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 Celiac Disease

sophi0547

By sophi0547
in Super Sensitive People

Recommended Posts

sophi0547 Newbie
sophi0547
Posted

I was dx with celiac disease in August 2013.

Now I have been dx with Refracory Celiac Disease Type 2.

Anyone know much about it or have the same???

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

Celiac.com Sponsor (A8-M):


bartfull Rising Star
bartfull
Posted

Tell us a bit more. How were you diagnosed the first time, what is your diet like, how were you diagnosed refactory? Are you 100% sure you haven't been getting glutened somehow, like say from an old cast iron pan, a wooden spoon, the old toaster, medications, etc? Do you have a shared household with gluten eaters? Do you eat in restaurants?

 

Welcome to the forum. Now let us know a bit more about you and maybe we can help. :)

Scott Adams Grand Master
Scott Adams
Posted

We have a lot of articles on this topic here:

https://www.celiac.com/categories/Celiac--Disease--Research..--Associated--Diseases--and--Disorders/Refractory--Celiac--Disease--____--Collagenous--Sprue-c-3352

Scott Adams Grand Master
Scott Adams
Posted

PS - This article stands out:

Most Cases of Non-Responsive Celiac Disease Due to Ongoing Gluten Consumption
sophi0547 Newbie
sophi0547
Posted
  • Author

i was dx in August 2013 by bld test and biopsy. Have been 80% gluten free the first six months and since then no GLUTEN, I live alone got a new toaster new wooden spoons and do not use a dast iron skillet.

 

I do not eat out much as my work schedules makes me miss lunch 2-3 times a week. No family history

 

T cells were abnormal on first biopsy. Have been seeing a Tcell Oncologist since Nov 2013. Just started ina medical study for Lympoma patients though I have no tumur yet

Thanks to everyone

sophi0547 Newbie
sophi0547
Posted
  • Author

Tell us a bit more. How were you diagnosed the first time, what is your diet like, how were you diagnosed refactory? Are you 100% sure you haven't been getting glutened somehow, like say from an old cast iron pan, a wooden spoon, the old toaster, medications, etc? Do you have a shared household with gluten eaters? Do you eat in restaurants?

 

Welcome to the forum. Now let us know a bit more about you and maybe we can help. :)

I was dx in August 203 after a 50# weight loss by bld work and biopsy. have been having scopes every 6 months and all show more damage and Tcell abnormal. I have been seeing a Tcell oncologist since Nov 2013.

I'm now in  research on Lympoma study.

 

I live alone. First 6 months 80% gluten free but since then have been 100% free. Cleaned the kitchen, got a new toster new spoons and all. I rarely eat out

MJ-S Contributor
MJ-S
Posted

What foods are you eating? Specifically, which processed foods?

 

The next step for you would be to try to Fasano diet, which is specifically designed for people exactly in your situation. It focuses on eliminating trace gluten contamination in the diet by eliminating processed "gluten-free" foods. His book is excellent.

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

Celiac.com Sponsor (A8-M):


sophi0547 Newbie
sophi0547
Posted
  • Author

What foods are you eating? Specifically, which processed foods?

 

The next step for you would be to try to Fasano diet, which is specifically designed for people exactly in your situation. It focuses on eliminating trace gluten contamination in the diet by eliminating processed "gluten-free" foods. His book is excellent.

Whos book

kareng Grand Master
kareng
Posted

Whos book

 

 

Dr fasano.

 

 

Here is a good explanation of his research with patients with "refractory" 

https://www.celiac.com/gluten-free/blog/1038/entry-1780-the-gluten-contamination-elimination-diet-summary-of-dr-fasanos-recent-paper/

  • 4 weeks later...
crazymurdock Apprentice
crazymurdock
Posted
Hi sophi054, the medical study you are enrolled in, is it for monoclonal antibody therapy? I was also diagnosed with RCD type 2 back in May, and then reconfirmed in August after many tests at Mayo Clinic. I had clonal t-cells with villous atrophy with increased intraepithelial lymphocytes despite years of being gluten free. I was diagnosed with Celiac Disease in 2003. After the first diagnosis of RCD type 2, I was put on a daily dosage of budesonide and the 11 years of diarrhea finally ended. I am enrolled as a study participant with Dr. Murray at Mayo using the monoclonal antibody therapy - and now have been reclassified as type one. After the last treatment in October, I am happy to say that I am back to the weight I was before all I had lost January - May of last year. My color has returned and my energy is slowly coming back. My biopsy from November’s endoscopy was night and day difference from the one I had in August. I hope you have success with your study.

Archived

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

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


  • Member Statistics

    • Total Members
      131,381
    • Most Online (within 30 mins)
      7,748
    AHD
    Newest Member
    AHD
    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

    • Rogol72
      Draft gluten-free ciders… can they be trusted ?

      By Rogol72 · Posted

      A friend of mine is in the bar trade most of his life and has never heard of lines being mixed for different type of beers and ciders. Better to stick with cans.
    • Rejoicephd
      Draft gluten-free ciders… can they be trusted ?

      By Rejoicephd · Posted

      Thanks very much for confirming my suspicion @Scott Adams! That helps a lot because I'm really trying to track down and get rid of these sources of cross-contact and so I'm going to just rule out the draft ciders and hope that helps. Also @Rogol72 its nice to hear you haven't had a problem on that side of the pond - draft cider lines being used for cider only certainly sounds like the right way to do it, but I think that must not always be practiced over here! 
    • Zuma888
      Gluten challenge and Hashimoto's Thyroiditis

      By Zuma888 · Posted

      I didn't ask a doctor about this actually. I did ask several doctors a long time ago and they told me gluten has nothing to do with hashimoto's. One of them told me to do a gluten challenge to test for celiac, but at the time I was in graduate school so couldn't afford to be even more ill than I was. If you have the symptoms, I really don't advise you to do a gluten challenge. It messed me up mentally and physically for months. At the same time, I benefitted from doing the challenge in the sense that it convinced me that all my symptoms were truly from gluten - even stuff like insomnia! So now I am terrified to eat gluten, whereas before I would have a little once in a while and not notice anything dramatic. 
    • Winnie-Ther-Pooh
      Gluten challenge and Hashimoto's Thyroiditis

      By Winnie-Ther-Pooh · Posted

      I am in a similar situation where I can't feasibly do a gluten challenge but have all the symptoms and I have 2 celiac genes. I'm curious if your doctor advised you to eat as if you had a diagnosis or if they were more dismissive about it. 
    • Zuma888
      Gluten challenge and Hashimoto's Thyroiditis

      By Zuma888 · Posted

      Negative, although I had most of the symptoms of celiac disease. I now eat as if I had a diagnosis.
×
×
  • Create New...