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

On The Road To Healing


catarific

Recommended Posts

catarific Contributor

I am finally on the road to healing.....

I am hoping that those who are undiagnosed are reading this because it may help you find some answers and some relief....

I am sure many undiagnosed diarrhea sufferers do not know that their D may be caused by bile salts leaking into the intestines. Diet will not cure this - the only thing that will is medication and that medication is either Cholestyramine which is powder form or Welchol (pill form). I know some will say that this is defined as Habba Syndrome - but not all forms of bile leakage are categorized as this syndrome. My Gastroenterologist explained that this is fairly common and is easy to take care of and is not really anything to be alarmed over.

What you will need to do is first have a colonscopy and endoscopy to rule out Celiac, Colitis, IBD, or Crohns disease. Blood work is also necessary and stool samples. If all come back negative - then you may be suffering from Bile Salt leakage or possibly Habba Syndrome or even gallbladder disease. This condition is also very prevalent to those who have had their gallbladders previously removed. Trust me when I tell you it is well worth looking into. I have suffered for months and am finally beginning to see some positive results. I am still thin at 98 lbs. (lost a lot of weight with this) but am hoping to soon put some back on. I did notice that I am not having digestive issues (malaborbtion) and the diarrhea is much, much less than before. I asked the doctor how long I would have to continue the medication - he said probably around a year until everything returns back to the way it should be. I must say - I can now eat many of the foods I had sensitivities and/or intolerances to - which were many.

So if you are really suffering from undiagnosed diarrhea - do look into this.

I hope that I am still welcome to post here - because the members in this forum are the greatest and most supportive people I have ever met! Thanks so much for all your help - it is so very much appreciated! :)


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



Celiac.com Sponsor (A8-M):



IrishHeart Veteran

I am so very happy for you that you have an ANSWER to your persistent D. This is Fantastic!!

That is interesting that your food intolerances are less.

It was very good of you to post this information because there are MANY who still suffer chronic D and maybe this will be an answer for them as well!

In fact, I know one who has been suffering for several weeks..I'll direct her to this post!!

Please, do stay on the forum. :) I agree--these are the most supportive, knowledgeable and encouraging people I have ever met!

I hope you feel better soon and put on some weight. :) You can enjoy eating again..hooray!!

I wish you all the best!!

mushroom Proficient

Wonderful news, to have solved the mystery. :) That is not something I had ever heard of so I guess many of us will have learned something today. Thanks for sharing. At least all your celiac investigations allowed them to rule lots of things out so they could look for something else :D I am happy for you.

Dee777 Rookie

I am finally on the road to healing.....

I am hoping that those who are undiagnosed are reading this because it may help you find some answers and some relief....

I am sure many undiagnosed diarrhea sufferers do not know that their D may be caused by bile salts leaking into the intestines. Diet will not cure this - the only thing that will is medication and that medication is either Cholestyramine which is powder form or Welchol (pill form). I know some will say that this is defined as Habba Syndrome - but not all forms of bile leakage are categorized as this syndrome. My Gastroenterologist explained that this is fairly common and is easy to take care of and is not really anything to be alarmed over.

What you will need to do is first have a colonscopy and endoscopy to rule out Celiac, Colitis, IBD, or Crohns disease. Blood work is also necessary and stool samples. If all come back negative - then you may be suffering from Bile Salt leakage or possibly Habba Syndrome or even gallbladder disease. This condition is also very prevalent to those who have had their gallbladders previously removed. Trust me when I tell you it is well worth looking into. I have suffered for months and am finally beginning to see some positive results. I am still thin at 98 lbs. (lost a lot of weight with this) but am hoping to soon put some back on. I did notice that I am not having digestive issues (malaborbtion) and the diarrhea is much, much less than before. I asked the doctor how long I would have to continue the medication - he said probably around a year until everything returns back to the way it should be. I must say - I can now eat many of the foods I had sensitivities and/or intolerances to - which were many.

So if you are really suffering from undiagnosed diarrhea - do look into this.

I hope that I am still welcome to post here - because the members in this forum are the greatest and most supportive people I have ever met! Thanks so much for all your help - it is so very much appreciated! :)

Thank you for taking the time to post your story. I have been suffering with the big D as I like to call it for a solid month... and it has been in a very BIG way. I have rarely left my home, and on the rare instances I have had to it was with a severely dehydrated body as if I drank anything well, it went right through. And through, and through, and through :)

I was diagnosed with Celiac with a simple blood test, did not have the biopsy but did have a colonoscopy. I am currently finishing off the stool samples, tomorrow is my last one. The Big D started all of it's own accord about 2 months after being strictly gluten free. We are not certain why this is, but several people whom I am in touch with who have Celiac's tell me this is not normal to have it so severe for such a prolonged time. I am having trouble getting in to see a gastroenterologist.

Your post was brought to my attention by Irish Heart, another member in here. I, in turn, told my GP about your case today, and he gave me a prescription for Cholestyramine to try. He said it can't hurt. I have not picked it up yet, but I think I may try it and see, but will wait for the stool samples to come back first.

I wanted to be sure to thank you for your post, as I found it very interesting and perhaps it will be helpful in my eventual for-sure diagnosis. Thank you again, this place is all about us helping each other when we have nowhere else to go and the ones who have never suffered from the symptoms we do have no real understanding of our gripes and complaints! I hope to hear more of your progress here in the future, and I wish you the best of luck and a most speedy recovery!

Dee

catarific Contributor

Please keep us posted and let me know how the medication works for you. Just a side line - you may find you have a lot of gas with this - but that sure beats the alternative :)

Lots of luck and hoping the big D is alleviated.

Hugs,

Sue aka Catarific

Dee777 Rookie

Please keep us posted and let me know how the medication works for you. Just a side line - you may find you have a lot of gas with this - but that sure beats the alternative :)

Lots of luck and hoping the big D is alleviated.

Hugs,

Sue aka Catarific

Thank you, Sue! I will be certain to let you know!

Dee

IrishHeart Veteran

Hope this med works for you, Dee! :) Fingers crossed!! Let us know.

Sue, it was so good of you to post your experience.

We never know who we touch when we reach out.... :)


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



Celiac.com Sponsor (A8-M):



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. - trents replied to McKinleyWY's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      4

      Accuracy of testing concerns

    2. - Theresa2407 replied to chrish42's topic in Doctors
      4

      Doctors and Celiac.com

    3. - Scott Adams replied to suek54's topic in Dermatitis Herpetiformis
      4

      Awaiting dermatitis herpetiformis confirmation following biopsy

    4. - Scott Adams replied to xxnonamexx's topic in Gluten-Free Foods, Products, Shopping & Medications
      3

      Healthy Gluten Free Foods low sugar that you found?

    5. - trents replied to suek54's topic in Dermatitis Herpetiformis
      4

      Awaiting dermatitis herpetiformis confirmation following biopsy

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

    • Total Members
      133,253
    • Most Online (within 30 mins)
      7,748

    catnapt
    Newest Member
    catnapt
    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

    • trents
      The biopsy looks for damage to the mucosal lining of the small bowel from the inflammation caused by celiac disease when gluten is ingested. Once you remove gluten from the diet, inflammation subsides and the mucosal lining begins to heal. 
    • Theresa2407
      Our support groups in Iowa have tried for years to educate doctors and resource sites like this one.  We have held yearly conferences with continued education classes.   We have brought in Dr. Murray, Dr. Fasano, Dr. Green and Dr. elliott.  In those many years we may have had 2 doctors attend.  We sent them information, with no response.  I talked to my personal doctor and she said their training for Celiac was to show them a skinny man in boxer shorts and a huge stomach.  Saying if you see this, it is Celiac.  If it isn't in their playbook then they don't care.  Most call it an allergy with no mention of our immune system.  There is so much false information on the internet.  Then people don't understand why they can't get well and are acquiring more immune diseases. I mention this site to everyone.  Scott has working hard for the Celiac community.
    • Scott Adams
      If you have DH you will likely also want to avoid iodine, which is common in seafoods and dairy products, as it can exacerbate symptoms in some people. This article may also be helpful as it offers various ways to relieve the itch:  
    • Scott Adams
      One of our sponsors here is a nut/seed/dried fruit, etc., company that sells gluten-free versions. Tierra Farm: https://www.tierrafarm.com/discount/gfships
    • trents
      You might also consider a low iodine diet as iodine is know to exacerbate dermatitis herpetiformis. But be careful with that as well as there are health problems that can accrue from iodine deficiency.
×
×
  • 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.