Two steps forward two steps back?

tnelson · Post by **tnelson** » Mon Feb 20, 2012 2:50 pm

I wonder if others have this same experience: I gave up gluten 3 weeks ago and nothing changed. I gave up milk and soy and egg and things seemed to get better. I gave up rice and corn and all the rest of what Enterolab identified, and I saw a LOT of improvement. I was really excited and thinking I was on the road to fine and had found the key. Then whammy, I have D again. It's so depressing.

Just wondering if this back and forth, with no apparent cause in the foods that I am eating, has happened for others?

Thanks for your help!
--T

Post by **tex** » Mon Feb 20, 2012 4:38 pm

Yes, that's typical of the journey to recovery. Many of us view that phenomenon more optimistically, though - we refer to it as two steps forward and one step back.

If nothing else, MC teaches us patience and perseverance.

Tex

tnelson · Post by **tnelson** » Mon Feb 20, 2012 8:39 pm

That's really helpful to know. It's encouraging to think that if I stick with this new way of eating, I should eventually see improvement. I assume it's completely individual as to how long it takes to recover after getting rid of trigger foods? . . . and of course, I'm still trying to identify triggers. Thanks Tex. By the way, my brother lives in Plano, TX. (Not sure if that's your town.) We've been there several times. It's a very nice community.

--T

Post by **tex** » Mon Feb 20, 2012 9:16 pm

Yes, we all seem to recover at our own rate. Some people get better gradually, while some of us tend to stay sick for what seems like forever, and then suddenly reach remission virtually overnight.

I live a couple of hundred miles south of Plano. Plano is one of those test cities where Subway is offering gluten-free sandwiches, I believe, (FWIW).

Tex

coryhub · Post by **coryhub** » Thu Feb 23, 2012 2:51 pm

tnelson,
You're experience is very typical but you will soon find yourself stringing more good days together and having less 'D' days. I have such long periods of good days now that sometimes I start to think I've got this thing kicked, and then whammy!....I'm reminded this is an incurable disease and I'd better live in the good days and wipe my butt through the bad ones.

tnelson · Post by **tnelson** » Fri Feb 24, 2012 2:59 pm

Thanks for the supportive words, Coryhub. I really hope that I can start to string together better days. So far, it's been the opposite. We had guests and although I didn't think I ate any of my intolerant foods, I've had non-stop D. I will just have to be patient and hope for some settling. A few other posts seem to suggest that things can sometimes get a little *worse* after stopping gluten, to which I'm very intolerant.

Thanks again!
--T

DebE13 · Post by **DebE13** » Fri Feb 24, 2012 6:49 pm

I've had almost five years of bad days except when taking prednisone. I've tried too-many-to-name diet plans with no success. However, looking back, those diets helped me to prepare for the extreme limitation I have now. I've had a couple of days of 2 normans in the AM and I am thrilled. I was taking 9mg entorcort with 3-4 loose BMs a day but I reduced the dose to 6 mg and have added Histame with each meal and NasalCorm once or twice a day for the past week and I'm happy with the progress. I do have that worry in the back of my mind that I'm going to slip back into bad D but I'm enjoying it at the moment.

Post by **tex** » Fri Feb 24, 2012 6:57 pm

DebE,

It sounds as though you're on the right track. Hopefully, that trend will continue.

Tex

tnelson · Post by **tnelson** » Fri Feb 24, 2012 7:52 pm

I, also, wish you the best of luck. Five years is a long time, and it sounds like things are finally turning around. You must be thrilled.

Since you mention Histame, I'll ask a question that I've wondered about: Is histamine at the root of microscopic colitis? Or is it only involved in the mast cell version (Mastocytic Enterocolitis). Sorry, I don't have all this straight yet. My problem was diagnosed one year ago as straight up lymphocytic colitis. The intolerances are definitely immune-mediated, since Enterolab discovered IgA reactions, and the Histame website says it doesn't work against immune problems. I'm trying to sort all this out.

Thanks for any assistance!
--T

tnelson · Post by **tnelson** » Fri Feb 24, 2012 8:14 pm

Wait, I see that there is a whole thread on histamine. I'll read that first, as my question might be answered there.

Gabes-Apg · Post by **Gabes-Apg** » Fri Feb 24, 2012 8:22 pm

hi there
i was doing the MC two step (or was it more like the time warp from rocky horro??) for about 9 months. various things can cause setbacks and issues.
in the first days post Dx my motto was some days are diamonds, and some days are stone, as time passes and you figure out what works for you, as Cory said you will have more good days than bad ones

as for hiccups along the way, be careful of ingredient changes, products can change their ingredients without you realising..
and i am one of the ones that histamines have caused considerable issues and once brought under control, things have improved greatly so i highly recommend researching that and trying some of the H1 and H2 meds. Gloria has had good results with benedryl, it didnt work so well for me so i am using loratatine and Rantidine

hang in there, it does get better

take care

Post by **tex** » Fri Feb 24, 2012 9:12 pm

T,

According to research, about 70% of us would qualify for a diagnosis of mastocytic enterocolitis, but pathologists rarely look for it when analyzing biopsy samples, so as a result, it is rarely diagnosed.

Tex

tnelson · Post by **tnelson** » Fri Feb 24, 2012 9:47 pm

The symptoms of mastocytic enterocolitis seem to closely parallel the symptoms of lymphocytic colitis, so it's impossible for me to tell what's what. Would I need to have another colonoscopy to diagnose this, or could they re-stain my previous biopsy, which is about a year old?

I gather that one can have mastocytic enterocolitis AND lymphocytic colitis at the same time?

I don't notice any particular histamine-like symptoms (like itchy eyes), but I do have a chronic runny nose, which is particularly bad after I eat a meal or if I get cold. My father and brother have hay fever, which is a histamine reaction, I believe.

I gather from the histamine thread that the key is to avoid aged and dried foods, like nuts and dried fruit. I'll get my MRT results next week (sent in the blood yesterday). Will the MRT test also show mast cell/histamine reactions to foods? I think maybe not, since I doubt that the foods they test have molds. It would be really good to know whether I should also be concerned about the histamine-type foods, like peanuts.

I also see that there are medications, but I would have to visit a gastroenterologist for that and that is not an appealing thought after my last experience.

I would very much like to do this without more medications, but I have so many intolerances that I'm worried I'll run out of food to eat! Even much of the paleo diet is out for me because of intolerances like eggs, some meats, some fish, etc. I love whole food eating and have no problem with diet modification, but I unfortunately do have to eat something.

Thanks as always for the wonderful advice. I can't believe I wandered in the desert without this information for so long!

--T

Gloria · Post by **Gloria** » Fri Feb 24, 2012 10:10 pm

T,
It sounds like you've read Tex's theory about what/why foods cause mast cell issues. You might also find it helpful to look at this thread for more specific lists of foods to avoid:

http://www.perskyfarms.com/phpBB2/viewtopic.php?t=14416

Gloria

tnelson · Post by **tnelson** » Fri Feb 24, 2012 10:28 pm

Thanks Gloria. I printed the list. It was also useful to see the list of symptoms.

I am hopeful that the MRT test will help sort out this issue??

--T