Visit the Microscopic Colitis Foundation Website
One month from coming 100% off Entocort (after a year) I am, so far, doing pretty well. Just one D and 80% firmish or Norman BMs....fingers crossed.
Tex, from your comment in another post it seems that this means I have crossed my Rubicon. I am OK with this and I think/hope I have identified my full set of intolerance (G,D,S, other legumes, egg whites and nightshades). I intend to stay as strict as possible to not eating these.
Here is some recent correspondence between my GI and I...
I wrote a letter to him (that way he can't charge me for a 'consultation'). I only told him what I thought would not make him mad - so no mention of Enterolab or (shock horror) an internet support group of 650 people with MC (bigger then most clinical research samples). I was testing him (but he did not know that). I wanted to inform him that diet appeared to be important and see how he reacted. here is my letter:
This was his reply:Dear Dr XXX,
Firstly may I thank you for three things:
1. The Dx of Lymphocytic Colitis, that removed much mystery (and thus fear) from my chronic symptoms
2. The medical treatments that you put me on (Pepto Bismol, followed by Entocort), both of which helped considerably in reducing symptoms and bringing my life back to a semblance of normality.
3. Re-embursing the unused Salofalk
I thought you might find my journey to (hopefully) remission useful......
When I saw you at the end of last year there was evidence of slow improvement to my symptoms, but flares where still occurring and I was still on 9mg Entocort a day. You suggested a complete taper off from Entocort and an overlapping switch to mesalazine (Salofalk). Given a positive, if erratic trend, on Entocort I decided to try and taper of Entocort without using the mesalazine (I was happy the mesalazine was there in case I gave up on the attempt)
I also had deduced from my food diary and stool consistency/bowel movement/bloating/gut rumbling signs that certain foods where aggravating symptoms (up to 48 hrs after consumption). This was complicated since, given an inflamed gut, some foods might have been intolerances (stimulating an immune reaction) while others just irritants (causing similar symptoms).
I started taking diet seriously about a month after starting Entocort (about a year ago). Initially I cut out gluten and dairy, then soy, then all legumes and nightshades. From January this year I tapered off Entocort. Without the prop of Entocort I still had a few flares and could always trace these back to diet "adventures". I treated these flares with a short burst of Pepto Bismol and immodium and a return to very safe diet (steamed rice, chicken, fish, well cocked vegetables).
I am now treating myself only with diet and as my gut continues - hopefully - to settle down, i will attempt to re introduce foods e.g. uncooked vegetables, potatoes and some cheeses. Given my reactions to gluten I have no desire to ever eat it again.
It is also interesting that a bone density scan (last Nov) showed I have osteoporosis. The first symptoms of this (rib fracture with minimal stress) was after about 6 months of chronic diarrhea, while I was still on the Pepto Bismol treatment and before I started Entocort. This suggests something was causing this before steroids. E.g. malnutrition??. I note that celiacs have above average incidence to osteoporosis. I also had significant vitamin and mineral deficiencies shown at the same time. Very low vitamin C, D, B12 and Folic Acid (while testosterone and levels of calcium in serum were normal).
I will continue to supplement until mineral and vitamin levels are normal. I believe that as my stools return to normal, I will absorb more nutrients. (My stools are firm but some still float - suggesting possible continued malabsorption).
This is a long note, but I hope useful feedback. Again many thanks for setting me on a path to wellness.
I am sorry that I could not speak to you directly when you called into the Clinic last week
Thank you for the email summary. A few comments from me:
1. You were not meant to stay on Entocort long-term but I am delighted that both the Pepto-Bismol and Entocort did help relieve symptoms.
2. Dietary manipulation is always worthwhile. The only thing that I might have expected to help would be reduction in the lactose-containing foods and the wheat products.
3. Improvement after stopping gluten does not necessarily equate to having Coeliac Disease. If you wish to know whether you are Coeliac then you would need to return to a full gluten diet for three weeks before having and upper GIT endoscopy performed - the logic being that Coeliac Disease is diagnosed most effectively on a biopsy material taken from the duodenum.
4. Osteoporosis is, unfortunately, quite common in otherwise healthy man. It does not necessarily imply either that you are malabsorbing or that you are taking an agent which is interfering with bone metabolsim.
5. Finally, whether a stool floats or sinks does not depend on malabsorbition but simply on the amount of gas contained in the stool volume.
I would be interested in any comments.
Best wishes, Ant
and kudos to him, if he is.
Someday we will make believers out of our docs, and you have made a great start. As Tex said, your doc has a beginning understanding at least. I would bet that his letter to you would have been different if it had been written a year ago. I do think you are educating him, slowly but surely.
(I think wine helps me digest - but of course that could be post-rationalization for what I want to do anyway 
).
.... so let's say I am "Paleoflexibarbarious"
Don't know about the espresso, but I would guess that the caveman was exposed to fermented grapes. What do you think?
