Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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

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.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,180
    • Most Online (within 30 mins)
      7,748

    Ruby B
    Newest Member
    Ruby B
    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

    • Jane878
      By the time I was 5 I had my first auto0immune disorder, Migraine headaches, with auras to blind me, and vomiting, sensitivity to light and sound. I was 5 years old, and my stepfather would have pizza night, milling his own flour, making thick cheesy gluten pizza, that I would eat and the next day, I would have serious migraines, and my mother & stepfather did nothing about my medical problems. When I was 17 in my first year at college, I was diagnosed with my 2nd known auto-immune disorder, Meniere's disease. I was a elite athlete, a swimmer, and soccer player. And once again my parents didn't think anything of understanding why I had a disorder only older people get. Now after my mother passed from Alzheimer's disease she also suffered with living with gluten. She had a rash for 30 years that nobody could diagnose. She was itchy for 45 years total. My brother had a encapsulated virus explodes in his spleen and when this happened his entire intestines were covered with adhesions, scar tissue and he almost lost his life. He has 5 daughters, and when I finally was diagnosed after being pregnant and my body went into a cytokine storm, I lost my chance to have children, I ended up having Hashimoto's disease, Degenerative Disc disease, and my body started to shut down during my first trimester. I am 6ft tall and got down to 119lbs. My husband and I went to a special immunologist in Terrace, California. They took 17 vials of blood as we flew there for a day and returned home that evening. In 3 weeks, we had the answer, I have Celiac disease. Once this was known, only my father and husband made efforts to change their way of feeding me. At the family cabin, my stepfather & mother were more worried that I would ruin Thanksgiving Dinner. It wasn't until one of my cousins was diagnosed with Celiac disease. They finally looked into getting Gluten Free flour and taking measures to limit "gluten" in meals. He did nothing but ask for me to pay for my own food and wi-fi when I came to the cabin to stay after our house burned down. When he informed my mother, they proceeding to get into a physical fight and she ended up with a black eye. The is just more trauma for me. Sam had no interest in telling the truth about what he wanted. He lied to my mother that he had asked my husband if I could pay for "food" when he asked Geoffrey if I had money to pay for my wi-fi. My mother hates when he spends so much time on the computer so he lied and said I could pay for my own food. I will remind you I weighed 119lbs at this time. (At 6ft) that is a very sick looking person. Neither parent was worried about my weight, they just fought about how cheap my stepfather was. As my mother was diagnosed with Alzheimer's disease in 2014. He had her sign over the will to a trust and added his children. He had no testimonial capacity at the time, so she signed without proper papers. Making this Trust null and void. When I gave my brother my childhood home, my mother stated I would be getting an equal part of inheritance to the house on Race. It currently worth 2.0 million $. I got nothing, and my stepfather has since disowned me b/c of my claim and he knows that my mother would never have left it uneven between my biological brother and myself. She sat me and my husband down, as we lived at the Race Street house and treated and took care of it as our own. My brother took over b/c he was going through a horrific divorce and needed a home so he could get a better custody deal with his soon to be ex-wife who was a Assist DA for Denver. She used the girls against him, and he & I were the primary caregivers. We, Judd and I spent the most time with them pre the divorce. Once Judd moved into the house, he threw all of my mother, grandmother and my family heirlooms out to the Goodwill. Nobody told my mother about this as she was going through cancer treatment and had Alzheimer's disease in her mother and her sister. My stepfather and biological brother took advantage of this matter, as I called a "family council" that my brother just never could make it to at the last moment. All of the furnishing, kitchen ware, everything was in the house my brother just moved into. He had had 2 weddings, I chose to elope b/c my stepfather ruined my brother's first wedding by talking about his relationship with my brother in front of my dad and his entire family, insulting him and having my grandfather leave the ceremony. It was a disaster. My stepfather just plays dumb and blames my father for the slight. I was the only child not to have a wedding. So, my mother and stepfather never had to pay for a thing. My mother had had an agreement with my father he'd pay for college and all medical issues with their kids, myself and Judd. So truly my mother never had to pay for anything big for me in her entire life. I am looking for anyone that has had a similar story, where they grew up in a household that had a baker that regularly milled flour and ate gluten. What happened to you? DId you suffer from different auto-immune diseases b/c of living with a baker using "gluten" Please let me know. I have been looking into legal ways to get my stepfather to give me what my mother had promised, and he erased. Thank you for listening to my story. Jane Donnelly  
    • trents
      Possibly gluten withdrawal. Lot's of info on the internet about it. Somewhat controversial but apparently gluten plugs into the same neuro sensors as opiates do and some people get a similar type withdrawal as they do when quitting opiates. Another issue is that gluten-free facsimile flours are not fortified with vitamins and minerals as is wheat flour (in the U.S. at least) so when the switch is made to gluten-free facsimile foods, especially if a lot of processed gluten-free foods are being used as substitutes, vitamin and mineral deficiencies can result. There is also the possibility that she has picked up a virus or some but that is totally unrelated to going gluten-free.
    • Sheila mellors
      I asked about the new fruit and nut one and the Dietician said yes I could eat it safely. Hooe this helps
    • Heatherisle
      Daughter has started gluten free diet this week as per gastroenterologists suggestion. However says she feels more tired and like she’s been hit by a train. I suggested it could be the change to gluten free or just stress from the endoscopy last week catching up with her. Just wondering if feeling more tired is a normal reaction at this stage. I suppose it’s possible some gluten might have been present without realising. Have tried to reassure her it’s not going to resolve symptoms overnight
    • DAR girl
      Looking for help sourcing gluten-free products that do not contain potato or corn derived ingredients. I have other autoimmune conditions (Psoriatic Arthritis and Sjogrens) so I’m looking for prepared foods as I have fatigue and cannot devote a lot of time to baking my own treats. 
×
×
  • Create New...