Saw a new doctor with new ideas- feedback would be nice!

[AerobicsMomma]

Hello, AerobicsMomma here~

I wanted to say thanks for all the great topics to research on diet and food testing. I just relocated with AF to new area and get to start ALL over with new doctor- only I think this military doctor has a clue. I was armed with my printouts from here on what people have done what...what I wanted to have done~ He's 1 of 13 GI doctors and he's the #1 guy so I feel a wee bit of hope. I will say that he's taking me off entocort and Asacol and replacing with non other than pepto bismol- 3x a day. Any feedback on that? I'm glad- entocort works but I have to take at night otherwise I feel slightly whacked out. And the asacol floats!

It also seems that since he too has never encountered a patient with both LC and CC, and that there is more to the story- and maybe if I'm lucky I'll get my 3rd colonoscopy in 3 years! (my parents are both in their mid-60s and neither has had 1!!!)

Lupus- that is a new theory- as well as the fact that I may be "Crohn's in progress." I know I asked before but nobody thus far has progressed right? The nice man was pressing around my belly and wow did it hurt- still does, and so that made him want to do another small bowel series- love swallowing that camera! Most of my pain is concentrated right under the belly button and radiates out and now up- and I have sores in my mouth.

I apparently have Raynaud's phenomenon (my hands turn blue) and that can be linked with Lupus or just having a bad vascular response. BUT the thing that makes me go hmmmm is that fact that many descriptors of MC is the chronic fatigue, which is also a lupus thing. I know they are all autoimmune.

But the good news for me was he ordered all the food/gluten tests so that will be a good starting point for me in terms of a diet. I will say that when I'm carefull and boring the d is minimal.

Does any of this sound familiar? It's been helpful to see that somethings I have in common with some of you out there. I can learn from your journeys thru all of this as a guided tour! I was kind of hoping that MC was the end all be all but it seems like it's just part of the iceberg.

I appreciate all of your time and ideas if you'd kindly respond. I'm one who values learning from others- no need to re-create the wheel...just need to find my right road trip!

Have a great day!
Susanna

[tex]

Susanna,

Bear in mind that most of what I say in this post is my opinion, based on my own experience, and the experience of other members of this board. Therefore, it will differ from the opinion of most GI docs.

The Pepto-Bismol treatment was originated by Dr. Fine, roughly 8 or 10 years ago, and it was the first treatment that he recommended for MC. He no longer recommends it, and it is therefore considered to be an obsolete treatment. It probably won't hurt you, but even if you achieve remission with it, a few weeks after you stop taking it, the D will resume, (unless you're able to control it by diet, or some other means). The reason he no longer recommends it, is because there is a slight risk of toxic effects, with some patients, and a few members of this board have experienced those effects, and had to stop taking it. It is not a cure, and when the D resumes, a few weeks after the treatment is stopped, you cannot begin taking the Pepto again, because bismuth will accumulate in your body during the 8 weeks you will be taking it, and if you take much more than that, it will eventually reach toxic levels. Dr. Fine originally recommended Pepto in conjunction with the GF diet, but most GI docs who recommend the Pepto treatment, conveniently forget the GF diet portion of the program, so the patient always relapses after the treatment.

Entocort works for most people with MC, you just may need to reduce your dosage rate.

I think the GI docs are quite confused about the diagnostic criteria of MC, and they seem totally clueless about the fact that MC has some surprisingly dynamic features. IMHO, virtually all of us with MC have both LC and CC, at one time or another. Most GI docs assume that the "snapshots" of the inflammation pattern, and/or the collagen deposits that they see in the biopsy samples from a colonscopy, accurately define the diagnosis for that particular patient. The problem is, for many of us, the pattern changes over time, and I truly believe that biopsies taken at various times, over a period of months, (or in different locations in the colon), will show that the disease presents differently at different times, (or in different locations), depending on diet, treatment, other complicating factors that influence the GI tract, etc.

For example, almost every patient with LC probably has some thickened collagen bands, (the markers of CC), in various places in their colon. They don't show up in the biopsies, because of the statistics of the hit-and-miss sampling procedure. Likewise, virtually all patients with CC, have infiltration of lymphocytes between the cells of the epithelial layer of their cononic mucosa, (the markers of LC), but if the concentration does not meet a certain arbitrary level, (if I remember correctly, the threshold is around 20%), the pathologist will not always report them, during his examination of the samples.

You are correct. Many of us, myself included, have experienced enough symptoms to be diagnosed with various other autoimmune diseases, at some point or other, before we were able to get our MC under control. Once we were able to control our MC, all the other symptoms went away, also.

If he ordered stool tests, the results will probably be valid. If he ordered blood tests, the results will almost certainly be worthless, because you will get nothing but false negatives. Blood tests detect food allergies, but not food intolerances.

Still, it's good that he's giving it the old college try. Maybe he'll find something that some clues.

I apologize for sounding negative, but the medical schools really have a lot of catching up to do, when it comes to training doctors to treat MC.

I've forgotten, are you currently following any diet restrictions?

Wayne

[artteacher]

Hi Susanna,

In order to be diagnosed with lupus you need to have a number of test results/symptoms (I think 6 of a list of 9). The ones I remember are:
*anemia
*high ANA count (antinuclear anitbodys)
*High sedimentation rate for more than 6 weeks (mononucleosis also causes a sed rate to be high for that long, but then the levels drop)
*hypothyroidism
*high C-reactive protein (an inflammation test)
*fatigue
*butterfly rash across cheeks
*joint pain, esp in extremeties (fingers, feet, ankles, wrists)
*sun sensitivity -rash or flulike aches after sun exposure
* ? can't remember

Other indicators would be mood swings, problems with memory or balance, family history or lupus or autoimmune disease.

I have to go, but if you have other questions, feel free to post - I had/have lupus. It's sort of in remission, probably due to changes in my diet.

Love, Marsha

[Polly]

Hi Susanna!

Sounds like you have found an open-minded doc who will work with you. That's terrific news! You are on your way!

There is nothing wrong with trying the Pepto Bismol (PB) treatment. It is an excepted treatment for MC (which includes both LC and CC). Dr. Fine, who developed and published the PB treatment, had good success with it. The only reason he no longer recommends it as a first line of defense is because he found that the GF diet was a more effective way to combat MC. The GF diet along with the PB treatment sounds like a fine way to go for now. Apparently the PB has a mild antibiotic effect, according to Dr. Fine, and therefore it helps to eliminate/control the "bad" bacteria in the colon. Diet and a course of PB may be what does the trick for now!

If not, Entocort can be tried next, along with the GF diet, and then diet alone - if you are interested eventually in managing the MC with diet alone. Entocort is the same as PB in that it usually won't work alone to control the MC - most who do not go GF have found it impossible to get off of the Entocort.

I keep in regular touch with Dr. Fine, and he has never expressed any concerns about PB toxicity if used correctly. (Tex is correct that those concerns have been raised here on the board, but we raised them, not Dr. Fine). Again, the reason Dr. Fine stopped recommending PB was because he thought the emphasis needed to be on the GF diet for longterm remission. He felt that valuable time was wasted trying the PB alone, and that the best choice was to jump directly to diet.

I agree that, if your doc is going to do blood or skin tests for food intolerances, they may not be effective. For example, many of us here have gluten sensitivity despite a negative blood test for celiac. And most of the skin tests are looking for the immediate (anaphylactic or life-threatening) reactions, not the kind of reactions that MC sufferers have to foods. Many of us here have had Dr. Fine's STOOL tests for food intolerances, and these are quite accurate for our type of intolerances. Most labs don't do these tests, unfortunately, but it is possible for your doc to order them from Dr. Fine's lab. Others have been able to have their insurance pay for them, but I don't know about the military. Perhaps it would help to send your doc some info. on Dr. Fine's tests (www.enterolab.com).

Anyway, good luck as you start down the path to health. You must be so relieved to have a good doc and a plan. Please keep us posted.

Love,

Polly

P.S. I am aware of at least 2 MC folks who were diagnosed with lupus (or at least lupus symptoms) whose symptoms disapperared on the GF diet.

[tex]

Good point, Polly. Sorry if my remarks about the Pepto-Bismol treatment seemed misleading. This is what I based my comment about the risk of adverse effects from Pepto-Bismol on:

Because of this chance of relapse, and because Pepto Bismol is still a drug with at least the potential (albeit rare chance) for side effects or reactions to the dyes, etc., I recommend testing for gluten sensitivity and a gluten-free diet as the first line of treatment for microscopic colitis.

From:

http://www.finerhealth.com/Educational_ ... c_Colitis/

Also, on that page, he concurs with my comments about LC and CC being one and the same. IOW, we all have both LC and CC, our doctors just don't realize it:

some people use the term lymphocytic colitis when there is no excess collagen because there are lymphocytes seen in the tissue. However, lymphocytes are seen in collagenous colitis as well, making lymphocytic colitis an inaccurate term

Tex

[grannyh]

I found that asacol made me dizzy as a bat and had to stop it.. then I went to Entocort EC.. three a day. I am not following the gluten free diet and continue to take 3 entocort a day with great success. Since I am old and not planning on having any children now or in my 70s..LOL I don't care what the long term effects of entocort may be . There are some things I still don't eat that can cause mild problems even on Entocort...

Could it be that the asacol was the culprit or maybe the two drugs in combination?'
grannyh

[Polly]

Hi there, Tex,

You were absolutely correct in everything you said. I just wanted to make sure that Susanna did not think her doc recommended a treatment that was inappropriate or dangerous. In fact, it is a plus that he even knows about the PB treatment - that puts him a giant leap ahead of many other GI docs! It is one of the safest initial treatment options for MC and can be effective in less serious cases of MC (especially if used in conjunction with the GF diet). If I remember correctly, Dr. Fine did find a group of patients that responded to PB alone, but maybe all have been found subsequently to have relapsed after a longer period of followup. (?). And, I also thought it a major plus that her doc is open to exploring the diet option. I wish that all docs were this knowledgeable and willing to learn from their patients. I think Susanna is in good hands!

Love,

Polly

[tex]

Hi Polly,

Hmmmmmmmmm. Well, when you put it that way, I have to agree that the PB treatment is definitely one of the safest treatments available, (as long as it is limited to the 8 week period recommended by Dr. Fine. I haven't seen any evidence to indicate that it is of any long term value, without the GF diet, but there might be a handfull of cases which are exceptions to the rule.

Also, I completely agree with you that her doctor is way ahead of the pack, if he is even willing to acknowledge that diet might a be a factor in the control of MC. Obviously, he must be aware of Dr. Fines research, which puts him in a rather elite group of "informed" GI docs. All in all, yes, I agree that she is in good hands.

Something I forgot to add to my original response - I still don't believe that there is any valid evidence that MC progresses to Crohn's disease or ulcerative colitis, (UC). I'm not saying that it's not possible to find a patient who started with MC, and wound up with Crohn's, or UC, but I believe that in a rare case like that, the presentation of the more serious form of IBD is a coincidence, rather than a progression.

There is nothing about MC, (or any other disease), that makes any of us immune to either Crohn's or UC. IOW, just because we might have MC, doesn't mean that we can't develop Crohn's or UC, just like any other member of the general population. I don't, however, believe that MC segues into Crohn's or UC, and I don't believe that anyone who has MC, has any better chance of developing Crohn's or MC, than any other member of the general population.

Love,
Tex

[Beth]

Hi everyone,

Can I jump in here and ask a question? I had a short (about a seven day-) remission last week, and then after trying soy milk went right back to D and cramping. How long does it take to get better on a GFCF diet? I'm still taking 2 entocort/day, and I've stopped taking ALL supplements for now. My doctor recommended PB to me, too, but since I seemed to be getting better right after I saw him, I didn't start. To me it doesn't seem necessary to take PB and entocort at the same time. What about you, Wayne and Polly? And right now my main symptoms seem to be cramping. The D is much less, but I can still feel that my stomach is incredibly sensitive, even with a very bland and sensitivity-free diet.

Thanks,
Beth

[tex]

Hi Beth,

In my opinion, there wouldn't be much point in taking PB, since budesonide is a much bigger gun. However, PB does have some antibiotic effect, while Entocort is an inflammation fighter. PB will coat the mucosa of your colon with bismuth, which may prevent the budesonide from being absorbed properly. IOW, they work by different mechanisms.

Tex

P S I'd suggest you avoid soy, if you haven't already decided to do that.

[AerobicsMomma]

Wow, I feel better. All of this helps me keep a running list of things to ask/discuss with the Dr. this week.

Beth:I was told to stop entocort and asacol and start JUST the PB if that helps. FYI soy is a good in tiny quantities but I suggest doing some research in the negative effects of soy in women. As a Personal Trainer I make sure my female clients understand the impact soy can have! And isn't soy a big MC intolerance?

I think the DR putting me on PB was more about that it's what he tries 1st and then goes stronger. I think he's trying to take me back to the beginning without making me feel like I'm starting the whole process over.

I was wondering about serum vs fecal in the testing so that is good to know. I know DR #1 "tested" the biopsied matter from colonscopy #1 but to what extent I'm not certain. And new Dr. sent me an email that he's recieved the info from #1 and will review it all and call this week to discuss what I know to be true and what is really what.

Where is this Dr. Fine- I get the picture of the Wizard of Oz in my mind since there is so much discussion of him !

I worry because there apparently is a small mass on my liver- apparently not important enough to tell me about--- BUT now that I know it's there I think I'll keep asking for a watchful eye on it.

It's amazing the amount of stuff that is in those records that I've never heard of....scary actually!

OK so here is what I am Presuming. I really need to get fecal food testing done so that I can without any question begin a diet that is suited for my "crappy colon!" Enterolab is the one that is the most commonly used with us MC types and based on the results of most of your labs you've been able to put yourselves on good diets that manage your specific intolerances.

What I also am gathering is that there are several people that "lupus" or lupus like symptoms have been present in. Are we all female? I assume that it's a more female dominant issue-----hmmmm and some other women here have also noted a difference in D and girly cycle. Interesting.

Did anyone notice a major "trigger" that started the drastic changes to the wonderful world of chronic and miserable D? I thought it was a stomach flu I couldn't shake- then 2 weeks before I turned 30 while grocery shopping with my 3 kids...I had total loss of bowel control! Within 3 weeks I'd lost 10 pounds and could barely function- did I stop teaching my fitness classes....NO, just didn't eat. When one of my friends came to visit me and said I looked gaunt and gray I decided the flu wasn't it. It's been 2 years~ Yep I turn 32 the 18th....I know a young pup...I tell people I'm a 30 something year old woman with an expired colon!

Have any of you found a "treat" that looks, smells and actually tastes like ice cream? I tried a vanilla frosty today at Wendy's 'cuz they say it's dairy free and dear lord I think I'm gonna be 5 lbs lighter by daybreak!

And I have to giggle at a comment made way back about our "colitis diet" I've had many people ask me how I leaned out so fast- my husband calls me his incredible shrinking wife. I'm still steadily losing 2-4 lbs a month which is safe by weight loss standards and I'll admit it's been kind of nice- but I'm ready to stop losing! I actually as a woman said that out loud...I can't afford to drop another clothing size. I was a size 12, 2 years ago- I'm a 6 now and even some of those pants are starting to be loose.

Well I can't say how glad I am to have all of you. I'll be here a lot more as I begin this journey again. You're my sounding board!

Off to eat rice and chicken!
Susanna

[Reggie]

I also got this terrific condition from a flu that just never ended. I developed LC, chronic fatigue syndrome and chronic pelvic pain syndrome - both probably autoimmune related. That flu brought on lung and liver problems as well, but those cleared up within a few months. I've lost almost 40 pounds and my clothes are falling off.

Other than that, well, I'm a old geezer so we don't have much in common!

[tex]

Susanna,

Dr. Fine and his "Enterolab" are located in Dallas, TX.

When my problems started, at first, I thought I was having relapses of the flu. Then, since I was usually eating fast food, (such as fried chicken), during the workweek, I decided that I must be the unluckiest guy in Texas, because I was getting hit with food poisoning every week or two. It finally dawned on me that it must be something more than that, when the D started, and wouldn't stop.

The best bet for ice cream, in my opinion, is Breyer's lactose free ice cream. It's also corn free, which makes it the least likely ice cream to cause intolerance problems, that I'm aware of. However, like all ice cream, it does contain casein, and so I couldn't handle it, until after my gut healed. I'm not aware of any ice cream products that will work for casein intolerant individuals.

Wayne

[Beth]

Yep, I'm definitely off soy! I just wanted to see if I could handle it - the answer came back with a definite NO.

The D seems to have abated, but not the super-sensitive stomach. And like Susanna, I keep losing weight, too. I tried on a pair of jeans that just last year were too tight for me, and they're ridiculously big on me! Not that I mind - I just don't want to buy new clothes because I don't know how long this whole thing is going to last.

Thanks,
Beth

[artteacher]

Hagan-Daz and Breyers (or is it Dreyers?) have sorbets that are dairy-free. Ben and Jerry's has sorbet called "Jamaican Me Crazy" that tastes BETTER than ice cream.

Love, Marsha