Sponsor (A8-M):


hbunting86 Newbie
hbunting86
Posted
  • Author

@Gemini - thanks.  This makes a lot of sense! 

 

There is only me and my boyfriend in the house and he's a chef who is VERY aware of CC and conscious of it both at home or if I (rarely) eat at the restaurant.  It's baffling both of us and with my skin being so bad as well, I'm just generally worried.  The doc didn't mention that, but then again I guess it's hard because they can only go on what you tell them.  I got told I had an eating disorder for years because I lost so much weight - it wasn't until I have become in my late 20s that they don't put it down to that and tested me both biopsy and bloody test for celiac.  I was told to go dairy free because the villi are apparently basically flat.  However, I do still worry that this amount and frequency/urgency to go to the bathroom isn't normal.  I'm not anxious about this condition, and doing the job I do I make sure to take a step back and evaluate, so it's not a nervous response, it is certainly very physical particularly as my food is for the most part undigested but there is an awful lot of water/mucus which shouldn't be there.  I eat primarily protein and vegetables and fruit and stay away from all the processed gluten-free products.  I've not yet entertained any grains because I think at this point they'll only add to the problem rather than lessen it.  I also stopped drinking coffee and more acidic things etc and upping my water intake.

 

I take Vit B12 as a supplement as I've been told I'm very low on that, and also calcium as I'm not having any dairy at the moment (and was never really eating as much as necessary to prevent osteoporosis).

 

Baffling! 

GFinDC Veteran
GFinDC
Posted

You could try adding pro-biotics.  Also digestive enzymes.  Taking pysillium husks or another fiber with your food may help.  If your villi are flat as pancakes it may take a while for your gut to heal.  That doesn't mean it won't happen, just that the healing process can be somewhat slow.  You probably haven't been absorbing nutrients that your body needs to heal for a while.  Taking it easy on your gut is a good idea.  Eating raw veggies (like salads) may not work for you at first.  Reducing or eliminating alcohol for a while may help.  Spicy foods (peppers) aren't a great idea.  A simple, whole foods diet may be less "exciting" than the TV programs food, but it easier for your body to digest and detoxify.  You might also find Betaine HCL helpful when eating things like meat or oily/greasey foods.  The gallbladder is in a control loop with enzymes produced in the gut, so if the gut is irritated that control loop is out of whack.

 

Gluten is a in wheat, rye and barley, but some of us also react to oats.

 

Some starting the gluten-free diet tips for the first 6 months:

Get tested before starting the gluten-free diet.
Get your vitamin/mineral levels tested also.
Don't eat in restaurants
Eat only whole foods not processed foods.
Eat only food you cook yourself, think simple foods, not gourmet meals.
Take probiotics.
Take gluten-free vitamins.
Take digestive enzymes.
Avoid dairy.
Avoid sugars and starchy foods.
Avoid alcohol.

Helpful threads:

FAQ Celiac com
https://www.celiac.com/gluten-free/forum-7/announcement-3-frequently-asked-questions-about-celiac-disease/

Newbie Info 101
https://www.celiac.com/forums/topic/91878-newbie-info-101/

ravenwoodglass Mentor
ravenwoodglass
Posted

I agree that you need to address this with your doctor. If you are seeing undigested food that can be a sign of something serious if your seeing more than stuff like corn and nuts.  Make sure you stress that with your doctor.  You may just be slow to heal but something else unrelated could also be going on. Make sure they test your vitamin and mineral levels if they haven't already.

I hope your feeling better soon.

AlwaysLearning Collaborator
AlwaysLearning
Posted

I love it when people dis IBS as a diagnosis. To me, any medical name with the word syndrome in it just means the doctors don't know or didn't care to try to figure it out.

Make the doctors appointment ASAP. Start with the simple tests that can show things like parasites, bacterials overgrowth, or blood in stools and then go from there. Throw in some testing for vitamin deficiencies while you're at it because you definitely haven't been getting what you need from food.

And until that appointment date, I'd add the probiotic. For the job interviews, I'd time my meals so that it would be less likely that you'd have a problem during your meeting times.

Having had C diff. in the past, my heart definitely goes out to you. Best of luck in finding an answer quickly.

Archived

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

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

  • Member Statistics

    • Total Members
      132,921
    • Most Online (within 30 mins)
      7,748
    Rusty49
    Newest Member
    Rusty49
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • cristiana
      Newly diagnosed mam to coeliac 11 year old

      By cristiana · Posted

      Hi @Dizzyma I note what @trents has commented about you possibly posting from the UK.  Just to let you know that am a coeliac based in the UK, so if that is the case, do let me know if can help you with any questions on the NHS provision for coeliacs.    If you are indeed based in the UK, and coeliac disease is confirmed, I would thoroughly recommend you join Coeliac UK, as they provide a printed food and drink guide and also a phone app which you can take shopping with you so you can find out if a product is gluten free or not. But one thing I would like to say to you, no matter where you live, is you mention that your daughter is anxious.  I was always a bit of a nervous, anxious child but before my diagnosis in mid-life my anxiety levels were through the roof.   My anxiety got steadily better when I followed the gluten-free diet and vitamin and mineral deficiencies were addressed.  Anxiety is very common at diagnosis, you may well find that her anxiety will improve once your daughter follows a strict gluten-free diet. Cristiana 
    • trents
      Newly diagnosed mam to coeliac 11 year old

      By trents · Posted

      Welcome to the celic.com community @Dizzyma! I'm assuming you are in the U.K. since you speak of your daughter's celiac disease blood tests as "her bloods".  Has her physician officially diagnosed her has having celiac disease on the results of her blood tests alone? Normally, if the ttg-iga blood test results are positive, a follow-up endoscopy with biopsy of the small bowel lining to check for damage would be ordered to confirm the results of "the bloods". However if the ttg-iga test score is 10x normal or greater, some physicians, particularly in the U.K., will dispense with the endoscopy/biopsy. If there is to be an endoscopy/biopsy, your daughter should not yet begin the gluten free diet as doing so would allow healing of the small bowel lining to commence which may result in a biopsy finding having results that conflict with the blood work. Do you know if an endoscopy/biopsy is planned? Celiac disease can have onset at any stage of life, from infancy to old age. It has a genetic base but the genes remain dormant until and unless triggered by some stress event. The stress event can be many things but it is often a viral infection. About 40% of the general population have the genetic potential to develop celiac disease but only about 1% actually develop celiac disease. So, for most, the genes remain dormant.  Celiac disease is by nature an autoimmune disorder. That is to say, gluten ingestion triggers an immune response that causes the body to attack its own tissues. In this case, the attack happens in he lining of the small bowel, at least classically, though we now know there are other body systems that can sometimes be affected. So, for a person with celiac disease, when they ingest gluten, the body sends attacking cells to battle the gluten which causes inflammation as the gluten is being absorbed into the cells that make up the lining of the small bowel. This causes damage to the cells and over time, wears them down. This lining is composed of billions of tiny finger-like projections and which creates a tremendous surface area for absorbing nutrients from the food we eat. This area of the intestinal track is where all of our nutrition is absorbed. As these finger-like projections get worn down by the constant inflammation from continued gluten consumption before diagnosis (or after diagnosis in the case of those who are noncompliant) the efficiency of nutrient absorption from what we eat can be drastically reduced. This is why iron deficiency anemia and other nutrient deficiency related medical problems are so common in the celiac population. So, to answer your question about the wisdom of allowing your daughter to consume gluten on a limited basis to retain some tolerance to it, that would not be a sound approach because it would prevent healing of the lining of her small bowel. It would keep the fires of inflammation smoldering. The only wise course is strict adherence to a gluten free diet, once all tests to confirm celiac disease are complete.
    • Dizzyma
      Newly diagnosed mam to coeliac 11 year old

      By Dizzyma · Posted

      Hi all, I have so many questions and feel like google is giving me very different information. Hoping I may get some more definite answers here. ok, my daughter has been diagnosed as a coeliac as her bloods show anti TTG antibodies are over 128. We have started her  on a full gluten free diet. my concerns are that she wasn’t actually physically sick on her regular diet, she had tummy issues and skin sores. My fear is that she will build up a complete intolerance to gluten and become physically sick if she has gluten. Is there anything to be said for keeping a small bit of gluten in the diet to stop her from developing a total intolerance?  also, she would be an anxious type of person, is it possible that stress is the reason she has become coeliac? I read that diagnosis later in childhood could be following a sickness or stress. How can she have been fine for the first 10 years and then become coeliac? sorry, I’m just very confused and really want to do right by her. I know a coeliac and she has a terrible time after she gets gluttened so just want to make sure going down a total gluten free road is the right choice. thank you for any help or advise xx 
    • xxnonamexx
      Fermented foods, Kefir, Kombucha?

      By xxnonamexx · Posted

      very interesting thanks for the info  
    • Florence Lillian
      gluten free cookie recipes

      By Florence Lillian · Posted

      More cookie recipes ...thanks so much for the heads-up Scott.  One can never have too many.  Cheers, Florence.
×
×
  • 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.