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NicoleAJ

Ulcerative Colitis

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So I'm a bit discouraged by the fact that most of the statements on this board about UC seem to be from those who have been diagnosed with it before the celiac diagnosis and then believe that it was a misdiagnosis (that it was celiac all along). I've been strictly gluten free for 2 1/2 years, but I was just diagnosed with UC. I had proctitis a few years ago with a good deal of rectal bleeding, but it appears that it has migrated up the colon so that I have bleeding ulcers along a good deal of the colon, along with pain, diarhhea, fatigue, loss of appetite, anemia, etc. The suppositories I used to take no longer work, and the Colozal that I now take 3x per day doesn't work either. Does anyone here know that they have both UC and celiac? Have you found a medication that has helped your UC go into remission? I'd really appreciate a response because I really don't enjoy this at all--I long for the days when all I had to do was stay gluten free and everything would be fine.


Diagnosed July 2004

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Nicole,

I don't have UC and don't have much to offer in terms of advice, but I wanted to add my voice of support. I hope that you find some answers and your health improves. Hugs to you---I know you must be frustrated. Do you have a good doctor (I hope!!!) I'll be thinking of you.

Laura

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Laura,

Thanks for the support. Unfortunately, my health has been declining steadily since Thanksgiving. I do have a great GI out in Lewistown, but he's only in the office one day a week--consequently, it takes a long time to get an appointment. I'm going back there at the end of the month, so hopefully he'll have some good news for me.

Thanks again.

Nicole


Diagnosed July 2004

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Hi Nicole -

I was originally diagnosed with ulcerative colitis before the docs realized I actually had celiac disease. I was on all of the uc meds (colazol, prednisone, etc) but never had any relief. I actually just saw a new gi doctor last week and discussed the diagnosis of uc and celiac. He said that many times, people with celiac present with symptoms of uc and are misdiagnosed. Since you've had your uc "flare" recently, have they scoped you? From what I understand, that's the only way to determine actual presence of uc.

I know it's a long shot, but is it possible that you are ingesting unknown gluten? Sometimes manufactures change their ingredients.

I totally feel for you --- I know how frustrating it is when you are sick and just can't figure out how to get better.

As a last resort, have you tried the Specific Carbohydrate Diet? Two years ago, before I was diagnosed with celiac, I tried this. It's not the most tasty diet, but whatever helps! Here's the website. http://www.breakingtheviciouscycle.info/

Feel better,

Maureen :)


Maureen in Southern New Jersey

Diagnosed via bloodwork & biopsy in June 2005

Gluten free ever since!

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Hi Maureen,

Yes, I've been scoped, and they did find all of that lovely bleeding ulcerated material along the colon--I even have the picture captures to show it. I've been really good with my diet. I never eat anything unknown, I call about everything obsessively, and I have not been out to a restaurant in a long, long time. I get sick at random times from things that have never made me sick before, and then when I have the same exact thing a few days later, it does not make me sick again. Thanks for mentioning the diet. I'll have to check it out. At this point, I need all the help I can get. Thanks again!

Nicole


Diagnosed July 2004

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I know they're using anti-TNF medications for Crohn's and I think colitis with good results. It's kind of an awful thing to take though since it suppresses your immune system. Its the sort of thing that can cause you to get REAL sick with a mild infection, but sometimes it is worth it if your autoimmune disease is very severe.

I guess before I would do an anti-TNF I'd try to tweak up the diet and see if there was anything else that might be causing problems, like the usual soy, dairy, eggs, corn, any other grains, etc.

Oh yeah, thefooddoc.com has a blog posting about this. His recommendation (and it makes sense to me) is to figure out what is causing the colitis and treat it that way, versus throwing drugs at the problem.

Here's a link to the posting about that:

http://thefooddoc.blogspot.com/2007/01/lea...ith-normal.html

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So I'm a bit discouraged by the fact that most of the statements on this board about UC seem to be from those who have been diagnosed with it before the celiac diagnosis and then believe that it was a misdiagnosis (that it was celiac all along). I've been strictly gluten free for 2 1/2 years, but I was just diagnosed with UC. I had proctitis a few years ago with a good deal of rectal bleeding, but it appears that it has migrated up the colon so that I have bleeding ulcers along a good deal of the colon, along with pain, diarhhea, fatigue, loss of appetite, anemia, etc. The suppositories I used to take no longer work, and the Colozal that I now take 3x per day doesn't work either. Does anyone here know that they have both UC and celiac? Have you found a medication that has helped your UC go into remission? I'd really appreciate a response because I really don't enjoy this at all--I long for the days when all I had to do was stay gluten free and everything would be fine.

I was put on remicade, a very expensive drug that you get VIA IV among other things (prednisone, azasan, xifaxin) and I went from being in crisis and in the hospital to being almost normal. Look into remicade. I have both UC and celiac, I also now take an anti spasmoadic to calm my stomach like pamine or symax.


Gluten Free since April '04

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I was put on remicade, a very expensive drug that you get VIA IV among other things (prednisone, azasan, xifaxin) and I went from being in crisis and in the hospital to being almost normal. Look into remicade. I have both UC and celiac, I also now take an anti spasmoadic to calm my stomach like pamine or symax.

Thanks so much for the reply. I'll definitely have to look into remicade. I'll talk to my doctor about it when I see him in a couple of weeks.


Diagnosed July 2004

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Thanks so much for the reply. I'll definitely have to look into remicade. I'll talk to my doctor about it when I see him in a couple of weeks.

Hi-I second the suggestion to look into the Specific Carbohydrate Diet (Elain Gottschall's book: _Breaking the Vicious Cycle_). I was very ill for several years with UC, and took Asacol and then Colazol, along with a variety of mesalamine and steroid suppositories. These meds only helped a little, and sometimes the side effects were worse than the positives. The UC got completely out of hand and in desperation I tried the SCD diet. It helped a lot, and from there, I tried Elaine Gottschall's suggestion of Sulfasalazine as a medication for inducing and continuing remission of UC. Read the advice she gives about Sulfa drugs-- I think it's on her website. I continue to do a modified, more livable version (not as strict) of the SCD diet, and take probiotic drinks like Yakult (or the Korean knock-offs you can usually find in your local korean grocery) and Kombucha, plus sulfasalazine. (I do not follow a completely gluten-free diet, but am looking into it.)

Gottschall notes that a lot of people have a hard time taking the drug, but that side effects can be mitigated if you taper onto the drug (and taper off if you go off) to get your body to build a tolerance to it gradually. Also, guard against taking too high a dose. My doctor tapered me onto a dose that turned out to be way too high, and it caused some very frightening temporary side effects (mental fogginess and paranoia), but when I figured out the dose my body could handle, it turned out to be the best drug I ever tried for UC and brought about remission within a few weeks. It's kept me there for about a year, on a very low dose (2 to 4 500mg pills per day). Be sure to take the sulfa with food.

BTW, I asked for sulfasalazine because I was trying to prevent stepping up to remicade or infliximab. My dr. was skeptical because sulfa drugs are quite old-school (from the 1960s) and they don't like to use them anymore. He also thought that if Asacol didn't work for me, and caused bad side effects, then sulfa would be worse. But I insisted upon trying it, and it turned out great. Later, the same doc told me that the mechanism by which sulfa works is still poorly understood-- apparently there's an antibacterial property as well as the anti-inflammatory property, and this "extra" part of the drug often gives positive results but the doctors don't really know exactly how it works.

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I was just recently (yesterday) diagnosed with celiac disease and mild colitis.

I've had intestinal issues since I was about 3 years old.

And it took this long to figure out what it was.

For years it was "all in my head" or "the Thompson stomach".

Just something I had to deal with.

Now to find out I have not one but two incurable diseases is quite disheartening.

I know it'll get easier but I'm scared and the diets for the two seem slightly contradictory.

Its confusing and daunting.

If anyone has any information concerning the two, I would greatly appreciate it.

_Alexandra

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I was just recently (yesterday) diagnosed with celiac disease and mild colitis.

I've had intestinal issues since I was about 3 years old.

And it took this long to figure out what it was.

For years it was "all in my head" or "the Thompson stomach".

Just something I had to deal with.

Now to find out I have not one but two incurable diseases is quite disheartening.

I know it'll get easier but I'm scared and the diets for the two seem slightly contradictory.

Its confusing and daunting.

If anyone has any information concerning the two, I would greatly appreciate it.

_Alexandra

Welcome to the board. Try to read as much as you can here and ask any questions you need to. At first go with whole unprocessed foods, fresh meats, chicken, rice, potatoes, veggies, fruits etc are all going to be naturally gluten free. Can't say for sure but the colitis may resolve once you have been on the diet for a while. It is hard and a bit overwhelming at first. We are here to help in any way you can.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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I was just recently (yesterday) diagnosed with celiac disease and mild colitis.

I've had intestinal issues since I was about 3 years old.

And it took this long to figure out what it was.

For years it was "all in my head" or "the Thompson stomach".

Just something I had to deal with.

Now to find out I have not one but two incurable diseases is quite disheartening.

I know it'll get easier but I'm scared and the diets for the two seem slightly contradictory.

Its confusing and daunting.

If anyone has any information concerning the two, I would greatly appreciate it.

_Alexandra

I have UC and Celiac disease. No doctor or medication has ever helped me. I bought Dr. Klien's ebook and read it cover to cover many times, did what it said and was completely better in 3 months. This meant no animal products at all, no gluten, eating only raw food, and following the Healing Diet to a T. It was extreme but about 3 months in was the first time I felt good in about 12 years. http://www.colitis-crohns.com/

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I have UC and Celiac disease. No doctor or medication has ever helped me. I bought Dr. Klien's ebook and read it cover to cover many times, did what it said and was completely better in 3 months. This meant no animal products at all, no gluten, eating only raw food, and following the Healing Diet to a T. It was extreme but about 3 months in was the first time I felt good in about 12 years. http://www.colitis-crohns.com/

Hi, I have Ulcerative Colitis and suspected celiac. I've known about Dr Klein's diet for a while but it does seem so extreme. I've tried the SCD though - which I recommend to this poster. Is this diet something you will follow ongoing now, or do you expect to be able to go back to a more varied diet? The SCD seemed strict (no grains, no lactose, low sugar) but is positively varied compared to raw vegan. Do you feel truly amazing? I have been in remission for many years - most of them on immune suppressants but now I am medication free and hope to stay that way.

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So I'm a bit discouraged by the fact that most of the statements on this board about UC seem to be from those who have been diagnosed with it before the celiac diagnosis and then believe that it was a misdiagnosis (that it was celiac all along). I've been strictly gluten free for 2 1/2 years, but I was just diagnosed with UC. I had proctitis a few years ago with a good deal of rectal bleeding, but it appears that it has migrated up the colon so that I have bleeding ulcers along a good deal of the colon, along with pain, diarhhea, fatigue, loss of appetite, anemia, etc. The suppositories I used to take no longer work, and the Colozal that I now take 3x per day doesn't work either. Does anyone here know that they have both UC and celiac? Have you found a medication that has helped your UC go into remission? I'd really appreciate a response because I really don't enjoy this at all--I long for the days when all I had to do was stay gluten free and everything would be fine.

Azathioprine worked for me for four years. It didn't stop working - I just stopped being prepared to take it because I felt well enough for long enough to try and quit such a strong drug. I recommend the Specific Carbohydrate Diet, even though I'm no longer on it. I did manage to reduce my azathioprine while on the diet.

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