SCD diet???

Hi & welcome to Healing Well. Your gi is absolutely right, you cannot stay on Prednisone like you have been doing. It is ok to take it short term to get over a hump but you have been warned about the down side to it. It also affects the adrenal glands & can make a mess of things. That should get your attention more than some of medications used to treat the disease.

There has been some people that has come through here over the years that has tried the SCD diet. A lot of people find the diet to be too restrictive. People have commit 100% or not bother to see if it helps, in other words no fudging. How did the dr classify your disease activity, mild, moderate or what?

A lot of us are on Imuran with no issues. Imuran takes a couple of months to become effective. I am not sure why your dr has not offered you any of the other medications to treat you, unless you are resistant to trying medications. If this is the first time the dr has offered something besides Prednisone, I would be looking for a new dr.

You need to understand all medications come with potential side effects. Key word is potential, it does not mean you will have any of the side effects. By law the FDA requires the potential side effects to be listed when medications are in the trial phase. If you looked up the potential side effects of Tylenol you probably wouldn't take it anymore. But, from the sounds of things you don't have much quality of life. Been there & done that & medications gave that back to me & many others.

Treatment of this lousy disease is a personal choice. I hope you have success with whatever route you take.

Take care.

He has had me on Sulfasalazine now for 3 years and I had to beg him for prednisone when I was 4 months pregnant which he finally approved because my OB contacted him saying I need something to help me through the pregnancy. I went down hill once I got pregnant. I've asked him for other options but he's been reluctant about it saying sulfasalazine does the same job as other meds. I just went to my Dr appt 2/1/2018 with the intentions of switching GIs if he didn't help me. I asked him for Lialda because I have 2 family members on it who are doing very well on it and it seemed to have less side affects but offered me Imuran or Humira. He suggested I start with Imuran. I've dealt with UC/ Crohns now for 26 years. Found remission in 2009 for 5 years. Got really sick 2014 hospitalized then got better for another 2 years but got a colonoscopy in 2016 which put me in a flare and have not recovered since. I have a 5 yr old and 4 month old and feel horrible all the time. Was hoping Imuran kicked in right away but now hearing it takes 3 months saddens me. But I suppose I have no other option but to be patient. I've never heard of the IBD diet but will look into. Not looking forward to the restrictions of the diet but it has to be better than the restrictions crohns has me In already - stuck at home all the time.
Thank you for replying wish me luck!

Post Edited (Summer4) : 2/4/2018 7:29:22 AM (GMT-7)

You may also want to check out Danielle Walkers website Against All Grain. She follows a paleo type diet and shares her history with UC. Before I had my colon removed I tried the SCD diet faithfully for a couple of months but it didn’t help me. This will give you one more option. What works for one person might not help someone else. I know it’s hard to keep testing diets because it’s so time consuming and frustrating to spend two or three months to my to find yourself back at square one. Hope you find some relief.

Consider the AIP diet. A small study was done with Crohn’s and UC patients at Scripps in San Diego. Patients adhered to their medications. The end result was over a 70% remission rate. Pretty impressive, but of course it was a small study.

Here is the published study:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5647120/

Here is an article about it (easier read):
https://autoimmunewellness.com/aip-medical-study-results/

Beware of people who say: "And gluten is one of the major causes of IBD symptoms"


Your GI must have considered your disease mild? Do you know the location, extent and severity of your disease?
It does sound like you are not being treated adequately. Another GI may be better.
Good luck with your experimenting.

You are ludicrously exaggerating as always IAC, trying to say that gluten is the major cause of IBD symptoms! It is a wild statement, that does a lot of harm.

And why is there no mention in your signature that antibiotics are the only thing that get you out of a flare?

You have become a troll.

ambling said...
You are ludicrously exaggerating as always IAC, trying to say that gluten is the major cause of IBD symptoms! It is a wild statement, that does a lot of harm.
And why is there no mention in your signature that antibiotics are the only thing that get you out of a flare?

You have become a troll.

Absolutely right. How dare trolls like iamcurious have the audacity to post on HW that food and/or gluten can trigger IBD symptoms for some people. Such wild statements can cause tremendous harm, especially for newbies. Where is garylouisville when we need him to counter this kind of talking trash.

i understand that eating gluten can harm the intestinal workings of some folks -

but what i don't understand completely is the harm that is caused by saying gluten causes harm -

who exactly is harmed and how exactly ?

I do not eat a lot of bread, maybe once or twice a week a biscuit. I am prone to peanut butter & saltines a good deal, helps me when I have an upset stomach. Could I go gluten free, I don't know. I see no need to since I don't have issues with it. After my resection surgery my diet was super bland & meager for several years. I cannot eat anything I want or how I ate before surgery. Mainly, I pay attention to foods that bother me & avoid them. I do not follow a diet, instead I eat whatever agrees with me. The one thing I miss the most is a chef salad, instant cramping & diarrhea, same thing happens with cabbage. I use to eat chef salads a lot in the summer when it was just too hot to cook a meal. I cannot eat raw veggies, what ones I do eat I have to really cook them. As far as I am concerned diet is very much an individual thing & does not apply to everyone. I see members post here that they eat anything they want which is more proof, lol.

My neighbor's teen has a very bad gluten problem. Her issues were upset stomach & horrible hives after eating. I saw pictures of her back & it was incredible. Finally after much testing an allergist found the problem. As long as she stays gluten free she has zero problems.

I liken some of the diet thing to people that take this supplement or that one & swear they can tell a difference. Is it a placebo effect, I don't know, but I do believe the mind & the body parallel together. People that like to be proactive with their health, this often gives them some sort of self control over what ever their ailment is.

What you said was.... "gluten is one of the major causes of IBD symptom

And because you believe it is a problem for you UC, you come onto the Crohns board to make wild statements about it being a "major cause of symptoms for IBD"!

You also make ignorant remarks about mesalamines, which are not generally useful for Crohn's disease (as they are topical meds) and then call other meds "big guns".
That is why you get accused of spreading fear, and of misleading people.

Climb back under your rock coffeemate, you only pop out to throw stupid comments around.