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. - Borky posted a topic in Dermatitis Herpetiformis
      0

      Gluten food test strips

    2. - Wheatwacked replied to Midwesteaglesfan's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Going for upper endoscopy today

    3. - Midwesteaglesfan posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Going for upper endoscopy today


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,268
    • Most Online (within 30 mins)
      7,748

    Cookie Monster13
    Newest Member
    Cookie Monster13
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Borky
      I just recently saw something on this.  Has anyone tried test strips?  Which brand is better?  Not sure how they really work and if they really do work.  Thank you, Nancy (aka Borky)
    • Wheatwacked
    • Wheatwacked
      Hello @Midwesteaglesfan and welcome. A result greater than 10 U/mL is considered positive. Some labs use 15 as the cutoff, but 34 is in the positive.  The endoscopy and biopsy is looking for damage to your small intestine.  I don't don't think 5 days is enough to repair the damage. This comment is effectly your answer, regardless of your biopsy results.  The endoscopy has been the Gold Standard diagnostic, and most healthcare providers won't diagnose celiac disease until your intestinal lining Marsh Score reaches stage 3. You don't really want to wait for the damage to get worse, especially since only five days mostly gluten free gave you relief.  Yes, migranes is one of the 200 symptoms that may be caused by Celiac Disease. Malabsorption Syndrome is often comorbid with celiac disease.  The western diet is deficient in many vitamins and minerals.  That's why gluten processed foods are fortified.  Gluten free processed foods are not; Vitamin D deficiency is a virtual given.  40 to 60% of the industrial population is deficient in vitamin D, Damage to the intestinal lining from celiac disease can decrease the number of vitamin D receptors.  So now you get no vitamin D from the sun (skin cancer scare) the major source of vitamin D, plus absorbtion from food is poor because of intestinal damage.   Low iodine intake is getting more of a concern because the major source of iodine used to be bread (dough conditioner with iodine was stopped in the US in the 1970s), dairy (lactose intolerance from eating quick pickles with vinegar instead of fermented pickles which supply lactase excreting lactobacillus to improve Lactose intolerance. Commercial Dairies have wheat, barley and rye added to the cow feed. Some say they are sensitive to milk protein, but it is the gluten added to supplement the cow feed to increase milk production that becomes part of the milk protein causing the problem.  And people use less iodized salt.  In the US intake of iodine dropped 50% from 1970 to 1984. Switch to Grass fed only milk and consider supplementing Liquid Iodine drops to your diet.  The omega 6 to omega 3 ratio of commercial milk is 5:1; Organic milk is 3:1 and grass fed milk is 1:1. The typical western diet is around 14:1, optimum for humans is 1:1.  Wheat flour is 22:1 omega 6:3.  Choose vegetables lower in omega 6, it is inflammatory. Eat fermented foods and switch to Grass fed only milk.  Some say they are sensitive to milk protein, but it is the gluten added to supplement the cow feed to increase milk production that becomes part of the milk protein.   
    • Midwesteaglesfan
      At 41 years old I have been fighting fatigue and joint pain for a couple months.  My family doctor kept saying nothing was wrong but I was insistent that I just didn’t feel right.  Finally after running several blood labs, one came back showing inflammation in my body and I was referred to a rheumatologist.  He was extremely thorough and sat with me and my family for a good hour asking questions and listening. He ordered X-rays of all my joints and more bloodwork.  He suspected some sort of reactive inflammatory arthritis.  My TTG (Tissue Transglutaminase) came back at 34. he told me to try going gluten free and out me on Salfasalzin to help the join inflammation.  Over the next couple days going gluten free and doing a lot of research and talking to people with celiacs,  we found that I should have an upper endoscopy for insurance purposes in the future.  I reached back out to my rheumatologist and expressed this concern and he got back to me stating I was correct and resume regular gluten diet and stop the medication until after that scope.     They were able to schedule me in for 2 days later.  I had been gluten free, or as close to it as I could be for about 5 days.  I know I ate some brats with it but wanted to use them up.  My symptoms had gotten slightly better in those 5 days.  I felt less fatigue and joint pain was slightly better(it had gotten really bad) so for these last 2 days I’ve gone crazy with wheat bread, pasta and such.  I’m hoping those 5 days didn’t screw this endoscopy up.  I can’t imagine after a life of gluten, my intestines healed in 5 days and after eating gluten again for these couple days,  my stomach hurts, joint pain is coming back up so I know the inflammation is there.   Hinesight after this diagnosis, I have had chronic migraines since my late teens.  Has that been a lingering symptom of celiacs all these years?  I’ve never really had the stomach issues, for me it came in heavy these last couple months as the fatigue, just always feeling tired and exhausted.  And the joint pain.     So getting in the car for the 2 hour drive to the hospital for this scope now.     Wish me luck!
    • marlene333
      To play it safe, use Vasoline Lip Therapy. No questions as to it containing gluten.
×
×
  • 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.