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In remission I could eat anything, what to do during a flare?

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Ulcerative Colitis
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Posted 10/12/2013 2:17 AM (GMT 0)
When Remicade was working, I could eat anything. After 18 months it stopped working and I've been flaring since mid-May. I've tried Humira with out any results and am about to start to start Simponi.

I've been doing some reading and it's been suggested that I try the Fodmad diet. I've been tested for Celiac multiple times and it's always been negative.

My question is that if when I was in remission I could eat anything and that the only reason I am flaring is due to antibodies building up, is there any reason to try limiting my diet? I've lost 20lbs since my flare even on Pred (have developed fat pad on my upper back and stomach which has me very upsetP and tons of muscle (did triathlons prior to flare and was considered extremely strong) and would like to eat a regular diet.

Thoughts? My current meds are 5mg of Pred, Asacol, Immuran, and Humira with the switch over to Simponi next week. If things dont get better by the end of the year, I'm going to have surgery.
Posted 10/12/2013 2:23 AM (GMT 0)
That's a good question as I think far too many people restrict foods sometimes for no really good reason. I'm not saying there aren't times with good reason but I don't think people should restrict any foods unless they know for sure they have a problem with those foods. Of course that is open to experimentation. To answer your question though, when UC damages your colon, it can cause food problems, especially with certain foods. Unfortunately, everyone is different and you have to figure out for yourself what foods bother you and what foods don't. For instance, when your colon is feeling better you may be able to do dairy but when your colon is inflamed or damaged you may become lactose intolerant. It's really hard to give you advice on which foods might cause you problems during the time your colon is inflamed. I think it is safe to say though that everyone has problems with some kind of food or foods during these bad times.
Posted 10/12/2013 7:44 AM (GMT 0)
I think what garylooville is trying say is, he don't know !

so what caused you to develop uc ? because mine is triggered by grains, I don't eat them - bingo, no more uc symptoms - all the drugs you are taking don't address the root cause -

is food your problem or is it another allergic reaction ? what have you tried eliminating ?

my only advice is to do something different - throwing drugs at it seems kinda pointless -
Posted 10/12/2013 12:31 PM (GMT 0)
The FODMAP diet is an elimination / challenge diet, so it can help you determine foods that bother you. I have reduced gas and bloating by limiting FODMAPs.
Posted 10/12/2013 4:40 PM (GMT 0)
I agree with Gary, this disease affects everyone differently. There is no 100% answer for anything dealing with this disease. Diet causes some people to go into a flare, meds stop working for some, stress can cause others issues, others there is absolutely no reason except where the UC says F U, I'm coming back and gonna make it hurt. There is not 1 guaranteed reason that would cause all to go into a flare.

If Soy was correct, everyone would be off of their meds. Diet is not a guarantee to control UC. Does it work for some? Yes. Does it work for all? No. Do meds work for some? Yes. Do they work for all? No.

You just have a lifetime of trial and error, one thing might work for 10 years and then all of a sudden, it doesn't work anymore, you will then need to find something else to keep it under control.

Of course, surgery is always an option, but there are side effects to that as well. I haven't read too deeply as others have into it, but I have heard a lot of successful stories.
Posted 10/12/2013 10:28 PM (GMT 0)
You've lost a lot of weight and are on steroids. My recommendation is get an allergy test. It seems to me getting answers right away rather than trial and error is important in your case.

Check with your doctor (or call into the advice nurse) to find out if the steriods will effect the test results. I don't think all allergy tests are the same. I believe the test you would get from and Allergist is different than what you would get from a Naturopathic Doctor. Maybe others on here would know for sure about that?

When I have a flare that requires hospitalization, doctors usually put me on a low residue diet. Low residue foods are easily absorbed and therefore your body has low "output". The Mayo Clinic describes a low residue diet here: http://www.mayoclinic.com/health/low-fiber-diet/MY00744.
With more severe flares the doctor will have me go on a liquid diet, so that my body only has fluid output. I wouldn't recommend without talking to your doctor first, but here's what it is described by Mayo Clinic: http://www.mayoclinic.com/health/clear-liquid-diet/MY00742

I avoid dairy completely and avoid gluten most of the time. Gluten is a minor irritant, but dairy is a major problem for me. I also avoid spicy food, pepper and cinnamon. Some have been able to eat/drink dairy successfully by taken an enzyme supplement. Here's a thread about that from the other day: https://www.healingwell.com/community/default.aspx?f=38&m=2877275

The fat deposits should go away when you get off of the steroids. It's a side effect. I've had them and they went away for me.
Posted 10/13/2013 4:50 AM (GMT 0)
In general, there are certain foods that, when you're flaring, are more harsh on your colon. Gary has it right.

If you've been tested that many times for a gluten allergy, then believe the test results, especially since you could tolerate gluten when you were in remission.

I have found that it's helpful, when flaring, to stick to a low roughage, low residue.

1) Low roughage: Foods that don't digest very well are literally going to tear up your insides. Lettuce, raw vegetables, anything with seeds, popcorn .... If there's anything that you've eaten during a flare that has shown up almost completely solid in your stool, it's probably scraping your colon and you should abstain until you're in remission.

2) Low residue: You want to reduce the amount of fecal matter that you're producing, so you can give your colon more rest. Foods like white pasta, white breads, white rice, potatoes, etc are all great for this. In general, this is one of the benefits of the BRAT diet.

The idea here is NOT that these foods are causing your colitis. It's that when you HAVE colitis, eating lots of high residue food that physically damages the lining of your colon will make your symptoms a lot worse.
Posted 10/13/2013 5:41 AM (GMT 0)
I have issues with all grains - a test for celiac disease does not reveal that -
Posted 10/14/2013 9:41 AM (GMT 0)
Hi,

Just limit what you know effects you and dont look into it further because we waist so much time anaylizing diet when really diet or not we will still have this rotten illness.

My GI gave me good advice he said if you keep limiting the less you will tolerate in the long run and also you will be in a habit of cutting too much out. Re introduce things slowly so you can get used to them.

I personally have spent too many years trying all different eating plans and cutting so much out to the point were i nearly broke down, you can loose yourself in the process.. Food is not the enemy our immune system is.
Posted 10/14/2013 11:53 AM (GMT 0)
Well a good starting point is IBS safe foods, typically called soluble. Here are some I just pulled from a website:

Rice
Pasta and noodles
Oatmeal
Barley
Fresh white breads such as French or sourdough (NOT whole wheat or whole grain)*
Rice cereals
Flour tortillas
Soy
Quinoa
Corn meal
Potatoes
Carrots
Yams
Sweet potatoes
Beets
Squash and pumpkins
Avocados (though they do have some fat)
Bananas
Applesauce
Mangoes
Papayas (also digestive aids that relieve gas and indigestion)

Not all of these may agree with you but it's a good starting point.

John
Posted 10/14/2013 12:19 PM (GMT 0)
someone said:
My recommendation is get an allergy test.

I feel this will not be of real use because it's not really an "allergy" so much as it is an "intolerance" of certain foods. meaning a wounded/inflamed gut has a problem with some foods it wouldn't mind if it were healthy/uninflamed. Of course some people are actually allergic to some foods but a negative test does not mean your gut is able to process certain foods.

someone else said:
If you've been tested that many times for a gluten allergy, then believe the test results, especially since you could tolerate gluten when you were in remission.

See answer above. I got a negative test for celiac and believe that's true. However when I eliminated gluten my healing began for the first time ever. I believe my gut is "gluten intolerant" not allergic which no test (at this time) will be good for.

"Believe the test results" meant that I spent several years with bloody bad symptoms when I could have been feeling better. Simply by removing gluten.
Posted 10/14/2013 1:54 PM (GMT 0)
"Food is not the enemy our immune system is."

so i'm assuming you have no food restrictions ?
Posted 10/14/2013 6:06 PM (GMT 0)
Food really seems to be the big unknown. Im hopefully at the tail end of my worst flare(just started rowasa instead of canasa) to date and asked my GI what he thought about food. His response was pretty text book that its hard to say if food has anything to do with uc. Since my flare started Ive tried to stay gluten free but im not sure if thats helping our hurting. A lot of these plans like scd, paleo ect seem very tough to follow and can add stress which we know can be an issue with uc. Im going to see a nutritionist tomorrow which has uc experience so im interested to see what she says. Good luck and stay positive.
Posted 10/14/2013 6:34 PM (GMT 0)
You really should try the food elimination diet to at least give your colon a break. Bananas, rice, chicken cooked and broth anything covered under the SCD regimen. Drugs seem to just mask the symptoms and do nothing to help heal. Athletes need to eat healthy anyway in order to perform at optimum level so this is a good place to start so you can get back in the game of racing. Do you have anything on your schedule as far as races go?
Posted 10/14/2013 7:06 PM (GMT 0)
I'm not a big believer in nutritionists for UC as I think they are more knowledgeable in nutrition than knowledgeble in knowing what foods are good or not good for UC. They are more apt to try finding out where you are lacking in nutrition and find diet modifications which will help you get the nutrition you need due to you UC. In other words, if they think you need more fruits they will suggest ways to intake more fruits or certain fruits, not really knowing that those fruits could actually cause your UC to be worse. I would challenge them to forget about nutrition for a minute and see how much knowledge they have regarding which foods will make your UC condition worse or better. The truth is everyone responds differently to foods. There is no "one size fits all" so I would be a little leary of any nutritionist that thinks they know it all in regards to UC. Often it is trial and error and they can't possibly know ahead of time which foods will make which patient better or worse.
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