Another newbie

G'ma Mary · Post by **G'ma Mary** » Wed Jan 07, 2009 8:42 pm

Leslie;

Welcome to our on-line family!!! While I can't comment on the bison burger, I certainly can comment on this site as well as the GF diet!!

For some strange reason, I told my GI 3 times about the GF diet and how it is helping others. The first 2 times he responded mostly as yours did. What I still don't understand is why I felt the need for his "approval" to try it. BUT, after my third comment to him, he rolled his eyes and "promised" me it would not help me, but also would not hurt me. So, I was told if it would make me feel better, try it. Well, when I went back to see him several months later and reported I was GF AND symptom free, he actually told me he was pleased for me and that he would suggest it to other MC patients he has since it is helping me. Years later, I discovered that I am the only pt of his with relief from diet, but he suggested others try it for "a week or two" to see if they have relief. Well, today he does the most extensive allergy testing I've seen outside of EnteroLabs, and he promotes omiting lots of types of food and food products based on his testing. He is so proud of my success that he even told me there is no need for me to be tested by him since I have no symptoms any more. He has been slow to come around, but I have to say I am proud of him for finally accepting that foods can control our symptoms.

You are on the right track, and I am very proud of you for what you have done so far! You will be successful and will find yourself living a "normal" life once again before you know it. Of course, my "normal" today is different than what it was, but with the help of great recipes as well as wonderful mixes and prepared products, I don't feel like I am missing out on anything any longer.

Once again, welcome, and I look forward to getting to know you better!

G'ma Mary

Littlekicker · Post by **Littlekicker** » Wed Jan 07, 2009 10:27 pm

Thanks, Tex, for the very informative info on the breakdown of the bison meat; I did have to read it a few times!! I will certainly try the elimination deal w/ this as I love to eat meat.
I have some understanding of all of this as my Father was a very informed individual as far as all of this goes although he passed away when I was only 25 years old (back in the mid 70's he was spending upwards of $300.00 per trip to the health food store; my Mother was never happy w/ this ;-)) he was an avide Adelle Davis fan among others. I took handfuls of vitamins every day as an athlete growing up (gymnatics my whole life (mainly because my Father was a gymnast; can you say University of Texas?) and running track) upwards of 20+ individual vitamins a day including vitamin D, E, C, B complex, folic acid, etc, even going so far as drinking acodolphis culture (yuk) and others I'm sure I can't remember....
I am so excited about actually conversing w/ you & the others. With all of this preventative "medicine" at such a young age shouldn't I be the healthiest girl in the world?
THANKS!!

Post by **tex** » Thu Jan 08, 2009 2:00 am

Leslie,

Hey, UT is my old alma mater, also. How about that?

The sad truth is, you might very well be the healthiest girl in the world, but that wouldn't necessarily prevent you from acquiring MC. If you have the right genes, and you're unlucky enough to experience a triggering event, at an "opportune" moment in your life, then you will develop MC. Quite a few of our members are athletes - bodybuilders, runners, etc. Most of them had to slow down a bit, until they got their symptoms under control, but after they were in remission, they went back to whatever they were doing, previously. One of our members even ran a half-marathon during the fall, even though she was not yet in remission. (She got a script for Entocort from her PCP, so that she could finish her conditioning, and run the race).

As as matter of fact, I stopped eating beef during my recovery, because even though it wouldn't cause D, it caused many of the other symptoms, beginning with bloating, a few hours after eating it, and ending up with a headache, and a stiff neck, and pain between my shoulders, the following day. In fact, I rarely eat beef any more these days, because it still causes very minor symptoms, so I just never got back into the habit of eating it. I can recall only one other member of the board, who ever mentioned being affected by beef, though I might possibly be forgetting about someone. It's certainly not a common allergy, or intolerance, at any rate.

It's a pleasure chatting with you, too. I'll bet you'll be able to handle bison meat just fine, because it's a true paleo food item, and it's extremely rare for someone to develop an intolerance to a paleo food, (since our digestive symptoms evolved on paleo foods). If you are truly allergic to it, though, (IOW, if you develop histamine-based symptoms, or even anaphylaxis, after exposure to it), that's an entirely different matter.

You're most welcome,
Tex

angy · Post by **angy** » Thu Jan 08, 2009 5:32 pm

welcome littlekicker!!

Sorry you had to find us...but now that you have... a wealth of knowledge and support is available to you from our members (special family) :fam29:

Everyone here are walking talking sufferers and tex

is an einstein on this subject...without tex and every 1 here iprobably would have went off my rocker cos no doc gave me any information or support...All he said was there is not much information about cc...duh!! what good was that to me..

I also have to say that tex,s comment to your post was spot on...i dont need to quote him srry...

Anyway i was ill for 8 months solid before i got a colonoscopy...(i was struck down one day with D (sept 2007) and ended off work for 6 wks. During the 6 wks i waited to be sent for a colonoscopy. The D continued until the nhs got their act together to give me this procedure..and it took them 8 months to get their act together. I was suffering the whole time....
During that time i intuitively knew that gluten was making me ill so i stopped eating gluten...I was convinced i was a celiac and i had the itchy skin when i ate gluten..
I tried to educate my gi doc about this and he said well we wont know until we do your colonoscopy...
Finally i got it done and he told me well....you dont have celiac...i was stunned considering the gluten was making me ill. He said you have a rare bowel disease and its called mc, and you have the cc version...I was stunned i never heard of it and i had researched every gut problem under the sun when i was ill off work...

I told him that i aint eating gluten again no matter what...cos i know its making me sick...he just looked at me and said well we could do new antibody tests in 6 months...

. He also said ...try to eat some gluten around your next antibody testing.. I said whats the point....your test is only created for a full blown celiac not for someone with gluten intolerance...!! I also said there probably wouldnt be so many people ill with celiac and mc, and other conditions if there had been a gluten test in the first place. They wouldnt have got so far as becoming celiac if there was...H just looked at me....

I dont think he likes it when i try to take control of my own health and not always take on board what he says...apart from the mesasaline meds.

I have never had bad D since i stopped eating gluten...and i am very strict with that...Also tex has mentioned in previous posts that gluten intolerance is one thing with food and diet and mc is another with food and diet...

I can eat some gf foods but they can have a reaction on my gut in relation to the cc..such as tomatoes raw vfruit and veg...chocolate..caffeine...others im still discovering

Sorry for being so winded

but i hope this helps...i could probably go on and on lol

Good luck with gf diet. There are loads of recipes in the diet info thread...

look forward to reading your posts....

Littlekicker · Post by **Littlekicker** » Thu Jan 08, 2009 5:56 pm

Thanks, Angy!!!
I do feel very lucky in that I was diagnosed so quickly and hope my gut recovery will be relatively quickly as well; I am an optimist my nature ;-)
I'm sorry it took you sooo long. I am going to keep my mouth shut as far as my GI is concerned-can't teach an old dog new tricks. I just hope he will keep prescribing the Entocort for as long as it is needed.
I try and eliminate new sources of gluten everyday and am aware there are sources I've not even considered yet...
Trial and error!!
Thanks for your support and concern!

drdeb · Post by **drdeb** » Thu Jan 08, 2009 6:01 pm

Hi Angy,
Newbie Deb really appreciated your post. And I do so agree. I was allergic to wheat as a child (got a rash), now have a diagnosis of MC w/out CC. Too bad I did not eat a lot of the things that make me sick prior to the test. LOL I think I would prefer to simply eat NG and realize that some day the medical profession will get it.
Deb

angy · Post by **angy** » Thu Jan 08, 2009 6:04 pm

you will definately get there drdeb..i did most of the food thing on my own without help from any medical professionals...hell he didnt even refer me to a dietician

I asked him for a prescription for gf food to which i would pay for cos i work and he said ask your gp about that...i was furious!!

i though you unsupportive s.o.b..

So now i just see him when i have to and i aint letting him walk over me cos i dont like him...exscuse my french but hes an asswipe as wayne pointed out in one of my other posts lol!!!

now thats a different issue altogether that post hehe!!

please look at the diet thread here dr deb ,,some of our members are great cooks...

good luck and eat everything you can lol!!!

drdeb · Post by **drdeb** » Thu Jan 08, 2009 6:29 pm

Hi Angy,
I am already doing so much better. I go for skin biopsies tomorrow morning. I affirm that they are related to this disease. Skin is already healing on the diet. The words to describe my PCP are MFB+. And actually I have decided to find another Kaiser facility and MD. The one I currently am at is a "fru fru" one-no high rise-part of a floor. It mainly does cosmetic things like micro abrasion and botox. Yes the current PCP is a "piece." If she gets a cell call again when I meet for the follow-up before I change facilities, I plan to report her.

angy · Post by **angy** » Thu Jan 08, 2009 6:43 pm

ye i would..thats rude to take a call when consulting with a patient...that annoys me too...

good luck with that...it .aint helpful when you get assigned someone who is a stuck up theoretical asswipe lol!!

drdeb · Post by **drdeb** » Thu Jan 08, 2009 8:15 pm

Amen sister
She will be toast after I get from her what I need.
A few things I like about Kaiser
1. I can change facilities and PCP
2. I can request tests and referrals
3. They have a lot of great health activities such as tai chi, meditation classes.
I will keep you posted,
Deb

angy · Post by **angy** » Fri Jan 09, 2009 1:28 pm

lol!! u go get her hehe!!