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Ulcerative Colitis
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Posted 5/28/2013 7:20 PM (GMT -5)
Hey, I told my GI that I was doing the SCD and he said it was a load of crap.

I have no way of proving that it works because I started it when I was symptom free. I just started it to hope that it would increase remission.

So do I go with the GI or continue?

The only thing about diet he said was dairy products are bad when having diarrhea because it can increase symptoms due to the lactose. And that some percent with U.C are lactose intolerant.

And that probotics are benefital.

-------------------

TBH how would you exactly know if SCD actaully worked. How would you know 100% for sure if you are also taking medication as well and time and the medication started doing its job. Wheres the proof?

 

Post Edited (Jessicaaa) : 5/29/2013 5:48:25 AM (GMT-6)

Posted 5/28/2013 7:25 PM (GMT -5)
Hey and welcome to HW.

The whole diet and UC thing is very controversial. Many people here use diet to manage their symptoms, but I personally, have had zero impact on my condition from changing diet. Of course, I tried diet when I was in the worst possible flare, running to the toilet 20x+ a day. I figure, if it can't even minorly help to alleviate those types of symptoms, it wasn't doing anything. I think all probiotics are different. You can make your own yogurt that contains next to no lactose. The longer you let it ferment, the less lactose. Again, I ate LOADS of homemade yogurt without seeing any improvement but that's just me. You should do what works for you. If you were able to maintain on only diet and probiotics, you wouldn't be the only person here. In my case, i'd prefer a doctor that says SCD is a load of crap because, for me, it was.
Posted 5/28/2013 9:54 PM (GMT -5)
Most if not all GI's do not believe food is related to UC. I quit hoping to get any support on that issue (even though diet is totally responsible for my remission) and only want respect from my GI not "that's a load of crap" talk. My new GI listened, said there were no studies supporting diet but did not give me negative feedback.

For 10 years I took various meds like a good girl and did not get better, just worse every year. So modern medicine did not work and I was unwilling to go onto stronger meds like Remicade or Humira. Since diet mod. did definitely work for me if my doctor did not support diet I'd find another doctor.

In your case you can't definitely say that diet helped you but that doesn't change the fact that you deserve respect for being pro-active in being healthy. If your diet helps lower inflammation that's good for your whole body and probably your UC too.

If you live in a city where you have many GI's you might want to find one who is more respectful of what you want to do. Some doctors will be your partner in being healthy and others don't want any discussion, just take the pills as prescribed, get your colonoscopy when you're told to and don't ask any questions.
Posted 5/28/2013 10:18 PM (GMT -5)
i've said this before but i'll say it again ............ "what ima said"

i pretty much wait for her response so i can follow and say the above - we're like colitis cousins !

 

Posted 5/29/2013 7:30 AM (GMT -5)
Well, there's no way to know if SCD is doing anything for you or if it's the drugs, unless you stop on or the other. While I think saying that SCD is a "load of crap" is pretty harsh, there's not a lot of hard scientific evidence out there that it really makes a huge difference for UC. TBH, I personally wouldn't ever go on a restrictive diet like that if I were in remission -- I enjoy food too much!

It's up to you if you want to find a new GI, honestly.
Posted 5/29/2013 7:50 AM (GMT -5)
Jessica,

Welcome to the forum.

Yea, pretty much what Ima and soystud said, lol.

I can piggy-back on that too... haha

Seriously, get a new GI.

 

Posted 5/29/2013 7:59 AM (GMT -5)
If you feel diet is helping, you certainly can continue it without discussing it further with your GI. Since he believes diet doesn't matter he shouldn't care what you're eating as long as you're getting the nutrients you need. I'd continue both; the diet may be great for you but the medications help to prevent or reduce the severity of flares in most, and have a protective function against colon cancer.
Posted 5/29/2013 8:53 AM (GMT -5)
TBH how would you exactly know if SCD actaully worked. How would you know 100% for sure if you are also taking medication as well and time and the medication started doing its job. Wheres the proof?

I didn't see this question earlier.

I could definitely tell that diet was the reason for remission in my case because my symptoms (bleeding, urgency, diarrhea, etc) were ever present and not getting any better with meds, I only got better after diet modification (continuing meds). Before diet mod. GI said biological drugs were up next for me (Humira, Remicade) because they were the only ones left I hadn't tried and my UC did not respond to anything else (mesalamine enemas helped a little with bleeding but nothing else). That threat (strong drugs) made me try again with diet even though I failed to get remission through diet+meds previously.

I tried diet mod. many times in the past with many variations and little success. This last time I only went gluten-free and saw bleeding stop in just a couple days (still had other symptoms). That gave me courage to expand diet mod. and removed dairy next and got more improvement. I discovered that my gut did not like many SCD-legal foods so it was trial and error and not an overnight success. But the bottom line for me is that it was the only success I've had so I pursued it and kept it up.

If you have no success with diet mod. then obviously you won't want to keep it up.
Listen to your own gut not anyone on a forum.
Keep a food journal and try and see patterns that don't appear right away.
I would have sworn I had no problem with gluten, took the test and it was negative. Never could connect my symptoms to gluten until I removed it. That's my gut, yours may be different.

I am still tinkering with diet but am sooo much better. Gluten is still out but every now and then I have ice cream or chocolate with no dire results. More like IBS now which doctors can't really do anything for.

Good luck. One day at a time is a good mantra. Removing a food does not mean "forever".

P.S. thanks soystud and InSoFla for your nice words.
Posted 5/29/2013 10:11 AM (GMT -5)
I believe the diet can help some. If he otherwise doesn't mind you doing the diet stay with him. If you feel uncomfortable with him, switch GIs.
Posted 5/30/2013 12:41 AM (GMT -5)
Some thing negative about the diet I found.

"Excluding starchy vegetables and grains eliminates dietary sources of short-chain fatty acids, the preferred fuel source for colon cells, he says. "This is important because without that fuel source, those cells don't function as well." In fact, he notes, in a condition called diversion colitis, which sometimes occurs in any remaining colon after a colectomy, colon cells are depleted of short-chain fatty acids. Restoring those nutrients through an enema cures the diversion colitis. "Thus," he says, "this diet could make the colitis worse. To exclude the dietary source of short-chain fatty acids without a compelling reason just doesn't make sense to me."

What do you guys make of this?

I thought SCFA's where made from fiber? Which I get more then enough.
Posted 5/30/2013 2:33 AM (GMT -5)
Did that doctor cite a source or is he just tooting his horn? If you want a starchy vegetable eat some squash, that's SCD legal. SCD doesn't cut out all starches.
Posted 5/30/2013 5:15 AM (GMT -5)
If that's all that's wrong with SCD then I think it's worth a try. Certainly the intro diet would be a problem for butyrate production but after that you add prebiotic foods such as artichoke, asparagus, banana and later navy beans.
Posted 5/30/2013 8:40 AM (GMT -5)
This is the site I got the quote from http://www.ccfa.org/resources/specific-carbohydrate-diet.html

So if you add artichoke, asparagus, banana and later navy beans etc to your diet it will add SCFA's?

I couldn't find any sites that give a list of SCFA foods.
Posted 5/30/2013 12:58 PM (GMT -5)
Also some say sweet potato is legal.
Posted 5/30/2013 4:33 PM (GMT -5)
Sweet potatoes/Yams are definitely illegal.

WRT SCFA you will get that production with SCD foods. You can also check butyrate with the stool tests. Mine was low initially and then was higher after working with my nutritionist.
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