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RissaRoo

Lymphocytic Colitis

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I used to post frequently but my computer crashed, so I had to start over with a new 'name'. I used to be Anerissara. Anyway, I have been seeing a good GI doc and biopsies show that i have Lymphocytic (sp?) Colitis. She says this frequently goes along with people who have Celiac's. Anyone else have it? Anyone have any sort of success in getting rid of it? If I am totally, completely gluten free I still have diarrhea. If I have a speck of gluten, I have to camp out in the bathroom for a week and also have miserable bloating, cramps and pain. On a 'good' day it's just diarrhea once a day...and that's on medication for the colitis! The only thing I've found that helps is taking Pepto pills, 8 a day. I'm not so sure I want to go through life downing that much pepto every day!

Could this be another allergy? Does anyone know if this sort of colitis can be caused by an intolerance to something other than wheat? I'm at wit's end with this. I feel like if i'd have caught the Celiac's much earlier, then maybe my gut wouldn't be so messed up now.


RissaRoo...used to be Anerissara before my computer crashed ;o)

gluten-free since 2004

DH, eczema, dairy intolerance and lymphocytic colitis

Son has it too, plus GERD and an allergy to dairy and soy :o(

"And now these three remain: Faith, Hope and Love. But the greatest of these is LOVE"

....1 Corinthians 13:13

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Wow that sounds horrible and I am so sorry to hear what you have been going through. What age were you diagnosed with Celiac?

I really don't know much about colitis I have only heard about it by researching celiac, and I read they do go hand in hand.

What is the prognosis for Colitis and Treatment?

If you are completely gluten free and still have diarrhea then there must be something else triggering it, possibly another food allergy, are you still consuming dairy and soy?

Good Luck


Gluten Free since Apr 14-08

Mar 08.....Blood work-Positive for Celiac Results were High (92)

Apr 08....Biopsy Results indicating abnormalities associated with celiac disease & Villi atrophy.

May-08.... Appendicitis

July 08.....X-ray indicates Degenerative Disc Disease

Symptoms that the gluten free diet has helped: All Stomach Problems, Bloating, Vomiting, Heartburn & D, Energy, overall feeling of health again, Migraine, Degenerative disc Disease, and Infertility.

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The prognosis is not that great, it's not going to kill me but I will probably be dealing with it the rest of my life. You can take stronger meds than I'm on...steroids and immune suppresent drugs...but I would rather deal with diarrhea than with the side effects of those! I was dx'd about 4 years ago, but have probably had it for closer to 16 years, since my early teen years. You're right about the dairy and soy...I hate taking that out of my diet but I probably should. I eat very little of both, though...my son's allergic so we don't have a lot around, and I know for sure that dairy bothers me if I eat more than a little of it.


RissaRoo...used to be Anerissara before my computer crashed ;o)

gluten-free since 2004

DH, eczema, dairy intolerance and lymphocytic colitis

Son has it too, plus GERD and an allergy to dairy and soy :o(

"And now these three remain: Faith, Hope and Love. But the greatest of these is LOVE"

....1 Corinthians 13:13

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http://www.denvernaturopathic.com/news/celiac.html

I am one of the people for whom candidiasis and celiac are the same disease.

Candida albicans is a fungus which displays the same protein chain on its surface as the immune-critical portion of gliadin.

In the gut candida thrives in the presence of sugar. It presents with inflamation and diarrhea. Candida has a dormant state which allows it to survive oxidants (chlorine and dyes) which kill off competing beneficial bacteria. Candida sends out spikes which are capable of exploiting the channels associated with celiac "leaky gut" syndrome.

If you have candidiasis, the solution is to stop ingesting sweets (including fruit), chlorine and dyes, and to start ingesting a probiotic like plain live yogurt. As with celiac disease, the best method for determining whether or not you have candidiasis is to go on the diet and see if it works. If it works, then stay on the diet.

You'll need to add vitamin C and B complex.

Edit: You should also look into the possibility that nightshades are contributing. Nightshades include all peppers, tomatoes, eggplant, and potatoes.

..

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Does Pepto help for you? I have an unopened Colitis stool test I need to DO and SEND IN that has been sitting in my bathroom for over a month. Uh, I have the chronic 'd' too and I can't take any over the counter remedies, none will touch it, I do however eat psyllium caps everyday and it's the only thing that works for me. It's a godsend. If I didn't eat them I wouldn't be able to leave my apartment! (makes for interesting dating... NOT!) :huh: Anyways I have 'Yerba Prima' picked up a bottle at the health food store. Maybe give that a try?

I have systemic candida too with a side of leaky gut

I quit nightshades and soy lecithin about a week ago and I am noticing some improvement.

Good luck!!! B)


Collette

Positive Bloodwork Oct 1st 2007. Gluten-free 3 YEARS Oct 1st!

Dairy & Soy free since Dec 1st 2007.

Potato free since January 3rd 2008.

Remaining Nightshades since April 1st 2008. Back on September 2010. :)

Developed Rice & Tapioca & Corn Intolerances...

NO Carageenan.

In a constant state of evolution... sending love! :)

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I was thinking about looking for something like that. It honestly doesn't bother me too much to not eat, there are times when the colitis is bad when I just fast until I feel better. Usually if I stay away from dairy and of course from gluten I feel OK, but I have wondered if just giving my system a complete break might be a good idea. Thanks for the name of the Tolerex, I was wondering what would be a good supplemental meal and Ensure makes me sick. I'll go look it up now!


RissaRoo...used to be Anerissara before my computer crashed ;o)

gluten-free since 2004

DH, eczema, dairy intolerance and lymphocytic colitis

Son has it too, plus GERD and an allergy to dairy and soy :o(

"And now these three remain: Faith, Hope and Love. But the greatest of these is LOVE"

....1 Corinthians 13:13

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Hi;

I have Crohn's and Celiac;

I just read about your condition and it sounds pretty similar to Crohn's. Not as Serious I think? I absolutely avoid Honey the allergist said there are no allergy test for honey but if I eat it I get severe nausea and abdominal pain. You might want to read up on the side effects of some of the medications that your Doctor might perscribe. I have treid Asacol in the past and it worked for me. Then I deceided to just eat rice and chicken nothing else, then I reintroduced a few foods I stayed away from sugar, lettuce, all fruits, Dairy for a few months. Eating out was a disaster. I had the D for years I had to go to the bathroom about 30 times a day. Luckily most of it was in the morning so by the end of the day I was o.k..

I usesd to have very little symptoms until about 5 years ago when the G.I doctor put me on 1 week of steroids. Everything cleared up. I did gain 20 pounds that was a bummer, I was strugeling with weight issues.

I now add Turmeric, Cumin, Cardemom, corriander and sometimes curry to my diet. They are natural Gut healers.

I stay away from any kind of vitamin or suplament as that worcens the abdominal pain that I still have. It is sometimes tolerable to drink Citrocel ( I will spell it phonetically sitrosel) because I worry that I get that lame advertisement thing again. There are others on the Forum with Crohn's. They may have advise. I do sometimes worry about the intestines getting blocked so I wear a bracelet that inscribes all my diseases incase I am hospitalized and can not speak for myself. I keep a calander next to the WC where I make sure that I can keep track of how many times I went to the bathroom. I have improved a lot on the gluten-free diet even though I keep glutening myself accidently. I avoid dairy but Yogurt was good for me ( plain) before I went Dairy free, I never eat Apples and I stay away from apple juice. I recently stopped Soy and that helped a lot. Most gluten-free items in the store are contaminated with Nuts ( Allergic) and have Honey in them , so that means I eat simple foods. Rice, Vegies and meat. The best meat for me is Turkey. I never use any artificial sweetner.

I do carry panty liners with me and you know that you can get a special pass so that if you are in a public restroom and there is a long line you can show your card ( stating Due to a medical condition I have to go now it is a Handicap I do not have this card but I know you can get one) I think your Dr. knows where to get one or The Crohn's and Colitus Foundation of America.

best Wishes :D


gluten-free/CF 5/8/08

Multiple food Allergies

Chemicle Sensitivity Syndrom

I suposedly have IBS

Psilly page member

Crohns

Celiac (duh)

"My llamas are in me head... "

-Llama`Llady

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I used to post frequently but my computer crashed, so I had to start over with a new 'name'. I used to be Anerissara. Anyway, I have been seeing a good GI doc and biopsies show that i have Lymphocytic (sp?) Colitis. She says this frequently goes along with people who have Celiac's. Anyone else have it? Anyone have any sort of success in getting rid of it? If I am totally, completely gluten free I still have diarrhea. If I have a speck of gluten, I have to camp out in the bathroom for a week and also have miserable bloating, cramps and pain. On a 'good' day it's just diarrhea once a day...and that's on medication for the colitis! The only thing I've found that helps is taking Pepto pills, 8 a day. I'm not so sure I want to go through life downing that much pepto every day!

Could this be another allergy? Does anyone know if this sort of colitis can be caused by an intolerance to something other than wheat? I'm at wit's end with this. I feel like if i'd have caught the Celiac's much earlier, then maybe my gut wouldn't be so messed up now.

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Hi...I found this forum when I received mail from Digestive Health Smart Brief this evening and the link was given....so I joined when I read the post about Leucocytic Colitis....I am also a member of the Microscopic Colitis Forum....this forum includes those with LC and Mucosal Colitis....the addy is www.perskyfarms.com this is the address of the business of one of the administrators and there is a link to the forum. Many of the members have been tested for celiac and gotten negative results so many then are tested at Entero Labs and learn they have one gene for celiac (or both) & are encouraged to go gluten-free. There are varying degrees of intestinal damage from the gluten that show up on the tests. I have been taking a steroid called Entocort which is a very effective med without the terrible side effects of prednisone....often after enough healing has taken place, the dose can be reduced or some can go off it all the way. I am doing well now on one per day and will start reducing that and see how I do....the major symptom of LC is extreme diarrhea up to 20 or more times a day....I have been learning all I can about gluten free living and glad I found this site...I am also diabetic and noticed the discussion about diabetes. RissaRou, if I can encourage you in any way, let me know...LC is a very tough diagnoses to get and the road to recovery is difficult. I'm so glad you have this forum to help. anyway, when I read your post as a guest, I just had to join so I could tell you that yes, there are others out there who are dealing with LC also.....and to hang in there.

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I have collagenous colitis which is in the same family as lymphocytic colitis. It can definitely be frustrating at times. Unfortunately, there is no known cure and it does run and up and down course. You may have months with no symptoms and sometimes things can be rough. A good gastroenterologist, as you said you have, who you can talk with on a regular basis really helps. Avoiding NSAIDs is important.

Foodwise, avoiding dairy and caffeine (and gluten of course) can help. Some people avoid spicy foods and fatty foods as well. I have some success with the specific carbohydrate diet, although it can be difficult to stay on.

As for medications, peptobismol 8 per day is the first thing to try. If that doesn't work for you, there are several other things that can be tried. Asacol works somewhat for me, although it doesn't for others. Sometimes short courses of steroids are necessary. I've had a few flare-ups where I've had D up to 20 times per day and where I'm not getting much sleep. Although steroids are best avoided, they can make life tolerable. As a previous poster mentioned, entocort is a form of steroids which have much fewer side effects.

With time, you'll find ways to minimize symptoms and to manage. I'm an avid skier, hiker and rockclimber and my friends joke about the rolls of TP and babywipes in my backpack.

PM me if you have questions.

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I've just been diagnosted with lymphocytic Colitis just yesterday, I've been put on Asacol. 800mg 2x's a day. I was diagnosed by colonospy and biopsies. They also did some blood work, My SRP (infmattion Index) was 3.36 ( supposed to be <.8) and Sediment was 45 (supposed to be less than 20). The nurse who was telling me that this is very inflammed!

I'm looking forward to getting rid of the D, I find it so frustrating that I do so much with gluten-free and i STILL have problems. I see my Gastro NP next thursday, hope to find out more.

Ironically, I went to my Gastro told her about my celiac, wanted to look at my small intestine, but when she saw my blood work she knew I was complying and looked past celiac as the problems.

anyway, just sort of venting about the new diagnosis.

take care all!


Dx 3/23/07

Gluten free 3/27/07

Intolerant:

Gluten

MSG

Allergies:

Ragweed

Honeydew

Cantalope

Nickel (jewelry)

Dx'd Lymphocytic Colitis 6/16/08

I am a bad silly-yak!

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Do you take NSAIDs (non-steroidal anti-inflammatory drugs) like Advil/Ibuprofen or Aleve?

That class of drugs can trigger colitis flare ups.

You probably already know that, but I was clueless. I was taking indomethacin and then Celebrex for rare headaches and that's what triggered my microscopic colitis that gave me all the GI symptoms that led to my Celiac Diagnosis.

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I had no idea NSAIDS had anything to do with it! I used to take it alot pre Celiac diagnosis because I had headaches all the time from Gluten. That was 15 monthes ago they subsided, but still usally need a dose every 3 weeks or so for aches or a rare headaches.

Is Tylenol safe?


Dx 3/23/07

Gluten free 3/27/07

Intolerant:

Gluten

MSG

Allergies:

Ragweed

Honeydew

Cantalope

Nickel (jewelry)

Dx'd Lymphocytic Colitis 6/16/08

I am a bad silly-yak!

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