I'm new at this.

Lucy · Post by **Lucy** » Sat Nov 18, 2006 8:49 pm

Hi there,

On the other hand, are you sure you WANT a diagnosis from the colonoscopy? If you get all better eating gf, they the colonoscopy could serve by looking for other "more serious" things, and avoid your getting a "label" for the insurance companies. This is something to think about.

As has been said, the tests that Dr. Fine offers will be good for several months after ingestion of gluten has stopped (or at least you THINK you've stopped it.)

If you really want to find out if you have any problems in the small bowel, you could have the doc scope it and biopsy it, but in order to find out if you have classic celiac disease, you'd have to keep eating gluten, but I doubt they'd be looking for classic celiac disease without a positive blood test.

Also, other than Promethius Lab that our doc would've had to send your blood to, with the possible acception of MayoClinic, I wouldn't give any credence at all to the other labs for the celiac blood testing. Promethius is the one that the national organization, CSA, recommends, and I think it's the ONLY one they recommend. It takes some effort on the part of your doctor to work with this lab, and not all of them have figured this out. You might want to ask him if he used Promethius to test your blood. That will tell you how much he knows about how to test for celiac disease.

Still, Dr. Fine's tests are much more sensitive than any of the blood tests. They will pick up 100 percent of biopsy proven celiac disease whereas even the best lab will miss a number of them.

Hope this will help you with your decision about your tests and diet, etc. Don't be surprised if you don't have to remove a few other foods to fully stop the diarrhea. I was fortunate that the gluten stopped all the pain and stiffness, and made a major difference in the diarrhea, but the other allergens had to be removed before all the diarrhea came to a halt, and stools worked their way up to normal.

I've been free of gluten since Thanksgiving of 2003, and that's what I'm thankful for EVERY year thereafter. The other allergens were removed within a few months of gluten. I don't have flares regardless of stress, etc., so I know it's the diet, and opted to not go the medication route at all.
Others on the diet, like Joanna, speed things up by taking meds short term while rapidly learning and applying the diet, and thus, were able to wean themselves off medication very quickly.

Best wishes to you!
Yours, Luce

Polly · Post by **Polly** » Sun Nov 19, 2006 9:37 am

PAT!

It's good to have another

!

It looks as if most of your initial questions have been answered by others, so I'll mainly just extend a big welcome. I will say that I agree with Luce and Wayne. Fatigue is the symptom that takes the longest to improve. Like Luce, I noticed every so often how much more energy I had. Around 3 years after the GF diet I had normal energy again. I also think that many of us took many years to get to the full-blown MC picture, although we didn't realize it at the time. And that the longer we are sick, the longer it takes for full healing.

So happy to meet you and looking forward to many future chats.

Love,

Polly

Pat · Post by **Pat** » Sun Nov 19, 2006 2:31 pm

Thank you all so much for your encouraging words. It is so very overwhelming. I guess I really don't know what to do next. Are you all patients of Dr. Fine? Or did you just figure all this out for yourself? I guess I need to go back and reread your posts that tell all this information. Thanks again for being here.
Pat

harvest_table · Post by **harvest_table** » Sun Nov 19, 2006 4:28 pm

Pat,

Sorry your feeling so overwhelmed...it's alot to digest. If I was in your shoes living with chronic symptoms for all these years and just recently finding out your DX's of MC (7 years ago) was in fact miss DX as IBS, well I'd be shaking my head and confused too. I'd also be angry, but that's wasted energy.

If you haven't already done so, take time and read the welcome message and information for newbies section of the board- I think it might help you. There are also many other MC related articles in the diet, medications and links forum that might shed light on a few things. Also, check out the members experiences with diets or medications.

I'm not a patient of Dr. Fine (I have not had his stool tests done) but alot of folks here have. www.finerhealth.com He's the best of the best. His stool tests would be something you could consider in order to find what your specific food sensitivities are, such as gluten, soy, yeast ect.

If I were you, I would continue a GF diet for health reasons and see if you find improvement. As was mentioned, your colonoscopy might find that you have celiac since you have apparently have been living with untreated MC all these years.

The good news is you have found a great support group of folks living with this and finding differant ways to manage it. What works for some, may not for others so it's trial and error with lot's of patience. I did the medication/diet route because my symptoms were bad enough and I felt I needed immediate relief. Now I'm living symptoms free by diet alone.

Hang in there!

Love,
Joanna

harvest_table · Post by **harvest_table** » Mon Nov 20, 2006 1:00 am

Hi Pat,

Sorry to confuse you anymore but want to mention that you should have an upper GI- endoscopy for detection of Celiac.

Joanna

Pat · Post by **Pat** » Fri Jan 05, 2007 10:04 am

I had my colonoscopy and it showed that I still have MC. I also had a polyp but it was just from the inflammation. She started me on Entocort and I am still on the gf diet. I have been reading the posts by Beth and following her threads. I wasn't brave enough to ask for the prednisone first. I wasn't having pain just the daily d. I guess I am seeing a little improvement. I go just once a day now but it is still very loose. Oh, yes! I did start on the Mannatech products. And even before the Entocort I noticed some differences, not in my digestive system but I no longer have the Reynauds symptoms. My fingers don't turn white when I get the least bit cold. And my feet don't cramp so much. I am so thankful for this support group. I may not post very much but I read and it just helps to know I am not alone. Do you think MC is rare like it says on many websites or is it just unerdiagnosed?

Pat · Post by **Pat** » Fri Jan 05, 2007 10:05 am

I forgot to say that they did a biopsy in the small bowel for celiac and it was negative.

Post by **tex** » Fri Jan 05, 2007 11:39 am

Hi Pat,

Thanks for the update. We appreciate the information, because that's how we all continue to learn about this disease - by comparuing notes with each other. I'm glad to see that you're making progress, and your symptoms are improving.

It's interesting that you should ask about the rarity of MC. The medical profession, in general, considers it to be a rare disease, with an incidence in the general population of roughly 5 to 10 people per 100,000. As you suggest, though, there are a lot of undiagnosed cases out there, since the only way to diagnose MC, is by the use of biopsies, and GI's don't do biopsies routinely - they have to suspect something like MC, before they even consider taking any biopsies, and since most of them consider MC to be a very rare disease, they don't normally suspect it. It's a classic example of a "Catch-22" situation.

A month or so ago, there was a post on this board with a link to an article about a research project, where a group of researchers examined evidence from colonoscopies done for other reasons, (other than MC), and found that a very high percentage of them showed the markers of microscopic colitis, yet the patients had never been diagnosed with MC, (and most of them did not show any symptoms of MC). I'm just relying on memory here, but I'm thinking that something like 85 % of the biopsies that they examined, showed evidence that MC was present, or had been present in the past. I wish I could remember the key words to find that post, but I tried a search, and couldn't locate it. If I recall correctly, I believe that Joanna made the post with that link, but I'm not certain.

The bottom line is, it's beginning to appear that many people develop MC during their lifetimes, but most of them either don't show any symptoms, or the symptoms are not chronic, so they never suspect MC. The key question then, is, Why do some of us have such serious problems with MC, when a high percdentage of the general population shows the markers, but have no clinical symptoms?.

In my opinion, MC is caused by a virus in the first place, and those of us who are unlucky enough to have the wrong genes, (sensitivity to certain proteins in our food, and certain meds, etc.,), are stuck with a lifelong problem with these intolerances, once the genes are "triggered". The more I learn, the more the evidence seems to point toward gut bacteria, as the primary " trigger" that leads to our downfall.

Consider this: MC at one time was considered to be a disease of middle-aged and older ladies, yet now, we are finding that more and more men have it, and the age bracket is getting younger - even teenagers and preteens are being diagnosed with MC. Better diagnostic practices? Probably, but I think another factor to consider is the fact that as a population, our gut bacteria balance is becoming more and more corrupt, and it's happening at a much younger age these days.

Why is this happening? In a nutshell - junk food, combined with inadequately-developed immune systems. Our immune systems don't have an opportunity to develop correctly any more, because of our much higher sanitation standards, these days. IOW, kids aren't allowed to "play in the dirt" anymore, so they are not introduced to certain bacteria at the proper developmental stage, and a junk food diet, doesn't provide optimum nourishment for "good" bacteria - instead, it promotes development of the "bad" bacteria in the gut.

Anyway, those are my thoughts on the topic - today, at least. This is strictly my opinion, and I'll be the first to admit that my opinion may change tomorrow, as the evidence changes, but this is the direction my thoughts are heading, as we learn more and more about MC.

Tex

The negative celac results on your small intestine is good news, because it means that you probably don't have a malabsorption problem to have to deal with.

harvest_table · Post by **harvest_table** » Sat Jan 06, 2007 2:21 am

Hi Pat,

Thanks so much for checking in and reporting your progress.

Entocort and diet worked well for me and I hope it's a plan that brings you about soon.

As you know, from reading about this site what works for some, doesn't for others. MC is complicated, and based on what I've learned from the folks here and my own experiences it confuses & intrigues me every day.

You asked about the how rare this disease is, here a link to the thread Tex mentioned. It's very interesting.

http://www.perskyfarms.com/phpBB2/viewtopic.php?t=4942

Take care and keep us posted.

Joanna

Post by **tex** » Sat Jan 06, 2007 9:51 am

Hey, thanks Joanna, for the link.

Now how in the world did I get 85 % out of 26%? I must have gotten the statistics from two different articles cross-contaminated. LOL. So much for my memory.

Love,
Tex

bobh · Post by **bobh** » Sat Jan 06, 2007 11:28 am

Pat wrote:A friend is recommending I take a product from Mannatech, called glyconutrients. Have any of you had an experience with it? It seems very expensive.

Last year I spent 100's on Mannatech products and it did NOTHING for me. The "theory" about increasing communication on a cellular level makes so much sense. The literature sells itself. And maybe it helps some people.

We have an inflammatory bowel disease. In hindsight, those products were like swatting at an elephant with a fly swatter. It just wasn't the right tool. I could take a good B-complex and feel a "boost" because the body needed those nutrients. I would take the Mannatech products and feel nothing. 4 months ago I started taking Meds for the colitis and got relief.

Sorry I didn't see your November post earlier. Some people have great results with diet alone - and I wish my MC would clear up without Meds. But it didn't. I need Entocort to keep my inflammation from raging out of control, and that enables me to hold down a job without running to the toilet all the time.

Pat · Post by **Pat** » Sat Jan 06, 2007 2:52 pm

Thanks for your replies. When should I start seeing results from the Entocort? I thought I was seeing some results but I guess it was just wishful thinking.

bobh · Post by **bobh** » Sat Jan 06, 2007 3:19 pm

How many Entocort are you taking a day, and when did you start?

Pat · Post by **Pat** » Sat Jan 06, 2007 6:08 pm

I take 3, 3mg caps before breakfast. So 9 mg a day. She said I would take it for 6 weeks. She did say it would be 2 weeks before I would see any results. Its only been 1 1/2 weeks. I'm just not very patient, I guess.

bobh · Post by **bobh** » Sat Jan 06, 2007 6:52 pm

Gotcha. Earlier you mentioned that you had been reviewing people's experiences on this board - and likely saw that I had a miraculous HALT of an extreme flair within 24 hours of taking 60 mg of Prednisone (which was gradually tapered down to nothing within 12 days, as Entocort was introduced).

About a week into the protocol we introduced the Entocort, and by that time I had been having formed stools for 6 days.

I remember at least one other person having similar "waiting" for Entocort to kick in - and honestly don't recall how long it took.

I trust you see results within 6 weeks - I have a lot of faith in Entocort. Maybe you could take some immodium, or whatever "bandaid" may have helped you in the past - to stop the D and let the Entocort guide you into Remission.