Gluten Intolerance and Ulcerative Colitis: from Jeremy on 2008-12-29
Another update.... Have been living No/low gluten for 20 days now. Everything is going well. ALso been Living spinach/sunflower seed diet for 4 days and things are going great.... down to two BM's today. And last one was actually formed. Let me back up.... I found this site 20 days ago and gave it a try, After 14 days, My symptoms lessoned by half on this gluten free diet. I also found another board, and alot of people on there were tryin this spinach/sunflower seed thing. I figured since neither of those interefered with the gluten free I was trying that I would try both. And I'm not tryin to Highjack this thread or Promote another site. I just am happy that all seems to be working and want to share. I will keep giving updates as I go in case some one else can be helped.
THe spinach/sunflower seed part comes in as.... When flaring you must eat one can of spinach ( about 13 oz ) a day and 4 to 7 handfulls of de-shelled sunflower seeds a day. Am not going to get all technical because its alll out of my league. It has to do with the magniesum and betocaraten in the diet. It all made some sense to me because I used to suffer with severe gout attacks and one of the natural anti inflamitory foods I had heard of was sunflower seeds. I used to eat those exclusively with cherries or cherry juice when having a gout attack. and since they both are inflamitory diseases. it made sense to try it. The spinach has to do with mag and cell to cell communication or some such, this is where I get out of my realm.
All I can say is that this added diet meshes well with the no gluten part I was already doing and it seems to be working wonders. The one thing they did say about the seeds was to make sure you chewed them up REALLY well, that way as to not irritate you colon.
Like I said I'm only on day 4 of the added, no gluten got me half way or better there, this might be what takes me the rest of the way. I will post more as time goes on.
Gluten Intolerance and Ulcerative Colitis: from on 2008-12-31
Imagine if you were allergic to poison ivy or poison oak and you rolled around in it daily for most of your life. What would your skin look like? What kind of skin would you have? Bleeding? Extreme pain?
Wheat is a grass. Many of us have allergies to grasses, all kinds of grasses.
Celiac Disease is not the same thing as an allergy to wheat.
I have UC it is actually pan colitis. This means my entire colon is, when in a "flare", inflamed. I lost 75 pounds over the course of 5 months and ended up in a hospital and was there diagnosed.
I was put on asacol 400mg 12 pills a day divided in 3 equal doses. The max allowed per day for this med.
I disliked some of the effects of asacol and eventually developed tinnitus, ringing in the ears. This is common with chemicals derived from salicylic acid like asacol and aspirin. I also thought there could be a "natural" way or a way with less side effects to control this "disease". After extensive research I figured out I was allergic to wheat.
I must point out here that when presented with the idea that this is a chronic, "life long", condition I refused to believe that and wanted to find out all I could about the condition and what I could do to get rid of it.
I have read here in previous posts that "dramatic changes in diet are dangerous" and that "it is a pain to alter ones diet". I know that people are lazy and if you do not have or can tolerate the symptoms , the pain, bloating, bleeding, associated with colitis then I guess you can afford to become complacent.
I have found out that long term exposure to any allergen and continued inflammation, even if it is minor, can lead to other conditions that may be fatal or at the very least disruptive, kind of like colitis.
I think that to eliminate the inflammation in the body, especially if it is caused by an allergen in your food, is extremely important.
I am now pill free. I have not had a flare for about a year. The last flare I had was while I was still on the medication and still eating products of wheat. I know that it is not uncommon for people to have "flare free" times of up to a year or several years. I have medicine ready if I need it.
I think it is important that everyone know that you need to take a controlling and educated roll in your health. Get facts instead of opinions about things. Everyone is different and your dietary needs are not the same as mine or anyone else.
I eat pretty much everything I used to eat minus the wheat. I eat breads and pastas and pancakes and pizzas. I have hamburgers and cookies every once in a while. All without the wheat.
and I seem to be doing fine
Gluten Intolerance and Ulcerative Colitis: from Erica Shecter on 2009-01-17
You guys might try looking into the once-a-day drug Lialda. It's FDA approved in Amierica as of 2007 or 2008 but I don't think it's out in Europe yet. if it works, it improves quality of life a lot. Also consider thorough testing for food allergies
Gluten Intolerance and Ulcerative Colitis: from Jeremy on 2009-01-23
My doctor just switched me to lialda about a week ago. So far so good. Not sure what is putting me into remission, the drugs or the gluten free or the spinach. Maybe a combo of all three. I am on day 6 of lialda, day 47 of gluten free, and day 33 of added spinach/sunflower. But I am getting better daily and loving it
Re: Gluten Intolerance and Ulcerative Colitis: from Karen Johnston on 2009-02-23
My sister has had ulcerative colitis for about 4 years now. She sticks to a gluten free diet but finds that potato starch is a real problem, including the potatoes. Dairy and chocolate seem to agrivate it too. My brother had it for not quite a couple of years before the steroids almost killed him. He lost his colon and we almost lost him. He, however, didn't want to listen to her about going gluten free and paid the ultimum price. She suffered a couple of hospital stays and bloated up like a balloon from those disgusting steroids. They are poison. They may serve their purpose temporarily but her face was blistered and swollen. She now keeps in under control. Sometimes she goes a bit astray and pays the price. It shows up in her face first. See how you go when you eat potatoes and check all ingredients when buying your groceries. I have a intolerance to rice which gives me dermititis on my face, similar to hers from potato and wheat. I too can't eat wheat as it causes great cramps but I don't have coeliacs or ulerative colitis thank god. Hope this helps
Re: Gluten Intolerance and Ulcerative Colitis: from Vinnie on 2009-04-30
Peter & Leila,
Wow...reading you posting has given me some hope. I was diagnosed with UC about 5 years ago and have been suffering the worse flare-up the past 15 months now. Three trips to the hospital more failed medications and now Remicade, which worked for 9 days and then stopped! I am going to be having a consultation with another GI doctor in NYC about a colectomy, but recently (today) started a gluten free diet. I am 100\% Italian and this will be an adjustment, the no regular bread and pasta thing, but one that I am willing to accept. Also about a week ago I started taking B-12, Omega 3 and vitamin C. Hopefully, the gluten free diet combined with these vitamins will avoid the trip to the surgeons table. Has anyone ever heard of cleansing your system with a natural herbal cleanse? I met a woman yesterday who told me that this will also help by removing toxins from my system?
Any advise you all could pass along or even gluten free food recipies would be greatly appriciated. I will post again in a week to tell everyone who things are going with the gluten free! Thanks
Re: Gluten Intolerance and Ulcerative Colitis: from aimee on 2009-07-06
Hey Vinnie I have had uc for 14 years. Also on Remicade which only worked for a few months. I am also 100\% Italian. We seem to have alot in common. I have been on a gluten free diet for approx. 22 days.Have not seen any progress yet. I sure hope to. Good Luck to you
Gluten Intolerance and Ulcerative Colitis: from Rich on 2009-09-01
I had UC for many years until I had to have my colon removed and now have a j pouch. About 2 years ago my pouch was diagnosed with moderate to severe pouchitis. I was on a course of antibiotics almost 2 weeks after I went off. Not wanting to get a bag, I went gluten and dairy free. Also, added SCD yogurt everyday. I found that I feel much better and hardly ever get irritation like I used to WHEN I stay on this program. The challenge is not eating off this program. There is a book about the SCD(specific carbohydrate diet). I found this to be too restrictive, so I just went gluten and dairy free. I also monitor how i react to foods.
I am convinced from personal experience that gluten 'sensitivity' is very real and effects physical as well as mental/emotional issues
Gluten Intolerance and Ulcerative Colitis: from Loye on 2009-09-22
Thanks to everyone who has posted in this discussion. I was diagnosed with UC about 4 months ago. Had urgency issues, and uneasy stomache for about a year and a half before I went to a GI. He did colonoscopy and said I had UC confined to the distal end, so more like proctitis. Prescribed Canasa (mesalamine) suppositories. No real improvement after 2 months. Then, he added Proctocort suppositories. Still no real improvement.
Here's the kicker. My dad has had definitely diagnosed CD for the past 25 years. This GI doctor refused to run celiac testing because I am overweight! He said if I had it, I would be a stick. I don't believe him, not with all I've read on the internet from reputable sites (Mayo Clinic, GI sites,etc.)
I have my next appointment with him in 3 months. I am going strickly gluten free until my next visit. We shall see what happens. After reading some of these messages, I have real hope that I can manage this. I have the advantage that I understand the GF diet very well, having cooked for my dad for years
Gluten Intolerance and Ulcerative Colitis: from Loye on 2009-10-11
Update: I've been gluten free for nearly a month, and what a difference. I can't say I haven't had a "bad day", but I'd say I am already 90\% there! I am using the Canasa and Proctocort, alternating days, and after another month or two more on the gluten free diet, I'll try to do without them.
I can't wait to tell this doctor in December. He'll brush it off, but I don't care. We need to be our own advocates. I wouldn't say my doctor doesn't care, I just think a majority of doctors don't care enough to look into what is working for people, even if they didn't learn it in medical school. As long as it does no harm, it's the results we're after isn't it