New diagnosis (MC), doctor is not being clear with me? HELP?

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cantankerous sparrow
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New diagnosis (MC), doctor is not being clear with me? HELP?

Post by cantankerous sparrow »

Hi all,

Newbie here. I was diagnosed with Lymphocytic Colitis back in February, after a colonoscopy with biopsy. I'm writing here today because I'm very confused. I've met with my GI doc once after the scope, and he is giving me conflicting information with no follow-up. I will say that after my diagnosis, he did recommend taking Budesonide, but however...due to other issues, steroid type medications are not a good fit for me (I have raging anxiety). Thus, I am trying to control this with diet. I have been gluten free since November with minimal success. I have noticed some improvement in gas, bloating and frequency, but it's definitely not normal. I recently ordered the EnteroLab test, and I am waiting for it to come in the mail.

Here is where my confusion lies. I asked my GI if MC was an autoimmune issue, to which he said NO. He also said that once I get this under control, it's a one and done type of thing and will probably never be an issue again. Is this accurate? I thought MC was an autoimmune disease? This is particularly concerning to me due to the face that autoimmune issues run in my family (my father has MS and RA, and my sister has Hashimotos). I also thought that MC never really goes away, and that you can go into remission, but it's kind of always with you? Any advice and clarification would be greatly appreciated.

Thanks all for the help.

- Brooke
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tex
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Post by tex »

Hi Brooke,

Welcome to the group. Your are correct — it appears that your GI doc knows very little about this disease, unfortunately. Once it becomes active, MC is a lifelong disease. We can control the symptoms by changing our diets, but it's always waiting in the shadows to zap us if we slip up on our diet. And it is indeed an AI disease. Hopefully, your EnteroLab results will be available soon, and they will pinpoint the additional foods that you need to be avoiding.

Incidentally, your raging anxiety is due to a chronic magnesium deficiency. A magnesium deficiency is associated with all AI diseases, and in addition, MC depletes magnesium levels. That may be why AI diseases are so common in your family. Your family may have a genetic predisposition to a somewhat rare condition that compromises your ability to absorb magnesium normally.

Again, welcome aboard, and please feel free to ask anything.

Tex
:cowboy:

It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
cantankerous sparrow
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Post by cantankerous sparrow »

Thanks, Tex. I'm looking forward to learning from this group!
Marcia K
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Post by Marcia K »

Welcome, Brooke! You have found the best group around to help you achieve remission. Read the forums, Tex's book in the upper right hand corner was a big help to me and ask questions. You have already ordered the EnteroLab test, which is a good move on your part. I credit my remission to my internet family here.
Marcia
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My mission in life is not merely to survive, but to thrive and to do so with some passion, some compassion, some humor and some style. - M. Angelou
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carolm
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Post by carolm »

Hi Brooke-
Wow your GI doc missed the mark all the way around, other than his suggestion of Budesonide. I am in remission thanks to the advice of Tex and our family here, so as Marcia said you are in the right place. My family medical history also reads like ‘autoimmune central’. The Enterolab tests were like the fast track for me to get my diet in order and with persistence and consistency I reached remission in about 2 1/2 years.

So, you’ll find lots of help and support here. Welcome to our internet family and free to ask anything.

Carol
“.... people will forget what you said, people will forget what you did, but people will never forget how you made them feel.” Maya Angelou
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jessica329
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Post by jessica329 »

One and done.....yeah right! This crappy disease (lol) has plagued me since Aug 2012. My colonoscopy in Nov. 2018 showed remission, but that didn't last long.
Jessica
Lymphocytic colitis August 2012
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