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

Refractory Sprue

PINKYPAL

By PINKYPAL
in Doctors

Recommended Posts

PINKYPAL Newbie
PINKYPAL
Posted

Hello,

I am seeking information regarding refractory sprue.

I was diagnosed with celiac in January of 2007, and my follow-up biopsy this January was normal due to strict adherance to the gluten free diet.

Since the end of April I have severe diarrhea, and yet have made no changes whatsoever to my diet. I am wondering if it is possible to have a normal biopsy in January, and yet possibly have this refractory sprue?

I called the specialist who follows me for celiac and explained how severe my symptoms have been. The receptionist certainly did not seem concerned and made me an appointment for July.

Any information would be greatly appreciated. I am really worried and am unsure of what to do, if anything.

Thanks kindly,

Pinkypal

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

Celiac.com Sponsor (A8-M):


lovegrov Collaborator
lovegrov
Posted

Refractory sprue is exceedingly rare to begin with. I'm not a medical person, but if you had a normal biopsy and haven't changed your diet, I'd say refractory is not your problem.

richard

melmak5 Contributor
melmak5
Posted

I went through a very similar situation.

Diagnosed, stopped eating gluten, felt better then got worse... lots of D, 7-10x a day.

I got little help from any medical professional (I went through 4 GIs)

For me, it was soy and dairy. Cutting them out has made a huge difference. (I am still waiting for the holy grail of solid poop day... somewhere in the future)

But I highly recommend trying to eliminate other foods from your diet and see how you feel.

jerseyangel Proficient
jerseyangel
Posted

My first thoughts are either additional food intolerances or a small intestinal bacterial overgrowth (SIBO).

If you are currenty eating soy and/or dairy, I would try eliminating them one at a time and see if that makes any difference.

You can ask your gastroenterologist about the breath test for SIBO.

PINKYPAL Newbie
PINKYPAL
Posted
  • Author

Thanks so much for the replies. I went back to read the article on RS written by Michelle Melin-Rogovin on this website and she mentions that when ruling out RS a colonscopy should be done to see if Lymphocytic Colitis is present. This has me a little nervous because I was first diagnosed with LC by colonoscopy and then diagnosed with Celiac by gastroscopy.

I will take the advice given, while patiently waiting for this re-assessment in July.

Best regards to all,

Pinkypal

Archived

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

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


  • Member Statistics

    • Total Members
      126,117
    • Most Online (within 30 mins)
      7,748
    Ellis Dennis
    Newest Member
    Ellis Dennis
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      120.9k
    • Total Posts
      69.2k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • StaciField
      My bone structure is disintegrating and I’m having to have my teeth removed

      By StaciField · Posted

      There’s a Cosco in Auckland in New Zealand. It’s a bit away from where I live but it’s worth the travel for me. Very appreciative of your advice.
    • Wheatwacked
      Celiac Maybe a Possibility?

      By Wheatwacked · Posted

      It seems you have proven that you cannot eat gluten.  You've done what your doctors have not been able to do in 40 years. That's your low vitamin D, a common symptom with Celiac Disease.  Zinc is also a common defiency.  Its an antiviral.  that's why zinc gluconate lozenges work against airborne viruses.  Vitamin D and the Immune System+ Toe cramps, I find 250 mg of Thiamine helps.   When I started GFD I counted 19 symptoms going back to childhood that improved with Gluten Free Diet and vitamin D. I still take 10,000 IU a day to maintain 80 ng/ml and get it tested 4 times a year. Highest was 93 ng/ml and that was at end of summer.  Any excess is stored in fat or excreted through bile.   The western diet is deficient in many nutrients including choline and iodine.  Thats why processed foods are fortified.  Celiac Disease causes malabsorption of vitamins and minerals from the small intestine damage.  GFD stops the damage, but you will still have symptoms of deficiency until you get your vitamins repleted to normal.  Try to reduce your omega 6:3 ratio.  The Standard American Diet is 14:1 or greater.  Healthy is 3:1.  Wheat flour is 22:1.  Potatoes are 3:1 while sweet potatoes are 14:1.  So those sweet potatos that everyone says is better than Russet: they are increasing your inflammation levels.   
    • Scott Adams
      Weird Symptoms

      By Scott Adams · Posted

      My mother also has celiac disease, and one of her symptoms for many years before her diagnosis was TMJ. I believe it took her many years on a gluten-free diet before this issue went away.
    • Jeff Platt
      Weird Symptoms

      By Jeff Platt · Posted

      Ear pain and ringing your entire life may or may not be TMJ related but could be something else. A good TMJ exam would be helpful to rule that out as a potential cause from a dentist who treats that. I have teens as well as adults of all ages who suffer from TMJ issues so it’s not a certain age when it shows up.   
    • cristiana
      Weird Symptoms

      By cristiana · Posted

      Not sure if related to coeliac disease but my ear ringing  has stepped up a notch since diagnosis.  Even since a child silence really hurts my ears - there is always a really loud noise if there is no other noise in a quiet room - but my brain has learned to filter it out.  Since diagnosis in my forties I also get a metallic ringing in my ears, sometimes just one, sometimes both.  But it comes and goes.   My sister also suffers now, we are both in our fifties, but she is not a coeliac, so for all I know it could just be an age thing.  I do get occasional stabbing pain in my ears but that has been all my life, and I do appear to be vulnerable to outer ear infections too.  So not a particularly helpful reply here, but I suppose what I am trying to say is it might be related but then again it could just be one of those things.   I think in the UK where I live doctors like you to report if you get tinnitus in just the one ear.  I reported mine but no cause was found.  Most of the time it is nothing but sometimes it can have a cause that can be treated, so perhaps worth reporting to your GP.  
×
×
  • Create New...