Jump to content

  • 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):

Refractory 1

moomoo5

By moomoo5
in Super Sensitive People

 Share

Recommended Posts

moomoo5 Newbie
moomoo5
Posted

Is there anyone on here who has been diagnosed with Refractory 1 Celiac? I was just diagnosed. I have had celiac for 8 years, 2 years ago I had an autoimmune attack on my body and my healed celiac become worse than when I was first diagnosed. I made an appt with Dr. Fasano at MGCH and I tried the Fasano diet for 6 months, it did bring some inflammation down and heal some of the villi but not enough. Next he tried my on beudesonide for 4+ months and some of the villi began to unheal. He did a special test to see why this was happening and could see that my immune cells were going out of control and that I had refractory 1.  I did a special gene bloodtest and am waiting for results to see if I can start Imuran. I would love to talk to connect with others who have had this diagnosis as it is so rare.

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

Celiac.com Sponsor (A8-M):


cyclinglady Grand Master
cyclinglady
Posted

Hi!  

I am so sorry that you are dealing with refractory celiac disease.  You are fortunate to have access to a celiac expert!  

Recently, there was a mother who was searching for members who are also dealing with refractory celiac disease.  You might try contacting her using the private message feature on the forum.  Here is a link to her original posting:

https://www.celiac.com/forums/topic/109854-searching-for-refractory-friends/?tab=comments#comment-996063

If you do not mind  what kind of autoimmune attack occurred?  I personally had issues last year after a gluten exposure (unknown source), tooth infection, a cold and the flu all within a month.  I struggled with lingering gut issues, elevated antibodies (DGP and thyroid) and daily hives.  I tried the Fasano diet (with my doctor’s support) but did not get well.  Had a repeat endoscopy.  My villi had healed, but I had autoimmune gastritis which, like my thyroid, I have not control over them.  

Hopefully, some of the new drugs being developed will be available soon.  

http://www.thepatientceliac.com/2015/11/27/interleukin-15-and-celiac-disease/

I wish you well!  

GFinDC Veteran
GFinDC
Posted

Welcome to the forum moomoo! :)

There was forum member years ago with the user name of GlutenWrangler.  He doesn't visit much anymore but you could search for his content and maybe get something from his postings.

Here's one of his threads. 

 

jddh Contributor
jddh
Posted

Hi @moomoo5,

I've had a long & winding story in & out of non-responsive celiac activity. Most recently, I have some cellular evidence suggestive of type II RCD, but it's not confirmed. Anyway, I've learned too much about this stuff, and I'm definitely not healing. I can chat with you if you like.

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
 Share
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. trents
      - trents replied to HectorConvector's topic in Related Issues & Disorders
      356

      Terrible Neurological Symptoms

      Sciatica came to mind for me as well. You might want to get some imaging done on your C-spine.
    2. Aretaeus Cappadocia
      - Aretaeus Cappadocia replied to HectorConvector's topic in Related Issues & Disorders
      356

      Terrible Neurological Symptoms

      Maybe this is sciatica? When mine acts up a little, I switch my wallet from one back pocket to the other. this isn't a substitute for more serious medical help, but for me it's a bandaid.
    3. HectorConvector
      - HectorConvector replied to HectorConvector's topic in Related Issues & Disorders
      356

      Terrible Neurological Symptoms

      OK so I just learned something completely new about this for the first time in years, that is REALLY WEIRD. One of my nerves that likes to "burn" or whatever is doing it every time I bow my head! I mean it is completely repeatable. Literally every time. Once my head goes beyond a certain angle *boom*. Nerve goes mental (lower right leg pain). What the...
    4. Aretaeus Cappadocia
      - Aretaeus Cappadocia posted a topic in Gluten-Free Recipes & Cooking Tips
      0

      Zaalouk moroccan eggplant salad

      I've only made this a couple of times but it's really easy and I love the flavor. If you can, use all of the ingredients to get the full palette of flavors. I use fresh or canned tomatoes and I don't worry about peeling them. If you don't have harissa, there are replacement recipes online. If you don't have the greens, I suggest adding a little chopped...
    5. Scott Adams
      0

      Celiac.com Video News: April 2026

  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      134,060
    • Most Online (within 30 mins)
      10,442
    Cathy Bright
    Newest Member
    Cathy Bright
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.7k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • trents
      Terrible Neurological Symptoms

      By trents · Posted

      Sciatica came to mind for me as well. You might want to get some imaging done on your C-spine.
    • Aretaeus Cappadocia
      Terrible Neurological Symptoms

      By Aretaeus Cappadocia · Posted

      Maybe this is sciatica? When mine acts up a little, I switch my wallet from one back pocket to the other. this isn't a substitute for more serious medical help, but for me it's a bandaid.
    • HectorConvector
      Terrible Neurological Symptoms

      By HectorConvector · Posted

      OK so I just learned something completely new about this for the first time in years, that is REALLY WEIRD. One of my nerves that likes to "burn" or whatever is doing it every time I bow my head! I mean it is completely repeatable. Literally every time. Once my head goes beyond a certain angle *boom*. Nerve goes mental (lower right leg pain). What the hell. I've never seen a direct trigger such as this before that I can recall. The pain was the usual type I get from this problem - I suspect somehow the head movement was interrupting descending inhibition processes, causing the pain to leak through somehow.
    • Aretaeus Cappadocia
      Zaalouk moroccan eggplant salad

      By Aretaeus Cappadocia · Posted

      I've only made this a couple of times but it's really easy and I love the flavor. If you can, use all of the ingredients to get the full palette of flavors. I use fresh or canned tomatoes and I don't worry about peeling them. If you don't have harissa, there are replacement recipes online. If you don't have the greens, I suggest adding a little chopped baby spinach or celery leaves to add a dash of green color to this red dish. Best eaten in first couple days because flavor tends to fade. Leftovers are still good, but not as vibrant. Ingredients 2 medium eggplants, partially peeled and cut into cubes (original recipe says 1 in, but I prefer 1/2 to 3/4 in) 2 tomatoes, peeled and crushed 4 garlic cloves, finely chopped or minced 1 tablespoon fresh flat-leaf parsley, chopped 1 tablespoon fresh cilantro, chopped ¼ cup extra virgin olive oil 2 tablespoons spicy harissa (I use Mina brand) 1 teaspoon cumin 1 teaspoon paprika ½ teaspoon black pepper 1 tablespoon apple cider vinegar or lemon juice 1 tablespoon tomato paste (optional) Salt to taste Preparation     • Heat olive oil in skillet or pot over medium heat. Add all ingredients and cook for 10 minutes, stirring occasionally. Cover and cook on low heat for an additional 20 minutes, stirring occasionally.       • Serve warm or cold as a side or with bread for dipping. Enjoy! Original recipe is here, if you want to see photos: mina.co/blogs/recipes/zaalouk-moroccan-eggplant-salad  
    • xxnonamexx
      1 Year Elimination Diet journey

      By xxnonamexx · Posted

      I checked consumer labs that I'm a member of they independently check products for safely and claims the wolfs was rated great and bobs redmill buckwheat cereal. Ultra low gotten no dangerous levels of arsenic heavy metals, mold, yeast etc. plus they mention to refrigerate. I wonder if the raw buckwheat they rinse bc it's not toasted like kasha. Toasted removes the grassy taste I have to try the one you mentioned. I also bought Qia which is a quinoa mixed got great reviews. 
×
×
  • Create New...