Longing for Norman

Post by **tex** » Sat Oct 02, 2010 8:47 am

Gloria,

Thanks for starting my day with a smile. The same thought crossed my mind, when I originally read the subject line of this thread.

It's interesting how we've sort of developed our own unique dialect, even though we're scattered all around the planet.

Tex

Linda in BC · Post by **Linda in BC** » Fri Oct 08, 2010 12:09 am

Hi Zizzle and Kari:

I am in very similar situation to both of you in my journey to healing, maybe a little further along the road but the scenery looks the same! And Norman is as elusive in my world as yours.

I have been DF for 7 years, and went GF, corn free, and soy free in June this year (4 months now.) I have seen Norman only twice in all that time.

I chose to try a drug called Low dose Naltrexone (LDN) which works on seratonin levels and has helped others with autoimmune disorders, and I started taking it in July. I did have a lot of improvement for the first few weeks, down from 8-12 BM's (D) per day to about 2 or 3 only in the morning ( and one norman) , which was all quite promising. But slowly over time that has crept up to where I could have D anytime day or night, but irregularly.. some days would be good then the next day I would be reacting all day. I, too, suspected there are other things in my diet that surfaced after the gluten was removed, but I just can't seem to figure out what it/they could be. I have cut out all kinds of other things...all nuts, almond milk, my vitamins, especially magnesium and calcium, different flours like potato, buckwheat, garfava, sorghum, teff, tapioca; all veggies except well cooked carrots and green beans, chicken, fruits ( except bananas) and recently I cut out eggs and quinoa, too, all with little improvement. Each of these things I cut out has been mentioned on here at some point as causing someone problems( except the quinoa) , so you might check them out for yourselves. I am now beginning to think I am reacting to rice, which, along with meat and chicken has been my mainstay. Of all these additional things I cut out, the two I know for sure I am intolerant of are buckwheat and tapioca, and the quinoa (flakes cooked like porridge) has given me really bad pains twice now immediately after eating it.

I have finally decided to go on entocort and while waiting for it to arrive in the mail, I stopped taking the Low Dose Naltrexone about 3 weeks ago, figuring it didn't seem to be helping much. Not such a good idea as I got even worse so have been back on the the LDN about a week now , and things have improved a bit. The entocort arrived today and I am so hoping it will bring me the kind of improvement it has for others.

Best of luck in finding out your other intolerances.

Linda
.

ant · Post by **ant** » Fri Oct 08, 2010 6:46 am

Dear Linda

"Green beans" - given multiple intolerances would not these legumes be suspect?

Just a thought..... best, ant

Kari · Post by **Kari** » Fri Oct 08, 2010 8:05 am

Hi Linda,

Thanks for your detailed post - as much as I feel very bad for you in your struggle, it helps to know others go through similar "pain". I truly hope the Entocort medication will work for you - will look forward to your "progress reports". At some point I may have to try it as well.

Today is actually a kind of turning point for me, as I'm starting a "Winning the Poo Diary" (very cute Gabes:)) where I will record every single thing I put in my mouth. I'm planning to wait until I get the Enterolab results (should be within the next couple of days) before starting new modifications, as I'm doing reasonably well right now. This morning I woke up with a stomach ache and had watery D. Can't imagine why:(, but I'm starting to suspect the rice products I use (Pamela's, Udi's Bread, etc.). I have a feeling that at some point I have to try the elimination diet, but it seems so very "punishing". I admire those people here who have done it.

The hardest part for me at this juncture seems to be psychological. I get extremely dark moods (feeling hopeless) when I have inexplicable flares. I remind myself of the steady progress I'm making, and that so many others here are going through similar "pains", but I can't seem to grab ahold of myself, and spend a day or two in a very dark place. I'm generally a pretty upbeat, positive, energetic person, so this seems to be a strange side effect of MC??? I wonder if others experience this as well?

Ant - every time I reach for Pepto, I think of you:). I take them (2 or 3) when flaring, and they seem to help for a day or two. I wonder how often you take them? For me, I'm down to 4 to 5 times a month. I have actually thought of going back to accupuncture to supplement my diet efforts, as I had some success with it before.

Kari

Linda in BC · Post by **Linda in BC** » Fri Oct 08, 2010 11:39 am

Hi Ant:
thanks for the thought about the green beans but I am pretty sure they are ok for me as I have eaten them and had no reaction, prior to one of my "normans". Must be well cooked --almost mush, or the "french cut" canned ones. Not great but better than no vegggies at all except carrots.
Linda

ant · Post by **ant** » Fri Oct 08, 2010 12:18 pm

Dear Kari,

Co-incidence you mentioned Pepto. I had my first D for three and a half weeks this morning.

so took a couple of Pepto Bismol this morning. No need to go to the loo again today, so hope it was a one off..... will be studying the pan tomorrow....

A few months back when flaring I would take 6-9 PB a day for two or three days before the flare settled down (of course then with the help of Diet and Entocort). Now I hope it will settle only with Diet and a day or less of PB.

Best, Ant

Ginny · Post by **Ginny** » Fri Oct 08, 2010 12:51 pm

Kari, you could be reacting to the Tapioca flour in those products and not the rice. There are a few of us with this problem and probably from Mast cell issues. I have eliminated all grains but rice. I found that Tapioca flour and potato starch was bothering me, but it takes constant trial and error to know for sure.

LInda, as much as none of us want to go on a steroid, sometimes it's the only way to give your body a jump start. I've also had to minimize my fiber intake and have tried to rotate what little food I can eat (that's hard).

It just takes a lot of patience and time. Kari, I think acupuncture would be good. I have used it and it helped immensely in my strength and peace of mind. The "dark place" I have experienced so I know exactly how you feel.

Wishing all of us the best of health! Ginny

Gloria · Post by **Gloria** » Fri Oct 08, 2010 10:08 pm

Ginny,

I agree that tapioca could be the culprit. I have eliminated all tapioca from my diet, including the tapioca in Ener-G egg replacer. I'm making muffins just fine without the egg replacer. If I need a binder, I'll use arrowroot mixed with pretty warm water, but I don't usually need it for the muffins. Arrowroot sets up the same as the egg replacer, if I get the water temperature right.

I don't know for sure if it was tapioca or rice that caused my head sores, but I was eating both of them at the time I got them. I have been testing rice for the past week and I'm not having any reaction at all. So it may be that tapioca was the problem all along.

Determining all of one's intolerances can take a lot of time, guesswork and sacrifice. I've given up many foods in my quest. Sometimes I've been right, sometimes I have to start over. It can be discouraging - I've had the dark times also, but when you begin to improve, it's a terrific feeling, and life seems great again.

Gloria

Kari · Post by **Kari** » Sat Oct 09, 2010 3:23 am

Ant - I think that's syncronicity at work across the seas :) - hope you're back on track today - 3.5 weeks sounds wonderful - how encouraging !!! Thanks for your quick response on the PB's .....

Ginny and Gloria - thanks for your encouraging words and the tapioca red flag - I sure have a lot to learn, and realize that patience is an essential ingredient .....

I know it has been said that MC is a lonely disease, and it sure feels like that at times, but it is a lot less lonely with the support of the PP family :)

Warm regards,
Kari

ant · Post by **ant** » Sat Oct 09, 2010 4:35 am

Dear Kari

You are so right!! MC was designed by Satan to make us "lonely", BUT the PP 'cocks a snook'

at Lucifer every time we post on this board.

I did not take PB today's. BM was not loose, nor firm.....nor "urgent".... so all-in-all, Ok today. Let's see what tomorrow brings.

Hope things are OK with you.

Best, Ant

Gloria · Post by **Gloria** » Sun Oct 10, 2010 7:54 am

Whew, Ant! I hope you can continue to overcome the little setbacks.

Gloria

ant · Post by **ant** » Sun Oct 10, 2010 11:54 am

Dear Gloria,

Ok today and no need for PB. Sorry to here you just had a setback after a meal out. Hope it settles.

Best, Ant

hoosier1 · Post by **hoosier1** » Sun Oct 10, 2010 12:12 pm

Ant and Gloria,

During a minor episode, I am curious as to why you don't consider using Lomotil or Imodium?

I started taking the 8 pills/day pepto yesterday (still on Entocort0. Gonna give it a try. So far, I haven't noticed any improvement whatsoever. I would think after a full day of the stuff, I would get some "binding" action but not yet it seems.

Rich

ant · Post by **ant** » Mon Oct 11, 2010 7:35 am

Dear Rich

Good question. I have been told that PB has a slight antiseptic property and Lomotil or Imodium is just a functional treatment. So, in my mind, I think the PB might be doing more good (as long as not taken long term).

Best, ant

Gloria · Post by **Gloria** » Tue Oct 12, 2010 10:55 pm

Hi Rich,

Rich wrote:During a minor episode, I am curious as to why you don't consider using Lomotil or Imodium?

That's a pretty good question, especially since my DD with IBS and DH both don't understand why I don't just take Imodium, too.

I react pretty badly to Pepto Bismol, so I never take it.

I don't see much point in taking Imodium because it just suppresses the symptoms and makes me think that I'm getting better when I'm really not. I'll take it if I'm going to be away from a bathroom for a while, but otherwise, I try to figure out what's causing the reaction instead. That reasoning might seem odd since I'm taking Entocort, which also suppresses the symptoms, but it does so in a different manner, as you probably know. Imodium slows the movement of waste through the gut, but Entocort suppresses the immune system. I will react to intolerances while I'm on Entocort, but I don't have that kind of feedback on Imodium.

I guess the short answer is that I'd rather put up with the D temporarily while I try to figure out what's bothering me. I should mention that I'm retired and can stay home when I'm reacting. If I were working, I might have a different answer, though I did work for the first year and a half that I had MC. I only took it one week during that time, and that was when I took a trip for spring break. I didn't like how it made me feel "bound up" and have avoided using it since then.

Gloria