Refractory Celiac Disease

[sophi0547]

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???

[bartfull]

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]

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]

PS - This article stands out:

Most Cases of Non-Responsive Celiac Disease Due to Ongoing Gluten Consumption

[sophi0547]

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]

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]

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.

[sophi0547]

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]

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/

[crazymurdock]

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.