Refractory celiac disease

[Samantha Jones]

Hello,

i recently had an enteroscopy and I was told that my villi are no longer atrophied however I do still have refractory celiac disease. I don’t understand what this means. I continue to not eat out, cook everything from home, eat 85% organic. I was told that I could try budesminde for 6 months to remove the inflammation. But I don’t have an appointment until late June to see another celiac specialist. I don’t know what the best course of action is. I’ve had to navigate all of this on my own. Any advice or thoughts are appreciated. 

[cyclinglady]

9 hours ago, Victoria smiles said:

Hello,

i recently had an enteroscopy and I was told that my villi are no longer atrophied however I do still have refractory celiac disease. I don’t understand what this means. I continue to not eat out, cook everything from home, eat 85% organic. I was told that I could try budesminde for 6 months to remove the inflammation. But I don’t have an appointment until late June to see another celiac specialist. I don’t know what the best course of action is. I’ve had to navigate all of this on my own. Any advice or thoughts are appreciated. 

I am sorry that you are struggling with this diagnosis.  

Is this the second GI to diagnose you with refractory celiac disease?  I think I am a little confused.  Could you clarify?  If so, it might be a good idea to trial the medication, if two GIs gave you a diagnose of refractory celiac disease.  

Were other conditions ruled out (e.g. Crohn’s, SIBO)?  You can have concurrent health issues.  For example, while I have healed from Celiac disease, my GI diagnosed me with autoimmune gastritis.  Before I had that repeat endoscopy, I did trial the “Fasano”diet.  I was pretty sure that I was getting hidden gluten into my diet, despite my best efforts.  Turns out I was wrong.  The Gastritis was a separate issue which can cause anemia and a B12 deficiency (as can celiac disease).  

Perhaps strict gluten-free diet might help you?  Here is more information about the diet:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3598839/

I mention the strict gluten-free diet because several members who diagnosed incorrectly as having refractory celiac disease.  Turns out that they were getting hidden gluten into their diets despite being super careful.  Are you on medications?  Are they gluten free?  Do you live in a gluten-free household?  

Here is more information on non-responsive or refractory celiac disease.

https://www.beyondceliac.org/celiac-disease/refractory-nonresponsive-celiac-disease/

I hope this helps.  

[Samantha Jones]

On 3/21/2020 at 11:07 PM, cyclinglady said:

I am sorry that you are struggling with this diagnosis.  

Is this the second GI to diagnose you with refractory celiac disease?  I think I am a little confused.  Could you clarify?  If so, it might be a good idea to trial the medication, if two GIs gave you a diagnose of refractory celiac disease.  

Were other conditions ruled out (e.g. Crohn’s, SIBO)?  You can have concurrent health issues.  For example, while I have healed from Celiac disease, my GI diagnosed me with autoimmune gastritis.  Before I had that repeat endoscopy, I did trial the “Fasano”diet.  I was pretty sure that I was getting hidden gluten into my diet, despite my best efforts.  Turns out I was wrong.  The Gastritis was a separate issue which can cause anemia and a B12 deficiency (as can celiac disease).  

Perhaps strict gluten-free diet might help you?  Here is more information about the diet:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3598839/

I mention the strict gluten-free diet because several members who diagnosed incorrectly as having refractory celiac disease.  Turns out that they were getting hidden gluten into their diets despite being super careful.  Are you on medications?  Are they gluten free?  Do you live in a gluten-free household?  

Here is more information on non-responsive or refractory celiac disease.

https://www.beyondceliac.org/celiac-disease/refractory-nonresponsive-celiac-disease/

I hope this helps.  

 

On 3/21/2020 at 11:07 PM, cyclinglady said:

I am sorry that you are struggling with this diagnosis.  

Is this the second GI to diagnose you with refractory celiac disease?  I think I am a little confused.  Could you clarify?  If so, it might be a good idea to trial the medication, if two GIs gave you a diagnose of refractory celiac disease.  

Were other conditions ruled out (e.g. Crohn’s, SIBO)?  You can have concurrent health issues.  For example, while I have healed from Celiac disease, my GI diagnosed me with autoimmune gastritis.  Before I had that repeat endoscopy, I did trial the “Fasano”diet.  I was pretty sure that I was getting hidden gluten into my diet, despite my best efforts.  Turns out I was wrong.  The Gastritis was a separate issue which can cause anemia and a B12 deficiency (as can celiac disease).  

Perhaps strict gluten-free diet might help you?  Here is more information about the diet:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3598839/

I mention the strict gluten-free diet because several members who diagnosed incorrectly as having refractory celiac disease.  Turns out that they were getting hidden gluten into their diets despite being super careful.  Are you on medications?  Are they gluten free?  Do you live in a gluten-free household?  

Here is more information on non-responsive or refractory celiac disease.

https://www.beyondceliac.org/celiac-disease/refractory-nonresponsive-celiac-disease/

I hope this helps.  

Hello,

so I saw another specialist which was a referral from the specialist that told me I have refractory celiac disease. The new specialist conferred with a “top doctor in the Celaic community “ and they both concluded that I do not have refractory Celaic disease based on the cell clonality of my biopsies. I don’t know what to believe anymore. I felt brushed off, rushed but reassured I don’t have a “cancer type “ clonality. Sorry for late response I didnt see someone wrote back to me. Anyway- I don’t know what to do. 
 

does anyone know if I can see a doctor in another state and have it covered by insurance? I know I can call around but I figured since I was writing here I would ask. Thank you in advance for all advice and thoughts. 

[Samantha Jones]

Sorry ,

I just reread you reply again. The “Fasano” diet. That’s the doctor that my specialist consulted about my biopsy clonality to see if I have refractory celiac disease. I do have anemia. My labs just came back. I’ve had my DNA checked and I do have MTHFR so I’m working on also fixing my b-12 as it was low too. 
 

how do I get someone to test me for autoimmune gastritis ? I’ve been diagnosed with regular gastritis in the past. But upon my last enteroscopy there was no gastritis. 
 

when I told this new specialist (the one who consulted with Fasano) that my iron had dropped from 135 to 35 in 3 months (the 35 lab value was the labs the new specialist ordered ) she said your iron is fine. I’m not worried. I said I feel terrible. She said I can only treat your celiac symptoms and from a Celaic point youre fine.  I know I feel exhausted all the time. Weak, fatigue , can barely exercise without shortness of breath , on and on. Anyway - looks like I have a lot more digging to do and information seeking. Thanks for listening.