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To those of you who have had success on gluton free diet

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Ulcerative Colitis
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Posted 3/1/2010 4:13 PM (GMT 0)
     Were you ever tested to see if you indeed were gluton intolerant?  I had the test several years ago, shortly after being diagnosed with UP and it was negative so the doctor said gluton would not hurt my condition.

     I am at my wits end right now.  Today I have gone in excess of ten times.  I had to take Immodium to see if this would stop.  I had a good day yesterday and went out to dinner with my husband.  I ate roast turkey with stuffing, peas and carrots.  Had just a bite of my husband's chocolate cake for dessert.   This morning I had my rice krispies with Silk, ground flaxseed meal 1T, 1/2 banana.  What in the world am I doing wrong?

Posted 3/1/2010 4:22 PM (GMT 0)
Are you sensitive to MSG? One of the last things I'd eat in a restaurant is stuffing...the mixes all have MSG, and even if it's not a mix, I'm sure they use broth in it, and a lot of broths have MSG.

Anyway, I hope you find some relief soon.
Posted 3/1/2010 4:23 PM (GMT 0)
I know you are weary of hearing me say this, but you need surgery!!! You have suffered far too long and nothing seems to work for you. Based on what I read it sounds as if your quality of life is low.

Sue
Posted 3/1/2010 4:51 PM (GMT 0)
Stop asking what you're doing wrong- you're doing nothing wrong! This is a disease, you have little to no control over it, & you are currently experiencing refractive colitis- responsive to nothing! It's awful. Your quality of life does sound absolutely terrible these days- I'm sorry! I don't know...... you can try to stick it out in the hopes that something turns around, & limp along day to day with the help of Immodium, diapers, & next to nothing to eat. Or you could talk with a surgeon. Or try Humira ASAP. Truly, those are your choices. It may simmer down, your current flare, or it may not. It's really how much you are able & willing to deal with, you know?

Posted 3/1/2010 8:28 PM (GMT 0)
And as for gluten, if you really want to see if you have an issue with it, it does not hurt anything to go gluten-free for a bit. Before I was diagnosed, I asked my doctor if celiac disease could be my problem. She said she didn't think so but it wouldn't hurt anything to try going gluten-free for a couple of weeks to see what happened. Then reintroduce it to see what happened then. From what I understand the difference becomes apparent quite quickly if you have an issue with gluten.
Posted 3/1/2010 11:25 PM (GMT 0)
     Sue...I know my quality of life sucks right now.  I just keep hoping and praying things will turn around.  I am not bleeding.  My urgency issues are confined to the mornings.  Yesterday, I didn't move my bowels at all!!!  Go figure.  Today was a horror.  Well, up until around noon it was.  I took liquid Immodium...only 2 teaspoons and that helped.  So I attribute this to my IBS issues rather than the IBD.  Frankly, I am scared to death to have the surgery.  I heard some frightening reports.  Even the GI surgeon I consulted after my hospitalization in 08 explained he didn't think I was a candidate for the surgery....not at that time anyway.  My colitis was considered mild/moderate....hate to see what severe is....maybe it is severe now though.  I am scheduled for a colonoscopy on the 12th.

     I am hoping that with the increase in the Remicade dose, which is scheduled for April 9th, if not sooner....maybe, just maybe...it will turn the tide.

     *I can see Suebear rolling her eyes at me*...lol.

Posted 3/2/2010 12:11 AM (GMT 0)
You never know Christine- with the increase in Remicade, it might just buy you some time. I hoped my increase would buy me a year, max. And here I am, 2 years later, after a scheduled surgery- still got the colon. HOWEVER, I would use that time wisely- even if oyu are feeling great- go talk to a reputable colorectal surgeon. You know that the next step is most likely surgery- you gotta figure, an increase in Remicade might buy oyu some time- if it doesn't work, you can try Humira, which may buy you a little more time. But that clocks ticking! I think if you talked with a surgeon about your options, you'd be much more at ease. I don't blame you for trying to avoid surgery- no one *wants* it. But if it does have to happen, you'll fell much better & entirely different about it after speaking with a surgeon & some WOCN nurses. Ostomy nurses- they rule! Talk about taking the mystery out of it- after meeting with them a couple times, I was like "Hey, why doesn't everyone get one of these?!?! I never want to poop normally again!". Plus, 2008 is a long time ago, colorectal surgically speaking- a lot has changed in a few short years in that field. You may get an entirely different recommendation from a surgeon now.
Posted 3/2/2010 12:45 AM (GMT 0)
Hi Christine
In answer to your question: was anyone tested for gluten intolerance. Yes I was and my test was negative, meaning no problem with gluten. So I never dieted to remove gluten after that test (more than 5 years ago IIRC).

HOWEVER in Jan 2010 (just 8 weeks ago) my husband told me about an article that said that many people being treated for UC actually were gluten-intolerant. I told him I had been tested, blah-blah-blah. Long story short I decided to try one more diet modification. Within days of removing gluten I stopped bleeding. Hmmm. By keeping a food journal I discovered other food groups that affected me negatively and when I removed them the urgency lessened. My three biggest complaints: bleeding, big D and urgency are now almost gone entirely.

Every colon is different. Keep a food journal, pay close close attention. My diet is extremely healthy even without gluten, grains, dairy and low fruit. You need to find what works for you but gluten-free is a good place to start.
Posted 3/2/2010 1:21 AM (GMT 0)

Christine,

I am rolling my eyes, can you see!! 

Okay, first, the surgeon you consulted with DOESN'T LIVE IN YOUR SHOES!  For him to say you have mild to moderate disease is presposterous based on your symptoms and your quality of life.  Sure, things might not look bad up there but it's bad enough to keep you tied to home with a completely unpredictable life.  Geez,  you can't plan anything and haven't been able to for far too long!  I had a spot on my rectum that was about the size of a dime that wouldn't heal and I was MISERABLE!  Fortunatly my GI knew it because I bent his ear every week!  May I suggest you think of a timeline.  Consult with your GI and tell him/her that if you aren't significantly better by May 1 (you pick the date) that you want surgery as this type of living is not living at all!

I'm looking forward to the day when you opt for surgery and come back here and tell us you feel so great you wished you had it sooner!

Sue

Posted 3/2/2010 1:23 AM (GMT 0)

Oh, and one last nagging thought.......the fact that you are taking Remicade and prednisone together tells me that you aren't winning the war here....You need to get off the prednisone and I know you know it.

Sue

Posted 3/2/2010 11:05 PM (GMT 0)
     Oh yeah, I know I have to get off the prednisone.  Today, I had an excellent day!!!  Maybe I am psyching myself into getting better...scaring the wits out of my colon but telling it if it doesn't shape up it is going to ship out.

     I didn't move my bowels today at all. Went enough yesterday I guess.  I even went to bingo...lost, but had fun.  Hubby and I went furniture shopping.  I watched my diet like a HAWK.  Going to try taking the Cholestyramine in orange juice to firm up the stool.  We have a trip planned for the casinos tomorrow, so I better wait another day to start the Cholestyramine.  I am not certain what exactly will be the outcome of that.

Posted 3/2/2010 11:31 PM (GMT 0)
Hi Christine :)

I just wanted to chime in saying that I also was tested for Celiac's disease and my blood test came back negative. BUT, the ONLY true test for Cecliac's is to have an endoscopy done and they take a sample of the small intestine and test that... The blood test is not 100 percent accurate. When I have taken Gluten out of my diet, my symptoms improve.. but unfortunately, I am WEAK WEAK WEAK.. and lately have been cheating and eating some foods with Gluten in them.. hence, maybe that's why I can't get rid of this darn right sided pain.. I swear, I need to get my head out of my rear and go gluten free 100 percent for a couple of weeks and see if that indeed makes a difference this time.

I know that when my GI called and told me that my test was negative, I went back on gluten.. DUMB DUMB DUMB... I think I am going to make a pact with myself to go it straight again and see if it makes a difference.

If you are gluten intolerant, it was the bite of chocolate cake that did you in.. even a small amount of gluten for people with celiac's can cause harsh consequenses. My next door neighbor has celiac's and she has been eating gluten free for 20 years.. she's a total pro when it comes to eating gluten free and does just fine as long as she is careful.

Boy, I sure hope you get better soon.. you've been through the ringer.. and I can surely relate to that!!!
Posted 3/3/2010 2:34 PM (GMT 0)
http://www.huffingtonpost.com/dr-mark-hyman/gluten-what-you-dont-know_b_379089.html
Posted 3/3/2010 2:55 PM (GMT 0)
www.enterolab.com

 

Posted 3/3/2010 3:05 PM (GMT 0)
http://www.webmd.com/diet/slideshow-gluten-free-diet
Posted 3/3/2010 4:23 PM (GMT 0)
Really, three separate posts, joan?

I know gluten is this year's "causes ever illness known to man" demon, but give us a break. We've been around our digestive systems for years, most of us have tried every diet known to man or alien, and we know if we're gluten sensitive.
Posted 3/3/2010 5:03 PM (GMT 0)
I tried the SCD Diet which I guess is gluten free since you don't consume any carbs and it did not improve my condition. Not only did it not improve my condition but it actually made me lose a lot of weight really quickly and I became sicker.

I am all for trying it but don't expect it to be the magic cure, especially if you've been tested for celiac and it came back negative.

I do agree with Sue to some extent, you should definitely be looking at surgical options. I know you're hoping for something to help aside from surgery but from reading, I've seen so many people become resistant to Remicade and Humira fairly quickly. I've also seen a lot of people who have not responded at all to these drugs. I hope you have luck with an increased dose of Remicade or with Humira but as Eva said, even if you do, while you're feeling good, you should prepare for the day you stop responding by finding a surgeon you're comfortable with. I dread the idea of surgery because it is an inconvenience but there are some huge positives, being off the drugs, no more unpredicitability, no more urgency... It's hard to accept surgery as the solution because we know it's such a long road.

Have you looked into clinical trials in your area? Sometimes you can find trials for drugs that are not available. Would you try LDN? Strict SCD Diet?

Posted 3/3/2010 5:09 PM (GMT 0)
Um just and FYI if you go gluten free and are tested either blood or biopsy after a few weeks you will get a false negative.

I had been gluten free for 6 months when I was diagnosed with UC and had my worst flare ever. I had tested negative blood wise but kept it up with all new pots, pans, made my own bread on a brand new machine...It was quite labor intensive. I even carried my own gluten free soy sauce to have sushi. Everytime I had an off day with my colon I blamed some possible cross contamination. The day I got my diagnosis I went to fire house subs, cinnabon, and pizza. I didn't react and it was actually the day I started pred and lialda and was finally seeing a light at the end of the tunnell.

I have also had every food allergy test known to man..
Posted 3/3/2010 5:13 PM (GMT 0)
I appreciate those posts, Joan. I'm sure many here thought probiotics were some wacky gimmick too until very recently. It never hurts to try if you're up for it. I do appreciate this board but if anyone who's interested in trying dietary measures is going to be shot down, maybe it's best for me to look elsewhere. I was finding this thread interesting until the comment...
Posted 3/3/2010 6:04 PM (GMT 0)
killcolitis
I have the same feeling about negative comments. Sometimes I think the people who continually say "you need surgery" are being too heavy-handed. That decision is a personal one and there is no going back after it's done.

There is nothing wrong with continuing to search for a non-surgical cure. I for one think I've solved my riddle with diet modification. But you don't see me blaring out "You need to do MY diet and be cured". My diet may not be right for the next person.

On another note, I saw a book on amazon about the FODMAP diet being used in Australia. Yet another iteration (but different) of SCD type diets. I did a google search and voila! there was a long thread on this forum about it. Funny thing, the people talking about it and going to do it don't post here anymore. Are they cured? I know I'll quit posting when I feel 100% normal so maybe they are better now (I'm 75% there).

There are parts of the FODMAP that echo my own diet. It's very interesting scientifically. Anyone still reading here done this? Even failure information is helpful.

Denise

FODMAP diet thread: https://www.healingwell.com/community/default.aspx?f=38&m=998680
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