Attn newbies or anyone struggling....

[Lily31]

I am new to the site; thanks for the opportunity to join and for this very informative post. I was diagnosed with MC just over 7 years ago. I was extremely fortunate in that I was diagnosed fairly quickly, given a course of budesonide and went into remission for nearly 5 years. However, for the past 18 months or so,it has been a struggle. I was also diagnosed with malabsorption of bile salts, although I was only informed of this 18 months ago, but I think that was diagnosed at the same time as the MC. Blood tests for celiac and thyroid negative, but realise now after reading posts here, they might not be worth the paper they're printed on. I was given Pentasa at last hospital visit and told if this didn't work, we could try Imuran. Pentasa was a disaster; took dreadful D whilst overseas and couldn't get help. On return, spoke to GP who put me on another course of bidesonside, what a relief. However, have lost so much weight over the past 18 months, but so glad to be eating again. This will be the 3rd course of budesonide in that 18 months. In between, I took 2 sachets of questran daily. Was given Bendroflumethiazide for high blood pressure 2 years ago and have asked 3 different hospital consultants if it could be the cause and was given emphatic 'no's' on each occasion. I have stopped that medication to see if they could be the culprit. Has anyone been lucky enough to have had remission for 5 years and has anybody had problems with this blood pressure medication? Apologies for the rant, but it feels good to be able to write it all down. With many thanks and best regards to all.

Hello there to all the recent newbies!!!
This info may be helpful to others who are struggling.
I wish I could respond within your threads, and make it a bit more personal, albeit non mc type health issues have me not being able to do this.

Some mc basics and essentials.....
NB. I used minimal meds post Dx, with a strict low inflammation, gut healing diet and wholistic therapies, my MC was in remission in under 2years. What the wonderful people on this forum are saying is the real deal, no bullshite!

- there is no right way or wrong way to manage /live with mc. There is your way.
What works for one may not work for another. Listen to your body, keep a journal, the answers are there.

-whether it is C or D, or if it is pain /bloating/gas etc. all of. This is inflammation. Inflammation damages the gut, long term inflammation leads to leaky gut (search for leaky gut on the archives or on google) it also means that the ability to absorb nutrients is compromised ( either from food or supplements)
There is no magic quick fix for inflammation caused by mc.
You have to eliminate/minimise any and all triggers.
You have to follow a lifestyle and eating plan that minimises inflammation
As we age, and the longer one has chronic symptoms, the bodies ability to heal gets harder.
It takes time for the body to heal..... Be patient

If you are have symptoms, you are having contact with a trigger. You won't get better until you eliminate/minimise that trigger....

- mast cell /histamine is very common. When you have some spare brain cells, do the reading about this topic.

- yes gluten is a very common irritant ?90%. Dairy, soy is an irritant for ?70%. Eggs, nitrates, sulphides are an irritant for ?50%.
If you are having symptoms, bang for you buck, remove these ingredients and within weeks you are likely to confirm if it is an issue or not.

-not all triggers relate to food/ingredients. It can be stress (physical, mental, emotional), it can be environmental; season changes, pollens, chemicals, mould.
Things like hormone changes, thyroid etc can also be a trigger.
Just to name a few

- finding a good doctor /gi is rare. It is mostly an outcome of the health systems within our countries, not necessarily that doctors are bad. The published info on things like mc is outdated and incorrect. For most, informed self management works best.
Research, ask questions, and make your own decisions. Listen to your body, don't reject your doctor, we still need them, just have realistic expectations of what they and the health system can do to help you.

- living with mc can be crap! If you are bulking at sacrifice or changes suggested by these wonderful people, do some mental/emotional reading/work on transition and change.
It may take months if not years, to sort out your mc management plan.
There will be progress, set backs (which are learnings)
It may take every ounce of courage, patience, tenacity that you have...
All of which is definately worth it!!!!

Intermission time!!!! Deep breath. Shake your hands. More deep breaths.
Pace yourself......

- highly recommend checking your vit d levels, If money is tight, this is the must have supplement. You need good levels of vit d in the cells of your body to absorb nutrients. If you don't have good vit d3 levels, you are not absorbing nutrients from foods or supplements. Search the archives for vit d3, the articles and reading on this topic is worthy of your time.
NB, jumping in the sun for an extra 20mins per day won't solve this issue....

Linked to my saying, there is no right way or wrong way.... What each individual does or doesn't do is governed by many factors..... Money, family, work, beliefs, etc all have influence. There is no shame if you do or don't do something.
I have never done the enterlab testing. Yes it has helped a lot of people, for some it didn't reveal anything new. I figured out my major triggers within 6mths.

For some there is some limitations on physical, emotional mental energies. Push the limits on one and/or all of these and you may have symptoms. Learn what your limits are, plan your day, your week to align with this.


You can get your life back!! Albeit it may not be the exact same as what it was per Dx.
When you have time, read some of the posts in the success stories, this will give an indicator of how easy it was for some, and where it may have been challenging for others.
And the time it took.
What you should see from those posts, the people that gave it 100%, listened to their bodies, and followed the advice of these generous supportive people; climbed mountains!!!!!

I can assure you that tex, as a person working as well, would not spend the time reply to posts, questions, and all the work behind the scene keeping this forum ticking along if what he and others were saying didn't mean something.

And all the other supportive, knowledgeable people who will help you through the MC maze, are doing it because they want you to be well, symptom free. They sincerely want you to get your life back.
This is not a typical forum, it is a family!!! Distance and time difference doesn't seem to matter. Some of my closest friends are potty people members that I met due to mc. I consider those friendships the beautiful gift that mc brought to my life.

Take some more deep,breaths!!! Feel safe and relaxed that you have found the right place. The success of living with mc, symptom free is now up to you..... Only you can take all the info from this site and make it work!!! It's free!!!! No conditions or payment required!!!!

Most of all, healing hugs for your mc journey.

[tex]

Hi Lily,

Welcome to our internet family. No one here has ever reported using that medication, as far as I am aware, let alone concluded that it was the cause of their MC. I checked the medical literature, and I cannot find any case studies that indicate that bendroflumethiazide might cause microscopic colitis. But as you know, just because no doctor has ever reported a case study, does not mean that it has never happened, and new problems with drugs show up quite frequently. It's always possible that a drug is causing problems but no one makes the connection to figure out what it is actually doing. And of course, we all respond differently to different medications. Some are more sensitive to certain types of medications than others.

It's known that blood pressure medications such as ace inhibitors and beta-blockers (among many other medications) can trigger microscopic colitis, but bendroflumethiazide is a thiazide diuretic, and no information on any association with MC appears to be available for it.

Any inflammatory bowel disease can go into spontaneous remission, and then relapse at any time. This happens rather frequently with Crohn's disease and ulcerative colitis, but it's rather rare with MC. So you have been much luckier than most of us. Most of us have to maintain our treatment every minute of every day, for the rest of our lives, or we will relapse.

When someone is experiencing a spontaneous remission, it can end for any reason, or for no reason at all. IOW, it might be possible to figure out what triggered your relapse, or it might not. It's a very complex disease. Usually though, if a drug is causing MC, once the drug is stopped, remission should occur within a day or 2. If that doesn't happen, then something else is probably the problem, or a combination of issues may have caused the relapse.

Most of us here control our symptoms by avoiding the foods in our diet that perpetuate the autoimmune reaction that causes the inflammation associated with MC. Medications can mask the symptoms, but the only way to stop the inflammation from being regenerated every day, is to avoid the foods that cause us to produce antibodies.

Incidentally, discontinuing taking bendroflumenthiazide cold turkey is not recommended because that can cause serious heart issues (in some cases, even a heart attack). Most doctors typically have the patient taper the dose over a week or 2 when discontinuing the drug, for that reason. If you stopped taking it more than a few days ago, then you are probably out of the woods by now and nothing will happen, but if you happen to notice any chest pain or irregular heart beat you might need to visit the ER, or at least call your doctor for advice, to be on the safe side. If you happened to stop taking it today or yesterday, you might want to taper the dose for a few days before stopping it completely, just to be safe.

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

Tex

[Mr. Ballgo]

Hi. Glad this board is here. So many questions. So many changes to make. Thought it was a gluten thing. Well, 1/2 right I guess. First thing I read on the webs was no alcohol, caffeine or spicy foods. Thought I was going to faint. Then I read the other no-nos and well, shoot. Thanksgiving is just not going to be the same. And we thought a vegitarian teenager and gluten intolerant bass player was bad enough. Sigh. I'm not one to post, Facebook or tweet, but I wanted to say hi cause you all have made me feel a little less lonely today.

Brian
the MC bass player.

[tex]

Hi Brian,

It's a pleasure to make your acquaintance, and we certainly appreciate the kind words. Your sense of humor will definitely be an asset that will help you get through recovery, so that you can get your life back. It's tough at first, but it gets easier as we go.

Actually, unless coffee/caffeine caused us to have to run to the bathroom before we developed MC, most of us find that it doesn't cause any problems for us after we have MC. We just have to be careful what we put in it. And alcohol that has been distilled (and not blended back with any products that are not distilled), is usually safe for many of us (as long as we don't overdo it). Vodka, rum, burbon, whiskey, champagne, etc. in moderation usually will not cause problems. However, it can definitely be a problem for those of us who also have mast cell issues associated with MC, because alcohol is a high-histamine food. Beer of course does contain gluten, but there are gluten-free beers, and some of them are claimed to be pretty decent.

And for Thanksgiving, many of us eat turkey with gluten-free, dairy-free dressing, mashed potatoes, sweet potatoes, cranberries, etc., and we don't feel deprived.

I'm a lot like you, I don't do Facebook, and I figure that birds were put on this planet in order to take care of all the tweeting. I wouldn't be posting here except that slightly over 10 years ago I stumbled across the original MC discussion board, and after I read a few posts it dawned on me that Hey! . . . these people are just like me! Prior to that I wasn't aware of anyone else in the world who had this disease, and I had already learned that anyone who doesn't have the disease, doesn't understand it. They made me feel so welcome that I simply couldn't stay away. Such is life.

Thanks for posting. Welcome aboard, and please feel free to ask anything.

Tex

[audreyjhess]

Thanks for the post, Gabes...
I am still reeling from recent diagnosis and I'm stunned by the lack of info available.
Certain that this will be my "go-to" for support.
I need to find out my food intolerances. I have been GF (99%) since Spring 2014. Recent visit to Mayo clinic I tested positive for permissive gluten gene (30% chance of Celiac?), but because of GF diet they could not rule out Celiac's. I will find out soon if I will reintroduce gluten for 2 months so I can be tested. Have been on SCD for last week but that's very heavy on dairy and I'm thinking that's an intolerance too. Before MC I knew that I had intolerances, but it didn't seem to be a big deal. That certainly seems to have changed.

Thanks again for the newbie post.

[tex]

Hi Audi,

Welcome to our Internet family. Yes, this disease and the issues it brings can seem overwhelming at first, and unfortunately, most GI specialists know very little about the proper way to treat the disease. Most of them do not seem to understand the disease at all, and they mistakenly think that a short drug regimen will "cure" the disease. Since most of them insist that diet has nothing to do with the disease, they are lost before they begin, so it's no wonder that they have such poor success in treating MC patients.

Are you very sure that you actually want to do a gluten challenge? Or are you only doing it at the suggestion of your doctor? Virtually all of us here are sensitive to gluten, so a gluten challenge is almost surely going to fully activate your MC (in addition to celiac disease), and the reaction will continue for months after the challenge is completed. The treatment for celiac disease (a 100 % GF diet — not a 99 % GF diet) is completely incorporated into the diet plan that most of us here have to follow in order to control our MC symptoms, so when we control our MC symptoms, we also control celiac disease. That tends to make a celiac diagnosis sort of a moot point.

But you are correct — in addition to avoiding gluten, most of us also have to avoid all dairy products (because of the casein, which is in yogurt and all other dairy products), and many of us have to also avoid soy (and most legumes). Sensitivity to eggs is also a common problem, and some of us have many more food sensitivities. But gluten sensitivity is virtually a global problem with MC, so whether or not you are actually a celiac is sort of a moot point.

I'm in the same boat. My doctors never even considered testing me for celiac disease back before I changed my diet to control my MC symptoms. I have the most common celiac gene, and based on my symptoms, I'm pretty sure that I'm also a celiac, but I'm not about to do a gluten challenge after being in remission for so long. Who wants to be sick as a dog for months, just to make their doctors happy? I have never felt disadvantaged by not having an official diagnosis of celiac disease.

Twice during the past 10 years I have had major surgery that required a recovery period in the hospital, and I have simply told the doctors that I have celiac disease (or gluten sensitivity), and they have never questioned that point, or tried to argue with me. Both times, they kindly sent a hospital food service dietitian to my room, to help plan safe meals during my hospital stay. So I have never regretted pursuing an official diagnosis.

The most reliable, and safest way to determine food sensitivities is by ordering a stool test kit from EnteroLab in Dallas, Texas. Their anti-gliadin (gluten) antibody test is the only one that can accurately determine gluten sensitivity for someone who does not have fully-developed (active) celiac disease, and someone who has been following a GF diet for more than a year. And they have tests for many other foods to which many of us react. Their A1 panel will test for antibodies to the 4 most common food sensitivities (gluten, casein, soy, and egg), and their C1 panel tests for 11 additional foods that frequently cause the production of antibodies.

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

Tex

[audreyjhess]

Hi Tex -
No I am not certain that I want to take the gluten challenge. Pretty curious what my GI doc has to say about that, however.

I am going to a nutritionist today and I am going to inquire about the stool panel tests. I am hoping insurance will partially cover this? We'll see.

In the mean time I am losing weight and I feel like I'm wasting away. Any ideas how I can help myself move forward and gain some weight?

Thank you kindly,

Audi

[tex]

Gaining weight can be tough before we get the symptoms under control because of the malabsorption problems and the rapid transit (plus the limited diet). However, once the healing begins, then we will absorb more of the nutrients in our food, and as digestion improves we can add foods back into the diet that contain more calories. Cooking with olive oil and coconut oil is usually helpful. If you can tolerate avocados, for example, they are a relatively high-calorie source. The grains, such as rice or corn (if you can tolerate them) are very fattening. Remember that grains are the main part of feedlot rations used for fattening livestock destined for slaughter.

But protein is the most important part of the diet, because we need extra protein to help heal the gut as quickly as possible.

If you will call the folks at EnteroLab, they can tell you the insurance codes associated with the tests, and you can then ask your insurance company if those codes are covered. Some insurance companies will only cover them if a doctor orders the tests, while a few others will pay no matter who orders them. Some won't cover the tests even if the surgeon general orders them.

You're most welcome.

Tex

[jmh]

I am 65 years old and received my Dx in 2007. It took a couple of years to get some semblance of my life back since NO one indicated to me that this might have anything to do with what I eat. I've searched online for years for more information on this disease and finally found this forum. I wept both from the validation and from seeing just what I have to go through with my diet (which I've suspected for a while now) to maintain some control. I've just gone through a 4 week flare-up during which I struggled with a mandatory "vacation" which was somewhat stressful and included traveling and eating out a lot. Once I was able to make myself give up the gluten, within days the D subsided. Fortunately I don't have pain, just discomfort from all the grumbling.

My question at this point is this (and I'm not even sure which board to attach this to, and this site is so big and comprehensive javascript:emoticon('') that I couldn't readily find the answer):
It has been suggested to me that I keep a food diary/journal in an effort to find out if there are any other triggers besides the gluten. Do any of you do this? And if you do, what does your journal include that would be helpful to me when I map out my own?

I love this site and am so grateful that I've found all of you. It's been like "coming home"!

Judy

[tex]

Hi Judy,

Welcome to our Internet family. I'm sorry that you needed to find us, but I'm glad that you did. Your observation that finding this site is like "coming home" says it all — you are definitely one of us. When I first stumbled upon the original CC discussion board many years ago, my first thought after reading a few posts was, "Wow! These people are just like me!" Prior to that, I had always felt as though I were the only one in the world dealing with this disease. It's the loneliest feeling in the world, because no one understands it, unless they actually have it.

It's great that you had such a fast response to removing gluten from your diet, and it's good to see that you are now on track to get your life back. Many of us don't see any improvement that quickly. And please don't be discouraged if you experience a relapse of symptoms after a month or so. That merely means that your antibody level for gluten is declining and that allows your immune system to focus on the next most significant food sensitivity, and react to it. Most of us have to also avoid all dairy products and soy, and many have to avoid eggs. Some members here also have many other food sensitivities, but we are all different, so we each have to carefully fine tune our diet to reflect our own food sensitivities. Of course it's not impossible that gluten might be your only food sensitivity. Time will tell. It can take time and dedication to track down all the problems and fine tune our diet, but it's so worth it to get our life back so that we not only feel like doing things again, but we are able to do so without worrying about having an "accident".

I kept a food/reaction diary for about 2 and a half years (on a spreadsheet on a computer). In it I kept a record of everything I ate for every meal and any snacks in between (including approximate times). I also noted times and consistency of bowel movements (sometimes combining them if they were close together, and just noting the number). I also recorded how I felt each morning (great, so-so, nauseous, vomiting, many aches and pains, headache, migraine, rough, etc.), and if that status changed during the day, I noted it. If I had been taking any medications I would have included them and the times at which I took them, also.

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

Tex

[nerdhume]

Welcome to the group Judy....hang in there and know you are not alone. Don't have much to add, Tex is always so thorough.

[jmh]

Thank you both so much ... Let the rest of the journey begin!

[audreyjhess]

Hi Judy -
I am a newbie too. That club you never wanted to join nor learn so much about!

From now on, my tummy grumbles too. (I used an adjective I liked far less before)

Good one!

Take care..I hope you feel better every day.

Audi

[Gabes-Apg]

Hi Judy
welcome to the group - sympathies that you have MC and had to find us.

I kept a daily food/reaction type journal for a couple of years, and since then still keep rough notes that i update weekly/as required when i am doing new supplement protocol etc.

I would keep note of drinks, foods, medicines, supplements, any activities, symptoms, BM info, and sleep patterns.
plus any treatments (acupuncture etc) and what would happen in the 1-48 hours post treatments

For me, early in the piece the journal helped me realise things like;
- I would have issues if I ate carrot and cauliflower together
- not to eat within 30 mins of having my black coffee,
- a stressful day at work would affect BM's
- less than 8 hours sleep would affect energy and BM's
- if there was inflammation and high probability of D, the niggles and symptoms that would happen 20mins before a BM, so i always knew when they happen, get to a toilet!
- any medication changes / supplement changes are best done gradually, ie start with 1/6-1/8th dose for three days, then increase a bit for 3 days, if all ok, increase a bit more for 3 days etc
- i do better with exercise in the mornings. exercising after 4pm would cause BM's to happen of a night.

having all this type info helps to plan the day / week. We cant always avoid triggers, but we can minimise the impact of them, by planning/scheduling them when they will cause the least amount of issues to our weekly routine.
(does this make sense)

as you read through some of the posts and discussion, you will see that 'listening to our bodies' and decoding those messages is very important to attaining wellness. we are all different, yes there are general type things that affect most but there is no black and white guidelines.
read through some of the posts/discussions, feel free to ask questions and happy healing

take care

[jmh]

It’s been a while since I’ve written and I thought I’d give an update on my condition. I thought about writing a few days ago to say I was seeing signs that I was on the road to recovery, but I would have spoken too soon. This flare started early in October and it was early November before I realized it wasn’t going to be a short one. And because of vacation planning and traveling, it also took that long to get myself onto the BRAT diet and just a few other staple items (like Chex cereal, a little turkey and broth), which seemed to be safe at the time. While I haven’t been perfect at sticking to the eating plan (Thanksgiving was incredibly hard), I’m learning that being very strict with myself is necessary.
Since going off of the gluten, dairy, eggs and soy, I was expecting to see some symptom-improvement (I saw improvement within 3 days during the summer, but things had not gotten out of hand like this time). I seem to be constantly taking one step forward and two steps back. But I recently had to take myself off of the turkey and Chex as I began having more unexpected explosive symptoms. And I’ve had to start taking the Lomotil on occasion again, although not on a daily basis as in the beginning. And I’ve now gotten used to life without the GDES and have lost 22 lbs.
I’m taking the antihistamines recommended on the site. However I’m find the Chlor-phen is going right through me, as were my ER Metformin until I switched back to the regular Metformin. I can’t tell if any others are not digesting. I sure hope my multi-vitamin is, because I feel I really need those vitamins during all of this.
I’m beginning to wonder if the broth is having an affect. I usually cook my rice in broth, then when I heat a serving for a meal, I add a little more to give it some moisture, flavor and (I never thought I’d be saying this) some sodium. I’m going to hold off a couple of days before eliminating the broth though, hoping my system will settle down from taking out the turkey and Chex. It’s only been 2 months since all this began, but it seems like a lifetime!
Christmas is right around the corner and I’m not dreading it as much as I dreaded Thanksgiving. I’m resigned to the fact that I’ll be eating rice at every turn. I will probably not be a happy camper if I end up having to eliminate the broth as well! I’ve already told my husband that I won’t be going to his company dinner party because it’s at a restaurant and I don’t want to have to deal with asking them to heat my rice for me, nor do I want to answer all the inevitable questions from his co-workers. However, I do plan to attend some parties where it will be more convenient and where there will be friends that I have already shared my condition with.
At my husband’s urging, I have just ordered the A1/C1 panel from Enterolab. He’s just as anxious as I am for me to get some relief by finding out what I need to avoid from that panel. And I’m about half way through Tex’s book and am learning a lot, but I think the chapters that will help me most are still to come. Making my way through the website has been both gratifying and somewhat of a challenge. It’s not always easy to make my way back to a post where I remember reading helpful information on a specific topic. I’m realizing I should have been taking more notes when I was going through it the first time. And sometimes I wish there was a "Like" button :)
Maybe someday I will be in a position where I can actually be of help and encouragement to others on this site. But for now I want to thank everyone who has encouraged me and given tips to help. I will be forever grateful to you.

Judy