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Crohn's Disease
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Posted 3/20/2009 3:34 PM (GMT 0)
Hello,

I have had Crohns for the last 12 years.  I notice more and more lately the fatigue as well as "brain fog".  I have been reading this book called the Ultramind Solution and it talks about treating the entire body and watching nutrition etc.  One main thing is eliminating gluten but I am already on a limited diet and it seems like it might be too much.  Also taking many suppliments scares me.

Has anybody else read this book?  What are people's thoughts?

Thanks,

Ryan

Posted 3/20/2009 4:23 PM (GMT 0)

I cut out gluten about 5 months ago, and while I do think it has improved my guts, I don't think it's done a blessed thing for my "Swiss cheese brain".  In fact, between medication changes, dietary changes, and going on disability, my Crohn's more or less went into remission.  Which allowed my symptoms of Fibromyalgia to stand out more clearly.  People with true gluten intollerance may have improved mental clarity when they go off gluten, but I don't believe that is true for everyone who tries it.

As far as suppliments go, I always inform my doctors of every suppliment I take, and I stick to vitamins and probiotics.  I haven't done any herbal stuff.  Before I tried mixing herbal suppliments in with everything else I take, I'd want to educate myself on possible interactions.  And from multiple sources, not just one.  (I do this with prescription drugs, too.  The only difference is, I buy them all from the same pharmacy, so I use that as one level of my "screening process".  I no longer trust my multiple doctors to know what's best for me or which drugs might interact.  I wouldn't trust a book or naturopath, either.)

Posted 3/20/2009 4:42 PM (GMT 0)
This is great advice.  I do appreciate it.

Posted 3/20/2009 6:43 PM (GMT 0)
What was it we were talking about ?? Oh yes, brain fog..Ahhhhhh, hmmmm, what ? Oh yes I take Ginco Paloza for that, I think, I cant recall how to spell it though. I think it has helped me some but its hard to tell. I forget.
Posted 3/20/2009 6:48 PM (GMT 0)
Brain fog here too, I couldn't imagine how much worse it would be for me if I didnt' exercise regularly, that has made a difference but I'm still somewhat affected by brain fog...it's like I've pooped soooo much (too much) over the last 18 yrs of being sick that it's caused me some brain damage or something.

:)
Posted 3/20/2009 6:56 PM (GMT 0)

Ha.  That is a great post.  Pooping too much can definitely take its toll.

I am currently taking a Kung Fu class trying to be more active and all.  I am hoping that increasing my activity will help.

Posted 3/20/2009 11:26 PM (GMT 0)
I went gluten free, noticed a huge improvement in my energy after about a month, and then flared like mad and gave up the diet. As of January 1st, I started the gluten-free thing again, and while it is a ROYAL PAIN to deal with at times, it is sooo worth it for me. I agree with bek - I don't think everyone is going to notice a marked improvement by cutting out gluten. The good thing is, however, that it costs NOTHING to cut gluten out (ie no expensive med), and you see a difference at about the 20-45 day mark, so you don't have to be gluten free FOREVER and wondering if it's helping. If you're wanting to try, read up, give it a go, and you will either say "HOLY COW" after a month of being gluten free, or you'll say, "What was the point of THAT??" JMHO
Posted 3/21/2009 2:44 AM (GMT 0)
So you do not think the initial flare was due to the diet do you? I was looking in my grocery store today and couldn't even find any bread that was gluten free. It is frustrating.
Thanks for the post!
Posted 3/21/2009 2:53 AM (GMT 0)
Do you have access to a Costco leny? The one my sister goes to has gluten and wheat free breads (if it makes any difference, I'm in Canada).

:)
Posted 3/21/2009 3:00 AM (GMT 0)
I am the poster-child for the benefits of giving up gluten. I was terribly ill for two years, gave up gluten, and now am completely fine. as for bread, leny, the store brand are hardly worth eating. Bob's Red Mill makes mixes that are really good, or just eat corn tortillas and gluten free crackers. email me if you want more tips.
Posted 3/21/2009 3:01 AM (GMT 0)
one more thing, I am able to eat all the things I couldn't eat (salads, etc) since I gave up gluten, so i have a better diet than before. yp
Posted 3/21/2009 4:20 AM (GMT 0)

Thanks guys.  I do have a Costco near me so I will have to check that out. 

Yogaprof, that is great to hear.  Do you also find that you have more energy and feel better in general?  I try to remember what it was like to have energy.

Posted 3/21/2009 1:47 PM (GMT 0)

Brain fog is something they often talk about on celiac and gluten intolerance boards.

I feel great. it's crazy! I do yoga every day, work two jobs, take care of a house, and am almost 50. I was so ill, had two surgeries in '06, did all the meds, all the tests, and was barely functioning. 3 weeks after going gluten free I woke up and here I am.
my costco doesn't have any gluten free products. you need to go to stores that have a pretty good health food section and talk to someone. the bread is either in sealed packages on the shelf with other GF stuff, and it is awful, or it is frozen, and it is ok. or try the bob's mix. it can be done with a mixer and is great. I make half a pkg every week and it makes one loaf. but you would be surprised how easy it is to just not eat bread. the first weeks are hard, but once you figure it out it really is no big deal.

Posted 3/21/2009 2:44 PM (GMT 0)
That is great. I am so excited to try it. I am going to go purchase it today and I will be off and running
Posted 3/21/2009 4:20 PM (GMT 0)
If you have a Whole Foods near you, check out their store brand gluten-free bread mix.  It's excellent, and cheaper than Bob's.  (I haven't tried Bob's yet, so I can't compare taste/texture.)  Snack foods were the hardest thing for me to work around, but Gultino makes excellent gf pretzels.  I like them better than regular pretzels.  They're holy-cow expensive, but worth it for an occasional treat.
Posted 3/21/2009 5:24 PM (GMT 0)
I have added that to my grocery list. So I guess I will be feeling better soon but broke. Oh well, I guess it is worth it.
Posted 3/21/2009 5:41 PM (GMT 0)
It can also be nutritional issues one may not be able to address by food or suppliments alone, so you might want to think about getting your blood vitamen levels tested, and a possible urine analysis for excreting too much of stuff like calcium.
Posted 3/21/2009 10:31 PM (GMT 0)

Hi everyone,

I usually don't reply, but I always read these boards.  I was diagnosed with Crohn's disease after my son was born in 2000, after that came the diagnosis of GERD, depression, Discoid Lupus and now I am showing signs of diabetes.  about 4 years ago came the brain fog to the point that I thought I was going to end up in the psych ward.  Then two years ago I found the SCD Diet, and I can tell you after 2 weeks on the diet the brain fog lifted, and even my husband noticed it.  I was on the diet for 2 years and sadly I had to go off it strictly because of the diabetes problems.  But I also found that if I went of the diet just for a few days the brain fog came back. But because I read these boards I found the GREAT TASTE NO PAIN diet.  I can eat wheat and bread again and its exciting.  I have been on it for 2 weeks now and still no brain fog.  I was really scared that it was going to come back because it affects me at my job and home life.  I don't know if it will help, but either one of these diets have really helped me with my Crohn's and my brain fog.

Posted 3/22/2009 2:14 AM (GMT 0)
I always have brain fog if my B-12 is low. I can't absorb it from food and use a creme and absorb it through my skin. I spent a year gluten free, I had no positive or negative affect from it. except I lived pretty much carb-free for a year and lost a little weight LOL. i could not eat rice or relaly any other carb at that time except corn tortilla chips so it was a tough year for me. After 2 colonoscopies my GI doc said there was no sign of gluten intolerance so I happily jumped back on the gluten wagon. Interestingly, I never went back to eating much wheat, but when I have it I enjoy it. And I'm glad also to be able to have things with barley malt in it -- man that ingrediant is everywhere.

to the gluten free folks: if you have a whole foods near you, they have a boxed GF bread mix, that's okay. They also have a bunch of other boxed mixes for GF folks that are affordable and pretty good.
Posted 3/22/2009 10:19 AM (GMT 0)
i dont mind your issues at all! :0)
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