New here, new dx of MC as of yesterday.

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Teri
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New here, new dx of MC as of yesterday.

Post by Teri »

Hi, I'm Teri and I received my diagnosis yesterday. I don't know what I don't know about MC. So I'm reading, reading, reading... This place is a treasure trove of information so thank you for that.

I'm immunocompromised thanks to a short time on Embrel for my psoriatic arthritis and I never bounced back. So my WBC count lives in the high 2s or low 3s. Doc started me on Endocort (first dose today) so I figured if I have at least 1 WBC left on Friday, I'd throw a party. You are all welcome to do a tequila shot and sing "He's a Jolly Good Leukocyte" in his honor. I won't risk the tequila because, well, I need him to be ready for a long night of meiosis and mitosis. *cueing up Barry White now*

Anyway, looking forward to getting more info about MC and how to live life outside the loo.
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Post by JLH »

:welcome: Teri. I think you'll be a fun addition to our PP family.
You are very speedy in finding us.
DISCLAIMER: I am not a doctor and don't play one on TV.

LDN July 18, 2014

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tex
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Post by tex »

Hi Teri,

Welcome to our internet family. You have the right idea. Sometimes this disease can be so oppressive that we have to laugh to keep from crying, so viewing as much of it as possible from the humorous side is definitely a step in the right direction.

I'm curious about how long ago you stopped using the Embrel. We have one member (who hasn't posted in a couple of years) who was (and probably still is) using one of the anti-TNF drugs to control her psoriatic arthritis. IBDs are considered to be autoimmune diseases (which implies that an immune system suppressant should put a stop to the symptoms), and indeed, the anti-TNF drugs seem to be effective for suppressing the symptoms of Crohn's disease. I've always wondered what it actually does to the progression of the disease, though, because strangely, every time this particular member would have her treatment, her chronic diarrhea would immediately become much more severe for a few days to maybe a week. IOW, it appeared to keep her psoriatic arthritis under control, but it made her MC worse.

This led me to believe that it may well have been the cause of her MC. It is known (by a vast database of member experiences here) that the diet that most of us follow to control our MC symptoms, typically suppresses psoriasis, many other skin issues, and many/most forms of arthritis. However, I could never persuade her to discontinue the anti-TNF drug long enough to find out whether or not it was the cause of her MC, and whether the restricted diet (that she scrupulously followed) would have been sufficient to control her psoriatic arthritis and MC, (in the absence of the drug). Obviously, though I'm sure that virtually all physicians would claim that this is impossible, the drug was proinflammatory, in her case.

So now I'm wondering if your MC developed while you were taking Embrel, or soon after you discontinued taking it.

Again, welcome aboard, and please feel free to ask anything. I hope that you can find the solutions you are searching for, here.

Tex (Wayne)
:cowboy:

It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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Teri
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Post by Teri »

Howdy Tex! Yes, I use, and likely abuse humor. We are a funny family. I figure if you can't see the funny side of something, well then what's the use in living through it. We laugh a lot and potty humor has become our specialty as of late, at my expense of course.

So here's my saga (I'll be as brief as possible...)

A long time ago in a galaxy far, far away...

I've been on 2 courses of Enbrel in total. The first was the doozy and that was in 2010 and I was only on it for 2 1/2 weeks. Yep, that was not a typo. 5 doses, as at the time they were front loading my first course of treatment with double doses. Luckily, they did a blood draw at the 2wk mark and found out quickly that my WBC count bottomed out. It went from 4.8 (not terribly high to begin with to 2.6). That was in September. I spent the entire winter doing blood draws and visiting doctors trying to figure out why it wouldn't recover. They just said I was broken. But at the time I do not recall having any significant signs of MC at that time, aside from my usual, and occasional bouts of what I thought was IBS. NB: My psoriasis and PsA began to clear and I got rapid relief on Enbrel. I was sad to have to quit. I used prn prednisone and pain meds (tramadol) when I had to, plus some creams for the skin.

Fast forward ~2years... The Rebel Alliance has built the Death Star....

My psoriasis got worse and I began to have swelling in my joints that I couldn't manage anymore so I went back to my rheum to beg for Enbrel and hope that my WBC was magically restored by the elves that come in the night. But it was only in the low 3s... my ANC was fairly good though so we decided to throw caution to the wind and we ordered up some Enbrel. This time it lasted for 2 injections, and it dropped to 2.8.

My doctor said, "These aren't the drugs you're looking for."

So it's clear that there is an unrequited love affair going on between me and Enbrel. But this time, my MC symptoms had already begun. I remember this because during my initial evaluation for the Enbrel, I reported having problems with daily D that began about 2 months prior, which prompted a referral to a GI. The Enbrel did nothing to help or exacerbate the MC in this case. I'm an enigma.

My husband keeps telling me Gluten-free is do-able but I've never succeeded on any diet/alternate eating plan/whatever you want to call it that I've tried. In fact, as soon as you say I can't eat something, I crave it. Like right now, I want to eat nothing but wheat. I'm useless. (As a funny aside, people keep asking me what my secret to all this weight loss is... I really have no idea what to say in polite company. I mean imagine how wide their eyes would be if I told them!)

I suffered through 2 infections (cellulitis of the larynx and cellulitis on my hand) due to such a poor immune system, although surprisingly, I've dodged the flu so far.

Did I mention I have migraines? .... to be continued
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Post by tex »

Teri,

It helps to view the foods that cause our problems as toxins, because histologically speaking, from the viewpoint of our tormented intestines, they are. And wheat gluten is the Darth Vader of food sensitivities.

It also helps to picture ourselves as symptom-free, as long as we steadfastly avoid those toxins. For starters, your migraines will eventually completely disappear on a rigid gluten-free diet.

Tex
:cowboy:

It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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Teri
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Post by Teri »

Ooh, ok, Darth Vader is gluten. I can just picture him in the big bowl of pasta or sticky buns. I'll start practicing now by cursing his name every time I flush. Very good association.... It just may work!

And if I could get rid of my migraines, people my like to be around me again ;)
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Post by Leah »

Welcome teri! You are so funny! I was grinning the whole time I was reading your posts.
I think it takes some of us a while to wrap our heads around the diet changes we have to make to heal. Although I dumped dairy very fast because it was so obvious that it was making my symptoms worse, it took me a month from dx of MC to get rid of gluten.

The thing is, if the Entocort helps ( and it did for me FAST), it gives you a false sense of being better. What will probably happen though is if you don't change your diet, when you wean off of the drug, you will probably relapse. The reason is if you keep eating the foods that are causing the inflammation- that the drug is surprising-......well....

There also is a whole list of "irritant" foods that should be avoided because they are just too hard on an inflamed system- which then can be added back in once your gut is better, but I don't think you are ready for all of that right now. When you are, please ask for help. We have all been where you are and there are so many of us ready to help.

Tex has written a book that you may want to order on line that is very helpful

If you can afford to, there is a lab called Enterolab ( check out their web site) where you can send a stool sample in and the results will tell you your main food intolerances.

Good luck and keep us posted

Leah
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Post by Christine. »

Teri
I have a friend that HAD severe migraines. Within a very short time after she jettisoned gluten, they were gone.

Me....I have had psoriasis since I was a kid. I had no idea that gluten free living would help my hugely scaly patches. I changed my diet because of the mc diagnosis. Imagine my surprise a few weeks into the diet when I looked at my knees, elbows, ankles and other assorted body parts and saw almost completely smooth skin. Certainly better than heavy-duty meds! Pasta....look for corn pasta. Bread....Udi's bread is ok. (Not great but toasted its ok.). Nowadays being gluten free in restaurants is kind of the "in" thing.

I believe that we autoimmune-prone people have some commonality. While we are not all alike we do have similarities.

If your body doesn't like steroids give gluten free a few weeks at least. You can live well gluten free.
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Post by jgivens »

The other way you could look at this is that our culture has become addicted to gluten. It stimulates the same area in the brain that opiates do. Therefore it is not hard to be addicted and to crave gluten. The food industry knows this too.

I think that is how I have been able to not want gluten. I see them (foods with gluten) not only as toxic, but as addictive and I might as well be a drug addict or alcoholic craving my substance of choice if I continue to eat them. I figure if there are people in our world who can kick their substance of choice I should be able to kick gluten out of my life. I am lucky that I have a terrible reaction to it. Alcoholics or drug users don't have the immediacy of a bad reaction like diarrhea, unless of course, they are taking Antabuse or some other drug to bring about awful consequences for ingesting such things.

Having been a mental health nurse for years, I have seen people recover from horrendous addictions. I see them as very brave people and I figure if they can kick their addictions, I can certainly kick mine!
Jane
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Post by Joefnh »

Hello Terri...certainly your sense of humor is an asset, having a positive attitude is key in dealing with these issues.

So keeping with your Star Wars theme...

I live on the ice planet of Hoth and have been stuck here since the Imperial army attacked with the Walkers and gluten laden Tie fighters (I think we will have to give George Lucas royalties for this post LOL)... Well actually I just live in New Hampshire, but it's COLD this year. While trapped here I have developed I guess 3 autoimmune conditions including: Crohn's disease, Ankylosing Spondylitis and MC (CC)

For the Crohn's disease and MC I initially was taking Imuran, an immunosuppsant that directly reduces the number of white blood cells, but later after reciving the diagnosis for Ankylosing Spondylitis AS (a condition where your spine wants to fuse itself together) my doctor switched me to Humira (Embrels cousin) as the Imuran is not effective in controlling the AS.

Fortunately I have not had the issues with my white blood cell count going too low. On the Imuran it was reduced from 7k down to 3.8k on average. Both the Imuran and now the Humira have controlled the GI symptoms related to MC and Crohns.

Taking the focus off of meds for a moment, as mentioned finding the foods you may be reacting to is very important as these foods can be and are fuel for the autoimmune fire. Even with the immune suppressant meds, I need to be careful and know quite readily if I for instance accidentally consume gluten. I have found that with these meds that the reactions are muted and that I have been able to eat raw veggies more often.

Taking control of your diet can be done and there are many ways to prepare foods that all in your house will like that are gluten free. Keep in mind while 95+ % of those with MC are sensitive to gluten, many find that there are other trigger foods that are discovered through either trial and error or through food intolerance testing.

So Teri, "use the force" and consider taking control of your diet and you very well may be pleasantly surprised in how it reduces your other non-MC issues. We are what we eat and if what we are eating is not tolerated it does seem to anger our immune systems.
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Teri
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Post by Teri »

Ok, I'm not sure if it's my high midichlorian count or Catholic upbringing that is making me feel all this Gluten-guilt... I had no idea I was so naughty. *said with a sheepish grin* I do like the idea of not being on the Entocort for a long time because in truth, I'm faced with the choice of treating my MC or my PsA I fear. My Rheum wanted to start Mtx and Imuran together next but I doubt now if that's possible while on the Entocort... Perhaps I need to just get the gluten monkey off my back and see if that will do the trick for all that ails me. I will research and try.

Wait...

Yoda says, "Do or do not... there is no try." :)

Thanks for all the hellos and warm welcomes.

I will look into the entorolabs. Thanks for the info on that. I'm sure I'll hate the results and take to bed for a week mourning the loss of a lifelong favorite food. Or at least I will have convinced myself it was once I see it on the list.

Oh I forgot to mention, I had endoscopy the same time I had the colonoscopy and it revealed gastritis too. They have me on prilosec (generic) for that for a couple months. My ENT also said I have LPR (larygopharyngeal reflux)... this was determined after my hospitalization last Nov for cellulitis of larynx. So I wonder if or how MC affects other parts of the GI tract. Or could this be also attributed to the evil Gluten?
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Post by Carriagehouse »

Hi Terri

Love your posts! I am also a newbie, gluten free and dairy free since early December. I have suffered with migraines a minimum of 3 times per week for over 30 years. Since changing my diet, I have had one migraine and I think it was related to sugar ... trying desperately to go sugar free as well. I have been controlling my symptoms with diet changes, acidophilus (some members don't tolerate) and low dose Naltrexone. I'm finding it gets easier every day. Good luck and thanks for the chuckles :)
Leslie
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Post by Christine. »

Uh oh.....Prilosec could really aggravate your mc!
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tex
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Post by tex »

Teri wrote:I also have wondered, Tex, if the years of constipation may have done some damage to my colon that may be reflected in the collagenous colitis.
Similar to Crohn's disease, MC can and does affect any part of the digestive system from lips to anus. Canker sores, for example, are associated with MC (according to the actual experiences of the membership here), but don't expect your GI specialist to be aware of that. The gastritis is the same type of inflammation that is a diagnostic marker for MC (LC). Acid reflux/GERD is also associated with MC.

Please be aware that after you have been on a PPI for a couple of weeks your body becomes dependent on the drug, and withdrawal will trigger a rebound effect. It's not just a coincidence that PPIs are so widely used. The label says they should only be prescribed for short term use, but once a patient is "hooked", they find it extremely difficult to stop using them because of the rebound effect caused by the drug. Christine is correct. Unfortunately, PPIs are notorious for triggering MC for many people.

In fact, MC can be triggered by so many drugs, that in a sense, it's an iatrogenic disease for a significant percentage of the patients who have it. And unfortunately, as an individual, if we are sensitive to any of those drugs and we are taking them, they tend to trump diet changes, to make remission, mission impossible.

And yes, the GERD and gastritis, for example, are almost certainly associated with gluten sensitivity (though your doctors will surely be unaware of that connection, since there have been no random, double-blind, controlled studies done to investigate this concept).

MC is a very insidious, complex disease, and since gluten can cross the blood/brain barrier to cause neurological damage, virtually every part of the body can be either directly or indirectly affected. That's why eliminating gluten from the diet can eliminate so many seemingly-unrelated problems.

May the force be with you.

Tex
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It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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Post by Leah »

Nice picture Teri :)
After you do your research, you will find that going gluten free is really not that hard. .....unless you are a big sandwich eater. GF bread is okay toasted. Rice, quinoa, or rice pasta are actually pretty good, and corn tortillas are still on the menu! Once you get the hang of it, it becomes pretty easy. Do I still miss french bread and pizza? Yes. ( There are GF crusts but I can't have cheese or tomato sauce either) . But i can't tell you how good it feels to only go to the bathroom once a day with no worries.

Let us know how you are doing as time goes on. If you need more help along the way, we are all here for you. Keep in mind that seeing results from going GF takes some time. Patience . This whole healing journey takes time :)

Leah
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