A Speculative Question

wmonique2 · Post by **wmonique2** » Tue Apr 08, 2014 7:35 pm

Hello Friends,

Does anyone know what percentage of us actually achieve REMISSION following DIET ONLY?

And of those who did, how many of us had a relapse notwithstanding all of our efforts? (In other words, how many had the condition come back in full force).

I know it is a big question but I am curious as to what kind of responses I'll get.

Monique

Gabes-Apg · Post by **Gabes-Apg** » Tue Apr 08, 2014 7:48 pm

Monique
what is your definition of Remission?

No MC nor Histamine/Mast Cell symptoms ?
or
GI says that your MC is in remission, but you continue to have inflammation health issues linked to the digestion?
or
next to no symptoms, maybe the occasional flare (2 -3 days max) by change of season or emotional trigger?

Add in: or if you think you had medication induced MC, when you stop the medication and the MC stops?

wmonique2 · Post by **wmonique2** » Tue Apr 08, 2014 8:03 pm

Hi Gabes,

My definition of remission is a sense of wellness, no sickness, no meds and just diet alone. Also, in my case, I'd like to hear from my GI in my next colonoscopy that I have no evidence of lymphocytes in my colon.

Monique

Gabes-Apg · Post by **Gabes-Apg** » Tue Apr 08, 2014 9:13 pm

Yes
I did achieve MC Remission with Diet - (with assistance via acupuncture and supplements)

(took small amount of questran lite and imodium for 2-3mths when first Dx'd)
NB: I didnt do entoralab testing, I identified my major triggers via elimination diet.

It was after MC remission that the additional health issues became quite active that affect my current wellness.

Post by **tex** » Tue Apr 08, 2014 9:51 pm

Monique,

You're asking the wrong group. Other than a very few original members who hang around to offer support, and who are joined by a few other more recent members from time to time, who have also chosen to stick around to offer support, most of the members here are either very new, or in various stages of recovery. Remember that recovery usually takes a year or more.

The group to ask would be all those who have stuck around here long enough to learn the essentials, and then moved on (IOW, stopped posting). Also, only a minority of members who join, ever write a single post. And many lurk, but never join. But I can tell you from emails that I have received, that many of them have managed to get their life back by utilizing what they learned here, even though they never posted.

Most members who are able to see that they are on the right track for recovery, typically stop posting, and move on. Of course, that also applies to those who are either unable to work out a diet that brings remission, or they are unwilling to make all of the changes necessary to achieve remission. Consequently, there is no way to get an accurate assessment, because very few members stick around after they figure out how to get their life back. They're anxious to get on with their lives. Therefore, taking a vote among currently posting members at any given time will always result in a false low success rate (IMO). Or am I looking at this wrong?

Tex

Don Allison · Post by **Don Allison** » Wed Apr 09, 2014 7:16 am

Tex

I think your response was very good. Sad as it possibly is some of could benefit
From some that have gone because it may help to feel we are on the correct path. When
Some feel that they do have it all under control we may not hear from them as to their
Feelings and that they gained from sharing. Did they think it was a waste of their time
Or whatever?
I am new and do not think I am have any words of wisdom. I do however feel
Better getting to read what others share because it is a somewhat sick feeling being
Alone in you boat and there is a leak but you just do not know how to stop it!

Post by **tex** » Wed Apr 09, 2014 9:10 am

Don wrote:it is a somewhat sick feeling being Alone in you boat and there is a leak but you just do not know how to stop it!

Don, thanks for sharing your thoughts. That's exactly how I felt when my GI doc told me that there was nothing he could do for me. He failed to take biopsies during the colonoscopy, so he claimed that there was nothing wrong with me, even though I was as sick as a dog. It's the loneliest and most hopeless that I've ever felt. Eventually finding a solution was almost like having a death sentence rescinded. That's one of the reasons why I stick around here, because no one should have to feel that way.

Tex

Polly · Post by **Polly** » Wed Apr 09, 2014 10:09 am

Hi Monique,

I don't mean to rain on your parade, but I know from experience that having a normal biopsy the next time will not guarantee the flares will stop. My biopsy after 5 years still had lymphocytes, while the one at 10 years was completely clear. Immediately after the last colonoscopy I had a wicked flare - I think due to the corrosive clean-out procedure (Miralax). I also had another wicked one during the time I was taking care of my brother who died from cancer. It appears even though the lymphocytes can be banished, those mast cells can still wreak their havoc. I guess this helps support the idea that mast cells may be the primary issue we are dealing with, with the lymphocytes showing up to help clean up their damage.

Love,

Polly

Fiona · Post by **Fiona** » Wed Apr 09, 2014 3:53 pm

Monique, I'm in remission from diet alone. I did endure six weeks of the Pepto protocol before developing a raging, but temporary, case of tinnitus and swearing it off for life, but no Entocort or any other prescription drugs. I still sign in to read stuff on the forum because I've become a bit of a health fanatic ever since developing MC, and I continue to learn things here about many aspects of health from folks who are dealing with additional conditions as well (such as Costochondritis, as you may recall!). The Pepto did halt the WD, and I've been D-free ever since, aside from a four-day flare that was ignited by an accidental but major gluten ingestion, meaning I thought I was eating the GF version of something that was coated in regular breading. Not my finest hour!

Fiona

Deb · Post by **Deb** » Wed Apr 09, 2014 6:09 pm

Monique, I have obtained remission from diet alone. I still have episodes (probably IgE) at restaurants but for the most part am okay. I did end up treating my hypothyroidism. I am, however, looking at LDN to take me to another level. I've had some episodes of what I believe are asthma (I had asthmatic bronchitis as a child and continue to have exercise asthma). I also periodically have some swallowing issues which I think are related to GERD. I obtained remission after about two months in 2010 after quitting gluten. I then had another flare of about six months which I think was stress related. All in all, I'm doing well. Deb

wmonique2 · Post by **wmonique2** » Fri Apr 11, 2014 5:57 pm

Thanks, Polly --- it looks like stress can send us over the edge each time.

The reason I asked the question was because I had this long discussion with my GI doc this last week. He knows everything about my diet, meds etc and I mentioned that I am determined to go into remission. So, I asked him how many people go into remission (he originally put me on the elimination diet so he is one of those enlightened ones) and he said that many do after 3-4 years but then he said the condition comes back.

And based on your response, it seems like we should do everything to reduce stress. I know that stress was what brought on my LC.

Thanks all for responding.

Monique

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