Please, I am new and I need answers to questions and advice

pinballwizard · Post by **pinballwizard** » Fri Jul 17, 2009 4:02 am

I am looking for advice and answers to specific questions. I hope you all can you help me.

Here is my story.

I was first diagnosed with Microscopic Colitis a month ago at the Mayo Clinic. They also reconfirmed with IBS that I was diagnosed with the year previous.

I went to Costa Rica in October of 2007. In November, started getting the flu continuously for a month more or less. Finally, I went in asked for a antibiotics hoping that it would ease the symptoms. Things started to get worse. I was getting diarrhea... And I was getting more ill.

Doctors thought I had a parasite or some sort of bacteria in my body that I had gotten from Costa Rica and I went on more antibiotics.

We never found the bug, but I went on Flagyl, an antibiotic/antiparasite drug in January. Slowly my continuous diarrhea started to go away about 85%. Meanwhile I started getting joint pain and gas. Around mid-April, I started getting pretty sharp joint and muscle pain. April - June became the time Fatigue started to set in after any slight exertion. Headaches and depression thereafter. I also lose focus. I have a hard time thinking.

My GI doc thought I had post-infectious IBS and that it was somehow related to the bug we never found, the antibiotics and the aftermath.

I went to Dr. Wangen, a prominent IBS specialist in Seattle. He was an ND. After about $3,000 in tests on many different things, the IBS doctor determined that much of my abdominal issues were amplified by particular foods (found in allergy tests) and I had a high level of yeast in my digestive track. I had run a ton of tests with this doctor. Right now he has me on Nystatin and probiotics.

If you want to know more about the tests, here they are. I recommend him. http://www.ibstreatmentcenter.com/6_d.htm He also runs a food allergy center.

CONCLUSION: He came to the conclusion that antibiotics killed the good bacteria in my gut and replaced it with bad bacteria. He thought I had a problem with the yeast (aka candida albicans)

According to my allergy panel I am a little bit allergic to chili peppers, yeasts, bananas and sugar cane.

The allergy panel is not what we focused on so much. We focused on the intense amount of yeast in my colon. It was 10-100 times normal. The doctor said, that I had to go on an anti-candida diet. No sugar, alcohol, breads, yeasts, simple carbs etc.

A couple months ago, as I said before, I went to the Mayo Clinic and spent $25,000 and they rechecked everything. Blue Shield picked up most of it. You should consider this clinic. These guys rock. They tested me for so many things. It takes almost 6-12 months to get in there.

Mayo clinic arrived at the conclusion of:

Microscopic colitis, mild Attention Deficit Disorder (that I was diagnosed with when I was a kid), IBS, depression (I don’t feel that depressed, But I was last Summer and I disagree) and tendonitis around many of my joints in my body.

The doctor said that I have all these inflammatory responses to a heightened immune system that was heightened by a bug and anti-biotics. Now the immune system is hyper alert and killing things it should not be killing. Tendons was one thing it had been attacking. Microscopic (lymphocytic) colitis is another heightened immune response.

QUESTIONS

Have any of you looked at the connection with yeast (in this case candida albicans)?

My biggest issue have not been digestive problems, but mental clarity and focus and joint and tendon problems. I can live well with the digestive problems. Are there other people in the same situation?

I rarely ever get diarrhea. I just feel awful and sometimes I get gas. is this common?

The IBS Treatment center says that I am not allergic to gluten and my celiac panel says so. What is my chances of having MC and not being allergic to gluten?

What books should I read? Since I dont have a problem with celiac (or its not obvious), there has to be other books. Are there any books that deal with microscopic colitis?

Wangen said I should focus on yeast build up in my tract, but that was prior to getting diagnosed with MC. Should I start worrying about the food allergies now that I have been diagnosed with MC?

Can I have nicotine? I chew on nicotine gum, but I don’t smoke or chew tobacco. Nicotine gum or lozenges is safe according to the Mayo clinic. I am reading that it is good for Crohn’s disease. Does that aggravate symptoms or no change or make them better? What about Ritalin? If I have to give up caffeine I am gonna be looking for a stimulant to keep me focused because I have ADD. What are good alternatives to caffeine?

How long do you generally have an allergic reaction to something?

What can I do to get more disciplined about proper diets? It is so hard to get away from old foods that make me sick?

Is anyone in here allergic to sugar cane?

JLH · Post by **JLH** » Fri Jul 17, 2009 6:11 am

pinballwizard: we're glad you found us. I am certain that Tex will be along soon to answer all your questions. In the meantime, read as much as possible on this site and www.enterolab.com too.

Polly · Post by **Polly** » Fri Jul 17, 2009 6:15 am

Hi PBW and

I am getting ready to leave town for a few days so only have a minute to write. Many here have experience with the issues you raise, so I know you'll get lots of advice.

I just have one thought for you for now......GLUTEN!

And I'd guess you have a 99% chance of being gluten intolerant (maybe dairy intolerant too). Most of us here have normal celiac blood tests but yet are highly gluten-intolerant. The only place to get reliable food intolerance tests is Enterolab: www.finerhealth.com. They use stool samples. You have the classic symptoms of gluten intolerance - fatigue, mental fog, muscle/joint aches and pains, etc. The best reading about MC is on that website too.

It's a crime that docs still don't know about the MC-food intolerance connection - even when you go to the best, as you have. Sigh.

Good luck. Looking forward to future chats. You WILL get better, I promise!

Love,

Polly

JLH · Post by **JLH** » Fri Jul 17, 2009 6:30 am

PBW, Polly IS a doctor.

mbeezie · Post by **mbeezie** » Fri Jul 17, 2009 7:47 am

Welcome PBW,

Sorry to hear you spent so much money and are still struggling, but you have come to the right place. There are many of us here who have been down that frustrating path. Going to the IBS Treatment Center and Mayo Clinic tells me you are willing to go to any length to figure out what is wrong.

I agree with Polly. When I read your story I thought "gluten and dairy". Brain fog is a symptom of gluten intolerance. Joint pain is also asscoiated with gluten. When I got off gluten both of those things cleared up very quickly.

I read Dr. Wangen's latest book, Healthier without Wheat. I am really surprised he didn't have you try a GF diet, but his tests focus only on blood antibodies. Most of us here also had negative blood tests but the majority of us are on GF diets. Many of us used a lab called EnteroLab, which uses stool to test for antibodies instead of blood. The theory here is that antibodies show up in stool first. Many of us were skeptical about EnteroLab at first and you may be too . . . after all, you did go to Mayo Clinic and you would expect them to be up on everything. The lab is legit and the tests are more accurate than any test available. The doctor who runs it was a respeced researcher at Baylor before he opened the lab. He collected data for 8 years and is in the process of trying to get it published.

Most of us have found that we react to many foods, gluten, dairy, soy, corn etc. Sometimes it takes a while to fine tune the restrictions and go into remission. BTW, you may not actually have a caffeine problem - that suggestion comes out of the traditional IBS literature -many of us have found that we can still drink coffee once we remove other problematic foods.

BTW, as far as I know there are no books on MC. You will get more info from this site than any other resource.

Hang in there - you will figure it out in time.

Mary Beth

kscolorado · Post by **kscolorado** » Fri Jul 17, 2009 8:58 am

Welcome!! I can truly relate to your struggles. Your symptoms are very much like mine. I am still waiting on my enterolab results but KNOW that gluten and dairy are a problem for me. I went gluten free 1 1/2 years ago on the advice of my brother in law (who is celiac) because he felt that my symptoms were more like his instead of the IBS i always thought it was. I was GF for almost a month when I had the celiac blood work and it came back negative (I didnt realize you needed to be eating gluten for a more accurate test). I still went gluten free because you get a lot of false negatives with the blood work. I felt so much better for the first 4 months then started noticing the dairy bothering me. After you take away the big offender (gluten) you start to notice the other intolerances (if there are some). All my joint aches, canker sores, and skin rashes went away. It wasn't until MY family (hubby's family is great) were constantly questioning my diet, and the fact that I still wasn't 100% (this is where I think the colitis is involved) that I decided to do a gluten challenge to be tested again. I started eating gluten again at the beginning of May and by July 1st, I felt like crap. The joint pain came back along with the rashes, bloating, Diarrhea etc. This is when I decided to test thru enterolab because you don't need to be eating gluten recently to be tested for gluten sensitivity. I also am having the gene test to see if I carry any celiac genes and the milk test. I also have an appointment with a very enlightened GI in August to sort out colitis ect. As far as the yeast connection, TEX will come along with answers for you! Welcome again!

Lucy · Post by **Lucy** » Fri Jul 17, 2009 9:32 am

Wow Pin,

That's a lot of money!! I just went to my GI, had a colonoscopy in which a biopsy was sent to the pathology lab, and it came back M.C. I took that and ran with it, without taking any medications as they had a headache warning, and mine were already constant by then, so I didn't want to add to the debilitation. I could sometimes hardly make it out of bed by that time.

Then, I found the precurser to this site, took Polly's and others' advise, and have been gluten free along with a few other things that Dr. Fine tests for, and my symptoms, similar to yours, have all gone away.

After giving it up, I could tell BEFORE I'd done his tests that gluten was obviously causing my body pains -- tendons, bones, muscles, etc., early on, even before I tested my stool. The stool test a couple of months later just confirmed what was obvious, but gave a bit more credibility to the explanations I'd read about the testing.

I was able to use the other tests to confirm my observations before the results were back -- that was my way of making sure their wasn't a psychological or placebo effect with the other allergens. The confirmations the tests provided, for me, anyway, provided what I needed to keep me keepin' on once I started to feel better -- you know how temptation starts to creep in over time, so I had something in print to remind me it wasn't just my imagination. Now I realize there was no way I was going to forget how bad it was, but my thinking back then, as you say, was way foggy. Anyway, I'm glad I took the exact route I did.

The diarrhea took a little more time, but it also lessened greatly (understatement) just off the obvious sources of gluten as I started to eliminate all I could figure out to eliminate, but I was faithful to what I knew at the time. It's a steep learning curve finding where the stuff's hidden. One of the reasons it didn't completely go away was that I also form antibodies and react to a few other proteins, and had to figure out where the "hidden" gluten was in things I was eating. You'd be amazed the things that are used for one reason or another in foods you'd never expect to have these allergens!!

Problem was that I didn't get the colonoscopy done for years -- afraid I had colon cancer for a while, until I'd lived too long with the symptoms, and then, thought I'd be put on too many meds if I told anyone all the symptoms I'd been having, so finally, it just got sooo bad that I decided, what the heck, and had the "routine" colonoscopy, a number of years past the date I was due to have one for screening. Good thing I did that, and am I thankful for the internet if for no other reason than that I was able to find out how to recover from all the symptoms I had!! You have come to the right place!!!

I'm going to go back and re-read your questions, and try to do another post to answer what I think I can.

Welcome to the group.
Yours, Luce

Post by **tex** » Fri Jul 17, 2009 10:07 am

Hi,

Welcome aboard. I see that most of your questions have already been answered, and I agree 100% with those answers. As Joan pointed out, Polly is a doctor, but much more important than that, she is a doctor who has MC, (as does Dr. Kenneth Fine, the GI doc who founded Enterolab). Trust me, doctors who have MC, have a totally different attitude toward the disease, when compared with doctors who do not have the disease, and for good reason - they have first-hand experience with just how debilitating it can be, and so they are forced to learn how to control the symptoms, so that they can live with it, on a daily basis.

With all due respect to the doctors at the Mayo Clinic, (and they definitely are top-rated doctors), as you do more research, and learn more about your own case, you will find that they really don't understand the disease. Regarding all the tests - it's good that they are so thorough with the tests, but the ultimate goal of a testing program is to arrive at a diagnosis and a treatment plan that will correct the patients issues. The doctors at the Mayo Clinic, despite all their diagnostic capabilities, simply do not understand how to properly treat MC.

When you returned from Costa Rica, did any of your doctors think about testing you for tropical sprue? There is a pretty good chance that tropical sprue might have been the source of your symptoms.

pinballwizard wrote:Have any of you looked at the connection with yeast (in this case candida albicans)?

We have had many discussions about candida overgrowth in the past, and several members here have had the problem, and successfully treated it.

pinballwizard wrote:My biggest issue have not been digestive problems, but mental clarity and focus and joint and tendon problems. I can live well with the digestive problems. Are there other people in the same situation?

The mix of symptoms, and their intensity, vary for all of us, however neurological symptoms are extremely common with this disease, and in fact, neurological symptoms usually present first, (before the digestive issues). Many of us, (myself included), could have qualified for a diagnosis for rheumatoid arthritis, chronic fatigue syndrome, even lupus, while we were reacting, if we had pursued such diagnoses.

pinballwizard wrote:I rarely ever get diarrhea. I just feel awful and sometimes I get gas. is this common?

The most common GI symptom is diarrhea, but some of us present with alternating D and C, (constipation), (such as myself), and it's even possible to present with C only, though it's rare to see a diagnosis for that phase, since most people will not even go to their doctors about C, let alone pursue a diagnosis for it, nor will most GI docs do a colonoscopy and take biopsies when the presenting symptoms is C. Gas and bloating, (and frequent loud, gurgling noises), are common symptoms of MC.

pinballwizard wrote:The IBS Treatment center says that I am not allergic to gluten and my celiac panel says so. What is my chances of having MC and not being allergic to gluten?

Allergies and intolerances are two different issues, and as Polly and Mary Beth have already pointed out, stool tests are the only reliable way to detect gluten sensitivity, without fully developed celiac disease. As Polly point out, the odds of you not being gluten sensitive are pretty slim. I would suspect that the percentage she indicated is probably pretty close.

The example that Kathy described, of her own gluten challenge, pretty well says it all about how gluten affects most of us. IOW, most of us are just as sensitive to gluten as celiacs, and possibly more so, in some cases, even though we test negative, with the classic celiac blood tests.

pinballwizard wrote:What books should I read? Since I dont have a problem with celiac (or its not obvious), there has to be other books. Are there any books that deal with microscopic colitis?

As Mary Beth pointed out, there are no books on MC, certainly no reliable ones. This is an orphan disease - the medical community simply doesn't understand it, so they try to ignore it, since they don't know what to do about it. At this point, if someone in mainstream medicine did write a book about MC, it would probably be worthless to most patients.

pinballwizard wrote:Wangen said I should focus on yeast build up in my tract, but that was prior to getting diagnosed with MC. Should I start worrying about the food allergies now that I have been diagnosed with MC?

If you actually do have a yeast overgrowth, then it definitely needs to be controlled first, because candida will perpetuate the Leaky Gut Syndrome, (LGS), which is the mechanism that is causing, (allowing), most of your neurological symptoms. The roots of candida actually penetrate the tight junctions, (between the cells of the epithelia of the intestines), thereby holding them open, and allowing peptides and other medium to long chain polymers, (strings of amino acids), to exit the intestines and enter the bloodstream. These partially digested food particles, (peptides, and possibly certain chemicals that exit along with them), are what cause the joint and muscle pain, (when they are deposited there), brain fog, (gluten crosses the blood/brain barrier), etc. Regardless of whether or not you address your MC issues, your neurological issues will not resolve until the candida overgrowth is controlled, (if it actually exists). Along with that, of course, you need to remove the offending foods from your diet, in order to control the inflammation that is unique to MC, because MC tends to trigger LGS, also.

pinballwizard wrote:Can I have nicotine? I chew on nicotine gum, but I don’t smoke or chew tobacco. Nicotine gum or lozenges is safe according to the Mayo clinic. I am reading that it is good for Crohn’s disease. Does that aggravate symptoms or no change or make them better? What about Ritalin? If I have to give up caffeine I am gonna be looking for a stimulant to keep me focused because I have ADD. What are good alternatives to caffeine?

Nicotine is protective of MC, (and other IBDs). Not enough research has been done, (since the medical establishment is anti-tobacco), but there is a lot of empirical evidence to support the benefits of nicotine in this situation. (Nicotine is also protective of Alzheimer's, Parkinson's, etc., but that's another story).

As Mary Beth pointed out, there is no reason to give up caffeine, as far as MC is concerned. If caffeine had a laxative effect on you before the disease presented, then it will continue to do so, and if it didn't, it won't do so now. As a group, we have found that the warnings about avoiding caffeine if you have MC, as issued by the Mayo Clinic, and virtually all the other prestigious medical institutions, is totally unfounded. Apparently, someone made a false assumption, when they were writing an early opinion about MC, and every other doctor just accepted it as fact. It is not true, obviously.

pinballwizard wrote:How long do you generally have an allergic reaction to something?

If we are in remission at the time, the duration of a reaction may only a few hours to a day or so. If we are still healing, it can be days to months, depending on the circumstances, and how well-tuned our diet might be. Remember that the GI system reactions that we are discussing here are not allergic reactions, they are intolerance reactions. Allergy symptoms present within a few minutes, and typically last a few hours. Intolerance symptoms present within a few hours, to a few days, and last for a day or so to maybe a week. It is true, however that some of us seem to be both intolerant, and allergic, to certain foods, in which case those individuals might begin to react within a matter of minutes after ingesting the food. Some of our more gluten-sensitive members have had to rush to the bathroom, before they finished a meal, for example, if it happened to contain gluten. Most of the rest of us typically react beginning a few hours, to maybe a day, after ingesting a food to which we are intolerant.

pinballwizard wrote:What can I do to get more disciplined about proper diets? It is so hard to get away from old foods that make me sick?

Good question. For one thing, it is true that we crave the foods that we are intolerant of. They actually chemically manipulate the pleasure centers of the brain, to make us want to continue to ingest them. Fortunately, most of us are sufficiently motivated, because uncontrollable diarrhea is a very strong motivator. If you have trouble staying focused, you might remind yourself that untreated gluten sensitivity, carries the same increased risk of non-Hodgkin's lymphoma, that untreated celiac disease carries. Recent research suggests that people with untreated celiac disease are four times as likely to die, in a given time span, as the general population.

pinballwizard wrote:Is anyone in here allergic to sugar cane?

Now that's an unusual allergy. Are you referring to the sugar itself, (sucrose, which is common table sugar), or the plant? If it's the sugar, since it's impossible to be allergic to a sugar, the effect would have to be intolerance, (rather than allergy), and that could simply be due to mechanical damage to the architecture of your small intestine, caused by gluten. With increasing damage to the brush border region of the duodenum, enzyme production is attenuated, beginning with lactase, (the enzyme used to digest lactose), and continuing through all the enzymes used for digesting the various sugars, if enough damage is accrued. As the gut heals, enzyme production will be restored, in reverse order, of course, (so that lactase will be the last enzyme to recover). That's why virtually everyone with any form of enteritis is lactose intolerant, until they recover. That result could also be a false positive. Have you tested yourself to see if you are actually "allergic" to sugar cane?

Candida has the unique ability to trigger a true craving, (in the brain of the host), for sugar, in order to feed it. You might have noticed that, if you have a candida overgrowth. Does your doctor have you on a severely sugar-restricted diet, in order to fight the yeast?

I hope some of this helps to organize your understanding of the disease.

Tex

Lucy · Post by **Lucy** » Fri Jul 17, 2009 11:24 am

Tex,
I just lost a long, long post that I'd like to recover. Is there anyway you could find it or is everything erased once this thing reverts back to the original threads as posted.
Thanks, Luce

Post by **tex** » Fri Jul 17, 2009 11:39 am

Luce,

If it was saved to the database, I may be able to find it. First, though, check to see if you accidentally saved it as a draft. Do that by going to the index page, and clicking on the link that says View your drafts and posts, (which is below the line of links to member's blogs). If it was saved as a draft, it should show up there on top, and you should be able to open it by clicking on "Edit".

If that doesn't work for you, then let me know, and I'll try to locate it in the database, and recover it for you.

EDIT: I just checked the database, and I don't see a recent draft addition connected with your user number, nor do I see any saved text that would fit the description, connected with this topic. Apparently, it wasn't saved to the database.

My experience has been that when something like that happens to me, I have accidentally hit a key that advanced the browser to another page. I always try backtracking, (click on the "Back" arrow button, in your browser, to go back to the previous page), and if that doesn't get me back to the correct page, (where I was writing the post - you may have to scroll up or down the page to find the message window), then I backup up another page. By doing this, I almost never lose a post. Try this method, the next time you think that you have "lost" a post. You have to do it immediately, though, because if you click on just about any other navigational option first, (such as opening another topic), then you will lose the ability to backup to the post, and it will indeed be gone.

Tex

Lucy · Post by **Lucy** » Fri Jul 17, 2009 1:29 pm

Tex,

Thanks for the advise and for looking for it for me. It stinks how that always happens when ya do a longer, better written post. Now, I'm out of time, but ya'll probably covered some of the things while I was still thinking and typing.

Take care, and see ya later.
Yours, Luce

Lucy · Post by **Lucy** » Fri Jul 17, 2009 4:15 pm

Pin,

Let me ask a question, if you don't mind. Did you have as much as the gene testing for celiac disease at Mayo? If so, please tell us the results, and if anything, what was done as a follow-up to that? I will explain why I'm asking after you do.

I wish I'd not lost the longer post, but maybe this will be an easier way to start a little dialog. Luce

pinballwizard · Post by **pinballwizard** » Wed Sep 16, 2009 3:09 pm

JLH wrote: pinballwizard: we're glad you found us. I am certain that Tex will be along soon to answer all your questions. In the meantime, read as much as possible on this site and www.enterolab.com too.

I just ordered all the tests.

pinballwizard · Post by **pinballwizard** » Wed Sep 16, 2009 3:14 pm

tex wrote:
pinballwizard wrote:Is anyone in here allergic to sugar cane?
Now that's an unusual allergy. Are you referring to the sugar itself, (sucrose, which is common table sugar), or the plant? If it's the sugar, since it's impossible to be allergic to a sugar, the effect would have to be intolerance, (rather than allergy), and that could simply be due to mechanical damage to the architecture of your small intestine, caused by gluten. With increasing damage to the brush border region of the duodenum, enzyme production is attenuated, beginning with lactase, (the enzyme used to digest lactose), and continuing through all the enzymes used for digesting the various sugars, if enough damage is accrued. As the gut heals, enzyme production will be restored, in reverse order, of course, (so that lactase will be the last enzyme to recover). That's why virtually everyone with any form of enteritis is lactose intolerant, until they recover. That result could also be a false positive. Have you tested yourself to see if you are actually "allergic" to sugar cane?

Candida has the unique ability to trigger a true craving, (in the brain of the host), for sugar, in order to feed it. You might have noticed that, if you have a candida overgrowth. Does your doctor have you on a severely sugar-restricted diet, in order to fight the yeast?
Tex

Its the protein in sugar cane plant itself. I was tested positive for it at another lab that Wangen uses. He also has me cutting down on sugar to fight the yeast. So there are two reasons for cutting down on the yeast.

pinballwizard · Post by **pinballwizard** » Wed Sep 16, 2009 3:16 pm

Lucy wrote:Pin,

Let me ask a question, if you don't mind. Did you have as much as the gene testing for celiac disease at Mayo? If so, please tell us the results, and if anything, what was done as a follow-up to that? I will explain why I'm asking after you do.

I wish I'd not lost the longer post, but maybe this will be an easier way to start a little dialog. Luce

I came up negative on the genetics test. I am getting tested again with EnteroLab because it comes in a cheaper bundled package that I have ordered.