New Collogenous Patient

[Sheila]

Hello Regina,
I'm so sorry you've been diagnosed with collagenous colitis. My mother developed it in her 80's and I was diagnosed with it when I was 69. Mom and I both had Enterolab tests and both showed a high reactivity to gluten. My mother was diagnosed in about 2000 and neither one of us knew much about celiac disease or a gluten free diet. Her doctor, who is also my doctor, told her diet was not important and he prescribed Entocort. Initially, the Entocort substantially slowed her WD. However, it soon returned and she developed a very itchy and painful rash over most of her body. When I did the Enterolab test, I also had the genetic test done. I have a celiac gene and a gluten intolerance gene. I showed the results to my doctor and he was quite surprised. My mother and I both tested negative on the celiac blood test. I inherited my genes from my mother and my children are also at risk for collagenous colitis and celiac disease. My doctor prescribed Entocort and I stopped eating gluten immediately. It is now 3+ years later and I am well. I have no diarrhea, rash, fatigue, gas and rumbling, etc.
The celiac blood test is notoriously unreliable. My doctor is now recommending a gluten free diet for his patients with microscopic colitis (collagenous and lymphocytic).
Those of us with this disease care very much about one another and try hard to be supportive. Collagenous colitis is an uncommon disease and doctors simply do not understand how important diet is in controlling symptoms.
Please give the gluten free diet a chance to work. My mother was sick for the remainder of her life because of collagenous colitis and her unwillingness to stop eating gluten.

Best wishes,
Sheila W

[lsedels]

Hello Regina,
I'm so sorry you've been diagnosed with collagenous colitis. My mother developed it in her 80's and I was diagnosed with it when I was 69. Mom and I both had Enterolab tests and both showed a high reactivity to gluten. My mother was diagnosed in about 2000 and neither one of us knew much about celiac disease or a gluten free diet. Her doctor, who is also my doctor, told her diet was not important and he prescribed Entocort. Initially, the Entocort substantially slowed her WD. However, it soon returned and she developed a very itchy and painful rash over most of her body. When I did the Enterolab test, I also had the genetic test done. I have a celiac gene and a gluten intolerance gene. I showed the results to my doctor and he was quite surprised. My mother and I both tested negative on the celiac blood test. I inherited my genes from my mother and my children are also at risk for collagenous colitis and celiac disease. My doctor prescribed Entocort and I stopped eating gluten immediately. It is now 3+ years later and I am well. I have no diarrhea, rash, fatigue, gas and rumbling, etc.
The celiac blood test is notoriously unreliable. My doctor is now recommending a gluten free diet for his patients with microscopic colitis (collagenous and lymphocytic).
Those of us with this disease care very much about one another and try hard to be supportive. Collagenous colitis is an uncommon disease and doctors simply do not understand how important diet is in controlling symptoms.
Please give the gluten free diet a chance to work. My mother was sick for the remainder of her life because of collagenous colitis and her unwillingness to stop eating gluten.

Best wishes,
Sheila W

[JLH]

It may seem crazy that the Potty People know more than the GI specialists but thanks to Tex, Dr. Polly and the members of this forum, we do. Almost 2,000 people with CC and LC (and others) have been to this site. The experts are here. We have experienced remission or been helped with our disease by diet alone, diet and meds, or rarely meds alone.

Your doctor deserves this flag because he does not know what he is talking about at all. Have Larry read you Tex's tag line. BELIEVE IT because it is true. I have been here six years and have seen many people improve and some go into remission from following the advice given here. Look at the reviews of Tex's book on Amazon, read Dr. Polly's Ta Daaa post. There is overwhelming evidence that gluten must be the first thing to go.

http://www.perskyfarms.com/phpBB2/viewt ... light=daaa

[JLH]

PostPosted: Thu Sep 03, 2009 6:55 am Post subject: Reply with quote Edit/Delete this post


She is the same woman GI that gave me so much grief about ordering the EnteroLab tests but then later on said I could be her test patient.

Yes, I gave her Camryn's Mommy's post and some other info including Dr. Liu (pediatric gastroenterologist) talking about EL genetic testing. She asked to make copies for herself but I told her the info was for her.

She was going to call one of her patients who wasn't being helped by meds and tell him/her to try going GF (soy and dairy if just gluten didn't help). I can't wait to see if he/she had improvement. Sadly, the patient sounded like an older person who couldn't use the internet.

She is the very same doctor I hugged because she was actually open and listening to me instead of rolling her eyes and saying diet has nothing to do with MC.

[JLH]

http://www.perskyfarms.com/phpBB2/viewt ... ght=camryn

[Gabes-Apg]

Regina
I am part of the forum that Larry has come to get information about MC. I am one of the 1900 registered users of this forum, I am 44, I was diagnosed with MC aged 40. MC does not discriminate, amongst this group there are toddlers, teenagers, young adults, adults, middle aged and older people, from various countries over the world (I am in Australia)
One of the reasons people search online, find this site, and join, no matter what country you come from, the medical system is not up to speed with some of the realities of MC, and the medications are not working well enough.

Amongst this group there would be 3/4 of the people here that tested negative to the blood test for celiac, Yet, based on the discussions here, and at the encouragement of many, they went Gluten free and in a high number I would estimate a minimum of 90%, they improved. Some had drastic improvement within weeks! The results of 1500+ people is not a coincidence.

right now, the decision you make about whether to make dietary changes is important, your wellness, your ability to cope has impact on others.
Living with MC is hard enough for some, it is way harder for carers.

I have maintained a strict Gluten Free, Dairy Free, Yeast Free, Soy Free eating plan for near 5 years. I have eaten the same 6 vegetables this whole time - why? because life without Diarrhea, poop accidents, pain, fatigue makes the effort worth it! Not just for me but for family and friends.

not just for your wellness, but for Larry as well, please reconsider.

take care
Gabes

[tex]

Hi Regina,

My mother's symptoms began when she was still in her 70s. None of her doctors had the foggiest idea what was causing her uncontrollable diarrhea. And back in those days, neither did I. I had never heard of gluten sensitivity or microscopic colitis. Over the years she had to be hospitalized a time or 2, because of dehydration and potassium deficiency, and she would never leave the house (except to go to the Emergency Room), because of the uncontrollable diarrhea. Sad to say, she lived the rest of her life in misery, with none of her doctors (nor anyone else) ever figuring out the cause of her problem — gluten sensitivity. I have no doubt that this was her problem, because like Shelia, I ordered tests from EnteroLab, and they found that I also have a celiac gene, and a gluten sensitivity gene,.

When my symptoms began, my doctors couldn't figure out what was wrong with me, either, and when I asked my GI doc what I should eat, his reply was, "Anything you want to eat". I never went back.

I couldn't work, and I couldn't sleep at night because my gut was so bloated, and I hurt all over, and when I strayed too far from the bathroom, there was always the threat of an "accident". So I started researching, to try to figure out what was causing my problems. Back then, I had never heard of EnteroLab, so I had to figure out my food sensitivities the hard way, and it took me over 2 years to figure it out, but at least I figured it out, and got my life back.

Before I changed my diet, I had arthritis pain so bad that on some days, I had to use 2 canes, just to be able to walk around. After I figured out all of the foods that were causing me to react, and I removed them from my diet, my gut healed and my symptoms went away, and I don't remember where I put those canes, because I have never needed them since then. That was 10 years ago. Today I'm in good health, I'm enjoying life, and I'm devoting most of my free time to trying to help others who face the same challenges that I faced about 15 years ago. If I had followed my doctor's advice, I would never have lasted this long. That's for sure.

It's not easy to face the facts and admit that our doctors are wrong, but unless we do that, we cannot get our life back. It's that simple. Before I figured out that gluten was my main problem, I lived several years with the disease dominating my daily life, and it was the most miserable experience that I could have ever imagined in my worst nightmare. I never want to have to live like that again. Ever!

And no one else should have to live that way, either. That's why I'm here, and that's why everyone else is here, also. I truly hope that you don't want to live that way, either. I hope that instead, you want to make the rest of your life as enjoyable as possible, and not spend most of it in the bathroom. Medications can control the symptoms for a while, but collagenous colitis is caused by inflammation in our intestines, and the only way to stop the inflammation from being regenerated every time we eat another meal, is to stop eating the foods that are causing the inflammation.

The rest of your life begins tomorrow morning. It will be a brand new day, and it can be the first day of your recovery, if you want it to be. New members are regularly joining, but most of us here have either already recovered, or we are in the process of healing. We will be here to help in any way we can, if you will allow us to help.

Regina, the bottom line is, you have a choice, and how you live the rest of your life is entirely up to you. No one else can make the choice for you. You can believe your doctors, and allow collagenous colitis to continue to control your life, and rob you of your dignity and your ability to enjoy your golden years, or you can take charge of your healthcare yourself, and get serious about your diet, and you can get your life back.

How do I know? I wrote the book on microscopic colitis, if that means anything to you.

Tex

[JFR]

Regina,

I hope you can hear and believe what people are saying to you here. Two years ago I could barely leave the bathroom and was afraid to leave the house. I found this website. I cut out gluten, dairy, soy and eggs from my diet. My diarrhea stopped. I could leave the house again. I had the Enterolab testing done which just confirmed what I had already found out. I paid for it out of pocket but it was worth it to me even though I don't have a lot of spare cash. There were foods that were causing my symptoms and to stop the symptoms I had to stop eating those foods. It is hard to change the way we eat but it can be done. Plain meats, well cooked veggies and some nut butters, and coconut oil. Those were and continue to be my staples. After a while you get used to eating that way and the freedom from living in or near a bathroom makes it all worth it. Doctors don't know everything about everything. Sometimes they are wrong. When it comes to MC most doctors are wrong. Diet has everything to do with it and only by changing your diet to eliminate gluten, at the very least, and perhaps dairy, soy and eggs as well, can you hope to get better. I hate to hear how you are suffering. It is hard on Larry too who is trying to do his best for you. Change is possible. You can do it if you want it.

Jean

[nerdhume]

Regina,
Doctors cannot make money from prescribing GF diets. Also, they know many people will just refuse to stay on a restricted diet. This is so common on the group that we have high praise when occasionally a dr will 'get it'. When I asked my own GI about GF diet he said "some of my patients feel better on a GF or low carb diet". When I went back 2 months later off Uceris and in remission he said "if the diet is working that well for you go ahead and continue".
As others have said 'why will people take the most powerful drugs with the chance of awful side effects, yet refuse to change their diet?'
Please consider the GF & DF diet, it may save you from years of suffering & perhaps surgeries.

[dfpowell]

Regina,

The doctors you have seen have most likely never had MC nor have they taken care of someone who has had MC, so they have not needed, on a personal level, to learn how best to manage MC. Do you believe the doctors advice or those of us who have lived daily with the disease and have found that only with diet changes, and sometimes medication are we able to get our symptoms under better control. Sometimes medications can cause MC and by getting rid of the medication it will relieve the symptoms. In a previous post by Tex to Larry, he mentioned the medications that can cause MC, perhaps you can look over that information and see if you can make some changes.

My mother-in-law, who was 87 when diagnosed with MC, had many accidents especially at night, it was hard on everyone getting up in the middle of the night and especially embarrassing for her. None of us were aware of the impact diet and her medications were having on her and at that time not much was known about MC. MC definitely controlled her life and eventually her colon shut down and prolapsed. After I saw what she went through I am very motivated to do everything within my control to manage the disease, and diet and the medication we take are within our control.

I hope you reconsider what you can do to manage MC and make the necessary diet changes and take a look at how your medications may be contributing to your MC symptoms. It can take time to see results, sometimes weeks or months.

Good luck!

[nerdhume]

My GI said accidents at night were a tell tale symptom of MC. It was my biggest complaint during the 6 months of WD I went thru before dx. I didn't mind so much during the day, but the middle of the night was very embarrassing.

My mother-in-law, who was 87 when diagnosed with MC, had many accidents especially at night, it was hard on everyone getting up in the middle of the night and especially embarrassing for her. None of us were aware of the impact diet and her medications were having on her and at that time not much was known about MC. MC definitely controlled her life and eventually her colon shut down and prolapsed. After I saw what she went through I am very motivated to do everything within my control to manage the disease, and diet and the medication we take are within our control.

I also discussed this with a friend and she said her mom died of what they called IBS because she wouldn't alter her diet and just basically starved to death, couldn't control the weight loss.

[lsedels]

Thank you to everyone who replied. I printed out all your responses and my Mom will be reading them hopefully this afternoon. Thanks again!

[lsedels]

Just in the way of followup, I took my Mom to see the gastro this morning for followup after 3 weeks on Uceris.

Now please ... don't jump all over me ... it is what it is ... and I don't think anyone should be surprised by this, but

1. He told us that his intent is to have her on the Uceris at full dosage (9mg) for at least 3 months total, after which he said he plans to titer down the dosage very very slowly because he believes that is the best way to avoid a relapse (although he did acknowledge that relapses are very common). The implication is that she will be on Uceris for a long time. He did say that perhaps she will even be lucky enough to not relapse.

2. He suggested that the cause is probably auto-immune, but told her she can eat anything she wants and that she doesn't need to wear diapers anymore ... at least as long as she's on Uceris which appears to be working. He was not very positive in Gluten elimination. He also said she could probably return to Florida and be on her own because he felt she will be ok being alone at 91.

3. I mentioned the Enterolab to him. At first he listened intently, and even though I told him that there is a large group of people who swear by the Enterolab test and concept and that it was the only thing that enabled them to eliminate the D, he eventually said that if Dr. Fine had this peer-reviewed, he might be more inclined to endorse an investment in it.

So that's where we are right now. Next Monday, I have an appt set up for her with a gastro affiliated with Mount Sinai in NYC so we will see what he has to say. And I am still working on her to go through with the Enterolab test ... I have a sense that she will eventually agree to do it (although the fact that they cannot ship the test directly to NY also arouses some suspicion) in spite of what the doctors say about it. To me, the more information she has and the sooner she has it, the better her ability to act on it in case she does relapse.

Thanks to all for your help once again.

[JLH]

Not surprised at all.

I pray the Uceris will keep on working for her.

[UkuleleLady]

Sounds like how most gastro appointments go. I don't know why they are so afraid of gluten free diets. Like we are going to starve without that poison. GF is easy and with a 15-20% comorbidity rate of MC and celiac, it doesn't seem such a stretch. If he had the disease he'd be gluten free, I guarantee it.

Sorry to rant Larry, but it makes me crazy. It's negligent and the patients suffer. I can understand their issues with Dr. Fine's going rogue, but they also ignore the work of doctors Marsh and Fasano who are leading gastroenterologists.


http://www.healthnowmedical.com/blog/20 ... diagnosis/

http://www.healthnowmedical.com/blog/20 ... y-useless/