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. knitty kitty
      - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      @Jane02, I hear you about the kale and collard greens. I don't do dairy and must eat green leafies, too, to get sufficient calcium. I must be very careful because some calcium supplements are made from ground up crustacean shells. When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly. This is safe...
    2. Jane02
      - Jane02 replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency. I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently...
    3. knitty kitty
      - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      Hello, @Jane02, I take Naturewise D 3. It contains olive oil. Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets. Fractionated coconut oil is not the same as coconut oil used for cooking. Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the...
    4. Scott Adams
      0

      Penobscot Bay, Maine: Nurturing Gluten-Free Wellness Retreat with expert celiac dietitian, Melinda Dennis

      until
      Hello! Join me and treat yourself to a four-day, three-night restorative gluten-free retreat in a peaceful, private coastal retreat setting near Penobscot Bay in Maine. Dates: April 10-13, 2026 Enjoy engaging classes...
    5. Scott Adams
      - Scott Adams replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product.
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,327
    • Most Online (within 30 mins)
      7,748
    dnamutant
    Newest Member
    dnamutant
    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

    • knitty kitty
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By knitty kitty · Posted

      @Jane02, I hear you about the kale and collard greens.  I don't do dairy and must eat green leafies, too, to get sufficient calcium.  I must be very careful because some calcium supplements are made from ground up crustacean shells.  When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly.  This is safe and nontoxic.  Vitamin D level should be above 70 nmol/L.  Lifeguards and indigenous Pacific Islanders typically have levels between 80-100 nmol/L.   Levels lower than this are based on amount needed to prevent disease like rickets and osteomalacia. We need more thiamine when we're physically ill, emotionally and mentally stressed, and if we exercise like an athlete or laborer.  We need more thiamine if we eat a diet high in simple carbohydrates.  For every 500 kcal of carbohydrates, we need 500-1000 mg more of thiamine to process the carbs into energy.  If there's insufficient thiamine the carbs get stored as fat.  Again, recommended levels set for thiamine are based on minimum amounts needed to prevent disease.  This is often not adequate for optimum health, nor sufficient for people with absorption problems such as Celiac disease.  Gluten free processed foods are not enriched with vitamins like their gluten containing counterparts.  Adding a B Complex and additional thiamine improves health for Celiacs.  Thiamine is safe and nontoxic even in high doses.  Thiamine helps the mitochondria in cells to function.  Thiamine interacts with each of the other B vitamins.  They are all water soluble and easily excreted if not needed. Interesting Reading: Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ Safety and effectiveness of vitamin D mega-dose: A systematic review https://pubmed.ncbi.nlm.nih.gov/34857184/ High dose dietary vitamin D allocates surplus calories to muscle and growth instead of fat via modulation of myostatin and leptin signaling https://pubmed.ncbi.nlm.nih.gov/38766160/ Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial https://pubmed.ncbi.nlm.nih.gov/31746327/ Vitamins and Celiac Disease: Beyond Vitamin D https://pmc.ncbi.nlm.nih.gov/articles/PMC11857425/ Investigating the therapeutic potential of tryptophan and vitamin A in modulating immune responses in celiac disease: an experimental study https://pubmed.ncbi.nlm.nih.gov/40178602/ Investigating the Impact of Vitamin A and Amino Acids on Immune Responses in Celiac Disease Patients https://pmc.ncbi.nlm.nih.gov/articles/PMC10814138/
    • Jane02
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Jane02 · Posted

      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
    • knitty kitty
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By knitty kitty · Posted

      Hello, @Jane02,  I take Naturewise D 3.  It contains olive oil.   Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets.  Fractionated coconut oil is not the same as coconut oil used for cooking.  Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the jar, and thus may be irritating to the digestive system. I avoid supplements made with soy because many people with Celiac Disease also react to soy.  Mixed tocopherols, an ingredient in Thornes Vitamin D, may be sourced from soy oil.  Kirkland's has soy on its ingredient list. I avoid things that might contain or be exposed to crustaceans, like Metagenics says on its label.  I have a crustacean/shellfish/fish allergy.  I like Life Extension Bioactive Complete B Complex.  I take additional Thiamine B 1 in the form Benfotiamine which helps the intestines heal, Life Extension MegaBenfotiamine. Thiamine is needed to activate Vitamin D.   Low thiamine can make one feel like they are getting glutened after a meal containing lots of simple carbohydrates like white rice, or processed gluten free foods like cookies and pasta.   It's rare to have a single vitamin deficiency.  The water soluble B Complex vitamins should be supplemented together with additional Thiamine in the form Benfotiamine and Thiamine TTFD (tetrahydrofurfuryl disulfide) to correct subclinical deficiencies that don't show up on blood tests.  These are subclinical deficiencies within organs and tissues.  Blood is a transportation system.  The body will deplete tissues and organs in order to keep a supply of thiamine in the bloodstream going to the brain and heart.   If you're low in Vitamin D, you may well be low in other fat soluble vitamins like Vitamin A and Vitamin K. Have you seen a dietician?
    • Scott Adams
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Scott Adams · Posted

      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product. 
    • trents
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By trents · Posted

      Contact them.
×
×
  • 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.