Refractory Celiac Type 1

[Sharib]

Hi,

I was diagnosed with Celiac and removing gluten from my diet has not resulted in symptom improvement or small intestine healing.  My upper endoscopy a year later shows sever villous atrophy.  My GI doc in FL Cleveland Clinic referred me to a celiac and refractory celiac disease specialist in Ohio Cleveland Clinic.  He feels it could be a slow healing Celiac and possibly RCD (Refractory Celiac Disease Type 1).  Dr. Rubio-Tapia highly recommended Budesonide 3mg capsules three times a day and then tapering down and stopping the drug after one year.  
 

This June will be 3 years of having gastro symptoms.  I must stop the inflammation and start healing.  So, I am going to take Budesonide, nervously.  Does anyone have Refractory Celiac Type 1?  What copay assistance programs are available to help with the cost of this drug?

Thanks for input and any help,

Shari

[trents]

The physician prescribed Budesonide for refractory celiac disease? That certainly is an atypical application since it is a cortico-steroid normally prescribed for asthma and COPD.

Have you explored the idea with your doc of something common and inexpensive like prednisone?

How diligent are you in eliminating gluten from your diet? Studies have shown that most people who believe they are practicing gluten free eating are actually practicing low gluten eating because they are not taking into account cross contamination issues. Do you still eat out in restaurants?

[ravenwoodglass]

I agree that the OP might want to see if prednisone might work just as well.  In addition I found that this drug is also prescribed for Chrons and UC so apparently it is used for any instances where they want to 'calm' down someones system. It does have the same warnings as prednisone.

OP- I saw you asked about help with the cost of this med. Find out which company makes the drug and see if they have a 'coupon' for it. You could also check out "Good RX" prices at all your local pharmacies. I hope you are feeling better soon.

[Scott Adams]

We have a category dedicated to summaries of research done on refractory celiac here:

https://www.celiac.com/celiac-disease/celiac-disease-amp-related-diseases-and-disorders/refractory-celiac-disease-collagenous-sprue/

There is research to support your doctor on this:

 

[Sharib]

On 3/24/2022 at 10:22 AM, trents said:

The physician prescribed Budesonide for refractory celiac disease? That certainly is an atypical application since it is a cortico-steroid normally prescribed for asthma and COPD.

Have you explored the idea with your doc of something common and inexpensive like prednisone?

How diligent are you in eliminating gluten from your diet? Studies have shown that most people who believe they are practicing gluten free eating are actually practicing low gluten eating because they are not taking into account cross contamination issues. Do you still eat out in restaurants?

Hi,

Budesonide is used for RCD as well as pulmonary issues.  It’s been a long almost 3 yrs & removing gluten hasn’t helped.  My scope in February shows severe villous atrophy.  
 

I cook all my food and there certainly could have been cross contamination as one other person is not gluten-free.  We have since removed most of the gluten from the home.  
 

It’s difficult to write everything  that has gone on medically as well as what I’ve done in our home.  I’m diligent and I’m doing everything I can to heal.  It’s been such a long road.  I need to stop the inflammation and Budesonide might be the key.  Look up Dr. Rubio-Tapia & Dr. Murray.  They co-wrote a great article.  They have experience with Budesonide and RCD.

Thanks!

Shari

On 3/24/2022 at 12:57 PM, ravenwoodglass said:

I agree that the OP might want to see if prednisone might work just as well.  In addition I found that this drug is also prescribed for Chrons and UC so apparently it is used for any instances where they want to 'calm' down someones system. It does have the same warnings as prednisone.

OP- I saw you asked about help with the cost of this med. Find out which company makes the drug and see if they have a 'coupon' for it. You could also check out "Good RX" prices at all your local pharmacies. I hope you are feeling better soon.

Hi,

Check out my replies about why I will take Budesonide.  I will check out GoodRx.  I have insurance so I’m not sure if I can use their coupon code.

Thanks,

Shari

[joeyfulnoise]

On 3/24/2022 at 9:37 AM, Sharib said:

Hi,

I was diagnosed with Celiac and removing gluten from my diet has not resulted in symptom improvement or small intestine healing.  My upper endoscopy a year later shows sever villous atrophy.  My GI doc in FL Cleveland Clinic referred me to a celiac and refractory celiac disease specialist in Ohio Cleveland Clinic.  He feels it could be a slow healing Celiac and possibly RCD (Refractory Celiac Disease Type 1).  Dr. Rubio-Tapia highly recommended Budesonide 3mg capsules three times a day and then tapering down and stopping the drug after one year.  
 

This June will be 3 years of having gastro symptoms.  I must stop the inflammation and start healing.  So, I am going to take Budesonide, nervously.  Does anyone have Refractory Celiac Type 1?  What copay assistance programs are available to help with the cost of this drug?

Thanks for input and any help,

Shari

I was diagnosed in 2005 and have been gluten-free since, with the exception of 3 accidental "poisonings" (as my family calls it).  I underwent a routine colonoscopy last fall and it was determined that I have micro colitis.  I was put on Budesonide.  It helped for about a week, then I was back to the same old, same old.  I continued to take it for 2 months, but one of the side effects is swelling of the legs. I could not get socks or shoes on, and eventually developed cellulitis (and needed topical steroids and oral antibiotics).  I stopped the Budesonide. I asked about further testing for food allergies (gluten-free diagnosis was just the tip of the iceberg on food issues), but that idea was shot down.  I am now taking Cholestyramine, which I was told is a medication for high cholesterol (which I do not have) that has a side effect of stopping diarrhea.  So far, it is working, and it is cheap.   It seems that treatment of gut issues is a lot of 'by guess and by golly', even by the medical profession.  Good luck - and read up on side effects of medications.  

[Wheatwacked]

Budesonide may help control your symptoms, but it will not cure your condition.   https://medlineplus.gov/druginfo/meds/a608007.html

Quote

Overall, despite improvement in clinical symptoms, there was no change in the duodenal histology on treatment with budesonide... With an aim of minimizing the systemic side effects of corticosteroids, we assessed the role of a locally acting controlled-release corticosteroid, budesonide, in 29 patients with poorly responsive celiac disease. A beneficial clinical response to budesonide either used alone or in combination with systemic steroids or azathioprine was observed in 76% of patients. When budesonide was used in combination with oral steroids and/or azathioprine it is realized that all agents may have contributed to improvement in the patients’ condition, including the effect of a delayed response to the azathioprine.    https://celiacdiseasecenter.columbia.edu/wp-content/uploads/2018/12/2007-Budesonide-Use.pdf

 

Budesonide is a delayed release steroid, so the theory as I understand it of using the open capsule in refractory celiac disease by opening the cap more of the steroid is localized at the small intestine and less absorbed systemically. I suppose it is an attempt to delay secondary adrenal insufficiency, a major risk in any steroid. 

Three things to look at: 1) plasma vitamin D, 2) intake of potassium 3) intake of choline.

Possible Role of Vitamin D in Celiac Disease Onset

"research has explored the theory that those with celiac disease have lower concentrations of choline and choline-derived lipids."  https://www.glutenfreesociety.org/choline-deficiency-gluten/

 

Quote

Treatment is with supportive therapies and a strict gluten-free diet. Steroids can be considered, but should be used with caution, having been found to exacerbate hypokalemia [7]. Screening for vitamin and mineral deficiencies should be undertaken in patients presenting with coeliac crisis, as the consequences of prolonged deficiencies can cause significant morbidity.   https://bmcgastroenterol.biomedcentral.com/articles/10.1186/s12876-018-0784-0#:~:text=Celiac crisis%2C is a rarely,cardiac arrhythmias and respiratory failure.

 

Edited March 29, 2022 by Wheatwacked

[Sharib]

6 hours ago, joeyfulnoise said:

I was diagnosed in 2005 and have been gluten-free since, with the exception of 3 accidental "poisonings" (as my family calls it).  I underwent a routine colonoscopy last fall and it was determined that I have micro colitis.  I was put on Budesonide.  It helped for about a week, then I was back to the same old, same old.  I continued to take it for 2 months, but one of the side effects is swelling of the legs. I could not get socks or shoes on, and eventually developed cellulitis (and needed topical steroids and oral antibiotics).  I stopped the Budesonide. I asked about further testing for food allergies (gluten-free diagnosis was just the tip of the iceberg on food issues), but that idea was shot down.  I am now taking Cholestyramine, which I was told is a medication for high cholesterol (which I do not have) that has a side effect of stopping diarrhea.  So far, it is working, and it is cheap.   It seems that treatment of gut issues is a lot of 'by guess and by golly', even by the medical profession.  Good luck - and read up on side effects of medications.  

Hi,

My colonoscopy and biopsies have always been normal.  Many things have been ruled out in the colon and small intestine.  I have Celiac and Refractory Celiac could be possible.  I currently have no symptoms.  My last loose stool was March 4, 2022.  The reason Budesonide has been recommended by the Celiac/RCD specialist is due to the EGD showing severe villous atrophy at this point and the appearance of the small intestine.  There is so much inflammation and the ongoing inflammatory process needs to be calmed down.  I hope I don’t have side effects that would cause me to discontinue the medication.  I am not one to take medication, but I think it is necessary at this point.

Thanks for your input,

Shari

[Sharib]

On 3/29/2022 at 11:12 AM, joeyfulnoise said:

I was diagnosed in 2005 and have been gluten-free since, with the exception of 3 accidental "poisonings" (as my family calls it).  I underwent a routine colonoscopy last fall and it was determined that I have micro colitis.  I was put on Budesonide.  It helped for about a week, then I was back to the same old, same old.  I continued to take it for 2 months, but one of the side effects is swelling of the legs. I could not get socks or shoes on, and eventually developed cellulitis (and needed topical steroids and oral antibiotics).  I stopped the Budesonide. I asked about further testing for food allergies (gluten-free diagnosis was just the tip of the iceberg on food issues), but that idea was shot down.  I am now taking Cholestyramine, which I was told is a medication for high cholesterol (which I do not have) that has a side effect of stopping diarrhea.  So far, it is working, and it is cheap.   It seems that treatment of gut issues is a lot of 'by guess and by golly', even by the medical profession.  Good luck - and read up on side effects of medications.  

Hi,

So sorry you had side effects from Budesonide.  The other drug seemed to work for you.  I did read up on the drug & side effects.  I’m starting it today.  I’m nervous, but my family & I feel I need to give it a try.  I must see if it can reduce the inflammation in my small intestine so it can begin to heal.  I have been doing everything I possibly can to heal & it’s not working.  
Thanks for your input,

Shari

[joeyfulnoise]

Good luck, Shari, I hope it works and you get relief!

[Sharib]

1 hour ago, joeyfulnoise said:

Good luck, Shari, I hope it works and you get relief!

Thank you Joey!

 

[Scott Adams]

6 hours ago, Sharib said:

Hi,

So sorry you had side effects from Budesonide.  The other drug seemed to work for you.  I did read up on the drug & side effects.  I’m starting it today.  I’m nervous, but my family & I feel I need to give it a try.  I must see if it can reduce the inflammation in my small intestine so it can begin to heal.  I have been doing everything I possibly can to heal & it’s not working.  
Thanks for your input,

Shari

Please let us know how this works for you...and I hope it goes well!