No NORMAN yet

humbird753 · Post by **humbird753** » Fri Mar 02, 2012 12:01 pm

Hi everyone,

Just wanted anyone's opinion -

I have been GF/DF/SF for almost 3 months now. 10 days after I started GF diet I noticed change in that I could actually go shopping or some place in public without having to "RUSH" to the bathroom right away. I still have not seen "norman." I still go 5 to 7 times a day (very watery). I am wondering if the healing comes in stages and that it will just take more time???

Any opinions are appreciated.

Paula

Post by **tex** » Fri Mar 02, 2012 1:00 pm

Well, you may just need more time. Most people who don't take any medication to help suppress the inflammation, require more time for the inflammation to subside. If you don't see some more improvement after a few more weeks, you may need to consider the possibility of additional food sensitivities.

Tex

brandy · Post by **brandy** » Fri Mar 02, 2012 1:26 pm

Hi Paula,

I meant to comment on your previous post when you mentioned you were taking the Ultraflamx. Again...I'm no expert basically I caved to pressure from my employer/friends to get on Entocourt. I did have a couple of thoughts. I googled the ingredients and I think you mentioned thinking of stopping taking it. I know it is marketed for Crohns and UC but it has a lot of ingredients in it. You might consider not taking it for 2-3 weeks and see how you do. For me the ingredients that stood out that would be problematic for me were soybean oil, fructose, tumeric and rice bran and rice solids. Most people on this site can tolerate rice but it is problematic for me. I'm ok with sprinkling tumeric as a spice on food but when I took tumeric as a supplement i had massive gurgling. So just a thought as the Ultraflamx has a lot of ingredients consider stopping for several weeks to see if that helps.

Brandy

brandy · Post by **brandy** » Fri Mar 02, 2012 1:39 pm

Hi Paula,

I also agree with Tex that it might be a time thing. Since I've been a lurker from back in August there has been at least 3 people that went GF that kind of healed in like 4-6 weeks which compared to me was amazingly fast. For me healing has taken a long time but just in the last 4 weeks I've started feeling like my old self. Brandy

Sharaine · Post by **Sharaine** » Fri Mar 02, 2012 4:55 pm

Hi Paula,

It takes a long time to get to Normans. Being on Entocort last year did help me get to them occasionally after about 2 months. I agree with Tex; you may have other food sensitivities.

Have a good weekend.

Sharaine

Stanz · Post by **Stanz** » Sat Mar 03, 2012 1:43 am

Don't give up yet, Paula, it can take a long time before your intestines clear out the toxins from gluten, I was almost 4 months GF and still having nonstop D when I had my colonoscopy that dx MC, it took me a solid 5+ months before the D stopped after being GF and I'm still learning and I still have times where I have D in relation to foods I eat, but I did this w/o steroids and I still think we can do this w/o drugs.

Polly · Post by **Polly** » Sat Mar 03, 2012 5:51 am

Hi Paula,

It took me almost 9 mos. to see Norman after changing my diet. Hang in there!

Hugs,

Polly

humbird753 · Post by **humbird753** » Sat Mar 03, 2012 12:21 pm

Thank you all for your comments. I was wondering if it was unusual to not see norman yet. I will be patient. I also agree that if I don't improve over time, I will assume there are other food intolerances.

Paula

Leah · Post by **Leah** » Sat Mar 03, 2012 3:43 pm

Hi Paula. I'm just a "newbie" and I know many can get there with no Entocort, but I just started taking it and it worked almost immediately. Everything is calming down and I went from going 5-6 times down to 1-2 times in less than a week. My thought is that I will slowly cut down the dose while I am eating GF/DF and see if I get a flair or not. I am waiting for my Enterolab kit and will know a lot more in about a month as to what I can and can not eat. In the mean time, I have my life back. Don't get me wrong, going the natural way is understandable, but I just wanted to let you know that there are options.
Keep us posted
Leah

DebE13 · Post by **DebE13** » Sun Mar 04, 2012 6:32 am

)Paula- I'm still waiting for Norman too, although he shows up every once in a while so that gives me more hope. I've been GF & DF for about 3 months and SF & egg free for about 2 months. It seems much longer than that but I did not see the immediate improvements that some people have had. I assume that it because I've been on a 5 year battle and basically untreated for so long. It's hard being patient & I'd prefer immediate gratification.

I started entocort in February even though I don't want to be on any meds because the D became so horrible after I finally got off prednisone. I started on 9 mg on Feb 6th and am supposed to be taking that dose through the end of the week. I may be foolish but I have decreased the amount to 3 mg and have 2-4 trips to the bathroom each day ranging from D to occasional normans. Maybe I should be following my GI's direction but it seems they get a break from me if I'm told to keep at the same dose for a longer period of time. I'm sure there's medical data that supports their timeframe but I'd rather take less meds and my bathroom status is acceptable. Right now I'm watching which foods seem to cause the D and it's not be really obvious, but I'm working at it.

Don't feel bad if you have to take meds along with the diet modification. It's not the most desirable route but the road to recovery seems to be a long one. Just knowing that I may not have to do meds forever (as I have been told by those more educated than me

) gives me hope and satisfaction.

Too bad winter seems to just starting and spring is around the corner. Took me a half an hour to shovel into the driveway last week after the plow came through and filled the driveway. Not sure where you're located in WI so maybe I shouldn't complain- those up north got way more than we did. I would imagine we'd have snow shoe to get up to our cabin. Hopefully the warmer weather predicted for this week will melt some of it off.

humbird753 · Post by **humbird753** » Sun Mar 04, 2012 11:00 am

Deb, thank you for your information on Entocort. It was recommended to me when I was first diagnosed with LC (and after the pepto-tab regimen), but when the GI listed off all the possible side effects, I decided to go without it. I will never say "never," but at this point in time I am so used to going to the bathroom often each day that it has become normal for me. My feeling about Entocort is that it helps while on it, but masks the underlying problem that needs to be addressed. I am having a hard time figuring out what my intolerances are, but from what I've read I doubt I will truly know without testing or once the flaring is over with it will become more apparent when I do eat something that I am sensitive to. At one point in time with my prescription insurance I could have gotten a 3-month supply of Entocort for about $82. There has been a change in my insurance effective January 1, 2012, so I know it would be much more now (but not sure how much more). If I were ever to change my mind about Entocort I think it would be so I could put on a few pounds as I read some place that it will help with that.

As far as our Wisconsin winter has been - it's great! Sounds like you're south of where the snow has hit the hardest just like I am. I live not far from La Crosse.

I am glad to hear you are doing well with "normans" coming. I anticipate the day I can get on here and brag about it myself.

I hope you're having a good day.

Paula

DebE13 · Post by **DebE13** » Sun Mar 04, 2012 11:28 am

The side effects scare me too but my 6 month (short term use as said by my docs, haha) course of prednisone was far worse than the entocort and I'm having very simiar results. I've noticed increased dizziness but it's more annoying than anything. I became very used to the 6-8x a day of D and earlier this past summer I couldn't remember what norman felt like. I have more D & loose bms than normans but I'm working at it. Insurance coverage is a big factor- I'm fortunate to have an excellent RX policy but the price still frustrates me, it's just not right. I agree, the entorcort does mask problems. I'm struggling, like you, to figure them out. Although, I had a spoonful of Nutella this mornning and I believe the soy that I did't realize was in it caused a severe stomach ache. I recognize this feeling and can relate it back to when I drank large quatities of soy milk before I gave it up. It is nice to be able to start making the connections, but it's a slow trial and error. So far, I can only identify my body's reaction when I eat soy and dairy products but it's a start. It's hard to eat something that's questionable and wonder if it's worth ruining an entire day or two because of it.

I'm in the Wausau area so we're not too far apart. Do you have a good GI? I'm feeling compelled to find a different one but it's easier to think about it than actually do it. My son's pediatric GI and my own are in the same practice along with my second GI who dropped me after I got a second opinion. A receptive and more open minded GI might be worth the drive if my health insurance would cover it.

With or without the entocort, I wish you the best of luck.

humbird753 · Post by **humbird753** » Sat Mar 10, 2012 8:36 am

Just a little update....

There is a lot to remember to do here (i.e., diet, vites, get plenty of rest, etc.), and I realized earlier this week that I had not been taking my probiotics. All seems to be settling down again since starting back with the probiotics.

NOW... still patiently waiting for norman to visit.

Paula

Dee · Post by **Dee** » Sat Mar 10, 2012 2:05 pm

I must be the odd ball here because Entocort has never masked my food intolerances...
I definitely know it if I have ingested dairy & soy. I'm very diligent about gluten, meaning that it is a rarity for me to eat out.
On another note, I have always been fortunate because I never had any abdominal pain, cramping, lightheadeness, etc., just the screamin D...
I agree with the others stating that it can take time to heal , and I know how anxious one gets waiting for Norman to show up.
Dee~~~