Newbie here. diagnosed w/ "borderline" Microscopic

[Jan]

Hey Marla,

Welcome to the group.

I know it's hard to make the decision about how you are going to achieve remission. Let me put in my two cents worth. Diet has a lot to do with this. The down side of that is that while you are working on finding and getting rid of all the triggers, you still have the daily struggle. Diet is definitely a long term goal. Right now, especially with a young child, it might be of benefit to resort to meds to get you started. You definitely need a supportive medical team. It's not easy to find, but keep trying. I had to use steriods to get my diarrhea to settle down. The first time was with predisone. It's a steriod that really takes it's toll on the whole body. The last flare (18 months ago) I used Entocort. This also is a steriod but confines itself more to the intestines. I know it doesn't work for everyone, but I had results within a week and was able to wean off of it in 3 months. Since then, it's been diet.

Good luck in whichever decision you make. You know you will find lots of support from this group.

Jan

[tex]

Hi Courtney,

Well, according to the literature, (mostly authored by doctors, of course), for patients whose colitis is caused by a medication, all the patient has to do, is to stop using the medication, and the symptoms will completely resolve. Unfortunately, for most members here who find themselves in that situation, to the best of my knowledge, all but a very few of them have either had no success at all with simply terminating use of those meds, or they had some success at first, but over time, their symptoms returned, as their gluten sensitivity continued to develop and intensify. I believe there are at least two or three members, though, who mostly remain in remission, with no treatment at all.

I say "mostly remain in remission", because they occasionally may have a flare, (sometimes years apart), but after they regain control again, they are able to enjoy long periods without any symptoms, and without any treatment. I believe some of them may have to be a little careful about certain foods in their diet, (of course, who doesn't, even in the general population), but they definitely don't attempt to follow a strict GF, DF diet, nor do they take any meds for their MC. One of those members has, (within the last year), developed UC, unfortunately, so she is probably taking meds now, but I'm not sure - she hasn't posted in a few months.

You've posed an interesting question. Thinking about it, we have quite a few members whose MC was apparently triggered by antibiotics, and for them, eschewing any form of treatment doesn't seem to be an option. In fact, many of them seem to have the most severe symptoms, (more intolerances, and a more difficult task achieving remission). That may be due to the fact that antibiotics seem to trigger MC by upsetting the critical balance of bacteria in the gut, and that opens the door for all sorts of complications.

Consider this: If we have been hosting a certain population balance of gut flora and fauna for many years, then our digestive system is in tune with them, and they are in tune with our digestive system. IOW, they not only enhance our digestion, but we come to depend on them. They become an integral, and possibly essential, part of our digestive system. We become truly symbiotic. If they are suddenly wiped out, by an antibiotic treatment, what are the chances that we will ever be able to reestablish an identical "balance"? Probably slim to none. That would have to have a profound effect on our overall digestive health. From that point on, our digestive system is forever changed, and the change has to be adverse, because the best, (really the only), opportunity to establish a truly symbiotic population of flora and fauna in our gut, occurs within the first few weeks after birth. Bear in mind that this is just my opinion, I didn't find it chiseled on any stone tablets. LOL.

Maybe some members who blame meds for their MC will chime in here, but I'm thinking that the only ones who have been able to enjoy remission without some form of maintenance treatment, are those whose MC was apparently caused by NSAIDs. My memory is not good enough to recall everyone's suspected triggers, but I can't recall anyone whose MC onset was connected with PPIs or SSRIs, for example, who has been exempt from treatment.

Genes seem to play a significant part. We don't understand very much about genes and their influence, yet, but it's already apparent that those with double DQ pairs, (such as double DQ1, or double DQ2), have more intolerances, and a much more difficult time achieving remission. So far, we have five members in the double DQ1 "club", and only two in the double DQ2 "club".

Tex

[katinchatt]

Good Morning Marla,

See, I just knew these fine folks would come to your aid. It's a lot to take in, especially at first, only you will know what direction you feel comfortable going in. I know your tired, and have to balance a plate full right now, being a new Mom and all. I've pasted my threads below, when I first started asking about Entocort. (It may answer a few questions you have about it, and the other drugs they prescribe for MC) It sounds like a scary drug, it did to me too at first, but I've had no side effects. More important, it's working, and it started working in less than a week. (For some it takes 2 weeks) Most important, it's actually healing me, not just masking my symptoms. 2 weeks today and I'm only taking 2 Lomotil and 1 Librax per day (for insurance) I'm not for certain I even need those! Don't underestimate your youth either, you definitely have that going for you.

Just consider it along with the other great suggestions posted here. Also, the fact that yours has been caught so early I hope motivates you to consider meds. along with diet so you can quickly turn this around. Minimal won't stay minimal for long. I think my beginning to end/diagnosis, was only 3 months. (Of course this is just my theory ~ Kats have been known to be wrong ;)

I feel sooo good that I'm going to be in a Bowling Tournament this weekend. Something I wouldn't have dreamt of doing a month ago!
I know it's sounds like such an ancient thing to do, but I love to bowl. Beats sitting at home running to the bathroom every 15 min. which was my norm just 3 weeks ago.

Marla, I need to say that in no way, do I want imply that drugs are your only means to getting well. Certainly I don't consider myself an expert in any of this, as you can see I was only diagnosed, and joined this board a little over a month ago. Our Doctor's job is to heal us, in many cases that involves drugs. Though your PCP did just, throw-out-meds "he thought" would help, clearly it's not what you need or want. Doctors have little or no experience with this disease (the vast majority) they just hear the words, "diarhhea & pain" can we blame them? However, thank goodness, there are drugs in a whole different category that are actually made to heal, and not mask or pacify. Those are the drugs I feel, especially in our case, that God gave mankind the brains to make a difference with. I don't want to come off as being a "drug pusher" just someone who knows a little bit (thanks to everyone on this board who has helped me) about demanding the very best care, and for me that included a true marvel of modern medicine.

http://www.perskyfarms.com/phpBB2/viewt ... ght=#54123

http://www.perskyfarms.com/phpBB2/viewt ... 04&start=0

Have a great weekend!!

[JLH]

, Marla. We're glad you were invited to join our family and I know you will be, too.

I was backwards of most PP. I found EnteroLab first and set out to find its legitimacy and, very thankfully, found Tex and the PP.

I did all the EL testing in two parts. I went GF and was doing amazingly well but after a time that changed. I then did the soy, egg, and yeast test. Unfortunately, I tested positive for soy as well as gluten and casein.

I am trying diet, no meds for my LC.

www.enterolab.com

[marmiran23]

Good Morning Kat,

I just want to thank you once again for being so supportive! I am so glad you introduced me to this forum! It's been wonderful!

I am definitely not opposed to taking drugs, I didn't mean to come across as "anti-medicine". I believe whole-heartedly in medicinal treatment as long as the benefits outweigh the risks. It just boggled my mind that my PCP was so eager to give me vicadin for my period cramps. Yeah, that's just what I need, doc. Get me hooked on pain killers while I'm taking care of my toddler! I don't know what I'm going to do when my period rolls around though. I had been taking lots of Ibuprofin, not knowing how much this drug was causing my MC to go into serious flare ups.

Anyway, I am glad that you are feeling so much better! My best girlfriend is a veterinarian (she only works on large animals, namely horses), which is basically a underestimated, underglorified, and underpaid medical doctor. anyway, she's been helping me SO much w/ all of this b/c surprisingly horses are MUCH like humans in that they have many of the same diseases including colitis. She was weary of me trying prednisone, but I haven't told her about Entocort. I'm curious to see what she thinks about this.

If the probiotics don't help, I'm considering going to a naturopath doc. I really don't want to do the GF diet b/c I'm trying so hard to get back to a healthy weight, and I'm not sure how I'll ever accomplish that w/ GF.

Have a great weekend!

Marla

P.S. I don't think participating in a bowling tournament is an "ancient thing to do" silly! And I'm probably the "oldest" 26 yr old woman you'll ever meet! Maybe I'm just an old soul.

[marmiran23]

Hi Joan!

Thank you for the welcome! Question for you (or for anyone else who can help): I see that most everyone here knows which foods trigger their MC. How do I get tested to see my food intolerances?

Marla

[JLH]

www.enterolab.com

[marmiran23]

Wow! This is amazing! I'd never heard of this before! So I can just perform the tests at home, they pick up my specimen, and then they send me the results in the mail? It says that costs of tests are commonly reimbursed by insurance companies? Did your insurance cover these tests? They are a tad pricey.

[marmiran23]

Come to think of it, I think I've already been tested for Gluten sensitivity and it was negative. I think my GI did that when I had my upper GI endoscopy.

[katinchatt]

Marla,

Most likely your Doctor tested you for Celiac, that test almost always comes back Neg. Enterolab tests for food intolerances/sensitivities, those don't show up on biopsies or blood work.

My insurance would not cover Enterolab testing. I was wanting to do it as well, so "while" I'm on Entocort I could begin eliminating any intolerances I have. That way, when I wean off of it, I would be in a better position in that those foods had already been eliminated. However, yes it's a tad pricey, so I'm going to wait until after the holidays and have it done in January. At that point I'll still be on Entocort for several months so I'm hoping waiting a couple of months won't make a huge difference, but I'm sure - the sooner the better.

[Jan]

Dear Marla,

I had the gluten test by Enterolab and a very small portion of it was covered by my insurance.

If you want to try some things on your own, start by giving up a lot of things and be on a bland diet for a week or so. Keep a food diary with what you eat and how many BMs you have in a day. I also keep the consistency of the BMs as a way to help. Most folks have found that a trigger food affects them within 24 hours. So, if I ate an oatmeal cookie (I am allergic to oats), I can tell by my BM record - more violent and runny. If you do this, just be careful not to add too many things too fast.

As far as a bland diet goes, think of when you have had the flu - rice, baked or broiled meat, well cooked veggies, canned fruit.

This is one way that I found out what I couldn't eat at first. Hope it helps you.

Jan

[tex]

I really don't want to do the GF diet b/c I'm trying so hard to get back to a healthy weight, and I'm not sure how I'll ever accomplish that w/ GF.

If you are underweight due to MC, it's because you have a serious malabsorption problem, and if that's the case, I can guarantee that you will not be able to gain any significant amount of weight, until you get that malabsorption issue under control, no matter how healthy your diet is. The reason is because all those healthy nutrients are just flowing right through you, due to the inflammation from the MC. You are absorbing very little of the nutrients in your food, because your small intestine is incapable of absorbing the nutrients, and will remain that way, until the inflammation is reduced or eliminated.

Where did you get the idea that it's difficult to gain weight on the GF diet? It might be difficult until your gut heals, but that will be the case no matter what you do. I can assure you that I was on the thin side all of my life, and I was very underweight while my gut was healing, but now that I'm on a GF diet, and in remission, my main problem is keeping the weight off - just the opposite of what you are concerned about. Most GF foods, (especially GF deserts), are very high in calories.

As Kat pointed out, the celiac tests are worthless for anyone except celiacs. Virtually all of us, (except those who actually have celiac disease), test negative to those celiac tests, and yet we are very gluten-sensitive - just as gluten-sensitive as celiacs. The stool tests at Enterolab are the only reliable tests available, to detect food sensitivities for people with MC.

By the way, outside of the opiate-based painkillers, acetaminophen, (Tylenol), seems to be the only safe painkiller that we can use, though some herbal remedies may work, (I'm testing boswellia, right now).

I hope that you decide on a plan of treatment that will actually work, because you will find that it is much easier to enjoy taking care of that new baby, if you're not suffering from the symptoms of MC, constantly. MC can be a very debilitating disease, for many of us, until we get it under control.

I wish you the best of luck in your journey back to health,
Tex

[katinchatt]

Hello Marla,

Just checking in with you to see how you have been feeling this week. Keep us posted!!