Hello all,
I've been lurking about on this forum for too long. So its time I told my own sad story
START
Day 0 -- Have colonoscopy -biopsies indicate I have LC
Day 1 -- Start on Entocort 9mg per Day.
Day 3 -- Blood tests indicate that I a not celiac
Day 5 -- D disappears and my bowel movements are normal
Day 10 -- D returns So after looking at this forum I go gluten free. ( which is a real pain!!)
Day 13 -- D disappears and I am OK. In fact I have some constipation
Day 20 -- I explain to my gastroenterologist that I have gone gluten free and that its working. So he books me in for a gastroscopy so that he can take biopsies from the duodenum/small intestine. In order for the test to work he explains to me that I shall have to eat some gluten food.
Day 33 -- Reduce entocort to 6mg per day. Bowel movements OK
Day 40 -- Start Back on a gluten diet ( this means normal pasta and bread but no beer)
Day 45 -- no D everything fine
Day 47 -- have gastroscopy. Biopsies from small intestine indicate I am not celiac.
Day 51 -- D returns with a vengence !!
So this is where Im at. And I'm quite confused. After looking thou the forum. I notice that most people with LC have a severe and almost immediate reaction to gluten in food. In my case this appears not to be so. For the past eight years I have also been on the anti-pysychotic clozapine. This may or may not be relevent.
Any comments welcome.
.... Henry
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Henrys Story
Moderators: Rosie, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hello Henry, 
here. I understand from your story you were 51 days ago diagnosed with LC and since than the D is coming and going. Finding a way to deal with this disease (and achieve full remission, yes that is possible) is a story of trial and error. There is not just one guide line to it. We all seem to react different to different approaches. Although there are some generality. For almost everybody entocort works. Also a lot of us do very well on a diet. As I understand from your story you had a good an quick reaction to gluten free food. A lot of the members here control their MC (with success) with a diet. Almost everybody reacts to gluten and dairy and about half to soy too. So yes it is no fun and easy, to have to change your life and go an strict and sometimes quite complicated diet. But it can give you your life back. I find it worth the effort the full 100%.
There is a way to find out which foods you are reacting too; www.enterolab.nl. This is a research facility of Dr Fine, who did as one of the few scientist research on MC (because he suffers from this disease himself). He developed a gluten sensitivity test (a stool test) that is far more sensitive than the celiac blood test. Just take a look at the website and decide yourself what you think of it. I see from your flag you are from the UK. it is possible to do the enterolab testing oversees (I did it from the Netherlands.)
Also some medication can cause or be of influence on MC, I have no idea if that is the case with the medication you are taking. I am sure others will provide you wiht an answer to that question.
I hope this board will help find a solution for the MC. Ask as many questions as you want and again
here. I understand from your story you were 51 days ago diagnosed with LC and since than the D is coming and going. Finding a way to deal with this disease (and achieve full remission, yes that is possible) is a story of trial and error. There is not just one guide line to it. We all seem to react different to different approaches. Although there are some generality. For almost everybody entocort works. Also a lot of us do very well on a diet. As I understand from your story you had a good an quick reaction to gluten free food. A lot of the members here control their MC (with success) with a diet. Almost everybody reacts to gluten and dairy and about half to soy too. So yes it is no fun and easy, to have to change your life and go an strict and sometimes quite complicated diet. But it can give you your life back. I find it worth the effort the full 100%. There is a way to find out which foods you are reacting too; www.enterolab.nl. This is a research facility of Dr Fine, who did as one of the few scientist research on MC (because he suffers from this disease himself). He developed a gluten sensitivity test (a stool test) that is far more sensitive than the celiac blood test. Just take a look at the website and decide yourself what you think of it. I see from your flag you are from the UK. it is possible to do the enterolab testing oversees (I did it from the Netherlands.)
Also some medication can cause or be of influence on MC, I have no idea if that is the case with the medication you are taking. I am sure others will provide you wiht an answer to that question.
I hope this board will help find a solution for the MC. Ask as many questions as you want and again