Hello, An introduction

[eargirly]

Hello all....Happy to have found you and sad that I have to. Bittersweet, I suppose. ;)
I am 43 female, 11 years post vertical banded gastroplasty, 8 years R-N-Y post revision surgery......very successful at that. 200 pounds lost and maintained. Celiac disease negative. I have no gall bladder and of course, no functional small intestine to speak of from the gastric bypass revision surgery. I have had c diff four times since 2008 due to -mycin antibacterial medications (I warned them after the first time.......but they wouldn't listen) The first one is probably what set me on this course, states my very wonderful GI specialist. I saw him the first time I had the c diff and was hospitalized from it and he actually did the biopsy at the colonoscopy at that time and found the MC, but then it was considered to be secondary to the c diff. He had no idea I had had the c diff more times or these other bouts of chronic diarrhea since. I kept going to my surgeon for them as I related them to no gall baldder and secondary to my bypass surgery. This last bout has been unbearable and I have lost forty pounds in three and a half months and it is unlivable. I was finally unwilling to accept the "there are just some things you have to accept" Dx from my surgeon, so I chose to go back to my GI. He happens to be a long time friend from JrH and HS, so this wasn't an easy topic to go discuss with him , but I figured, wth, suck it up and just speak freely. I know how smart he is afterall.
So I went in and explained to him the things I observed. Explosive, watery yellowish diarrhea that is foamy almost. Horrid smell, not one of c diff, but distinct. 10-15 times a day. Always with massive gas behind it. The more water I drink to hydrate, I don't urinate more, I have diarrhea more. I eat and eat and lose and lose. My eyes are sunken and hollow. I have pernicious anemia since birth. I take B12 shots every four days.....up from every 7 just this past spring. I have had b12 shots for 7 years now. My Thyroid is functionally dead. I eat a Paleo diet, organic or local farmer's market, avoid dairy, wheat free, no processed foods, grass fed beef (we raised our own steer), venison, uncured bacon, everything I know to do right. The only thing I DO know that makes it worse is RICE.
So, the kind GI told me right away that from the biopsy he did years ago told him that I had MC. SImple. It was considered at that time secondary to the c diff and he had no idea I had the troubles since. He wished he had known. He was so sorry I had been suffering all this time. He has put me on Budesonide and I am three days into the medication. It is starting to help with the amount of trips I make to the restroom. Still some gasiness. But less output volume-wise. I am a correctional officer in an all male, maximum security prison of 3700 inmates and I work in the high security section. I can't afford to be weak as I am and not on my best guard. I am hoping to gain some strength back and get rehydrated. I just want to feel better. Fell like I am losing my mind sometimes. No one reallly 'gets' how badly I feel because I go into work each day with my work face on. But when the inmates start to ask what kind of crack I have been smoking because of all the weight I have been losing, that is a bad sign........ They do notice everything....More than my 'rank'. So, I just want to find some help, some understanding (because no one else really gets it....if you aren't bleeding out the eyeballs, it mustn't be too bad....), and maybe some ideas to do some better lifestyle changes I haven't thought of :) Thanks for letting me speak!

[Gabes-Apg]

your journey to life with MC, is similar to many. (pretty sucky hey!)

I am a 44 year old female, the MC was diagnosed when i was 40, I have had a history of IBS and digestion issues since birth.
Alot of what is discussed here will help you. It can be tiring to keep up the 'all is ok work face' each day.

the fastest road to success;

- is eliminating/minimising triggers, ie food, drinks, activities, any stresses. (which you have started)
- figure out an eating plan that suits you, eating low inflammation low histamine meals to allow the body to heal.
- check your Vit D, Folate, Iron levels and take supplements for this if needed. if you have pernicious anemia, highly recommend using sublingual supplements, (negate the need of the gut for absorbing key supplements)
- accepting the reality that there is no quick fix, magic cure, getting to a good level of minimising symptoms, allowing good healing will take time, patience, tenacity.
- for now, watch fibre intake, paleo concepts of nuts etc might be a bit too inflammatory for your damaged gut.

hope this helps.
At first, reading posts and discussions can be a bit overwhelming, take your time. The MC journey is about 'progress... not perfection'

[UkuleleLady]

Hi Eargirly and welcome to the MC forum.

I sympathize with the lack of understanding you've received from others who just don't get how sick you really are. We do know, however, that this can be a debilitating, life altering disease.

You've come to the right place for learning. Budesonide wil hopefully help your body to stop attacking itself while you work on diet and reducing stress levels. I have to admit, from reading about your job, it sounds very difficult, very stressful indeed, even without having to be on your guard all the time. You must be a very brave woman. I admire you.

Gabes has good advice about your diet. Paleo is definitely a great start but also seriously consider over cooking any vegetables you eat and eliminating fruit for the time being. Fiber is not your friend right now. Many of us can't handle nuts wether due to alllergy or their fiber content. Dairy (casein and lactose) can be disastrous for many. I honestly don't know if I'll ever be able to eat it again.

I wish you the best of luck and encourage you to read as much as you can here. This site may have saved my life. I am doing pretty well lately but it is a delicate balance and I have to be vigilant about managing my stress and my diet.

Nancy

[tex]

Hi,

Welcome to the discussion board. You've really had a tough time of it, and I too hope that you can find the help you need here, so that you can fine-tune your treatment program in a way that will allow you to get your life back. As you have discovered, despite negative celiac test results, virtually all of us are at least as sensitive to gluten as the average celiac.

Gabes and Nancy have already offered some excellent insight into treating this disease. Since you're already on a paleo diet, it's possible that there may be only one or two offending foods remaining in your diet that are preventing you from reaching remission. Or maybe your diet is somehow being cross-contaminated. Are you aware that in order to control our symptoms by diet alone, we have to avoid our food sensitivities (especially gluten) 100 %? Even tiny trace amounts can kick us out of remission. The small amounts in many/most vitamin supplements, and/or medications, for example, are enough to cause most of us to react. And products such as toothpaste, have to be carefully selected.

Besides antibiotics, many other medications can cause MC, and the list includes some of the most commonly-prescribed medications, such as NSAIDs, PPIs, SSRIs, SNRIs, statins, beta blockers, bisphosphonates, and others. And even medications such as thyroxine often contain ingredients that can cause us to react (gluten, casein, or soy derivatives).

The budesonide should bring relief of most of your symptoms as long as you are taking it. Please be aware that because it will mask your symptoms, you will not be able to detect many food sensitivities until the dosage is reduced to a low level. As you wean the dosage down, with any luck at all, you should be able to track down any remaining food sensitivities in your diet, so that by the time the budesonide regimen is completed, you will be able to maintain remission by diet alone. At least that's the plan, barring any unforeseen obstacles.

For many of us, mast cell issues tend to complicate our recovery, and eventually we find that even though we are doing everything right, we are still having symptoms. When that happens, taking one or more antihistamines can often do the trick, and get us to remission. This can be especially important when weaning off budesonide, because many patients relapse, especially if the budesonide treatment dosage is reduced too quickly during the final stages of the tapering process. The right antihistamine can often be worth its weight in gold at that point in our treatment program. And this is something that you will never hear from your doctor, because they are unaware of it.

Again, welcome aboard, and please feel free to ask anything.

Tex

[eargirly]

Thank you, I have definitely spent a better part of the day reading and reading here. Read over the newbie stuff.....thank you! I don't eat nuts mostly...don't like much. I do have many seasonal allergies, North Central Texas is a great place to have them, as they converge here from all directions in the pollen and mold area from the winds. I do take a Zyrtec daily. Claritin doesn't help me. I do take allergy immunosuppression shots (second year). I don't wear makeup and I make my own, all natural moisturizers and use I have a Master's Degree in Audiology and my husband is an RN, so luckily, it is easy for me to grasp the medical aspects of it all. My iron levels stay strong with the B12 shots and I do supplement sublingual when I feel I need a bit of extra between shots as they are a little differently acting as well.

VitD is a tough one for me. I tried taking it once before through my surgeon and did not tolerate it well at all. It was the very high dosage though that you do for ten weeks and then off for the rest of the year. I may try the lower dosing and every day thing. Could have a better reaction. I do get A LOT of sunlight as I am in Texas and work the gates often at the unit. Leaving me in the sunlight for 12 hour shifts four out of eight days of the week quite often. Do you think that this is enough? When I have been tested (every six months at regular labs) It has always been well in the normal range. Is that okay for us? Or do we need more? I can't really tell from what I have read here. Are people trying to get it higher than normal or just getting it into normal range??

I SO appreciate the welcome and the information :) Thank you, thank you! I look forward to better days ahead and to learning so much. A long journey to come and I am up for the task.

[eargirly]

Hmmm....Thanks for the info on the thyroxine. I do take. I also take Pristiq.....an SSRI. No NSAIDS, they kill my tummy. ack! Tramdol if I have pain. I have done gluten free before 100% free for six months and no difference. Introduced slowly and cut anything that triggered. So I have gone that route already. Did that when I went wheat free about a year ago. My diet is pretty limited already from the gastric bypass, don't eat fruits and I am dairy free probably 90%. Hard cheeses don't bother me and I make my own mozzarella that doesn't bother me. That is made from raw dairy from Jersey cows that are grass fed and antibiotic free. So I feel like I do a lot of good things, but the help on certain med triggers and now knowing that about an antihistamine will help. I am allergic to PCN and pseudoephedrine, but not to benedryl. So I could go that route if needed. Not sure if doc would agree to prescribe Armour for my thyroid or not. I can always ask :) Y'all are already such a help to me......

A big Texas thank you! (and my job is let's say....interesting.... ;) But not as scary on an everyday basis as shows make it seem. Maybe every other day...hah) just kidding..

[Gabes-Apg]

You are very lucky to have a husband RN!

the slight hitch with spending time in Sunlight, and the UV conversation in our bodies to Vit D, is not simple

-firstly you can not wash your skin with soap for 24-30 hours after exposure, as this interrupts the conversion
(hence why vit D deficiency was not an issue 100 years ago when people only bathed every 3 - 5 days)

- secondly, age and health conditions (fatigue and inflammation type thing) can also hinder bodies ability to convert the UV to Vit D in our cells.

Keep monitoring your levels. and make sure you are in the middle upper range of the testing range.
this will help protect you from issues such as osteoporisis and bone density, and teeth issues later on.
Years of ongoing problems with your digestion, show up later as issues with teeth, bones, etc

From what you are doing with the natural moisturisers and eating plan, you have eliminated most of the major triggers, if you are still having D then there is something else in your environment that is causing issues. after Gluten and Dairy, and reducing fibre, the next 'most popular' triggers known via this group are eggs and/or soy.

alot of organic and natural products have soy. (food and hygeine products)
eggs are sprayed with soy based vegetable oil to stop the shells from permeating (last longer)
the same for veges (and even organic veges) can be sprayed with soy oil to help them last longer in the shops

if you have some brain cells left today, start reading the section about mast cells/histamines. If you have been having the allergy shots, this topic may explain some of the issues.

better days are ahead!

[eargirly]

Yeah, I had had c diff in the spring until end of June and my GI said that he thinks my body was lying in a state of wait to just work over time and fight itself for a while.....until it got bad enough at the the end of summer to go full blown again. Seemed plausible. I never really ended with the D after the c diff in June, it just stopped being c diff. Eggs.... I eat them straight out of the hen from the farm....but soy....i avoid IN foods, but can't determine if it isn't ON foods. I always wash my veggies with vinegar rinse, but it is possible. I am going to have to be much more careful. I abhor soy. Going to hit mast cell and histamines tomorrow. I am off for fours days now before I go back to work. :) yay! I have some time to research and hope to get to feeling up to this. Has to be something....And having an RN husband doesn't mean much other than I helped him study for it all. He didn't notice I lost the 40 pounds and didn't know why I had gone to the doc at all. (he was in his last semester of school this semester and stressed I guess) It just means I could have the RN myself. ;)

[DJ]

I am hoping to gain some strength back and get rehydrated. I just want to feel better. Fell like I am losing my mind sometimes. No one reallly 'gets' how badly I feel because I go into work each day with my work face on.

Hi eargirly,
I totally get how badly you feel. I remember asking myself if I was going to die. I was diagnosed May 31st and placed on Entocort. I'm moving forward slowly and steadily and I'm doing better. I no longer use bathrooms on 4 different floors at work so that people won't notice how sick I am.
Some people on this forum don't do well with sugar but Gatorade helped me a lot. Once diagnosed, I began Entocort and immediately started eating almost 100% meat - hamburger, steak, pork, lots of bacon, fish (not canned), shrimp, - and Gatorade. The Gatorade helped me to get the cobwebs out of my brain. What a relief it was to tone down the diarrhea and clear my head! When I began feeling better, I started adding foods one at a time in small quantities. If I wanted to have a lot of something I had meat.
As you add foods, consider the fiber content. As you are hearing from others, go easy on fiber and eat only well-cooked veggies in limited quantity. Try adding sweet potato when you can. I found millet bread that works well for me. I was able to eat canned peaches after a while but not right away. You said that cheese is ok but I think you should ditch it for now.
There is a list of common food allergies that you might want to consider. There is also testing available to determine your sensitivity to several foods. The test is expensive but you would get answers and a jump start.
Eat like a mountain lion. It will help

....Picture a nice big salty hamburger with bacon on top.[/quote]

[tex]

I have done gluten free before 100% free for six months and no difference.

The problem is that we tend to react to any and all of the foods to which we are sensitive. That means that removing them from our diet one at a time will do little good, because we may not be able to tell the difference as long as any of them remain in our diet. IOW, you were probably still reacting to another food when you removed gluten from your diet.

But gluten is the worst, because anti-gliadin antibodies have a half-life of 120 days. (There are several hundred different peptides in wheat, rye, and barley, to which celiacs react, but the alpha gliadin peptide is the most common one to which most people react.) And the immune system continues to produce antibodies for years, at a steadily-decreasing rate after gluten is withdrawn from the diet. That means that most of us will continue to react to gluten for months (and in some cases for a year or more) after it is removed from the diet.

The stool tests offered by EnteroLab (discussed below) are so sensitive that they can reliably detect anti-gliadin antibodies in stool for at least a year after gluten is withdrawn from the diet, and in most cases they can detect them for at least 2 years after gluten has been removed from the diet. By comparison, the classic celiac screening blood tests that doctors use to test for anti-gliadin antibodies in the blood, will only detect fully-developed celiac disease (after small intestinal damage is extensive — at least a Marsh 3 level of damage), and they can no longer detect the antibodies several months after gluten is withdrawn from the diet, even though the damage to the small intestine usually takes 3 to 5 years to heal (for adults — kids heal much faster).

Regarding vitamin D, while 30 ng/mL is considered to be an adequate vitamin D level, and if your level is above that, you should be OK. Most of us like to keep our vitamin D level in the 40–60 range, or above, because it helps to minimize problems with issues such as GERD (which is commonly associated with MC), and it seems to give our immune systems a boost so that we have better resistance against viruses, and most importantly, it helps to prevent the development of additional autoimmune type diseases, something that is also associated with MC.

Note that prescription vitamin D (the 50,000 IU doses you mentioned) is always in the form of vitamin D2 (which is the inactive form of vitamin D). The body cannot utilize vitamin D2 until it has managed to convert it into D3. Some people are unable to make the conversion (especially those who have compromised digestion). Over the counter vitamin D is always in the form of D3. Why doctors choose to prescribe the inactive form is anybody's guess.

If you have problems with vitamin D tolerance, it might be because of other issues. For example, we have at least one member who has hyperparathyroidism. She cannot take vitamin D until after she has surgery, because with hyperparathyroidism, vitamin D supplementation can lead to excess calcium in the blood, and excess production of parathyroid hormones, which can cause all sorts of adverse effects. See post number 5 (by LindyLou) in the thread at this link:

http://www.perskyfarms.com/phpBB2/viewtopic.php?t=19210

The inert ingredients in thyroid supplements vary by brand, so it's certainly possible that the one you are taking is safe. Most of us here are sensitive to gluten, dairy (casein), and soy, and some have many other sensitivities. But that doesn't mean that you are necessarily sensitive to any or all of these foods. If you can justify the cost, the surest way to find out which foods are actually causing the production of antibodies, is to order stool tests from EnteroLab in Dallas. We have found their tests to be by far the most reliable and accurate tests for determining food sensitivities, when compared with any tests available anywhere in the world.

https://www.enterolab.com/StaticPages/TestInfo.aspx

Tex

[Leah]

Welcome! Tex and the others have pretty much covered what I was thinking. You have done a great and admirable job with your diet, but maybe there is still something you are ingesting that is preventing you from getting better ( it could be eggs or one of the meats you are eating). if you can afford it, the Enterolab tests can give you a lot of answers.

But I have a sneaky suspicion that it's the Pristic that might be the big culprit. SSRIs have been known to CAUSE MC. Some on this forum have switched to Wellbutrin ( ?) . It seems to be a safer antidepressant for MCers.

Good luck and keep us posted on your progress
leah

[eargirly]

So, Tex, are you telling me that the Celiac test that is generally done is tested from the small intestine output? Interesting, if so, because I have no functioning small intestine....must research. I am going to look into the EnteroLab thing and consider this for sure. I have so many limitations on my diet due to foods I know I can't eat or tolerate from the bypass, that I always felt I was doing a great job at keeping my diet clean

I can't imagine why doctors would give us this VitaminD2 that is ineffective. hah. So I am going to go back to square one there. I can easily supplement with D3 if I can tolerate it and keep my levels higher than the normal midrange for adults.

I figured it up last night, and in 2013, I spent 4 months fighting c diff and now almost 4 months fighting what is now known to be MC. The other months, spent recovering and never fully on my feet. SO it has been a year of poo for me. And I have to do my research and you all are so helpful already!@ I have to get my hands on this book Tex wrote and delve into it!! :) I love to research everything to its fullest and know what I am dealing with so I can do the best for my body. Thank you for the great starting points! I'll keep you posted

[tex]

So, Tex, are you telling me that the Celiac test that is generally done is tested from the small intestine output? Interesting, if so, because I have no functioning small intestine....must research. I am going to look into the EnteroLab thing and consider this for sure. I have so many limitations on my diet due to foods I know I can't eat or tolerate from the bypass, that I always felt I was doing a great job at keeping my diet clean

A celiac diagnosis by conventional criteria could be a bit tricky in your case. Here's the way it works. Most GI docs will not do an upper endoscopy to confirm villus atrophy in the small intestine unless the blood tests are positive for caliac disease.

But as I mentioned in the previous post, the blood tests are virtually never positive unless the damage in the small intestine is extensive enough to qualify for a rating of at least a Marsh 3 level of damage (widespread and major villus atrophy). Any stage with less serious damage will almost always result in negative blood test results. In a special situation such as yours, there's no telling how this would affect the diagnostic criteria. And when the doctors don't have an official set of diagnostic criteria that's applicable, they are simply stymied, and unable to diagnose anything. That's the case with non-celiac gluten sensitivity, for example. Currently, there is absolutely no way to officially diagnose non-celiac gluten sensitivity. Doctors now know (finally) that it exists, but they have no way to diagnose it, because they don't have an officially-approved test that will diagnose it.

And the reason why they don't have an officially-approved way to diagnose it is because of plain old professional snobbery. Over a dozen years ago, when Dr. Fine developed his stool tests and patented them, and created EnteroLab, he decided to offer his tests direct to the public, over the internet. Up until that point, the medical journals were accepting his research articles for publication, and you can still find many of them in the literature online.

But offering lab tests direct to the public (which means cutting out doctors) infuriates doctors faster than anything else in the world, and so his decision naturally made them absolutely livid. He was immediately blacklisted, and his publications were no longer accepted for publication. Of course that's a "backroom", "under-the-table" policy, because if the public were aware of it, such unprofessional behavior wouldn't go over very well. And of course, most doctors refused to recognize his tests as valid, (even though they are patented, and his lab is fully accredited by the state of Texas).

Today, more and more doctors "who get it", that is to say, doctors who recognize the role that food sensitivities play in digestive diseases and overall health in general, are beginning to accept Dr. Fine's tests and a few even recommend them. But these are typically not mainstream doctors, because the upper echelon in the medical community (members of the Good Ol' Boys Club, who control the decisions about who gets published and who doesn't), will never change, unless they are forced to change by unusual circumstances.

Whether not you (or any of us, for that matter) actually have celiac disease (or an official diagnosis of celiac disease) is a moot point anyway, because if we have MC, then our odds of not being gluten sensitive are quite low, IMO. IOW, if we treat the MC, then celiac disease will automatically be controlled, as well.

You're in a situation somewhat similar to me. I don't have a colon, not any of it. In fact, they even removed my cecum and part of my terminal ileum (small intestine), in one chunk. The surgery was not due to MC, in case that's what you're thinking — it was necessary because of a rare bleeding disorder due to a genetic defect. Anyway, technically, according to the official medical description of microscopic colitis, I can no longer possibly have MC, so I should be symptom free, regardless of what I eat. I wish!

The truth is, similar to celiac disease, MC affects the small intestine just as it affects the colon, so the surgical removal of my colon made no changes in the diet that I can tolerate. In fact it further limited my diet, because now (with an ileostomy), I can't eat any significant amount of fiber at all (because of the risk of obstructing the stoma). I've been in remission for over 9 years now, and before that surgery (not quite 4 years ago) fiber was not a problem. One could write volumes about what the medical community does not know, regarding MC. And of course, that's one of the main reasons why I wrote the book.

Sorry to get carried away, but some of the games played in the medical profession are very troubling. They might be funny, if they didn't hurt so many patients with some of their more asinine policies.

Tex