Cholestyramine. Anyone?

[Geriatric Newby Caregiver]

One of my wife's doctors just prescribed a "squestering" medication called Cholesystyramine, to help reduce the severity of her diarrhea.  The idea is that it binds excess bile acid (which appears to be a major factor with her). We will let you know how it works.

[Geriatric Newby Caregiver]

I forgot to mention that we had tried this drug once before,  but that was prior to the diagnosis when she was still consuming gluten regularly. No wonder it had no effect then.

[Scott Adams]

I think you mean Cholestyramine, and you may want to verify that it's gluten-free here:

https://dailymed.nlm.nih.gov/dailymed/search.cfm?labeltype=all&query=Cholestyramine 

Has this been working for her?

[Geriatric Newby Caregiver]

39 minutes ago, Scott Adams said:

I think you mean Cholestyramine, and you may want to verify that it's gluten-free here:

https://dailymed.nlm.nih.gov/dailymed/search.cfm?labeltype=all&query=Cholestyramine 

Has this been working for her?

You are right about the spelling. No, it duid not help. In fact, it may have increased the inflammation that is in her large intestine. We don't know what has been causing that, but it is in addition to the Celiac disease which is in the small intestine, of course.

The only thing that seems to have helped has been steroids, which she gets prior to a CT scan, due to allergic reactions to the IV contrast dye. A discussion of steroid therapy ensued, but since we are still eagerly awaiting the first appointment with a new GI doctor at Stanfor who actually is a specialist in both Celiac Disease and Motility,  we made the decision to wait on steroids since we do not wish to mask the pathology for the new doctor.

That appointment is not until May 10th!

In the meantime she has begun fluid infusions twice a week in addition to her daily TPN infusions for nutrition. We hope this will help keep her out of the hospital. Dehydration has been sending her back about a week following every time she has been discharged.

[Scott Adams]

Can I assume that she is not eating gluten-free oats (around 9% of celiacs have an additional sensitivity to avenin from oats)? Also, has she tried going dairy/casein-free, as this seems to be a common issue in celiacs, especially in the first year or two of a diagnosis?