TALK ABOUT CONFUSED!!

[desertrat]

Hello, all! A newbie here and very confused and distressed by all that has happened to me. Finding this forum has been a godsend for me. I have read a lot here but am still perplexed by a lot of things. If any of you have the time, I would love to describe my conditions and get feedback from the very knowledgeable and nice people here! Here goes:
I am a 56 year old woman, overweight (185 lbs.) Prior to August 6 2011 (funny how most of us know the exact time!) I felt fine!! But I will admit I was under a lot of stress, taking care of my elderly father and mother (full time job), the death of two brothers, trying to do immigration papers for my son-in-law, etc.
Then I had the mother of all periods, heavy bleeding and clotting. I experienced indigestion, loss of appetite, LOTS of anxiety, aches in wrists, ankles, pain in left side of chest, insomnia, dry mouth, etc. For some reason I immediately decided to cut out all sugar, soda, and crap food and go organic. I kept a fairly extensive diary of my diet and how I felt each day, which was horrible, by the way. I went to many doctors in the last 3 months, trying to figure out what was wrong with me. In order of tests:
mammogram--a scare, but came back ok
pap smear --another scare, but also ok
pelvic and vaginal ultrasound -- ok but slight enlargement of the uterous
hormones- showed low in progesterone, DHEA, etc, so I am now taking bio identiticals
Fed up with how I still felt and not getting help from regular doctors, I went to a specialist, well known in naturopathic measures and he put me on a ton of vitamins (20) had me go one a very strict diet (fruit, organic meat, veggies and nuts, thats all) and take so many homeopathic drops from everything to toxins, poisons, pesticides, etc, that I was completely overwhelmed! I could only do this for a month before I gave up from the sheer exhaustion of timing everything down to the minute he wanted me taking these supplements. All the while I am still taking various blood tests, most of them benign except for a low iron count. Still sleeping erratic, anxious, body aches and pains, exhausted and indigestion. I noticed around October that my bowel movements were changing, from brown to yellow green and getting softer. Bile? Finally a doctor examined by stomach and wondered if it was gallbladder problems. I did a gallbladder ultrasound - normal, no stones. The doc made me do a HIDA scan, which came back as dysfunctional, 26% functioning (above 35% is normal). This seemed to explain my pain under the ribs, and bowel movements. Of course, the docs are ready to yank the gallbladder out ASAP, of which I hesitated, wondering if it was truly necessary. By the third week of October, my bowl movements changed again, slowly to diarrhea. By the first of this month, it became watery, chronic, always immediately in the morning (complete evacuation) and few times through the rest of the day.
I finally went to a GI doc, had an endoscopy done that showed mild gastritis. I then did a colonoscopy which showed moderate diverticulosis in the descending colon and the remainder of the colon was normal. When the biopsy came in,
two days ago, the GI discovered I had microscopic colitis, or LC. He seemed almost giddy with delight(?!) told me to go on entorcort for three months and then things would be fine. Dumbfounded, I asked about my gallbladder and he said not to worry about it, that he was on the fence on whether it should come out or not. I asked about diet, and he said EAT ANYTHING, it didn't matter, and he told me not to take so many vitamins, only VIT D, C, probiotics. No calcium/mag, no digestive enzymes, no multi vitamins. Needless to say, I am discouraged.
My question(s) to all of you are:
1. Does anyone have MC and gallbladder issues at the same time?
2. Which one should I try to "fix" first?
3. Every blood test came back negative for things such as celiac, gluten and food sensitivities, (yet I was on a fairly strict diet, but not exactly gluten free), could food allergies be the problem?

I went to go get my prescription for entorcort, and I am loathes to take prescription meds ( I have never smoked, drank, and rarely took antibiotics or NSAIDS) because I am fearful of the side effects, but I am ready to try because of this watery diarrhea. HOWEVER, in the last day and a half, I've noticed that my watery diarrhea has lessened! I actually had a smaller amount of elimination and it was soft but formed! What the heck? I haven't started the entocort yet. What to do? I did take two immodium a few days before, but I have taken immodium before and it didn't seem to help then.
4. Is it possible that my diarrhea is stopping? Could I reverse into constipation with MC? Should I take entocort, or just wait?
Please, any and all comments are welcome! I just need advice, info, and feel this forum is the only place where I will get some really sound information. Thank you all, sorry for such a long message, but I am just at such a loss.

[Joseph7179]

I can only tell you what I did that helped. I also have LC. I did take the entocort. It is and was very good for me. I did do and still do the Gluten Free and Dairy free diet. It helped very much.. I did take 5000 units of Vit. D a day and I do sleep on my left side at night. That helped with the GERD.

I don't know much about gallbladder issues, but I suspect that could be part of your problem.

I would say that you will need more than 3 months of entocort. It just takes longer to heal. Try to reduce stress as much as you can and get 8 hours of sleep a night.

My advice is stay on this Board and you will learn much and get the support and help you need. Good luck. JMH

[sarkin]

Welcome, Desertrat.

The decision about Entocort is a big one - I was fortunate to be able to get my MC under control without it, as have many others here. And as Joseph said, many here have benefited enormously from Entocort, while they correct their diet and begin to heal.

As you may have learned by reading here, those blood tests for celiac & food sensitivities are not terribly helpful. A lot of us figured out our most critical food issues via testing through Enterolab. Gluten sensitivity and celiac are woefully underdiagnosed, unfortunately.

If you have been eating "low gluten" rather than "no gluten" - you would be amazed at the difference a teensy, occasional amount of gluten can make, if you are sensitive. You could try fully eliminating gluten (and dairy as well), and see whether your improving symptoms stabilize. (And then, if you're in doubt, you could re-test by eating gluten or dairy - I have only done that by accident, and will never do it on purpose - YIKES.)

I agree with the advice to take fewer supplements, while your symptoms are active, because they are full of ingredients that *might* be a problem - and why take the chance. The Vitamin D is important, and it's worth attempting to find one that is soy-free, just in case that turns out to be a problem for you. MC causes us to need more Vitamin D at the same time we're absorbing it more poorly from food - and at this time of year, the sun is not a reliable source for most of us (in the U.S.). The other important vitamins that are frequently malabsorbed include B-complex, most especially B12. In my opinion (and remember, I'm just an MC civilian, like you), it is better to skip the supplements while symptoms are raging, get things calmed down, and then carefully and slowly add them, one by one, starting with smaller amounts.

It is possible your diarrhea is stopping, and it's possible that it's because you dropped some of the supplements you were taking - there are a lot of 'inactive ingredients' that are not so inactive after all.

Please keep us posted - I hope your diminishing symptoms are a good sign that you're on the right track. If that's the case, you may not need Entocort to bring about remission... but it is good to have that option available.

Best,
Sara

[desertrat]

Thank you, Joseph and Sara. I'm not sure whether how I feel is due to gluten, dairy, and soy or not. I never ever had a problem with them before, that i know of. I never had indigestion, diarrhea or any other problems until Aug of this year. Is it possible to become gluten, dairy and soy intolerant almost overnight? My trouble is that I can't seem to differentiate between whether my symptom(s) at the moment is a gallbladder symptom or a MC, or both! And I am so confused as to my diet, because I no longer know what to eat. Oil, no oil? Fruit, no fruit? The vitamin D I do take is totally pure, so there are no fillers, or dairy, wheat, soy, etc.
Sara, if I may, you said the decision to take entocort is a big one. May I ask why?

[nancyl]

I agree with Sara about the supplements. I am one that does takes them and was taking quite a few when the MC started at the advise of a naturapath. I now only take Vit D, Vit C, Multi every other day, calcium, fish oil, L-Glutamine, and probiotics. I was doing really good for a while and decided to try a protein powder that contained a lot of vitamins in my smoothies and again I was in the bathroom 3-4 times a day. I do not take that now either. I went on Entocort last April and am now slowly weaning off. Meanwhile I am GF, DF, SF, and mostly egg free. I just use them in cooking or baking. For me, Entocort gave me back my life.

Good luck with your decision and look around the website a bit more. You will discover alot of answers to your question.

Nancy

[sarkin]

Desertrat,

I never had any digestive problems before MC. (I used to wonder about people who had purses and medicine cabinets full of OTC digestive products!) It does indeed seem to become intolerant to gluten/dairy/soy virtually overnight. Something sets it off, and then the underlying genetic reactivity to gluten is switched to "full blast" and doesn't seem to get turned off again. For me, I believe the change may have been somewhat more gradual - a lot of my complaints of middle age have gone away with my new diet, so I believe they were actually symptoms of problems with what I used to eat... but the absolute inability to eat gluten came on more like hitting a brick wall.

Many of us do well limiting the amounts of oil when our symptoms are active. You don't have to eat a fat-free diet, but excess oil definitely seems to be troublesome. Similarly, eating only fruit that is cooked without the peel will reduce your risk.

I said that about Entocort partly because you expressed some reservation about taking meds, which is a concern I share. In addition, you seem to be doing something right, and maybe getting your symptoms under control. When you take Entocort, it can 'mask' some food reactions, because it is very good at suppressing inflammation (which is beneficial, but it is not the same as healing it) - and if you continue to eat something your body responds to in an inflammatory way, those symptoms will return when the Entocort is reduced and eventually discontinued. You have to take Entocort for a while for it to do its job, and then you have to taper off it patiently, so your symptoms don't "bounce" back. Not everyone can tolerate it - but it has a much better track record than most other drugs, it seems - far better than Pepto Bismol, which seems so benign but isn't always tolerated well at all (it did help me, greatly).

Those are my Entocort thoughts. If I had not been able to slam the brakes on my MC crash, I would most certainly have been open to trying Entocort, based on the help it has been to so many here, while causing trouble only for pretty small percentage of those who have tried it. I tend to be a no-meds kind of patient - I'm not taking any other Rx, and rarely take anything OTC. (But I do love my supplements.)

I hope that helps you with your own thinking - sorry I was not more clear. I didn't mean to make it sound scary. Maybe it is better to say that if I were to have a return of MC symptoms, and found myself unable to rein them in, I would consider Entocort - but *for me*, that would be a big decision.

All my best,
Sara

[desertrat]

Nancy, thank you! One question: you said to look around the site and I would find answers to my questions. However, I don't seem to. Am I doing something wrong? I go to the search program but my questions come up blank. Is there a forum that shows what are the right and wrong things to eat? All I found was different types of names that wheat/gluten can be listed on ingredients. Thanks!

Mandy

[desertrat]

Sara, thank you!!! May I ask, you said you were able to "slam the brakes" on your MC crash. Could you explain? How did you do that? And, if my diarrhea only truly started a few weeks ago, and I was, by sheer luck, diagnosed with MC at almost the same time, do you think my MC was just recently activated? Could I possibly be in the very first " early stage" of beginning MC?

Mandy

[tex]

Hi Mandy,

Welcome to our internet family. I'll try to answer your questions to the best of my knowledge.

1. Does anyone have MC and gallbladder issues at the same time?

Yes, many of us do, because MC can cause problems with virtually any organ in the body. If you are having gallbladder issues, the pain should begin soon after eating a fatty meal, and diminish after 6 or 8 hours. The pain should be just under the rib cage, and you should be able to feel it in both front and back.

2. Which one should I try to "fix" first?

Fix the MC first, because when you get complete control of your MC, you will probably find that most, (if not all), of your other issues will be resolved, also. Please be aware that the damage from MC cannot be reversed overnight, though - it takes months to years to completely heal the gut, (GI docs have no idea that it takes that long, that's why they tell you that after a few of months on Entocort, "things will be fine". They will indeed seem fine, but as soon as you discontinue taking the Entocort, your symptoms will come right back, because the Entocort only suppresses the inflammation - it can't prevent it from reoccurring, as long as you continue to eat foods to which you are sensitive.

3. Every blood test came back negative for things such as celiac, gluten and food sensitivities, (yet I was on a fairly strict diet, but not exactly gluten free), could food allergies be the problem?

Definitely. The blood tests are totally worthless for determining the type of food sensitivities that we have. The blood tests will only detect fully-developed celiac disease. Only the sensitive stool tests offered by Enterolab in Dallas, TX will reliably detect antibodies to food sensitivities in the digestive system, because that's where the antibodies are produced, (in the intestines).

4. Is it possible that my diarrhea is stopping? Could I reverse into constipation with MC? Should I take entocort, or just wait?

Good question. If you don't have D, IMO, there is little point in taking Entocort, because it will probably cause you to have constipation, in the long run.

I'm not sure whether how I feel is due to gluten, dairy, and soy or not. I never ever had a problem with them before, that i know of. I never had indigestion, diarrhea or any other problems until Aug of this year. Is it possible to become gluten, dairy and soy intolerant almost overnight?

Dr. Fine's research shows that the genes that predispose to MC also predispose to gluten-sensitivity, so that when MC is triggered, food-sensitivities are also triggered in most patients. So yes, it can happen virtually overnight.

And I am so confused as to my diet, because I no longer know what to eat. Oil, no oil? Fruit, no fruit? The vitamin D I do take is totally pure, so there are no fillers, or dairy, wheat, soy, etc.

We have to avoid the foods that we are sensitive to, and we have to try to minimize things such as fiber, sugar, and especially artificial sweeteners. Most fruits contain too much sugar, (fructose and sorbitol), and too much fiber. Any vegetables eaten should be in small to moderate amounts, peeled, and over-cooked, to aid digestibility. The less fiber, the better, because it tends to ferment in our colon, causing gas, bloating, cramps, etc. Sugars can do the same thing, because the enteritis causes the loss of our ability to properly digest them. No raw vegetables or fruit, except that most of us, (not all), can tolerate bananas, as long as we don't overdo it, and cause a fiber problem.

you said to look around the site and I would find answers to my questions. However, I don't seem to. Am I doing something wrong? I go to the search program but my questions come up blank. Is there a forum that shows what are the right and wrong things to eat?

Sorry, that's my fault. In order to prevent spammers from joining the board and being able to mine personal information, I have a minimum number of posts requirement, in order to be able to use the search function, see other members E-mail and Personal Message addresses, etc. After you write one more post, you will be able to utilize all those features.

Again, welcome to the board, and I hope that you can find the solutions that you seek here. (I am also one who has never taken any meds to control my MC symptoms, and I've been in remission for almost 8 years, now, by diet changes alone.

Tex (Wayne)

[sarkin]

Mandy,

It doesn't seem to be an "early stage" kind of thing, strangely. Good question. I believe that by the time MC shows up, sometimes we have accumulated significant damage to the gut (and often to other body systems - gluten can affect thyroid, nervous system, skin, joints, and much else besides). At least that's the way it seems to me. And I'm not sure whether that is important, as there is no 'cure' for MC - just finding the way to achieve and maintain remission, via whatever combination of diet and medication is right for you.

Some of the things that can trigger MC include vaccines, a stomach bug (esp. while traveling?), antibiotic use (some riskier than others), and lots of other medications, including NSAIDs (aspirin, ibuprofen, etc.), PPIs, and SSRI antidepressants. Stress can also play a role. Maybe one of those things is part of your "MC profile?"

You are indeed lucky to get your diagnosis quickly! Congratulations.

I stopped my MC crash after about a week of extreme D, by eating nothing but homemade plain chicken soup, bananas, and applesauce, and taking a therapeutic dose of Pepto Bismol (8/day - I cut down and stopped them a little sooner than I needed to, I think). I dropped gluten right away, but that alone did not stop the symptoms. I was very dehydrated, and losing a pound a day, and just about everything seemed to cause me to react. For me the Pepto was like a miracle drug. I was surprised, and grateful. I wasn't sure I was going to be able to manage it without an ER visit.

Hope this helps - we are all different, but it does help to follow others' stories, and see what might apply.

You might go to the main index http://www.perskyfarms.com/phpBB2/index.php as a way to start finding your way around. I found it very confusing in the beginning, but now I believe that was the 'brain fog' of my extreme reaction to that last gluten I ever intentionally ate (or will eat) in my life! It's a known symptom, and it's horrible!

[desertrat]

Tex, thank you! However, I am confused. Are you saying that MC came first, and then affected the gallbladder? Or did they both appear at the same time? Could MC affect other organs?

[tex]

It's difficult to guess which came first, but when the digestive process heads south, any other issues that might be brewing in the wings are adversely affected, and tend to be more obvious. MC usually involves the leaky gut syndrome, and that results in peptides leaking into the bloodstream, and being carried all over the body, where they may be deposited in various organs, joints, muscles, etc., causing inflammation and pain. Gluten can even cross the blood/brain barrier, and that's how it causes the neurological symptoms that so many of us have, sometimes resulting in permanent damage, if gluten remains in the diet long enough. For example, I have peripheral neuropathy, balance issues, and gluten ataxia. Most neurologists still don't recognize that gluten can cause these issues, but leading researchers have proven that it happens.

Tex

[desertrat]

Tex! When I first went to the naturopath, they gave me a vitamin medicine called Sustain. On the package it stated it was for leaky gut! The doc never said I had leaky gut, but I was taking the powder, nasty as it was. Can you explain leaky gut? Is there a test for it? Could MC people have leaky guts now and that is why a lot have flare ups? If your gut is leaky, how does one fix it, if one is one such a strict diet?

[Robbie]

My doctors all said "you need more fiber" when I was looking for help with my newly worsened chronic D problem last year. I'm sure they thought I did not get enough, but, honestly, I was a good little doobie and was already getting more than is recommended. But I increased my intake anyway and it only made things worse. So, after I found this board and read about cutting back on fiber I tried it. I noticed an improvement right away! Now I hardly ever eat fruit - a bite of something here and there or a small serving of applesauce. I eat only a few kinds of veggies, and only as long as they are cooked to death. So glad I found this forum :-)

[tex]

Leaky gut can be caused by several things, including excessive use of alcohol, excessive use of sugar, candida overgrowth, diseases such as cholera, and gluten-sensitivity. These issues tend to promote the production of a protein known as zonulin, (in the mucosa of the intestines), and zonulin causes the tight junctions between the cells of the mucosal surrface, (enterocytes), to open too wide, and remain open, allowing medium-length amino acid chains, (peptides), from partially digested food to enter the bloodstream. The longer the condition persists, the easier it becomes for the tight junctions to open, and the longer they stay open, thus making the condition sort of self-perpetuating.

If you have headaches, especially migraines, aching joints, brain fog, etc., you have a leaky gut. I have no idea what "Sustain" might be, but the only permanent fix for it is to avoid the foods, (or kill the candida, if that's the cause), that are causing it.

Those of us who have only diarrhea, with no pain, or any other significant other symptoms, do not have leaky gut. The leaky gut syndrome doesn't necessary cause MC, but it sort of goes along with it, and it certainly makes the clinical symptoms worse, and it can cause damage in other organs outside the digestive tract.

Here is a good explanation of the phenomenon:

http://dogtorj.com/what-is-food-intoler ... leaky-gut/

Tex