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Posted 6/4/2012 7:28 PM (GMT 0)
A huge thank you to everyone here who has had success and posted about their gluten free diets!

I've been flaring for 2 months now. On Asacol 5x/day and 60 mg prednisone. Confirmed that entire colon was inflammed 5/24 via colonoscopy, despite having been on Prednisone for 7 weeks. I went to dr last week--I am going back on Thursday when he expects me to give him decision on changing to Remicade or Imuran. He told me the usual: diets don't work, nothing you do will make you better or keep you from going on other meds or staying on Prednisone, etc. Last Wednesday (thanks entirely to reading success stories on here), I decided to start a one month trial of gluten free eating. I didn't entirely expect success (at all, let alone soon), but I wanted to at least try given my current misery and my distaste for continuing all these meds. On Day 2, I stopped having blood in my stool. By Saturday (day 4) I was down from 13bms a day to 4!!! Urgency is still an issue, but since Sat I have felt great until later in the afternoons. I may be jumping the gun but I've even resumed my morning walks as of yesterday without being scared of an accident!! I am over the moon. And obviously contributing it to the gluten free eating--hoping to start tapering the Prednisone when I see the dr Thursday if my success continues-and stop the talk of Remicade and Imuran. I'm sure he'll have some reason why I'm all of a sudden doing better besides the diet. Can't wait to hear what he comes up with :)
Posted 6/4/2012 7:33 PM (GMT 0)
What foods exactly did you stop consuming that contained gluten?

q
Posted 6/4/2012 7:44 PM (GMT 0)
LOL, Jane sorry to burst your bubble.

Tell me about the diet when you're off ALL medication. When I was on prednisone, I could eat the cardboard box of a pizza and not flare.

If, when you're off medication completely and on diet alone and NOT flaring then you're winning.

One of the best success story we have here with diet is Insofla and she uses losts of supplements plus diet plus LDN and that didn't happen on day 2...probably on year 2. lol
Posted 6/4/2012 7:49 PM (GMT 0)
It doesn't burst my bubble at all-don't you worry :)

I've been taking the Prednisone eating what I want for 9 weeks now with no relief, so I'm still calling it a temporary success. I'm absolutely not completely better but I'm not tied to a toilet all day either, so I'm still happy!

quincy-everything! All breads, snacks that have it processed in. Basically just been making everything from scratch. It's not a huge stretch since I cook most meals anyways. I guess Breads and flour was the biggest thing to go.
Posted 6/4/2012 7:54 PM (GMT 0)
It could a success...I just don't like to mesure stuff while on powerful meds such as predinsone.
Posted 6/4/2012 8:02 PM (GMT 0)
I'll update after I taper, but I didn't get even the slightest relief since starting prednsone (as I have immediately in the past). Something has definitely changed in the past few days. All I know is I am starting to get better all of a sudden and it happens to coincide with getting rid of gluten :) Hopefully I'll be able to update when I am successful without pred as well
Posted 6/4/2012 8:02 PM (GMT 0)
Congratulations on your success. I also responded quickly to gluten-free, bleeding stopped in just a few days. However in my case I had to do addition diet modification to eliminate other symptoms including D, urgency, etc. It would be wonderful if yours was only related to gluten and I wish you the best. It really gives you a sense of control when something you can do makes a difference doesn't it?

Best wishes on your future progress. No matter what anyone says, including your doctor, you know what you know and have gotten improvement. There are other doctors out there if he dismisses your improvement and pushes you for drugs you don't want.
Posted 6/4/2012 8:14 PM (GMT 0)
Thank you. I see from your sig what diets you do. After gluten free did you cut things slowly? If I don't continue to see progress after a month or so I was thinking dairy should be the next to go (although I hate to see that happen!). Also what did you do to cut out urgency? I've got an alternative doctor lined up if I need to go to someone less dismissive than a mainstream md, but I want to stay on good terms with him in case I need him in the future (which I know I will, sadly).
Posted 6/4/2012 9:00 PM (GMT 0)
I think doctors often take a narrow view of UC, as a specific autoimmune disease with clear histological signs. As patients, our view of UC is every single discomfort and symptom we experience. It is my opinion that many symptoms including diarrhea, gas, bloating, are in part secondary to UC. The inflammation form UC does/can cause some of this directly. But, I think many folks get IBS secondary to UC, or show sensitivity to gluten and/or dairy that normally would not bother them. It think UC causes bleeding, and I think some of the gas and urgency comes form the blood.

The point being that patients and doctors are often talking about two different things when they say that diet does/does-not affect UC. ... not to mention the "cure UC" versus "manage UC" distinction. I have never heard of GI that did not recommend low fiber low residue during an active flair - and that is a diet modification. So, I never know what to think when someone reports their Gi said "diet has absolutely to do with UC". I always wonder if they were talking about the same thing, if the patient asked if there were nonetheless some food choices or supplements that might mitigate UC symptoms (e.g., decrease diarrhea, reduce gas, improve leaky gut ... ).

I readily accept that some docs don't think that anything could have changed since they went to med school, and can be behind on the latest information on IBD, and I have met lots of arrogant doctors who do not listen closely; but I always struggle to accept that there are GI's as stupid and insensitive as many folks here report.


... still, it pleases me to read of your rapid improvement!
Posted 6/4/2012 9:06 PM (GMT 0)
So absolutely no improvement on 60 pred? Not even from 20 to 13. That does sound like a possible connection to the gluten given the timing, but pred stopped working as quick for me too, but did kick in at some point though never as good as before. Have you been on 60 for seven weeks? you should start taper soon, right?
Posted 6/4/2012 9:37 PM (GMT 0)
allswell: started on 40 for 7 weeks bumped to 60 on 5/24 following colonoscopy. No improvement whatsoever. Hoping to start tapering after my appt Thurs.

DB: At this recent colonoscopy my gi was expecting to find that this flare was IBS related and not UC because of the meds I had been on for 7 weeks already. I am self admittedly woefully undereducated on UC as it seems to vary so much person to person and even from one flare to the next, but i take a list of questions to the doctor and then google his answers for a little cross reference. I have never been told by dr to limit fiber or anything else. I think I even repeated my question when he said nothing in diet could possibly help to relieve symptoms because it seems like the first thing someone with gi issues could do. I asked specifically about dairy because that is a common problem food for normal people and he insisted nothing I eat or don't eat is the problem. He said the same thing in reference to probiotics, and I didn't bother asking about other supplements. He surely knows more than I do on UC but I'm struggling to accept his medical degree as more than someone who can write prescriptions when I need them.
Posted 6/4/2012 10:06 PM (GMT 0)
After gluten free did you cut things slowly? If I don't continue to see progress after a month or so I was thinking dairy should be the next to go (although I hate to see that happen!). Also what did you do to cut out urgency?

I was so thrilled to see actual improvement due to gluten-free that I went back to SCDiet once again (tried it several years earlier and failed-had to re-buy the book too lol). Yes removing dairy was very important for me, in fact although SCD allows SCD yogurt my colon did not agree with that. In fact my colon did not agree with several foods that are allowed on SCD namely fruit and fruit juices which caused D and that ramped up urgency.

Urgency took a long time to conquer and was a slow gradual improvement. I feel the mesalamine enemas made a positive improvement with that and much later I tried Canasa suppositories and like them a lot.

From what I've read on this forum people have different food sensitivities and you should keep a food journal to keep track of what you eat each day and try to draw some conclusions. Sometimes you go 2 steps forward and 1 step back, it's just not a straight line.

The best thing about diet mod. for me is that I could see improvement that I never got with any of the meds I took. And I know that when I see negative symptoms all I have to do is correct my diet back to the known "good" foods and presto symptoms go away. I haven't had any blood in over a year and D has also been gone for probably that long. I did have to wrestle with C for a while but figured out that I was intaking too much insoluble fiber (I cut back on nuts), I lowered that and C disappeared.

I describe my diet now as Paleo-SCD, meaning eating mostly meat and seafood as proteins and non-starchy veggies. My gut now allows me to have dairy (yay) but caffeine not so much so chocolate is for special occasions.

I know that not everyone responds to diet mod. but I'm grateful it finally worked for me. Really, really grateful.

I never switched doctors even though mine is a non-believer in diet helping UC. I "use" her for blood tests and Rx that I continue to take and recently had an updated c-scope which showed my inflammation is greatly reduced. My semi-annual appt is Wednesday but I have no questions or need for it, just a requirement from her. The truth is that medicine and doctors have done very little for me and if I had to go med-free I would not be afraid at this point.

Good luck with your new beginning.
Posted 6/4/2012 10:20 PM (GMT 0)
Great to hear about your drastic improvement. Out of curiousity, did your dr test you for celiacs?
Posted 6/4/2012 10:37 PM (GMT 0)
jane, i am so happy you have noticed improvement! i hope it stays when you get off the prednisone, too.
Posted 6/4/2012 10:38 PM (GMT 0)
Congratulations! Your success story again shows the value of the forum. Not everyone is affected by gluten but I believe everyone with gastro symptoms, whether diagnosed as Crohn's, UC, IBS, or anything else, should be advised to eat gluten-free for at least 3-4 weeks. That could save much aggravation and unnecessary medication for many of us. Formal tests for gluten are worthless.

It is fitting that both Imagardener2 and Quincy responded to your post. Who knows how many newbies learned about diet mod by just having Ima's signature available for the past 2 years. And God knows how many people learned about the effectiveness of rectal meds because of Q. Then there is LDN championed by BeeSting and InSoFla. Neither therapy was or is especially favored by most GIs.

Luckily conventional doctors are slowly accepting the value of vitamin D and probiotics which we have been discussing on this forum for years.
Posted 6/4/2012 10:58 PM (GMT 0)
imagardener: thank you! I am so glad to feel like I have a little bit of control with diet mod. Hopefully with continued experiments (and time, and patience) I'll get the hang of this.

kloe: No test for Celiacs. Is that something common with UC? Hopefully the cutting gluten is just helping because it's tough on the digestive system and not because I have something else!

Babe: I've learned more in the last weeks reading here than anything else. I know everyone's story is different but it's good to hear about other methods than just what drs offer. I hadn't even heard of rectal meds until someone on here said ask immediately! So thankful I found a place to share in my success and give knowledge on this awful hinderence to living normally!
Posted 6/5/2012 12:10 AM (GMT 0)
My dr told me that Celiacs is slightly more common in people with UC than in the general population. It might be worth getting tested to see if cheating every once and a while is possible, especially since you've had such a dramatic improvement from cutting it out.
Posted 6/5/2012 12:21 AM (GMT 0)
I agree. Definitely be careful when you taper. I've been through that.

Imagardner: when you say no fruit juices what do you mean? I drink an organic cranberry blend with no additives. I need vitamins somehow and that's the only thing besides water i think I can tolerate. Would that do you in too? What do you drink?
Posted 6/5/2012 12:58 AM (GMT 0)
Imagardner: when you say no fruit juices what do you mean? I drink an organic cranberry blend with no additives. I need vitamins somehow and that's the only thing besides water i think I can tolerate. Would that do you in too? What do you drink?

In order to get into remission I could not drink any fruit juices and cranberry juice really wreaked havoc on my gut--total D. But all juice was untolerated as well as fruit but whole fruit didn't have as strong an effect as juice. I won't try and guess what was in them that caused the problem, I just know they were not tolerated. I also tried non-caffeine herbal tea. Same thing, just revved my gut up (in a bad way). I drink Spring Water, several gallons a week.

It took almost a year of healing through diet modification before I was able to re-introduce some fruit, always skinned and low-sugar type such as Bosc pears. And fruit juice came much much later, always diluted and never acidic like orange juice or God forbid lemonade. Recently I tried fresh blueberries, not good, in that case I think it was the skin.

Meat has surprisingly high vitamin content and I eat a good amount of non-starchy veggies. I don't take vitamins.

Everyone's gut is different. You have to consult yours for answers.
Posted 6/5/2012 1:10 AM (GMT 0)
Jane, great news for you! Celiac is often mistaken and associated for IBS or inflammatory bowel diseases, and the term 'celiac' is the most severe of gluten intolerance. Sometimes even the standard blood test for celiac is not enough. My naturopath MD tells me that only 70% of people with celiac actually test positive with the standard celiac blood test. If, you are really concerned about gluten being a factor in all of this, you can order some private lab work: stool testing and saliva testing for gluten antibodies.

While you're modifying your diet, be sure to get some regular blood work done, its likely anyone who is flaring and on prednisone loses some iron, b12, calcium and especially vit. D, which are all terrific supplements for people like us.

Omega 3 fish oil and probiotics are a great way to boost the immune system as well. If you're up to it, take a look into two different diets: 1) The SCD (specific carbohydrate diet) and the Paleo diet. There are a few members who swear by these diets, despite what doctors say for treatment options. Sometimes it's better to take both the doctors advice, and your own as you become your own doctor! Good luck to you, let us know if you have any questions.

Post Edited (stereofidelic89) : 6/4/2012 8:03:28 PM (GMT-6)

Posted 6/5/2012 1:15 AM (GMT 0)
Jane,

Great news.
Won't your doctor be surprised, lol, if he accepts it as truth, but you're right he'll probably makes some sort of excuse for your results.

Prednisone did nothing for me. Before the SCD, I was going 15-20 times a day, with urgency, cramping, blood, mucous, heavy bood clots, and D.
After I did SCD, it went down to 4-5 per day, but still heavy bleeding, mucous, and blood clots.

After the 3rd day of the right type of LDN, the bleeding was dramatically reduced, and at day 7 it stopped entirely.

I have amended my diet to Paleo, and feel great.

Don't let anyone minimize your results. They are great. Diet modification is a difficult task, it involves a lot of careful thought, consideration, planning in cooking and super marketing, and socializing as well. It is not an easy task, but when you experience success at it, it's such a great win.

I am always so glad to hear successful stories.

Keep us posted.

:-)
Posted 6/5/2012 2:45 AM (GMT 0)
I went gluten-free a few years ago and it dramatically improved my life. Until now I'd been in remission for 6 years, and even though I'm having a flare at the moment, I feel like I'm bouncing back much quicker because of diet modifications. It's also helped me to eliminate corn, artificial flavors/colors, yeast, tomatoes, sugar, caffeine and alcohol. I totally disagree when doctors say diet has nothing to do with recovery from UC. If you know your body responds badly to certain foods, it's worth cutting that food out for a while to see if symptoms improve. Especially when it comes to gluten, there are a ton of gluten-free products on the market these days so you can basically still have breads, pastries, and other starchy treats.
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