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Gluten free didn't work

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Posted 7/2/2013 2:16 PM (GMT 0)
Oh well... i though I had found my "cure." I should have known that when I had my last colonoscopy and there was still a section of inflamation that gluten wasn't the issue.

4 months, pure gluten free... Started off in what is now known to be a Prednisone induced remission, kept taking 4X lialda, bi-weekly rowasa, and occasional canasa, but now I am flaring again.

GI wants blood work and will probably give me one more crack with prednisone before moving on to humira/remicade.

At least I tried?

 

Posted 7/2/2013 2:20 PM (GMT 0)
Well, gluten-free didn't work for me either. I did gluten-free for a month, and I chose to do it at a time where I already had two flex-sigs scheduled a month apart. I started gluten-free after my first flex sig, and stopped it after the second; no visible changes according to my GI. I've been eating gluten again, ever sense.
Posted 7/2/2013 2:45 PM (GMT 0)
"35 yr old male w/1-2 daily bms; "

1-2 bms, you call that U.C.? I'm dissapointed in your U.C. lol
Posted 7/2/2013 2:47 PM (GMT 0)
"At least I tried?
"

You haven't tried hard enough. Everyone knows it's 6 months. Now you have to restart again from the beginning because you ingested gluten. The whole game resets, Back to square one.

Now, increase the difficulty. Don't eat gluten, no dairy, no complex carbs (no rice, no potatos, no beans, etc)

Come back in 6 months and report. Dismissed!
Posted 7/2/2013 3:06 PM (GMT 0)

somedude said...
"35 yr old male w/1-2 daily bms; "

1-2 bms, you call that U.C.? I'm dissapointed in your U.C. lol


Hey man, I paid my dues, I was going like 12-20 times this january when this flareup happened haha. Now this is a treat, semi-remission kinda thing.
Posted 7/2/2013 3:11 PM (GMT 0)
Yeah, I was totally convinced that gluten free made a difference, and as a result stopped enemas. Experienced less but still urgency and a little rectal pain and thought that's my normal. Went back on enemas at least five nights a week and became the poster child for enema efficacy.

But I didn't stop gluten free eating because there were so many other benefits including absence of joint pain. I interpreted that as reduced inflammation and thus felt it was having an anti-inflammatory effect on my colon. That is possible, but it certainly did not tamp down all my inflammation and I need a perfectly quiescent rectum . So I'm gluten free and rectal mesalamine compliant, and sticking with it.
Posted 7/2/2013 3:31 PM (GMT 0)

Somedude said...
"At least I tried?
"

You haven't tried hard enough. Everyone knows it's 6 months. Now you have to restart again from the beginning because you ingested gluten. The whole game resets, Back to square one.

Now, increase the difficulty. Don't eat gluten, no dairy, no complex carbs (no rice, no potatos, no beans, etc)

Come back in 6 months and report. Dismissed!

 

 

I can't tell if you are kidding, or somewhat kidding. But, I still haven't ingested any gluten so the meter is still ticking... albeit senselessly. And, I have tried the SCD, spinach and sunflower seed, Paleo, over the years with no luck. At this point I am convinced that food does not have any causation with my UC. Sure, when I am flaring some foods can irritate things more than others, but that is the only connection for me between diet and UC.

Posted 7/2/2013 3:36 PM (GMT 0)
"I can't tell if you are kidding, or somewhat kidding. But, I still haven't ingested any gluten so the meter is still ticking... albeit senselessly. And, I have tried the SCD, spinach and sunflower seed, Paleo, over the years with no luck. At this point I am convinced that food does not have any causation with my UC. Sure, when I am flaring some foods can irritate things more than others, but that is the only connection for me between diet and UC."

I'm pulling your leg. lol

If you can still do the diet do it some more. Try to reach a year mark. The joke with the 6 months, is that you hear that everywhere: "Oh, it's actually 3 months". when you reach that, "Oh, it's actually 6 months" when you reach that it's "Well, it's actually a year" lol
Posted 7/2/2013 6:44 PM (GMT 0)
jac...why haven't you been using the enemas nightly?  I'm assuming the part that's still inflamed is the rectum?


I'd suggest you do that and continue trying to exhaust that option......before going on pred.

q

Posted 7/2/2013 6:52 PM (GMT 0)
The enemas/canasa have never been very effective for me as most of my remaining inflamation is further up. The orals make it part way down, the rectals make it part way up... and then I am left with what is in the middle. DX'ed with moderate pancolitis about 4 years ago. Have tried lialda, apriso, and asacol, but none of them seem to make it there. My flaring doesn't contain a lot of blood, mostly mucus, with a browinish/pinkish tinge. (sorry for the graphic details) And burning/stabbing pain near my heart.

 

Posted 7/2/2013 7:06 PM (GMT 0)
hey, jc - we use to call them squirt guns - now they are water cannons/blasters/or something like that - maybe you need to put a little force behind the enema action - seriously, i have no idea how far that stuff actually goes or even needs to go - but in your case the father down/up the hole the better -

sometimes after i got to the point where i could quit clenching every muscle in my body in an attempt to keep the e in, i would do the butt up in the air thing, trying to let gravity do it's thing - i don't have a clue if it helped, but it gave me something to do instead of just laying there thinking "i just shot s**t up my ass - what a wonderful life i have" -

 

Posted 7/2/2013 7:14 PM (GMT 0)
So, you have absolutely NO inflammation in the rectum?
Where exactly is farther up?

q
Posted 7/2/2013 8:39 PM (GMT 0)
If you don't get relief in 6 WEEKS then it's fair to say it won't help you. Ideally you aren't just eating more dairy, carbs and sugar to make up for it. 4 months is beyond a trial...sorry it didn't help.
Posted 7/2/2013 9:35 PM (GMT 0)
No, I was eating a lot more vegetables, soybeans, and eggs (egg whites).

Colonoscopy showed that the patch of inflammation was in the transverse colon. Am I saying that there is no inflammation in the rectum? There wasn't when I had the colonoscopy... I don't feel like there is now because I am not getting the urgency that I have had in the past before the rectal meds.

 

Posted 7/3/2013 6:45 AM (GMT 0)

soystud said...
i don't have a clue if it helped, but it gave me something to do instead of just laying there thinking "i just shot s**t up my ass - what a wonderful life i have" -

LOL

As for gluten free: whenever i have gluten i bleed the next day even if no other symptoms whatsoever.
However, despite being gluten free for a year now im flaring..it started after i tried blackseed oil to help boost my immune system, anyway yeh just my experience.
Posted 7/3/2013 6:01 PM (GMT 0)
I don't think you should just cut gluten. You should also cut dairy, sugar and processed foods. Anything that promotes inflammation.
Dairy is just not natural for a human to consume whether we love it or not. We are the only species that drinks milk of another species AND continues to drink it throughout our life. If that sounds strange, it totally is and when I think of it I get a little grossed out! Not to mention, homemade coconut milk is SO easy to make AND is much better than store bought!

Sugar promotes inflammation and when not in it's natural form, is not very good for you. Our bodies are FULL of yeast and what does yeast do? It also promotes inflammation! So the sugar feeds the yeast which feeds the inflammation....very vicious circle!

Gluten is just bad....even if you are a healthy person. I believe it is what causes the majority of weight problems in people. When I cut the gluten out, my stomach shrunk big time and when I eat it here and there my tummy blows up! I do not have a severe allergy to it but I am pretty sensitive to that AND sugar! I notice when I consume sugar after not having it for a while that I run to the bathroom pretty quick!
Posted 7/3/2013 10:23 PM (GMT 0)
I was reading in this book wheat belly and it was saying how gluten can be in other grains as well. So maybe to really do gluten free you have to get crazy and do grain free. I know it's hard as hell tho I sure suck at it lol get too hungry. Maybe it would work for you better tho without the other grains
Posted 7/3/2013 10:27 PM (GMT 0)
Another thought I had is similar to what others are saying, it could also be other things like besides gluten in the product, what about the other ingredients? I know when I read the back of bread I see a lot of crap in there! So, it could also be additives, sugar, etc. maybe even yeast might bother you. Dairy etc. I saw some ingredient list, one of them said "dough conditioners" I was like what the f is that. Lol it's bad when these days you don't know half of what the ingredients are in the "food" lol stupid processed food :(
Posted 7/4/2013 5:09 AM (GMT 0)
GF is't the silver bullet, but it's a healthy start. Keep it up. Keep seeking. More and more studies show Gluten(in the US) is not healthy...especially for auto-immune dis-ease's
Posted 7/4/2013 3:37 PM (GMT 0)
The thing that is so tricky about all the diet related changes is that they can take time and it can be hard to determine what specifically is helping and/or whether it is just coincidence. I do know that when I am flaring there are clearly foods that aggravate it and while cutting them out helps at the moment, for me they should no benefit long term in preventing the flares in the first place. I was convinced that the Gluten was in fact a trigger as when I cut it out back in February I saw immediate results. But here I was.... 4 months later in my worst flare since my original diagnosis 4 years ago.

So, yesterday I did end up starting another pred taper course. But, my GI has told me that he really thinks it is time to consider moving on to a biologic, which scares the crap out of me (pun intended).

If I was in my 60s, I wouldn't be so concerned about it, but being in my 30s and the time that I will be on them.... I am concerned. And, of course there is the expense as well.

Posted 7/4/2013 4:19 PM (GMT 0)
I know how tricky it all is with diet because I tried and tried and failed and failed for many years.
If diet was easy more doctors would be suggesting it but it is definitely not easy, many factors involved including hidden ingredients in common foods.

I was also at the biological point 3 years ago because of failing with all meds under that level.
If you have tried all diet mods and it's not working then you really don't have a choice except for surgery. You can at least know that you tried everything diet-wise.

Have you noticed however that some people who have had the surgery post about needing to modify their diet? One person was using Paleo diet to help their output is what they said IIRC.

I continue to tinker and improve my diet mod., still finding things that aren't so good for me.
But I have a bigger list of OK foods than when I started 3 years ago and way fewer symptoms.

Best of luck going forward. Yes you deserve to live your life at your age.
Posted 7/4/2013 5:07 PM (GMT 0)
"If you have tried all diet mods and it's not working then you really don't have a choice except for surgery."

WAT?!, there's still biologics, other treatments in the pipeline.
Posted 7/6/2013 3:11 AM (GMT 0)
jse said...
I don't think you should just cut gluten. You should also cut dairy, sugar and processed foods. Anything that promotes inflammation.
Dairy is just not natural for a human to consume whether we love it or not. We are the only species that drinks milk of another species AND continues to drink it throughout our life. If that sounds strange, it totally is and when I think of it I get a little grossed out! Not to mention, homemade coconut milk is SO easy to make AND is much better than store bought!

OK... maybe I am just being *****y because I am not feeling well and am frustrated... but I've seen others post this kind of thing as well and while it may be true... it bothers me.

After all, we are the only species that cooks our food, but I don't think anyone would recommend eating raw animals.

We are the only species that farms our fruits and vegetables and doesn't shop in grocery stores.

We are the only species that imports herbs and roots from all over the world to take straight or make medications out of.

We are the only species that takes medicine when we are sick as opposed to letting Darwinism kick in and kill of those of that are weak.

Like I said... sorry to rant, I know you are only trying to help

Posted 7/6/2013 12:28 PM (GMT 0)
jc

I agree with your rant about milk not being evil.
There are many species that have unusual food sources, usually there is a symbiotic relationship. Masai people drink blood from cattle they keep and have done for thousands of years. We get milk and cheese in return for cows getting fed.

When a food bothers me I don't come up with reasons because that never worked, just take it out. Later try it again. Asking "why" a food is untolerated has never fit any particular reason for me or fit a named diet. Betcha a cavewoman would think our current foods are yucky.
Posted 7/6/2013 1:07 PM (GMT 0)
" Betcha a cavewoman would think our current foods are yucky."

I've never heard of a caveWOMAN - I think there were only cavemen - and I don't think they cared much about the yucky factor -

Post Edited (soystud) : 7/6/2013 7:45:07 AM (GMT-6)

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