Attn newbies or anyone struggling....

Misty · Post by **Misty** » Sat Jan 31, 2015 3:49 pm

That is such a relief Tex, no more shopping and worrying, if I am already doing what can/should be done now...Thanks for the warm welcome...Will attempt to find the main message board next time...

Post by **tex** » Sat Jan 31, 2015 5:00 pm

Oops!

This is the Main Message Board. My brain must have been in neutral when I wrote that response.

For some unknown reason I was thinking that this sticky topic was part of the Information on Medications thread.

Sorry about that. You're doing fine — it's me who's lost.

Tex

Erica P-G · Post by **Erica P-G** » Mon Mar 09, 2015 1:52 pm

Thank you for this post, very insightful, dare I say I am so new to this family forum that most everything I've read so far is something that hits close to home I have a small crying spell over it.

Its more than food for me...it definitely is hormones and lifestyle that contribute to it as well.

Thanks again :-)
Erica

Post by **tex** » Mon Mar 09, 2015 4:12 pm

Hi Erica,

Welcome to our Internet family. I definitely understand what you mean. Back when I was reacting, I didn't know of anyone else in the world who had similar symptoms, and it was the loneliest feeling in the world. Then I came across the old original discussion board that this one replaced, and my first thought was, "Wow! These people are all just like me."

And you are quite correct about hormones. They sometimes play a very large role in this disease, and so do certain other environmental influences. Despite doing everything right with our diet, hormones can sometimes trigger a relapse. And many of us have found that stress can trump an otherwise very effective recovery program.

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

Tex

Erica P-G · Post by **Erica P-G** » Mon Mar 09, 2015 4:31 pm

Thank you Tex,

Just another lost soul out here that seems to have a lot in common with this group and glad I have happened upon this site. From what I have learned in my family history my grandma and mom both have had these symptoms but did not know what caused them....I took the next step being the answer seeking person I am and had a biopsy and endoscopy and colonoscopy and found out it was LC or MC how ever you look at it.

I am ordering your book as I want to learn as many tricks to the trade as I can. This hit me like a train when I turned 40 (thinking it was apropos for the timing as we all fall apart when turn 40 right ;-)) I thought this is an awful way to start middle age! Now seven years later and knowing it is LC about 2.5 yrs ago I realize I have some changing to do....btw I am in full menopause now too a full year as of this last January. So I blamed a lot of this on hormones and my stressed adrenals. Now I get to figure out which foods are safe moving forward. I did notice (coincidence or not) that I had been taking Allegra all last Fall and this Winter and for some reason I decided I probably needed a break a couple weeks ago....after reading a comment on Amazon while ordering your book about a man and his wife who started taking Allegra and their symptoms left it got me wondering just how much that may have been helping as at this moment I have had a relapse like no other I can remember.

I'm hoping in the long run I can stabilize more after this new hormone switch and with food strategies I can feel 'normal' again.

Thanks again :-)
Erica

Post by **tex** » Mon Mar 09, 2015 7:12 pm

Erica,

Yes, hormones (like stress) are wild cards with MC. They can have an effect anywhere from negligible to overwhelming. We are learning (the members of this group here, not the medical researchers) that mast cell issues can have a powerful effect on MC for many of us. So yes, the Allegra may have been maintaining your remission. Many members here have found that when the going gets touchy, (as in when weaning off Entocort) an antihistamine can bring/maintain remission almost as effectively ad Entocort. Here are some links to a few short articles that you may find enlightening. They describe how mast cell issues are associated with MC and how they can be effectively treated:

What are mast cells?

How are mast cells associated with microscopic colitis?

How do I know if mast cells are causing problems for me?

How are mast cell issues treated?

You're very welcome,
Tex

Gabes-Apg · Post by **Gabes-Apg** » Tue Mar 10, 2015 1:43 pm

Erica,
Welcome....

I can only encourage you to embrace the changes, find your triggers, eliminate/minimise them and you can attain wellness.

As you read through posts you will have lots of 'ahaa' moments, and so many things will start to make sense.
Good luck and happy healing....

Take care

Erica P-G · Post by **Erica P-G** » Tue Mar 10, 2015 2:28 pm

Thanks Gabes and Tex...

I feel much better today after taking just one Allegra last night, I'm not Fixed but I feel better.

I so much appreciate the information and the positive help.

I feel as if I have found some very helpful people and information for once regarding MC and know I can take some control in guiding it. Just that feeling alone is worth millions right now.

After the inflammation lessens does anyone know when to exercise again, I haven't been able to do much because as soon as I start to raise my heartrate it seems to excite the gut too, an who knows what to expect then. Is this a histamine reaction? I plan to work on a lower histamine diet for a while and increase the DO, hoping there is an answer in doing that. If anyone else has had this reaction when being overly active I'd like to know :-)

So thankful today,
Erica

Post by **tex** » Tue Mar 10, 2015 5:26 pm

Erica wrote:After the inflammation lessens does anyone know when to exercise again, I haven't been able to do much because as soon as I start to raise my heartrate it seems to excite the gut too, an who knows what to expect then. Is this a histamine reaction? I plan to work on a lower histamine diet for a while and increase the DO, hoping there is an answer in doing that. If anyone else has had this reaction when being overly active I'd like to know :-)

We have a number of members who have mast cell reactions that are triggered by either exercise, heat, sun exposure, chemical odors, or some other environmental condition, or a combination of environmental conditions. Many of those members have to be careful to avoid receiving vaccinations when their mast cell activity is at a significant level, because it can lead to what doctors refer to as an "adverse event" (such as an anaphylactic reaction). If you find yourself in a position where you need or want a vaccination, be sure to wait around near the doctor's office or clinic for at least 20 or 30 minutes afterward to make sure that an anaphylactic reaction does not develop. This includes flu shots, for example.

It sounds as though your mast cell reactions may be confined to your digestive system (and no anaphylactic symptoms develop), and as long as that's the case, it should be safe to exercise. Just limit it to whatever level you can tolerate without promoting digestive system distress. As your intestines begin to heal, you should be able to increase the amount of exercise that you can tolerate without irritating your digestive system.

While we are recovering from MC we have to learn our limits and work within them, because fatigue is a constant problem when the disease is still active. Our immune system uses up most of our energy trying to control the inflammation. But the fatigue will slowly fade away as we heal, and eventually we will regain our ability to tolerate a normal amount of exercise and/or work.

You're very welcome,
Tex

danamir · Post by **danamir** » Tue Mar 31, 2015 7:52 pm

I really appreciate all the information. I am newly diagnosed with MC after some years, when in the last 3 months it became very bad. I had a colonoscopy and MC diagnosis. I have started on a gluten free diet and some of the other suggestions in eating.
I have several questions. My MC is likely caused by my drug Flecainide and Lopressor for my A-Fib. I am now off the Flecainide and trying to minimize the beta blocker. Has anyone else had reactions to these drugs and also have A-Fib? It is a bit tough, because I do need something to control the arrhythmias.
Also I have been taking 2 - 3 tbl of pure coconut oil a day and it seems very soothing. This is all new so I am just trying to take one day at a time. Thanks so much for this forum.

Post by **tex** » Tue Mar 31, 2015 10:21 pm

Hi Danamir,

Welcome to our Internet family. While you certainly may be correct, are you sure that one of those meds actually triggers your MC symptoms? The reason I ask is because only a relatively small percentage of people have even noted an association of those meds with MC, let alone proof that they might trigger the disease. IOW, all the research articles that I'm aware of rely on epidemiological studies, rather than actual random, double-blind medical trials that actually prove cause and effect. Epidemiological studies (such as an analysis of the extensive database of this discussion board that contains the experiences of many hundreds or thousands of members) can be extremely useful, but most of the published studies concerning drug-induced MC are typically based on very low numbers of subjects, which typically makes the data far less reliable. That said, most of the medications listed as as associated with MC can indeed trigger MC for a certain percentage of people, but certainly not for everyone.

I've taken metoprolol tartrate in the past, and I still have a prescription, but I have not taken any in a long time because my heart rate is usually too low to justify it. I do take lisinopril almost every night (to minimize stroke risk), and of course lisinopril is also listed as a potential drug that can cause MC (ace inhibitors). IOW the risks of some of these drugs are so low that they should be considered on a case-by-case or personal basis.

That said, I have never taken an NSAID, PPI, SSRI, SNRI, or a bisphosphonate since having MC, though some people can almost surely use them without problems. OK I lied, I did take a PPI for a few days while in the hospital recovering from major abdominal surgery because my doctor insisted that if I didn't take one while I was under their care, they would put me back on a respirator. I only took them for about 3 days, but after I got home, I soon developed GERD problems, something that PPIs are notorious for causing (but usually you have to take them for a couple of weeks to develop the problem so maybe I was just unlucky. I figure that I was lucky that I was discharged and sent home so soon, or I could have had a major GERD problem. It took me about 5 or 6 months to get rid of the GERD as it was.

I've also taken a statin before, upon a doctor's insistence that it was needed for stroke prevention, but while my gut appeared to tolerate it, my muscles would not, so I discontinued taking it and would never take one again.

Don't get me wrong, certain types of meds cause many, many cases of MC every year, but is it possible that something else might have triggered your MC? There are many possible causes of the disease, chronic stress being one of the worst offenders.

I have no experience with either or those medications, nor with A-Fib. But there are are certainly members here who do have that experience and knowledge, so hopefully one of them may spot your post and offer some insight from their own experiences.

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

Tex

Lilja · Post by **Lilja** » Wed Apr 01, 2015 8:01 am

I'm certain that stress is a big offender.

I got a telephone call this morning, telling that my 4 years old grand-daughter had been sent by ambulance to the hospital. It took only 10 minutes, and I had to go to the bathroom, vomiting like if I had eaten something bad, my heart was jumping and my hands were wet.

I still have a terrible nausea.

All went fine with my grand-daughter! So, the little "price" I had to pay is peanuts :-)
Lilia

Post by **tex** » Wed Apr 01, 2015 12:32 pm

Hi Lilia,

I'm glad that your grand-daughter came out just fine. And I hope that you will recover almost as quickly.

Tex

Lilja · Post by **Lilja** » Wed Apr 01, 2015 3:48 pm

Thank you, Tex :-)
Lilia

danamir · Post by **danamir** » Wed Apr 01, 2015 5:35 pm

Thank you Tex for your reply re my A-Fib medications. Who knows, it might just be a perfect storm of medications and stress and gluten etc. I have only been on the gluten free diet for four days but I think it is really helping, I also will probably go dairy free. I have read your book twice and it really helps to put MC in perspective with all the helpful suggestions. I also take Pepto and the anti diarrhea medication - I think Lomitil, until things begin to calm down. I really appreciate this form with common sense suggestions for MC suffers. Thanks, danamir

MICROSCOPIC COLITIS SUPPORT

Attn newbies or anyone struggling....

Thanks Tex