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


Tasha2004

Recommended Posts

Tasha2004 Contributor

My Mom is still having problems with loss of weight, and she says loose stools. She has been gluten-free over 20 years, and is 81.

Recently she had evey test in the world, and is just fine, but did trace a problem to a BP med which was giving her tummy trouble.

Now she still insists she doesnt feel well.

We are seeing the gastro one more time, but this doctor already ran tests and biopsy to check for Gluten sneaking by. Everything looks to be normal.

Wouldnt refracotry Sprue show up in blood tests or biopsies?

Does anyone know?

I need some ammunition to hit the doctor with on Monday.

My Mom just isnt feeling well, and we are trying to make sure it isnt from Celiac.


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



Celiac.com Sponsor (A8-M):



nikki-uk Enthusiast
We are seeing the gastro one more time, but this doctor already ran tests and biopsy to check for Gluten sneaking by. Everything looks to be normal.

Wouldnt refracotry Sprue show up in blood tests or biopsies?

Does anyone know?

I would have thought the biopsies would have shown something up (e.g blunted villi, cell changes) but I suppose as well biopsies could miss any damaged parts :unsure:

Has your Mum had a colonoscopy as well to check her large bowel??

Sorry I can't be of more help.

Tasha2004 Contributor
I would have thought the biopsies would have shown something up (e.g blunted villi, cell changes) but I suppose as well biopsies could miss any damaged parts :unsure:

Has your Mum had a colonoscopy as well to check her large bowel??

Sorry I can't be of more help.

She had every abdominal test and blood test known to man, I think!

CT scan, Abdominal dopplar, Endoscopy, Colonoscopy, blood tests, biopsy, etc etc.

They didnt miss a trick!

nikki-uk Enthusiast
She had every abdominal test and blood test known to man, I think!

CT scan, Abdominal dopplar, Endoscopy, Colonoscopy, blood tests, biopsy, etc etc.

They didnt miss a trick!

<_<

My Mum has a similar problem (with constant D for the last year 6 or more times daily)

She too has had a barrage of tests (all neg) but I sometimes wonder if docs don't dismiss elderly people - as in 'it's old age - you aren't going to feel as good' attitude :angry:

A couple more thoughts on your Mum, has she been tested for

Gall Bladder probs,

Pancreatic Insufficiency??

Tasha2004 Contributor

I think she was tested for those. We just got off the phone with the Gastro's assistant. It is looking like depression is causing her tummy problems.

They felt it was highly possible and it seems like all her symptoms really match up.

But yes she is a senior and they do pass over these people quite often.

This time, I think we are on to something.

We'll see Monday, but the doctor is prepared to bring this issue up.

Canadian Karen Community Regular

Have they biopsied for collagenous colitis? It can only be seen by a pathologist through a microscope (hence the other term for it - microscopic colitis).

Karen

Tasha2004 Contributor

Karen: I dont know, they did the endoscopy the same day as the colonoscopy so.......

But to tell you the truth, she tells them she had diarrhea and she tells me loose stools, but then she threw in so many unrelated conditions that we figured depression (ie back pain, leg sore, etc etc)


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



Celiac.com Sponsor (A8-M):



Canadian Karen Community Regular

Collagenous colitis sure fits the diarrhea bill!

Open Original Shared Link

Trust me, I am the expert at watery diarrhea! :lol:

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,605
    • Most Online (within 30 mins)
      7,748

    LWceliac38
    Newest Member
    LWceliac38
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scott Adams
      It seems like you have two choices--do a proper gluten challenge and get re-tested, or just go gluten-free because you already know that it is gluten that is causing your symptoms. In order to screen someone for celiac disease they need to be eating gluten daily, a lot of it--they usually recommend at least 2 slices of wheat bread daily for 6-8 weeks before a blood screening, and at least 2 weeks before an endoscopy (a colonoscopy is no used to diagnose celiac disease). Normally the blood panel is your first step, and if you have ANY positive results there for celiac disease the next step would be to take biopsies of your villi via an endoscopy given by a gastroenterologist.  More info on the blood tests and the gluten challenge beforehand is below: The article includes the "Mayo Clinic Protocol," which is the best overall protocol for results to be ~98% accurate. Here is more info about how to do a gluten challenge for a celiac disease blood panel, or for an endoscopy: and this recent study recommends 4-6 slices of wheat bread per day:   Not to discourage you from a formal diagnosis, but once you are diagnosed it may lead to higher life and medical insurance rates (things will be changing quickly in the USA with the ACA starting in 2026), as well as the need to disclose it on job applications. While I do think it's best to know for sure--especially because all of your first degree relatives should also get screened for it--I also want to disclose some negative possibilities around a formal diagnosis that you may want to also consider.  
    • Wheatwacked
      Yes.  Now, if you hit your finger with a hammer once, wouldn't you do your best not to do it again?  You have identified a direct connection between gluten and pain.  Gluten is your hammer.  Now you have to decide if you need a medical diagnosis.  Some countries have aid benefits tgat you can get if you have the diagnosis, but you must continue eating a gluten-normal diet while pursuing the diagnosis. Otherwise the only reason to continue eating gluten is social. There are over 200 symptoms that could be a result of celiac disease.. Celiac Disease and Non Celiac Gluten Sensitivity  both cause multiple vitamin and mineral deficiency.  Dealing with that should help your recovery, even while eating gluten.  Phosphatidyl Choline supplements can help your gut if digesting fats is a problem,  Consider that any medications you take could be causing some of the symptoms, aside from gluten.        
    • trents
      Welcome to the forum, @Ben98! If you have been consciously or unconsciously avoiding gluten because of the discomfort it produces then it is likely that your blood antibody testing for celiac disease has been rendered invalid. Valid testing requires regular consumption of generous amounts of gluten. The other strong possibility is that you have NCGS (Non Celiac Gluten Sensitivity) which shares many of the same symptoms with celiac disease but does not have the autoimmune component and thus does not damage the small bowel lining. It is 10x mor common than celiac disease. There is currently no test for NCGS. Celiac disease must first be ruled out. Some experts in the field believe it can be a precursor to the development of celiac disease. Having one or both of the primary genes for developing celiac disease does not imply that you will develop active celiac disease. It simply establishes the potential for it. About 40% of the population has the genetic potential but only about 1% develop active celiac disease. 
    • Ben98
      TTG blood test and total IGA tested on many occasions which have always remained normal, upper GI pain under my ribs since 2022. I had an endoscopy in 2023 which showed moderate gastritis. no biopsy’s were taken unfortunately. genetic test was positive for HLADQ2. extreme bloating after eating gluten, it’ll feel like I’ve got bricks in my stomach so uncomfortably full. the pain is like a dull ache under the upper left almost like a stitch feeling after a long walk. I am just wanting some advice has anyone here experienced gastritis with a gluten issue before? thank you  
    • Wheatwacked
      "Conclusions: The urinary iodine level was significantly lower in women with postmenopausal osteoporosis, and iodine replacement may be important in preventing osteoporosis"  Body iodine status in women with postmenopausal osteoporosis Low iodine can cause thyroid problems, but Iodine deficiency will not show up in thyroid tests.  Iodine is important for healing, its job is to kill off defective and aging cells (Apoptosis). Skin, brain fog, nails, muscle tone all inproved when I started taking 600 mcg (RDA 150 - 1000 mcg) of Liquid Iodine drops. Some with dermatitis herpetiformis, Iodine exacerbates the rash.  I started at 1 drop (50 mcg) and worked up to 12 drops, but I don't have dermatitis herpetiformis.
×
×
  • 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.