Hello From A New Member

[jomac]

Hello,

I’m new to this forum, but not really new to MC. As with all my other AI conditions, and I’m convinced MC is AI, I’m very lucky. It’s not too serious. This particular time, it’s usually 2 or 3 times daily and almost always when I first get up in the morning. But of course usually is the operative word.

Little background. I’m 63 and was originally dx’d with CC in 2005. I’m clueless about what triggers it. I’m fortunate that I’d taken early retirement the year before, so I didn’t have to worry about CC’s effect at work. The only other active AI condition is MS (that’s multiple sclerosis, not mitrial stenosis which is a heart condition). The MS spends most of it’s time, knock wood, in remission.

I’ve tried Asacol, Colazal, Questran and Entocort and probably others I can‘t remember. I’ve also tried some strange things that actually worked a few times but haven’t this time. The Entocort is the only medication that worked, but a few weeks after stopping it, the LC started back up. I’m thankful I had that break so I could get a heart procedure done w/o worrying about MC.

I’m assuming (and yes, I know what assume does to U and ME) that I don’t have any food intolerances as I usually eat anything and everything, both in and out of remission, and there is no change in either the D, when I’m out of remission, or have any problems when I’m in remission. I could of course be wrong. I’ve also never had problems with NSAIDs and for major pain Advil is my go to; Tylenol is useless. Course everything can change.

Just saw my GI last nite and we’re trying Apriso this time. Xing my fingers.

Nice to meet you all; this is the best site I’ve seen for MC.

Joan

[Zizzle]

Welcome Joan!
I'm glad your MC seems mild. We have learned that many food intolerances are hard to identify, especially when you eat them all the time. Gluten in particular is always the last one people suspect, after blaming spicy, greasy, gassy foods for their GI symptoms. You might try a 1-2 week (or even 2 day!) trial elimination diet removing gluten and dairy, then add them back in and see how you feel. I have many friends who didn't discover their gluten intolerance until they started a low-carb diet for weight loss, and with less daily gluten, started noticing how bloated and fatigued they felt after eating it. Hopefully you won't be intolerant, so it doesn't hurt to try. If you prefer lab test confirmation, we really value the work of Enterolab.com. There you can get tested for gluten, casein, soy, egg, yeast and other sensitivities.

Gluten sensitivity is also closely connected to MS and other AI diseases, so you might see improvements there too.

[tex]

Hi Joan,

Welcome to the board. Regarding your wondering what triggers your MC, there are basically 3 possibilities.

1. You have drug-induced MC, in which case stopping the medication that cause it may eliminate your MC symptoms. If this isn't done reasonably promptly, though, most people go on to develop food-sensitivities.

2. You have food-sensitivities that are triggering your symptoms, whether you realize it or not.

3. A mast cell disorder may be triggering your MC symptoms, but in this case, you should be bothered by some of the classic allergic symptoms, after eating.

About 10 to 15% of us fall into category 1, about 98% of us fall into category 2, and about 70% of us fall into category 3. Yes, I know that those percentages don't add up to 100, but that's because most of us have overlapping causes.

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

Tex

[brandy]

Hi Joan,

Welcome! I agree with Zizzle try gluten free for 2 weeks or so and see how you do. She is right that people don't suspect gluten because you don't have the issues with gluten like you do with say milk. It is very common for those of us diagnosed with LC or CC to be gluten sensitive without even knowing it. My Mom, for example, who actually has celiac disease did not have GI issues initially...for years her only symptom was the erosion of her dental enamel. There is no side effects to going GF and you live in a city with a huge variety of food options! Keep us posted on how things go! Brandy

[Leah]

Hi Joan and Welcome.
I am pretty new to this forum, but have been reading A LOT of what everyone is saying. I didn't think I was Gluten intolerant either because I feel fine eating it. I finally decided to get the Enterolab tests done and while i am waiting, I am GF and DF. I have found many good options. Like you, my symptoms were not as bad as some, but during a flare it went up to about 6 times a day...Not good for a personal trainer! I did start taking Entocort and it works, but I can't be on it very long, so I thought I better find out what I am intolerant to before I have to go off of it! So, I'm waiting for the results. I hope you find the answers you are looking for. Keep us posted.
Leah

[MBombardier]

Joan!

I have CC too, dx Sept 2010. I was asymptomatic and ate whatever I wanted. I was blind-sided by this diagnosis, since I had no idea anything was wrong. My astute GI (one of a kind, almost) did biopsies based on my mentioning that I had D, otherwise who knows how long it would have been before I was diagnosed.

After I asked how to spell "collagenous" I went online and found a site named Enterolab, run by a Dr. Fine, who said that gluten was a major cause of this disease. I was like, "What!!" But I decided to go gluten-free, not really believing that I would have to do it, or do it for very long. Three weeks after going GF, I accidentally consumed gluten on a contaminated hot dog and all hell broke loose in my GI tract. So, yeah--after eating gluten and anything else I wanted for more than 53 years, I could no longer eat gluten.

Gradually, I discovered that my joint pain was going away, my brain was reviving, and I had more energy than I had had for quite a while. About four months later, all the symptoms came back. That time it was soy. The body only deals with one intolerance at a time and the gluten antibodies had gone down enough for the body to be ready to deal with soy. Over time, the other intolerances have shown up the same way. I was asymptomatic to every one of them until I challenged them by going off them for a few weeks.

Please don't discount all the advice to stop eating gluten as coming from people with one-track minds. None of us jumped on the anti-gluten bandwagon of our own free will, and we have all gone through (or are going through) a grieving process over our former carefree lives.

My understanding is that the reason the CC came back a few weeks after you stopped Entocort is because the Entocort only took care of the symptoms for a time, your body was still reacting to something. I've never taken Entocort, but I have read here from those that stop and start it is that it doesn't always work after going off it and back on again unless food sensitivities are being dealt with.

If you look up MS on the forum (I posted about it not too long ago) you will see that a GF diet is integral in dealing with that, too.

Welcome, Joan! This is a great forum and there is lots of information. It's sort of like drinking from a fire hose, but please ask any questions you may have. We're a big family here.

[jomac]

Thank you all for your welcomes and information.

I will certainly consider doing a GF trial period. My assumption that I had no food intolerances was because I could be in remission and eat anything with no problems. Even if I'm having a bout of MC, no foods seem to effect it. From the posts I've read, it appears that if you have say a gluten intolerance and you erroneously eat something containing gluten, you have problems whether you're in or out of remission. Also with food intolerances does one normally have bloating, joint pain, brain fog, fatigue, etc. I've got none of that.

I figured my MC was similar to my MS insofar as going in and out of remission. It certainly seemed so to me. Prior to this latest bout, it was in remission for about a year and I hadn't been taking any meds to combat it. My MS does the same. I'll come out of remission (thankfully not very often) and then the symptoms decrease and I'm back in remission. Again, no seemingly specific triggers, except maybe one time. I came out of remission around the 1st anniversary of 9/11 which was a very stressful time in NYC and I worked in what was considered a target building. But I'd been in a very stressful job and that hadn't effected the MS, so who knows.

I'm on an interferon for the MS which I started about 2 years before the MC started. That could possibly be the initial cause. Of course my neurologist says no, but these meds are new (they've only been around since '93 I believe) so how can they know for sure.

I started on Zoloft in mid-May and the MC came out of remission at the end of June. Saw on the Mayo Clinic site that Zoloft was possibly a trigger. Asked my GI and of course he said no. Does anyone know if all anti-depressants are considered triggers? I'll talk to the doc that prescribed Zoloft and see if I can change to something that won't act as a trigger or is it too late.

Started Entocort in early November and stopped it at the end of December, too soon maybe? About 3 weeks after stopping the Entocort, I started on an aspirin therapy. Not 81 mg, but 325 mg. This was to prevent clots after the heart procedure I had. When I mentioned colitis to my cardiologist, she said stop the aspirin. So it may have been a combo of stopping Entocort and aspirin. The MC started again about 3 weeks after starting the aspirin. I haven't had problems with NSAIDs before, but I also never took them a lot or for an extended length of time, certainly not for 3 weeks straight.

This is an amazingly informative site and gives one a lot to think about. And there is so much that is unknown about so many of these conditions/diseases that it's frustrating as all get out. Sigh...

It's also frustrating to my 'kids'. I'll be sitting in my chair with a book and Suzie Q will be curled up in my lap purring and sleepy. Then all of a sudden, mom has to jump up, disturbing her (how dare I), and do the TRD (Throne Room Dash). Simon's not a lap cat so the TRD doesn't really effect him. Of course, they'll sometimes form an obstacle course to the TR which is frustrating to me!

Hope you all have a great weekend.

Cheers,
Joan

[tex]

Also with food intolerances does one normally have bloating, joint pain, brain fog, fatigue, etc. I've got none of that.

Except for unusual fatigue, (which almost everyone who has MC has to deal with), and bloating, (which is caused by poor digestion, and especially food-sensitivities), the other symptoms, (joint pain, brain fog), are due to the leaky gut syndrome, (which is not always sufficiently developed enough to be symptomatic, in every case).

I figured my MC was similar to my MS insofar as going in and out of remission.

You're quite correct, like all IBDs, MC can wax and wane. It doesn't seem to go into spontaneous remission as frequently as the other IBDs, though, except for certain lucky individuals. Many of us never see a spontaneous remission, so we maintain our treatment at all times, in order to prevent problems.

I assume that you are taking either interferon beta-1b, (Betaseron), or interferon beta-1a, (Avonex). Conventional knowledge says that MC is a result of an overactive immune system. I don't entirely agree with that, (but I won't get into that now, because even though I believe that premise is incorrect, the net result is the same), so based on that concept, since interferon medications enhance the capabilities of the immune system, it's certainly possible that they might trigger MC. There don't seem to be any study results available on this issue, but individual case studies exist, which show clear evidence of enterferon therapy used on patients with no previous history of GI issues, which resulted in the development of severe microscopic colitis.

Despite your GI doc's ignorance about Zoloft, you are correct - SSRIs can definitely trigger MC for certain individuals, (though not everyone). No, there are a few anti-depressants that have not, (yet), been connected with MC. Wellbutrin is one, I believe, and I'm pretty sure there are others, though I can't think of any at the moment. In general, the tricyclic anti-depressants, SSRIs, SNRIs, etc., have been shown to cause problems. Some of them have not been available long enough to have established much of a case study record, yet.

NSAIDs, (including aspirin), are the number one type of drug to cause MC. That is almost surely the cause of your current flare, IMO.

You're quite correct - very little is actually known, (in medical terms), about most of these diseases, and most GI docs are poorly-trained to deal with them, which makes life extremely frustrating for many patients. Either we suffer in silence, or we have to become our own advocate, learn about the disease, (or diseases), and manage our own treatment, (which, of course, really frustrates the gastroenterologists and other specialists, since they have an extremely difficult time accepting that their patient might know more about treating their condition than they, (the specialists), know. Knowledge pays off, though, because most specialists never consider integrating the treatments that they recommend with other treatments that their patients are receiving, and that is one item in particular that is extremely important, because in many cases, the treatment for one disease may either interfere with a treatment for another disease, or it may make some other disease worse, or even trigger additional diseases. Therefore, it always pays to review all the medications prescribed to us, to make sure that one or more isn't counterproductive for our own personal situation.

I'm certainly no doctor, but after reviewing your symptoms, (especially the fact that you have at least two autoimmune diseases, with no symptoms, (yet). of increased intestinal permeability, together with the fact that you enjoy periods of spontaneous remission), I feel fairly confident that your MC is drug-induced, and as long as you avoid those drugs that trigger it for you, you should be able to maintain remission without further intervention, (other than to avoid the drugs that trigger it, in your case). Of course, unfortunately, in some cases, food-sensitivities develop later, especially if relapses continue to occur, due to other reasons, (such as drug-induced MC). IOW, the faster you can get to remission, and stay there, the less likely you are to develop any food-sensitivities. Please be aware that drug-induced MC virtually always involves increased intestinal permeability, also, (caused by the drugs, themselves), but symptoms are not always obvious in many cases). If you were to ask your doctor to do a test to check your intestinal permeability, you would almost surely show a positive result, believe it or not.

So IMO, the bottom line in your case is, get rid of the meds that might have caused your flare, and that might be all that you need to do. If that doesn't work, you will probably have to consider food-sensitivity testing. Another thing to keep in mind is the fact that many people who adopt the GF diet find that they no longer need anti-depressants, and various other medications. That's one of the reasons why the pharmaceutical and medical industries are going to so much trouble to discourage the current GF diet trend - it resolves a lot of symptoms for a lot of people, and it eliminates the need for doctor's office visits, and zillions of dollars worth of prescription medications, worldwide.

Thanks - I hope that you thoroughly enjoy your weekend, also.

Tex

[barbaranoela]

Welcome Joan-------always plenty of *room* at the INN---- --and happy U found us--

I am an older tenet---and thankfully have been well on the mending rode--but do pop in just to see friends and if I feel the *NEED* to mouth off of anything running thru my life that is totally not related to NORMAN----yet might cause me a dreaded meeting with him-

Nothing is 2 embarrassing to ask--so again I say



Barbara

[Leah]

Hi Joan. Just one more note about food sensitivity. There is a difference between the protein intolerances and the others. The main protein ones (gluten,dairy,soy...) can be a delayed reaction, so you won't know it is doing anything to you when you eat them. That's one of the reasons it takes a while to know whether going "free" of these things helps. if you are intolerant to one/more of these things, then you should probably stay away from them.
Where as things like tomatoes, salad, and peppers ( everyone is different) will "irritate" your system and give you D pretty quickly. These things are probably ok to eat in small amounts when you are in remission.
Okay, just thought I'd throw that info at you.
Take care
Leah
PS I don't have any other symptoms either. I consider myself lucky :)