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

Blackwolf

Recommended Posts

Blackwolf Rookie
Blackwolf
Posted

Hello Karen,

Yesterday I logged onto the "board" for the first time althoughI have been receiving the online newsletter for a couple of years. I asked if anyone else had been diagnosed with refractory sprue and Lisa, or Momma Goose, told me I should get in touch with you.

I was in the Mayo Clinic last spring when, after a week's worth of tests they diagnosed my celiac disease as having morphed into refractory sprue. I'd just like to be in touch with one other person in the world who has to deal with this too.

Thanks,

Susan Blackwolf

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

Celiac.com Sponsor (A8-M):


Canadian Karen Community Regular
Canadian Karen
Posted

Yep, that would be me!

I have been totally, 100% gluten-free for over 3 years now, and my bloodwork has come down from way over 100 to the last result of 13 (within normal range), but the last biopsy last August showed complete villous atrophy still. There has been no repair in any way, and have been told there never will be. Also, last year they also found out I have collagenous colitis, which explains why I have had nothing but watery diarrhea for over a decade now (seriously, that's how long it has been since I have had anything solid), and I go usually around 15-20 times a day. It is particularly nocturnal too, it seems to be most active at night......

I have been unresponsive to both budesonide and prednisone. The specialist (I go to a professor at St. Michael's Hospital in Toronto who specializes in celiac) think because I have both refractory celiac and collagenous colitis, it is like a 1 - 2 punch that is just too much for the steriods to be able to overcome.

Does it get me down? Nope. I have been keeping track of this for some time and the research that is ongoing in this particular area is very promising. I have no doubt that in the very near future, the key to unlock this whole mystery on how to tackle this will be found. Of that I have no doubt!

Welcome to the board and any questions, just ask away!

Karen

  • 11 years later...
moomoo5 Newbie
moomoo5
Posted

I was just diagnosed yesterday with Refractory type 1, about to start imuran

 

ch88 Collaborator
ch88
Posted

Open Original Shared Link

Jpate Rookie
Jpate
Posted

My name is John I have had celiac disease  since I was  born  but  only diagnosed  with it 6 year's  ago. I  also have refactory type two celiac disease for the past 4 year's  and have got  total  villous atrophy. I have  a Marsh 3c. 

I have been taking budesonide and azathioprine, I also have osteoporosis and anemia.  I have been seeing the  top man in the UK and I go to the hospital  every  6 to 8 weeks  to have  my bloods checked

 

GFinDC Veteran
GFinDC
Posted

Welcome John!  We are glad you joined us!  :)

cyclinglady Grand Master
cyclinglady
Posted
On 8/4/2018 at 7:03 PM, ch88 said:

Open Original Shared Link

This is excellent advice.  Many people with non-responsive celiac disease who have been misdiagnosed with refractory celiac disease have responded on this very strict gluten free diet.  Definitely worth trying. 

Many of us here refer to it as the Fasano diet, named after Dr. Fasano, one of the leading celiac disease researchers.  

Open Original Shared Link

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.

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. Jacki Espo
      - Jacki Espo replied to Itsabit's topic in Dermatitis Herpetiformis
      3

      SkinSafe

      For me I gave up oat products and it finally cleared. I had a whole body reaction for months. Two additional culprits for me: shared grill at a restaurant or a shared toaster. Hope you have relief soon.
    2. Russ H
      - Russ H replied to Itsabit's topic in Dermatitis Herpetiformis
      3

      SkinSafe

      It can take between 6 months and 2 years for the dermatitis herpetiformis rash to resolve. The symptoms of dermatitis herpetiformis arise from deposits of certain antibodies building up in the skin. These deposits attract immune cells leading to inflammation and blistering. It can take 10 years for the deposits to be reabsorbed although symptoms resolve long...
    3. trents
      - trents replied to Itsabit's topic in Dermatitis Herpetiformis
      3

      SkinSafe

      Welcome to the forum, Linda! Many on this forum can sympathize with you. It can be extremely difficult to get reliable information about gluten when it comes to meds, supplements and oral hygiene products. This is especially true since so much of this stuff is generic and comes from over seas. I will deflect with regard to your question about meds...
    4. Itsabit
      - Itsabit posted a topic in Dermatitis Herpetiformis
      3

      SkinSafe

      Hi. I’m 70 years old, and a 22 year survivor of head and neck cancer treated with chemo-radiation, which resulted in non-existent submandibular salivary glands and extreme dry mouth and altered oral mucosa. I have been using dry mouth toothpaste, Rx oral dentrifices and moisturizers for years. I’ve recently been diagnosed with severe celiac dermatitis her...
    5. trents
      - trents replied to Cathijean90's topic in Introduce Yourself / Share Stuff
      1

      I’m terrified it’s too late for me😭

      Welcome to the forum, @Cathijean90! I went 13 years from the first laboratory evidence of celiac disease onset before I was diagnosed. But there were symptoms of celiac disease many years before that like a lot of gas. The first laboratory evidence was a rejected Red Cross blood donation because of elevated liver enzymes. They assume you have hepatitis...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      128,315
    • Most Online (within 30 mins)
      7,748
    Gramma Dukes
    Newest Member
    Gramma Dukes
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.1k
    • Total Posts
      70.8k
  • Celiac.com Sponsor (A22):



  • Who's Online (See full list)

    • There are no registered users currently online
  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Jacki Espo
      SkinSafe

      By Jacki Espo · Posted

      For me I gave up oat products and it finally cleared. I had a whole body reaction for months. Two additional culprits for me: shared grill at a restaurant or a shared toaster.  Hope you have relief soon. 
    • Russ H
      SkinSafe

      By Russ H · Posted

      It can take between 6 months and 2 years for the dermatitis herpetiformis rash to resolve. The symptoms of dermatitis herpetiformis arise from deposits of certain antibodies building up in the skin. These deposits attract immune cells leading to inflammation and blistering. It can take 10 years for the deposits to be reabsorbed although symptoms resolve long before this.
    • trents
      SkinSafe

      By trents · Posted

      Welcome to the forum, Linda! Many on this forum can sympathize with you. It can be extremely difficult to get reliable information about gluten when it comes to meds, supplements and oral hygiene products. This is especially true since so much of this stuff is generic and comes from over seas. I will deflect with regard to your question about meds and oral products but take you in another direction. Have you tried a low iodine diet. Iodine is known to exacerbate dermatitis herpetiformis and some find that a low iodine diet helps reduce the number of outbreaks. By the way, have you had your celiac antibodies retested recently? If they are elevated that might be a clue that you are getting gluten in your oral hygiene products or meds.
    • Itsabit
      SkinSafe

      By Itsabit · Posted

      Hi. I’m 70 years old, and a 22 year survivor of head and neck cancer treated with chemo-radiation, which resulted in non-existent submandibular salivary glands and extreme dry mouth and altered oral mucosa. I have been using dry mouth toothpaste, Rx oral dentrifices and moisturizers for years.  I’ve recently been diagnosed with severe celiac dermatitis herpetiformis. I was being treated with oral Dapsone, but it was not effective and I developed some serious side effects. So, the medication was stopped and I was started on Doxycycline (another antibiotic) for inflammation. I’ve been using Rx Betamethasone steroid ointment with little to no effect. I have tried every oral and topical antihistamine treatment available OTC. None have touched this horrible relentless itching. That is my history.  Now to my question. Does anybody know about gluten free toothpastes and mouth moisturizers? I ask because a very common dry mouth brand stated to me that they were indeed gluten free. But as I am not getting any better with my dermatitis herpetiformis, I was wondering if I was getting glutenized some way other than diet as  I have been following a strict clean gluten free diet, but I am not seeing any improvement at all. So, I started looking up the toothpastes and moisturizer ingredients individually and nine (9) of the eleven (11) or so listed showed up as   containing gluten or that may have gluten! Am I getting glutenized orally by these products?  As an aside, I checked on my favorite lavender scented baby lotion which is supposed to be gluten free, but many of those ingredients when investigated separately, show they  do contain or may contain gluten as well. I stopped using the lotion. But I cannot forgo my dental care. I was unable to get any information from the manufacturer of my current brand of chewable multivitamins either. They told me to check with my doctor. If THEY don’t know what’s in their product, how do they think a PCP will?  In light of all this, I am confused and angry that I might keep getting contaminated with gluten through products I am using that are supposedly gluten safe. *I should also state that I have a nickel allergy since I was about 12-13 years old. And I developed a contact allergy to latex (gloves) when I was a student nurse at 19 years old.  I know and I’m sorry that this is so lengthy. I’m trying to do everything I can to combat this condition, and I’m feeling very confused, anxious and angry about not getting adequate information as I try to educate and advocate for myself. I’m hoping someone here is more knowledgeable than me of how to navigate through all of this. Can anyone offer any advice?  Thank you for your time.  Respectfully,  Linda
    • trents
      I’m terrified it’s too late for me😭

      By trents · Posted

      Welcome to the forum, @Cathijean90! I went 13 years from the first laboratory evidence of celiac disease onset before I was diagnosed. But there were symptoms of celiac disease many years before that like a lot of gas. The first laboratory evidence was a rejected Red Cross blood donation because of elevated liver enzymes. They assume you have hepatitis if your liver enzymes are elevated. But I was checked for all varieties of hepatitis and that wasn't it. Liver enzymes continued to slowly creep up for another 13 years and my PCP tested me for a lot of stuff and it was all negative. He ran out of ideas. By that time, iron stores were dropping as was albumin and total protein. Finally, I took it upon myself to schedule an appointment with a GI doc and the first thing he did was test me for celiac disease. I was positive of course. After three months of gluten free eating the liver enzymes were back in normal range. That was back in about 1992. Your story and mine are more typical than not. I think the average time to diagnosis from the onset of symptoms and initial investigation into causes for symptom is about 10 years. Things are improving as there is more general awareness in the medical community about celiac disease than there used to be years ago. The risk of small bowel lymphoma in the celiac population is 4x that of the general population. That's the bad news is.  The good news is, it's still pretty rare as a whole. Yes, absolutely! You can expect substantial healing even after all these years if you begin to observe a strict gluten free diet. Take heart! But I have one question. What exactly did the paperwork from 15 years ago say about your having celiac disease? Was it a test result? Was it an official diagnosis? Can you share the specifics please? If you have any celiac blood antibody test results could you post them, along with the reference ranges for each test? Did you have an endoscopy/biopsy to confirm the blood test results?
×
×
  • Create New...