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):

When Does The "d" Stop?


graciebear

Recommended Posts

graciebear Newbie

I am on here today asking the very same quaetion. I was diagnosed with Celiac 2 weeks ago. I have been gluten free 19 days today. I am feeling so much better as the stomach pains are gone...but stll lots of "D"! I lost my job 30 days ago as I was so sick I could not even drive let alone work. Now that I have a diagnosis and feeling beter I have found a new job and begin work June 3rd however....I am terrified since I cannot control the morning "D"!

 

I have been reading blog after blog and called BOTH Dr. & dietician to find out what can be done to keep me out of the bathroom.

 

I have been keeping a food log and am glutten free, caffening free, lactose free. But, I look so malnurished and was curious if its a viatmin deficiancy. So last week I becan a muti-vitamin and magnesium (gluten free) and Dr. suggest I begin with Vitamin B12 yesterday. Are the Disestive enzymes a route to go??

 

I am so desperate for help as I am single and have to get back to work in order to pay my bills and take care of myself! THis has been a terrifying ordeal and I need to bouce back fast! I am still haveing insomnia too ...is the answer time??

 

I am also fearful that I have something else w/ my Celiac and not sure where to turn. The Dr. has me on steroids to jump start my brain to want to eat agian as I lost over 20 lbs and truly stopped eating. So the Dr really does not want to see me agin in his office till May 30th and I begin work June 3rd so I want to take advantage of these 2 weeks to heal my intestines. Any words of advise and wisdom?

 

Desperatly seeking answers

 

Thanks in advance to all!

 

G


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



Celiac.com Sponsor (A8-M):



Gemini Experienced

Hello graciebear....I was in your shoes 8 years ago so am sorry you are this sick but know exactly what you are going through.  A few things......unfortunately, no one bounces right back from a Celiac diagnosis so you will have to become a patient person.  Healing can and will happen and you'll feel better than ever but it does take time and that is an individual thing.

I have a good job and know the desire to return to work right away.  I ended up taking only 1 week off from work but I have a sedentary job so that was extremely helpful.

 

Sorry for the TMI but.....I had the explosive, watery diarrhea also and after only 3 days of being really gluten free, that stopped.  Once gluten is out of your system, the diarrhea should cease, although you still have a long way to go as far as healing is concerned. Are you sure you are very gluten free and aren't being cc'd somewhere?  If not, then it may be something else besides Celiac but hear me out.  Microscopic colitis is another condition that occurs often in Celiac's and the one big symptom of that is diarrhea that doesn't go away.  Your large intestine has inflammation going on at a cellular level.  They usually do a biopsy during a colonoscopy to verify this. What it will do is keep water from being re-absorbed into your system and that's the major job of the large intestine. That is how you end up with solid waste.  19 days is a long time to have diarrhea after going gluten-free but I don't want you to panic and think you are dying....I am not trying to scare you!  I think the treatment for microscopic colitis is anti-diarrheals for awhile, to give your large intestine time to heal.  Once you calm your immune system down from Celiac Disease, then other healing follows.  I was in your shoes as far as eating and weight loss so understand your fear and concern.  I think you need to go back to the doctor and bring this up because you cannot have diarrhea for long before it really wears you down, as you well know. 

 

You will have to accept that healing does not happen in 2 weeks but you should be able to get a handle on the diarrhea enough to go back to work as you heal.  Do you have a doctor you can really talk to about this?  Some are such idiots.  There could be another food intolerance going one here also.  It can be hard to tell.

 

I would definitely take digestive enzymes also...I do and they helped enormously for me.  I still take them with a heavier meal.  I am one of the thin Celiacs and still have a problem digesting fats. The ones I use are called Digest Gold and are gluten free but you can use any good one as long as they are gluten-free.  Do you use probiotics?  They are worth taking to populate your GI tract with all that good bacteria you may be missing due to your inflammed gut.  But you really should see a GI doctor to address the diarrhea...19 days is too long to have it.  Please do not freak out about this....these problems are common with celiac and it will just take awhile to get everything under control.

 

Why do people always get sick when they have a new job to start?  :(   I feel for you but hang in there and we'll try to help you through this!

graciebear Newbie

Hello graciebear....I was in your shoes 8 years ago so am sorry you are this sick but know exactly what you are going through.  A few things......unfortunately, no one bounces right back from a Celiac diagnosis so you will have to become a patient person.  Healing can and will happen and you'll feel better than ever but it does take time and that is an individual thing.

I have a good job and know the desire to return to work right away.  I ended up taking only 1 week off from work but I have a sedentary job so that was extremely helpful.

 

Sorry for the TMI but.....I had the explosive, watery diarrhea also and after only 3 days of being really gluten free, that stopped.  Once gluten is out of your system, the diarrhea should cease, although you still have a long way to go as far as healing is concerned. Are you sure you are very gluten free and aren't being cc'd somewhere?  If not, then it may be something else besides Celiac but hear me out.  Microscopic colitis is another condition that occurs often in Celiac's and the one big symptom of that is diarrhea that doesn't go away.  Your large intestine has inflammation going on at a cellular level.  They usually do a biopsy during a colonoscopy to verify this. What it will do is keep water from being re-absorbed into your system and that's the major job of the large intestine. That is how you end up with solid waste.  19 days is a long time to have diarrhea after going gluten-free but I don't want you to panic and think you are dying....I am not trying to scare you!  I think the treatment for microscopic colitis is anti-diarrheals for awhile, to give your large intestine time to heal.  Once you calm your immune system down from Celiac Disease, then other healing follows.  I was in your shoes as far as eating and weight loss so understand your fear and concern.  I think you need to go back to the doctor and bring this up because you cannot have diarrhea for long before it really wears you down, as you well know. 

 

You will have to accept that healing does not happen in 2 weeks but you should be able to get a handle on the diarrhea enough to go back to work as you heal.  Do you have a doctor you can really talk to about this?  Some are such idiots.  There could be another food intolerance going one here also.  It can be hard to tell.

 

I would definitely take digestive enzymes also...I do and they helped enormously for me.  I still take them with a heavier meal.  I am one of the thin Celiacs and still have a problem digesting fats. The ones I use are called Digest Gold and are gluten free but you can use any good one as long as they are gluten-free.  Do you use probiotics?  They are worth taking to populate your GI tract with all that good bacteria you may be missing due to your inflammed gut.  But you really should see a GI doctor to address the diarrhea...19 days is too long to have it.  Please do not freak out about this....these problems are common with celiac and it will just take awhile to get everything under control.

 

Why do people always get sick when they have a new job to start?  :(   I feel for you but hang in there and we'll try to help you through this!

 

Hello graciebear....I was in your shoes 8 years ago so am sorry you are this sick but know exactly what you are going through.  A few things......unfortunately, no one bounces right back from a Celiac diagnosis so you will have to become a patient person.  Healing can and will happen and you'll feel better than ever but it does take time and that is an individual thing.

I have a good job and know the desire to return to work right away.  I ended up taking only 1 week off from work but I have a sedentary job so that was extremely helpful.

 

Sorry for the TMI but.....I had the explosive, watery diarrhea also and after only 3 days of being really gluten free, that stopped.  Once gluten is out of your system, the diarrhea should cease, although you still have a long way to go as far as healing is concerned. Are you sure you are very gluten free and aren't being cc'd somewhere?  If not, then it may be something else besides Celiac but hear me out.  Microscopic colitis is another condition that occurs often in Celiac's and the one big symptom of that is diarrhea that doesn't go away.  Your large intestine has inflammation going on at a cellular level.  They usually do a biopsy during a colonoscopy to verify this. What it will do is keep water from being re-absorbed into your system and that's the major job of the large intestine. That is how you end up with solid waste.  19 days is a long time to have diarrhea after going gluten-free but I don't want you to panic and think you are dying....I am not trying to scare you!  I think the treatment for microscopic colitis is anti-diarrheals for awhile, to give your large intestine time to heal.  Once you calm your immune system down from Celiac Disease, then other healing follows.  I was in your shoes as far as eating and weight loss so understand your fear and concern.  I think you need to go back to the doctor and bring this up because you cannot have diarrhea for long before it really wears you down, as you well know. 

 

You will have to accept that healing does not happen in 2 weeks but you should be able to get a handle on the diarrhea enough to go back to work as you heal.  Do you have a doctor you can really talk to about this?  Some are such idiots.  There could be another food intolerance going one here also.  It can be hard to tell.

 

I would definitely take digestive enzymes also...I do and they helped enormously for me.  I still take them with a heavier meal.  I am one of the thin Celiacs and still have a problem digesting fats. The ones I use are called Digest Gold and are gluten free but you can use any good one as long as they are gluten-free.  Do you use probiotics?  They are worth taking to populate your GI tract with all that good bacteria you may be missing due to your inflammed gut.  But you really should see a GI doctor to address the diarrhea...19 days is too long to have it.  Please do not freak out about this....these problems are common with celiac and it will just take awhile to get everything under control.

 

Why do people always get sick when they have a new job to start?  :(   I feel for you but hang in there and we'll try to help you through this!

Thanks Gemini for the encourangement! I am on anti-diarraheals (lomotil). I am with a new doctor who seems to be much more concerned but I realize I cant call him every day and most of our contact is through the nurse.

 

I did begin probiotics today and the b12 along with a multi that I began last week with magnesium.

 

I feel certain I am gluten free as Ive stayed home and cooked only fresh and basics (meat,fresh veggis and fruit) Trying to eliminate any chance of "cc:" ..but wondered if its in my products. So im taking time today to go through shampoos, makeup etc.

 

Reaching out on the site is another new step for me in educating myself with this disease and hearing that I am not alone.

 

I will ask Dr. about my colonoscopy and inquire about colitus. As i agree this daily "d" is tough! Glad the pain is gone and I am so much better than I was 2 weeks ago. But still have a jorney :mellow:

GFinDC Veteran

Hi Gracie, are you still eating dairy?  If you are it may help to eliminate all dairy for a while.  Celiac disease destroys the villi that make the enzyme to digest diary. So people often have problems with dairy at first.  Also, many adults lose the ability to digest dairy anyway, as lactose intolerance is somewhat common in the population.  Eliminating all diary for a while is good, cheap and quick way to determine if it is a problem.

 

Please check all your meds and vitamins for gluten.  Even meds your doctor prescribes may heave gluten in them.  Another possible gotcha is gluten-free replacement foods.  Sometimes people aren't used to the different flours and gums and such that they used in them.  So they can have reactions to them for a while.  So avoiding them at the start is a good idea.

 

Avoiding sugar and carbs may help too.  When you stop eating gluten and start healing, that is a large change on the diet of your gut bacteria.  Plus the increased surface area of renewed villi provide a larger surface area for them to inhabit and multiply on.  They may get out of whack and start making lots of gas and toxins.  Feeding them lots of sugar and carbs just encourages that activity.  Sticking with meats and veggies is good idea.

 

You may get some relief by adding fiber, like psyillium husks to your diet.  you can get large containers of psyillium husks at health store for not much money.  Just sprinkle a teaspoon or so on your food before you eat it.

 

Gemini Experienced

I would defintiely check all your supplements or anything that goes into your mouth as that can be a mistake almost everyone makes in the beginning.  As far as shampoo and make-up, I do not screen certain items as I do not ingest them.  Remember, you have to ingest things into your GI tract, which does start at the mouth, for it to initiate the autoimmune response.

I only screen lip stick or anything else that goes on my lips and hand cream. Those should make sense.  But I do not screen shampoo because I do not let it run down my face and more often then not, I take a bath.  I just like baths so no problems with shampoo/conditioner.  Face make-up I do not screen as I do not eat my eye make-up....I'm pretty sure about that.  ;)

You can absolutely opt to go completely gluten-free with everything but it's not always necessary and I also have certain products I will not give up.  BTW.... higher end make-up tends to be gluten-free anyway. You should always check but so far, I have found this to be true.  I looked at the ingredients and it is all gluten-free anyway.  Here is an article you might find useful:  Open Original Shared Link

 

You will get this under control and get better but the road can be a longer one than you would like.  I was able to work, which was amazing considering the shape I was in but I am like that anyway.  My leg would have to be hanging off before I would take any time off of work.  ;)   Just give yourself enough rest time when home and eat healthy and well.  Don't be afraid to reach out as we are a tight group here and many, many people on this site are experts and will teach you the correct way to do this diet.  It really is not bad and quite frankly, I do not view this as a restrictive diet at all.  There is so much to eat now and you can make just about anything you crave in a gluten-free version that tastes great. 

 

This may also be of help:  Open Original Shared Link  I have yet to buy and read this myself but so many others loved the book, I thought I would mention it.

graciebear Newbie

This week seems to be much better using all the above advise seems to be paying off! Ive eliminated dairy and went strickly with fresh food options -vs- gluten free products. Dr. started me on a b12 shot too! Making a few adjustemnts has me ready and anxious to begin my new Job Monday!Still have fatige but feel like things are turning around and feelings of despair and fear are subsiding. THanks for the heplful advise and support! :)

gatita Enthusiast

Glad to hear you're doing better!

 

My constant D didn't stop for 8 months, (even going dairy free and keeping a food diary), so it can take a long time for some of us. Yes I am so much healthier now than even a few months ago (10 months gluten-free now) Hang in there!


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



Celiac.com Sponsor (A8-M):



GFinDC Veteran

That's good to hear Gracie!  Sounds like if you keep doing what you are doing diet wise things should be ok.  When you do start adding foods back to your diet, do it in a controlled, purposeful way.  Don't start eating a whole lot of different new things in one day.  Instead add one new food item and eat it for several days to see how you body reacts.  Small initial reactions are not uncommon, But if you eat a new food for 3 days or so your body should be able to adjust.  Actually the gut bacteria adjust.  If you still have symptoms, especially pain of some sort after 5 days then that food may be a problem.  No problem though, just eat something else! :)  There are some groups of veggies that can cause reactions, like nightshades, legumes, etc.  So if you find you react to tomatoes for instance it is likely you will react to another food in that group, like potatoes.  So it's good to keep records of your reactions so you can spot things like that.

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. - Aretaeus Cappadocia commented on Scott Adams's article in Summer 2026 Issue
      1

      New Study Finds 1 in 10 Celiac Patients May Have Additional Autoimmune Disorders (+Video)

    2. - Aretaeus Cappadocia replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      11

      1 Year Elimination Diet journey

    3. - xxnonamexx replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      11

      1 Year Elimination Diet journey

    4. - Aretaeus Cappadocia replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      11

      1 Year Elimination Diet journey

    5. - xxnonamexx replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      11

      1 Year Elimination Diet journey

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

    • Total Members
      134,058
    • Most Online (within 30 mins)
      10,442

    Sandi Barnes
    Newest Member
    Sandi Barnes
    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

    • Aretaeus Cappadocia
      makes sense. sometimes you learn one path and never question it until you see someone take a different path
    • xxnonamexx
      Interesting I read that toasted kasha groats have nutty flavor which I thought like oatmeal with banana and yogurt. Yes quinoa I have for dinner looking to switch oatmeal to buckwheat for breakfast. I have to look into amaranth 
    • Aretaeus Cappadocia
      I've never tried bananas or yogurt with kasha. It would probably work but in my mind I think of kasha as being on the savory side so I always add butter, peanut butter, or shredded cheddar cheese. Next time I make it I will try yogurt and banana to see for myself. Amaranth has a touch of sweet and I like to pair it with fruit. Quinoa is more neutral. I eat it plain, like rice, with chicken stock or other savory things, or with coconut milk. Since coconut milk works, I would think yogurt would work (with the quinoa). I went to the link you posted. I really don't know why they rinse the kasha. I've eaten it for decades and never rinsed it. Other than that, her recipe seems fine (that is, add the buckwheat with the water, rather than wait until the water is boiling). She does say something that I forgot: you want to get roasted/toasted buckwheat or you will need to toast it yourself. I've never tried buckwheat flakes. One potential issue with flakes is that there are more processing steps and as a rule of thumb, every processing step is another opportunity for cross-contamination. I have tried something that was a finer grind of the buckwheat than the whole/coarse and I didn't like it as much. But, maybe that was simply because it wasn't "normal" to me, I don't know.
    • xxnonamexx
      The basic seems more like oatmeal. You can also add yogurt banana to it like oatmeal right. I see rinsing as first step in basic recipes like this one https://busycooks.com/how-to-cook-toasted-buckwheat-groats-kasha/ I don't understand why since kasha is toasted and not raw. What about buckwheat flake cereal or is this better to go with. 
    • Scott Adams
      Celiac disease can have neurological associations, but the better-described ones include gluten ataxia, peripheral neuropathy, headaches or migraine, seizures, cognitive symptoms, and, rarely, cerebral calcifications or white-matter changes. Some studies and case reports describe brain white-matter lesions in people with celiac disease, but these are not specific to celiac disease and can have many other explanations. A frontal lobe lesion could mean many different things depending on the exact wording of the report: a white-matter spot, inflammation, demyelination, a small old stroke, migraine-related change, infection, trauma, vascular change, seizure-related change, tumor-like lesion, artifact, or something that resolved on repeat imaging. The word “transient” usually means it changed or disappeared, which can happen with some inflammatory, seizure-related, migraine-related, vascular, or imaging-artifact situations.  Hopefully they will find nothing serious.
×
×
  • Create New...