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

Refractory Sprue

designerstubble

Recommended Posts

designerstubble Enthusiast
designerstubble
Posted

I've been reading up on Refractory Sprue (mainly because my diarrhea hasn't improved), and found so much info on Refractory. But some of it contradicts and I was wondering where you get the facts from? Any good websites known?

 

Is it really as much as 10% of celiacs have Refractory Sprue? And is it true that after 10 years gluten-free your chances of developing RS go down?

 

Ok, I am just generally interested too, purely because I don't know what info to trust, I know it's every Celiacs worst nightmare. Including me! But just want the facts!

 

What are the symptoms?? I know diarrhea is one. 

 

Any pointers for good articles? Knowledge is power!

 

Many thanks

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

Celiac.com Sponsor (A8-M):


GottaSki Mentor
GottaSki
Posted

10% sounds very high...haven't researched it in over a year, but seem to remember the number being less than 5%.

 

If it makes you feel any better...we were convinced I had Refractory as my annual biopsies were worse at 1 and 2 years, but thankfully at year three my biopsies were slightly improved -- still Marsh 3 but at least they were As and Bs.  I'm do for another, but my current insurance and work will postpone my next endo for some time.  I passed the four year mark in March -- and am finally healthy except for some pesky allergic type reactions.  For some of us it simply takes time to heal.

VeggieGal Contributor
VeggieGal
Posted

From what I've been reading, like Gottaski says its less than 5%. One study said its more like 1.5% as it was found that gluten was still creeping into people's diets hence they wasnt healing. So it is very rare. The cause still unknown but thought to be long term malabsorption.

Open Original Shared Link

I guess we just have to be patient and check for cc and other food intolerances etc and keep up with the probiotics and digestive enzymes. We'll get there :)

dilettantesteph Collaborator
dilettantesteph
Posted

Have a look at this study: Open Original Shared Link

 

Some cases of ongoing symptoms and refractory sprue clear up with a gluten contamination elimination diet. 

 

Some of us react to lower levels than others.

 

I hope you feel better soon.

GottaSki Mentor
GottaSki
Posted

Just my personal opinion...I believe the definition of "Refractory" will change in the coming years...as with all Functional Digestive Disorders -- there has not been enough research -- this is changing -- too slowly (again IMNTBHO).  I'd imagine the next five and ten years will provide some very interesting "discoveries" by mainstream medical research ;)

designerstubble Enthusiast
designerstubble
Posted
  • Author

Have a look at this study: Open Original Shared Link

Some cases of ongoing symptoms and refractory sprue clear up with a gluten contamination elimination diet.

Some of us react to lower levels than others.

I hope you feel better soon.

Thank you, interesting reading.

I only eat whole foods too, no processed! Never eat out, my house is virtually gluten free except from husbands beer!

I spoke to a nutritionist today who seemed to think that my diet of just fruit and veg probably contributed to my loose bowels. Also increased she said because I drink green juice every day virtually, and a lot of smoothies. Here's hoping she's right. I guess I'm eating lots of slop?!

Thanks again.

Ps. Read on an old thread where u mentioned Olympic athletes that had celiac, just wondered who?! I'm trying to get back into exercise, did my first 5k run today... Can't believe I did it?! I actually ran 5km! First run in 3 years! (Used to be quite fit a while ago. Want to be super fit now! Long way to go though. To know of celiac athletes would be inspirational, I couldn't find anything via google!

designerstubble Enthusiast
designerstubble
Posted
  • Author

Just my personal opinion...I believe the definition of "Refractory" will change in the coming years...as with all Functional Digestive Disorders -- there has not been enough research -- this is changing -- too slowly (again IMNTBHO). I'd imagine the next five and ten years will provide some very interesting "discoveries" by mainstream medical research ;)

Thanks Lisa

I think you are completely right. I was reading today about how underdiagnosed Celiac is, I hope they do research it better... To me it seems rather high that 5% of people get refractory, and in many cases can't do anything about it... As in with RCD 2, most people die 3-5 yrs post diagnosis? Wish I was rich. I'd sort this crap out!! I know I used to think refractory was for those who were diagnosed late in life, I guess I was mistaken hey! (Apparently the mean age is 46? )

One think I am learning is that I have to stop reading about it. I think it's detrimental to me at the moment!! It's hard not to research though in the absence of decent medical care, I feel the need to look after myself!

But I have you guys, you always set me straight. Seriously, I wish I could thank you properly, you ladies (and guys) rock!

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

Celiac.com Sponsor (A8-M):


frieze Community Regular
frieze
Posted

Open Original Shared Link

 

Thank you, interesting reading.
I only eat whole foods too, no processed! Never eat out, my house is virtually gluten free except from husbands beer!
I spoke to a nutritionist today who seemed to think that my diet of just fruit and veg probably contributed to my loose bowels. Also increased she said because I drink green juice every day virtually, and a lot of smoothies. Here's hoping she's right. I guess I'm eating lots of slop?!
Thanks again.
Ps. Read on an old thread where u mentioned Olympic athletes that had celiac, just wondered who?! I'm trying to get back into exercise, did my first 5k run today... Can't believe I did it?! I actually ran 5km! First run in 3 years! (Used to be quite fit a while ago. Want to be super fit now! Long way to go though. To know of celiac athletes would be inspirational, I couldn't find anything via google!

dilettantesteph Collaborator
dilettantesteph
Posted

Gluten free Olympic athletes: Open Original Shared Link

dilettantesteph Collaborator
dilettantesteph
Posted

That sounds difficult.  In that study, some didn't get better with that diet.  I think that some have to be even more careful.  I seem to have problems even with certain produce.  I need to vet everything with challenge/elimination diets.  I've started growing whatever I can because that way I can know that it hasn't gotten cc'ed somehow.

 

I eat rice from Thailand which I wash with soap, rinsed very well.  Unwashed, it gave me a reaction.  I takes me an hour to wash 4 cups, but it is worth it to not be sick.  Plus, my son is just as sensitive as I am, and he needs to be able to attend school.

 

I hope that you are on the right track and that you get better soon.

Archived

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

Go to topic listing

  • 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. SusanJ
      - SusanJ replied to Jillian83's topic in Coping with Celiac Disease
      5

      Celiac and dermatitis herpetiformis has taken Me from Me

      Two months ago, I started taking Dupixent for dermatitis herpetiformis and it has completely cleared it up. I can't believe it! I have had a terrible painful, intensely itchy rash for over a year despite going fully gluten-free. See if your doctor will prescribe Dupixent. It can be expensive but I am getting it free. When the dermatitis herpetiformis was...
    2. knitty kitty
      - knitty kitty replied to tiffanygosci's topic in Coping with Celiac Disease
      13

      New Celiac Mama in My 30s

      @tiffanygosci, Thiamine deficiency is a thing in pregnancy for "normal" people, so it's exponentially more important for those with celiac disease and malabsorption issues. I studied nutrition before earning a degree in Microbiology because I was curious what the vitamins were doing inside the body. See my blog. Click on my name to go to my page...
    3. tiffanygosci
      - tiffanygosci replied to tiffanygosci's topic in Coping with Celiac Disease
      13

      New Celiac Mama in My 30s

      Thank you for sharing all of this, Knitty Kitty! I did just want someone to share some commonality with. I did not know This one Deficiency was a thing and that it's common for Celiac Disease. It makes sense since this is a disorder that causes malabsorption. I will have to keep this in mind for my next appointments. You also just spurred me on to make that...
    4. RMJ
      - RMJ replied to Riley.'s topic in Introduce Yourself / Share Stuff
      4

      Outgrow celiac?

      I think your initial idea, eat gluten and be tested, was excellent. Now you have fear of that testing, but isn’t there also a fear each time you eat gluten that you’re injuring your body? Possibly affecting future fertility, bone health and more? Wouldn’t it be better to know for sure one way or the other? If you test negative, then you celebrate and g...
    5. knitty kitty
      - knitty kitty replied to Riley.'s topic in Introduce Yourself / Share Stuff
      4

      Outgrow celiac?

      @Riley., Welcome to the forum, but don't do it! Don't continue to eat gluten! The health problems that will come if you continue to eat gluten are not worth it. Problems may not show up for years, but the constant inflammation and nutritional losses will manifest eventually. There's many of us oldsters on the forum who wish they'd been diagnosed...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,981
    • Most Online (within 30 mins)
      7,748
    Cathal Brugha
    Newest Member
    Cathal Brugha
    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

    • SusanJ
      Celiac and dermatitis herpetiformis has taken Me from Me

      By SusanJ · Posted

      Two months ago, I started taking Dupixent for dermatitis herpetiformis and it has completely cleared it up. I can't believe it! I have had a terrible painful, intensely itchy rash for over a year despite going fully gluten-free. See if your doctor will prescribe Dupixent. It can be expensive but I am getting it free. When the dermatitis herpetiformis was bad I could not do anything. I just lay in bed covered in ice packs to ease the pain/itching and using way too Clobetasol. Dapsone is also very good for dermatitis herpetiformis (and it is generic). It helped me and the results were immediate but it gave me severe anemia so the Dupixent is better for me. Not sure if it works for everyone. I cannot help with the cause of your stress but from experience I am sure the severe stress is making the celiac and dermatitis herpetiformis worse. Very difficult for you with having children to care for and you being so sick. Would this man be willing to see a family therapist with you? He may be angry at you or imagine that your illness is a psychosomatic excuse not to take care of him. A therapist might help even if he won't go with you. Also do you have any family that you could move in with (with the kids) for a short time to get away? A break may be good for you both.
    • knitty kitty
      New Celiac Mama in My 30s

      By knitty kitty · Posted

      @tiffanygosci, Thiamine deficiency is a thing in pregnancy for "normal" people, so it's exponentially more important for those with celiac disease and malabsorption issues. I studied nutrition before earning a degree in Microbiology because I was curious what the vitamins were doing inside the body.  See my blog.  Click on my name to go to my page, scroll to drop down menu "activities" and select blog.   So glad you're motivated to see the dietician!  We're always happy to help with questions.  Keep us posted on your progress! 
    • tiffanygosci
      New Celiac Mama in My 30s

      By tiffanygosci · Posted

      Thank you for sharing all of this, Knitty Kitty! I did just want someone to share some commonality with. I did not know This one Deficiency was a thing and that it's common for Celiac Disease. It makes sense since this is a disorder that causes malabsorption. I will have to keep this in mind for my next appointments. You also just spurred me on to make that Dietician appointment. There's a lot of information online but I do need to see a professional. There is too much to juggle on my own with this condition.<3
    • RMJ
      Outgrow celiac?

      By RMJ · Posted

      I think your initial idea, eat gluten and be tested, was excellent. Now you have fear of that testing, but isn’t there also a fear each time you eat gluten that you’re injuring your body? Possibly affecting future fertility, bone health and more? Wouldn’t it be better to know for sure one way or the other? If you test negative, then you celebrate and get tested occasionally to make sure the tests don’t turn positive again. If you test positive, of course the recommendation from me and others is to stop gluten entirely.  But if you’re unable to convince yourself to do that, could a positive test at least convince you to minimize your gluten consumption?  Immune reactions are generally what is called dose response, the bigger the dose, the bigger the response (in this case, damage to your intestines and body). So while I am NOT saying you should eat any gluten with a positive test, the less the better.  
    • knitty kitty
      Outgrow celiac?

      By knitty kitty · Posted

      @Riley., Welcome to the forum, but don't do it!  Don't continue to eat gluten!  The health problems that will come if you continue to eat gluten are not worth it.  Problems may not show up for years, but the constant inflammation and nutritional losses will manifest eventually.  There's many of us oldsters on the forum who wish they'd been diagnosed as early.    Fertility problems, gallbladder removal, diabetes, osteoporosis and mental health challenges are future health issues you are toying with.   To dispel fear, learn more about what you are afraid of.  Be proactive.  Start or join a Celiac group in your area.  Learn about vitamins and nutrition.   Has your mother been checked for Celiac?  It's inherited.  She may be influencing you to eat gluten as a denial of her own symptoms.  Don't let friends and family sway you away from the gluten-free diet.  You know your path.  Stick to it.  Be brave. 
×
×
  • 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.