Newly diagnosed LC, many questions.

[alclarkson]

Hi there- My name is Andrea 31 y/o. I'll try and make this as short and informative as possible. Totally healthy, only on birth control for 16yrs and have been trying to find a good AD/anxiety med for a year or so, that's about all of my prior health hx. I take that back, my periods had either been lighter than normal, spot the week before due, and the last 2 I had missed-while being on birth control. That started 8 months ago. I had a sudden onset and I mean sudden, of diarrhea the 31st of March, 5-7 episodes a day. Awful abdominal pain, fatigue, nausea. 1 week after the onset I started having RUQ pain. I work in X-ray and had been a "test patient" for a RUQ ultrasound 2yrs ago and knew that I had a gallstone w/ no sludge, no pain. I put up with this for 2 weeks and went to my PCP. Had labs drawn- all fine, CT & US- gallstone/sludge, ovarian cyst. Did f/u w/ another US a month later for cyst- it was then gone, gyno changed birth control, just started that this month. PCP wanted hida scan, I asked one of our surgeons' nurse practicioners who is in x-ray a lot (it's nice to have connections) if I needed that test done to justify having my GB taken out for insurance purposes, she said no. PCP then referred me to GI. Went to GI who gave me dicyclomine and nexium. They actually made me feel worse, he set me up for EGD & colonoscopy on 5/6/11. EGD found nothing. Colonoscopy found a couple benign polyps and LC via random biopsies. He wants to treat me w/ 6-8 wks of pepto 3x a day and then see me again. I cornered him in the hallway last wkend at work (again it's nice to have connections) and told him that I was flippin' beside myself that I'm going to be paying him about $1000 to tell me to take pepto 3x a day for 8 wks. I got him down to 2 wks & I'm supposed to let him know how I feel then. I asked him again about my GB- which I feel like he's ignoring and he said we'll talk about it in 2 wks. As of today I've been on the pepto for 1 week. My abdomen pain actually feels a lot better. I'm still having gall stone pain and some LUQ pain right under my ribs also nausea. Yesterday I'm pretty sure I had enough gas to drive across the country. That was very not normal for me. The week before I started the pepto, I was taking immodium once a day and my diarrhea disappeared & I had what you folks call a norman for the first time in forever. However, I still had all the other symptoms and the GIs nurse said immodium was a no-no b/c it wasn't helping to heal the inflammation caused by the LC. Now that I'm taking the pepto it seems like everyday is different and I have a feeling that it's probably my food sensitivities making themselves known.

AAHHHHH Now that you're caught up, my questions:

1- Could my gallstone be exacerbating the LC symptoms and will it either make my LC worse or maybe better if I have my GB removed?

2- How do I get this MRT testing I've read about?

3- I started taking Cymbalta on 2-14, about a month and half before my onset of symptoms. Could this have caused my flare? I would think it would have started earlier than a month and a half if that were so.

That's all I can think of right now. I am super excited to have found this site. Thanks in advance for your help and advice!

[alclarkson]

I should mention that during the EGD, he did biopsy the duodenum which proved that I do not have celiac disease. Should this confirm that gluten stuffs are safe for me to eat then and not cause a flare up? I mean, once I get over this 2 month flare up any way.

[MBombardier]

Andrea! You said, "Yesterday I'm pretty sure I had enough gas to drive across the country."

You've come to the right place to get your questions answered, that's for sure. One thing I can tell you, nothing is the same for everyone. Happy you found us!

[Jan]

Hi Andrea,

Welcome to this site. It's really too bad that you had to find us but hopefully you can find some of your answers here.

I can't specifically address any of your questions. I will tell you I was diagnosed with a large gallstone (no symptoms) after I had a couple of liver test results come back out of line. The Drs. were pushing statins and changing them when one would make me feel bad. That was in March of 05. I had an appointment with a surgeon all scheduled for July to remove my gallbladder. In May my GI system went to pieces with such severity and urgency that I couldn't make it 40 feet to the bathroom. Even after my gallbladder was removed there was no improvement in symptoms. I had my colonscopy in August of 05 and was diagnosed with MC by biopsy.

It was sometime after I was diagnosed that my PCP put my on Cymbalta. I didn't find that it really helped. I quit taking it about 3 years ago. However, the depression got to me and I've been on Pristique for almost 2 years.

I can also tell you that in March of this year I had a follow up 5 year colonscopy and they found no signs of MC, again by biopsy. I have some trouble with a lot of fiber (like lettuce) but not with the other things that I couldn't eat originally. I've done the Pepto routine, without much success, as well as Asacol and Colazol. The only medication that helped me was Entocort.

I did the Entrolab testing and was not determined to be gluten sensitive. However, I could not eat any oat products for the longest time. I now eat some but not on a regular basis.

Please spend time reading as many of the posting on here as you can. You will be some answers and I'm sure it will raise more questions.

This is a great "family" to be a part of.

Jan

[sarkin]

Andrea,

Welcome, and WOW, you've a bit of an adventure getting here. About your gluten question - if your MC was brought on my an Rx or a change in Rx (BC, AD...), you might not be truly gluten intolerant. That would put you among the small minority here - and I may be misreading your chronology, but it sounds as though your symptoms and your other factors don't entirely give that timeline credence.

I hope the Pepto helps you. It did help me in the beginning. Do know that some folks here have had trouble tolerating it, in case your symptoms head in the wrong direction. I'm really glad I had Pepto in my toolkit while first hammered with MC symptoms. Some use Imodium when symptoms kick up - it's very individual.

The celiac testing you had doesn't "rule in" gluten as a safe food. (But it's good news you don't have biopsy-proven damage to the small intestine anyway.)

Hope you're feeling encouraged,

Sara

[tex]

Hi Andrea,

Welcome to the board. So long as one is not intolerant of it, the "Pepto" treatment is typically effective in resolving the symptoms of MC in at least 85% of cases. Dr. Kenneth Fine, (of Enterolab), developed the "Pepto" treatment roughly 15 years ago. The "official" treatment specifies 8 or 9 tablets per day, for a period of 8 weeks. However, unless the GF diet is adopted along with the Pepto treatment, most patients will relapse within a week or two after completing the treatment. Also, quite a few people are sensitive to that much bismuth, and for those reasons, Dr. Fine no longer recommends that treatment as the optimum way to treat MC. The problem is, most GI specialists don't realize that food sensitivities play a major role with MC, so they don't bother to recommend the GF diet to the patient, and consequently, soon after the treatment ends, the patient relapses, the doctor shrugs, and the patient goes back to square one.

To address your questions:

1- Could my gallstone be exacerbating the LC symptoms and will it either make my LC worse or maybe better if I have my GB removed?

Maybe, but as Jan has already pointed out, a cholecystectomy will probably not resolve your LC symptoms. Gallbladder issues seem to be associated with MC, but that surgical procedure does not appear to be beneficial for resolving MC symptoms, (since it will not resolve the inflammation that causes LC).

2- How do I get this MRT testing I've read about?

Mary Beth is our resident expert on mediator release testing, and hopefully she will see your post and have time to respond. After getting the specified blood test results, a food testing program has to be coordinated with a local dietitian who is specially trained, (and hopefully familiar with LC). Mary Beth is a licensed dietitian, she has been through the MRT/Leap program training, and she can surely recommend a dietitian in your area who is qualified to work with you, to complete the program. She is a real asset to this board, since she may possibly be the only dietitian in the country, who is certified to work with that program, and who actually understands MC. If you haven't discovered already, you will soon realize that you have to have this disease, in order to truly understand it.

3- I started taking Cymbalta on 2-14, about a month and half before my onset of symptoms. Could this have caused my flare? I would think it would have started earlier than a month and a half if that were so.

Drug-induced MC is very common, and NSAIDs, SSRIs, (and a number of other drugs), are notorious for causing MC, but so far, the jury is still out on SNRIs. IOW, we're not aware that SNRIs are a risk for MC. In many cases, where MC is drug-induced, just avoiding the drug can bring remission, but for most of us, when the genes that predispose to MC are triggered, the genes that predispose to certain food sensitivities, (primarily gluten, casein, and soya), are also triggered. These food sensitivities subsequently cause inflammation, (by means of an autoimmune reaction), which tends to perpetuate the flare. Entocort EC seems to be the "best" drug for treating MC, but even it cannot overcome the effects of food reactions for some patients. By "best", I mean the most effective, yet relatively safe, drug. The budesonide in Entocort is basically as effective at suppressing the inflammation as prednisone, but the risk of Draconian side effects is greatly reduced, (only about 10 to 15% of the budesonide is absorbed into the blood stream), so it can be safely taken for extended periods of time, if necessary, especially at maintenance doses.

As Sara mentioned, the classic celiac tests are virtually worthless for determining the type of gluten-sensitivity that we have. The only tests that have been shown to be effective for detecting early stage, (or non-celiac), gluten-sensitivity, are the stool tests offered by Enterolab, in Dallas. These tests detect anti-gliadin antibodies in the stool, (IgA antibodies), and they are sensitive enough to detect gluten-sensitivity several years before celiac disease has progressed to the stage where antibodies can be reliably detected by the classic celiac serum tests. As you are probably aware, if a celiac adopts the GF diet, several months later, antibodies cannot be detected in their blood. The stool tests, however, are so sensitive that anti-gliadin antibodies can be reliably detected up to at least a year after gluten has been completely excluded from the diet. In fact, for some patients, the antibodies can still be detected up to 2 years after gluten has been totally removed from the diet, (but the practical testing limit is about a year). If you would like to see examples of typical test results for some members of this board, here is a link to those data:

http://www.perskyfarms.com/phpBB2/viewtopic.php?t=10089

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

Tex

[harma]

Hello Andrea, only want to say: here. I hope this very supportive group will help you to find a way to deal with your MC. This is the best place in the world (and I think the only) where you can find the best and most useful MC information and support.

harma

[natythingycolbery]

Drug-induced MC is very common, and NSAIDs, SSRIs, (and a number of other drugs), are notorious for causing MC, but so far, the jury is still out on SNRIs. IOW, we're not aware that SNRIs are a risk for MC.

However, SNRI's are known to cause other types of colitis and general stomach troubles.

http://www.cchrint.org/psychdrugdangers ... 200-4.html

[alclarkson]

Thanks for all the replies folks! I did about 2 hours of reading through these boards last night and basically have come to the conclusion that to feel better I need to take Entecort and find out what my food sensitivities are. My main concerns with this are I LOVE food and have always been able to eat whatever I want with no concern. I've been tested for thyroid issues and the results have been nil. So, will taking Entecort let me eat whatever I want? And if that is true, will I feel better but still be causing damage to my colon from eating whatever I want? I'm only 31 and don't necessary want to do that if it is true and will do what's best for my body.

As far as the AD, I've tried several- Wellbutrin, Depakote, Citalopram, & Celexa. These all had various side effects that I did not appreciate. The Cymbalta is working well and I'd hate to have to change it. My main issue is that I'm rather moody & get into "funks" as I call them. I just need a low dose of something to keep me level. I prefer something cheap as well. My dad is manic depressive, anxiety, and bipolar. I don't want my kids to have to go through what I did, so it's something I've come to terms w/ and want to take care of. I know that everyone's different, but has anyone had luck w/ a certain med & MC?

As far as the gallstone, it sounds like the issue is neutral as far as having it removed or keeping it will help things or not. I've read that bile salts can irritate the colon, so I've just wondered if the sludge that may or may not be coming at of my GB can be making my colitis worse.

Oh, last of all, what are the problems that ppl have with the pepto treatment? I've read a lot about "if you're tolerant of it, it will work". What should I be looking out for?

Thanks again!

[Gloria]

Hi Andrea

Welcome to our board!

I LOVE food and have always been able to eat whatever I want with no concern.

That's probably true for the majority of the members of the board. It always comes as a shock that food might be causing our D, especially when it never did before.

So, will taking Entecort let me eat whatever I want? And if that is true, will I feel better but still be causing damage to my colon from eating whatever I want?

Entocort will suppress some, but not all of your inflammation. For example, even though I was on a full dosage of Entocort, eating eggs would give me diarrhea within a couple of hours. Most of us use Entocort to regain our lives while we determine which foods are problematic. Hopefully, once off Entocort, we can remain in remission. However, many of us have found it necessary to continue to tweak our diet once off Entocort.

If you can afford it, Enterolab does stool testing to determine which of the main food triggers are intolerances. The tests are highly reliable and will save you many months of trial and error.

what are the problems that ppl have with the pepto treatment? I've read a lot about "if you're tolerant of it, it will work". What should I be looking out for?

I'm one who had problems taking Pepto Bismol. Within a day, I was having worse D than ever and felt terrible. I tried it a second time and had the same reactions. I think if you're going to have a problem, you would within a short time. Not many of us react to it, so the chances are, you won't.

You will find a great deal of information by reading the board; continue to read and learn. We have many years of experience and success here. If you haven't found answers to your questions, please don't hesitate to ask.

Gloria

[sarkin]

Andrea,

If the Pepto hasn't already made you miserable, I think you're among the lucky, as I was. I took 8 capsules/day for a pretty short time. I 'tapered' my dose down a little too fast, being med-averse - I went back to 1-3 per day for another week or so, and would even now take one or two if I woke up with the horrifying realization that I'd ingested something unwittingly that kicked off a reaction (only once or twice in the past 3 months). So my total time was much less than 8 weeks - maybe 2 or 3, which was possible because I eliminated all possible dietary problems in one fell swoop (well, all but one, as it turned out).

Also - I am definitely benefitting, moodwise, from the dietary corrections I've made. (I was not Dx w/mood disorder, but suspect I've been hovering there for the past couple of years.) I hope that same good fortune happens for you. There's definitely depression in my family, and looking back (a generation or 2), I wonder how connected that was to gluten sensitivity. I greatly respect your wish to ensure that your kids don't go through the upheaval that a parent's mental health struggles can bring to the family.

I know what you mean about food - our days are very much centered around meals. It's how we socialize; my husband and I hang out in the kitchen talking and cooking - it's just the heart of our home and our lives. That is still true for us, and I'm sure it will remain the case for you as well.

Entocort has helped many here. I feel lucky that I have so far not needed it. If you try dropping all the likely food suspects, the Pepto might be enough for you. (And then you can pursue Enterolab testing plus your own testing to see what you can safely add back to the diet.) If that seems daunting, and *if* you can tolerate the Entocort, it's made a big difference for many (I'm sure you're aware of the need to wean off that class of drugs slowly). I believe that because you're young, and your MC appears to have had an immediate trigger, you might be able to bring yourself to remission relatively quickly, compared to some here who searched for a dozen years before finding the answers to their symptoms. I hope you're optimistic for you, too!

--Sara

[tex]

Andrea,

To add to what Gloria and Sara wrote:

So, will taking Entecort let me eat whatever I want? And if that is true, will I feel better but still be causing damage to my colon from eating whatever I want? I'm only 31 and don't necessary want to do that if it is true and will do what's best for my body.

Maybe. Some people are able to do that. I'm guessing that those are the ones whom the GI specialists are able to "successfully" treat. (Of course, this requires a regular, maintenance dose of Entocort, but some people are able to get by with 3mg per day, after reaching remission with a normal therapeutic dose). Many GI docs won't prescribe Entocort as a maintenance drug, (they seem to think that it's prednisolone), so the poor patient has to relapse, then get a new subscription, and repeat the cycle over and over again.

Unfortunately, most of us here, find that Entocort alone will not totally resolve our symptoms, so we have to make diet changes, in addition to the medication. The problem is, if we have food sensitivities, and we continue to eat those trigger foods, we are constantly generating new inflammation, so the inflammation says one jump ahead of the budesonide's ability to suppress it.

As to whether or not damage is continuing to accrue, even though one might be asymptomatic - yes, the damage is still there, even though the Entocort is pretty good at masking the clinical symptoms for many of us. The big question is "how does this affect other health risks". And the answer to that, of course, is, "we don't know - these are uncharted waters". As you are probably aware, research has shown that asymptomatic celiacs have no higher risk of developing lymphoma, than celiacs who are being properly treated by means of the GF diet. However, I have a nagging suspicion that this does not exempt asymptomatic celiacs from developing additional autoimmune issues, and MC is definitely connected with a relatively high risk of developing multiple autoimmune diseases. (Over the years, we've done numerous polls, which show all sorts of interesting associations).

The bottom line is, the safest treatment is diet management. This disease can be so debilitating for some of us, however, that my recommendation is always to get the symptoms under control as quickly as possible, by whatever means works best for the indivual, and sort out the details later. (IOW, it doesn't matter whether or not someone is eating a balanced diet, if everything is going through undigested, anyway. Malabsorption of nutrients is a major problem with this disease. Be sure that you are getting enough vitamins D, B-12, B-9, B-6, etc., and be aware of the risk of electrolyte depletion. Potassium becomes depleted rather quickly when someone has secretory diarrhea, and many of us eventually become deficient in magnesium, and possibly other minerals.;

Oh, last of all, what are the problems that ppl have with the pepto treatment? I've read a lot about "if you're tolerant of it, it will work". What should I be looking out for?

As with Entocort EC, (even though these symptoms are not normally listed as common side effect risks, we find that they are a somewhat common problem for members here), quite a few of us develop adverse neurological events if we take high-dose Pepto-Bismol. Those events include, (but are not limited to), headaches, balance issues, vertigo, blurred vision, tunnel vision, paresthesia, etc.

You're most welcome,
Tex

[natythingycolbery]

Hey,

In terms of AD's too, the ones that people are most unlikley to react to are Tricyclic antidepressants however several people on this board have had bad side effects with them, so it may be worth asking your GI what they think and take it from there.

I was on them myself for a short while but stopped them because they where compleley knocking me out for 22hours a day! (I can't actually remember what i was on!)

[mbeezie]

Hi Andrea,

Welcome! I can help you find out how to get MRT tested. If you are interested send me a private message and I will give you some info and see if there is a dietitian in your area that can help.

Mary Beth

[alclarkson]

Welp, I'm done to 1 pepto a day and seem to be doing OK. I ate some pasta yesterday and that about killed me though. I started my probiotics yogurt experiment today. My intestines were crazy noisy this evening and maybe some extra gas, but when I went number 2 it was splashy like D, but formed like Norman. I was quite surprised b/c I was not expecting that at all. I've got an appt on Wednesday to see about getting a change in AD from the SSRI I'm on to see if that will help- my symptoms started roughly 1 month after starting it.