Newbie to LC

[WhirledPeas]

Thanks Zizzie and gluten for your posts and info! :)

Hi Tex,

Thank you for your reply. I appreciate your opinion and feedback. That's why I'm here. :) I may see if I can come in to talk to the doctor when I can get the next available appointment rather than waiting 3 weeks. Maybe I can be squeezed in tomorrow afternoon if I'm lucky. Besides feedback on here and personal experience, is there any information/studies out there that I can discuss with my doctor as far as budesodine not being helpful for C prominent LC with occasional D flareups (1 x month)? Hoping there is something out there. Please PM or email on here if you do have anything. If possible before noon tomorrow. Thanks!

I remember asking if this drug had any significant GI side effects and he said mainly acne and weight gain. When I asked the pharmacist, she said it's been on the market a long time and it's gone generic which is good sign that it's been around a long time. She said sometimes it can cause the same symptoms that you're taking it for, but she changed her tune and assured me that most folks don't have an issue with it.

From your perspective, my only options are to experiment with diet, avoid NSAIDs and do the Enterolab testing to help me with dietary changes? Have other medications been helpful for others on here with similar history and symptoms?

All of this has made me anxious which isn't good for my digestion. Until I learned more about this prescription from reading online and here I was feeling pretty optimistic and chill. You know what I'm now allowing myself time to figure it out. For some reason I was feeling like I had to decide and start taking it ASAP. Heck, it's been since 2006 since I went to a GI, so what's a few more days or a week going to do.

Cheers, time for some TV and chill time. I'll check back later to see if I have a message or an email.

Thanks for your time and concern...

[Leah]

Wendy, I know that when I was taking Budesonide, the sure sign of when to lower my dose was C. One time I took it when i really didn't need it anymore, ( I was going on vacation and thought to hedge my bet) and it made me very uncomfortable. Taking the medsis your decision of course, but if you decide to do it, please pay careful attention to how you react. You might want to keep a journal.

If I were in your shoes, I would definitely take gluten out right now. Do at least panel A if you do use Enterolab and then go from there. The gene test doesn't tell you whether you have celiac or not, it just tells you whether you have the genes for it. Either way, most of us who are sensitive to gluten DO NOT have celiac.

keep us posted on your progress
leah

[WhirledPeas]

Hi Leah and anyone else that would like to pipe in... :-)

If cost isn't a factor, which set of Enterolab tests are most helpful and ideal for someone like me? A+C? Does anyone on here have CIGNA and if so, did they cover some if not all of your GI related gene testing? Do most GI doctors recommend these sort of tests or just the progressive ones? I'm new to all this, but I guess all of us have been new at some point. lol

I was thinking about getting a referral for a nutritionist/dietician for a little support and guidance. From your recent experiences, have yours been knowledgeable about LC or these sort of diets?

My diet is so restricted as it is. It'd be like switching out bland for gluten-free bland. One of my few food joys are cookies. On that note... sweet dreams! :)

[tex]

Besides feedback on here and personal experience, is there any information/studies out there that I can discuss with my doctor as far as budesodine not being helpful for C prominent LC with occasional D flareups (1 x month)? Hoping there is something out there.

Please be aware that most GI specialists consider themselves to be experts, and many/most of them are almost certain to be offended by patients who attempt to prove them wrong by arguing about a treatment recommendation. It would take extreme tact, (and a heck of a lot of luck) to avoid offending a doctor in such a situation, IMO.

That said, if you are intent on trying to convince him that he is wrong, and you happen to have a copy of my book handy, the most relevant information for this situation (that comes to mind at the moment), is an example from the past that can be found in the following quote, taken from pages 40–41 of my book:

Medications that reduce motility
Medications in this category treat diarrhea by reducing the peristaltic pumping action of the intestines, thereby slowing down motility. Lotronex, (alosetron), is one of the drugs in this category, and it’s mostly used to treat IBS. Occasionally, though, it is prescribed to treat MC. For most patients, it tends to be a very powerful anti-motility agent — so effective that it has a rather rocky past, due to inappropriate use when it was first approved for sale. In the year 2000, it was pulled from the market only nine months after its fast-track approval by the FDA because of a number of fatalities associated with its use.8

Lotronex was labeled for the treatment of IBS, but doctors prescribed it not only for use by patients with diarrhea-predominant IBS but also for use by patients with constipation-predominant IBS. A number of those patients in the latter category developed ischemic colitis, obstruction, perforation, toxic megacolon, and other severe, and in some cases, life-threatening issues that sometimes required surgical intervention.

The drug was reintroduced in 2002 with new label requirements that stipulated that before a doctor could prescribe the drug, he or she was required to register with the manufacturer and receive special training designed to reduce the chances of the drug being prescribed to a patient who might be at risk of a life-threatening reaction. The new regulations also stipulate that Lotronex can only be prescribed for use by women with diarrhea-predominant IBS. These days, this drug is not commonly used to treat MC.

Here is reference number 8 (noted at the end of the first paragraph):

8. Willman, D. (2000, November 29). Drug Lotronex pulled over safety fears. Los Angeles Times. Retrieved from http://articles.latimes.com/2000/nov/29/news/mn-58793

In other words, the drug Lotronex was pulled from the market by the FDA soon after it's approval, because doctors were using it to treat IBS patients who had constipation, rather than diarrhea, and it killed a number of patients because of being misused in that way. Budesonide is definitely not as aggressive at reducing motility as alosetron, but that does not mean that it is totally safe to prescribe to patients who have constipation-predominant MC.

If you look at a detailed Entocort EC label, you will see that under Clinical Trials Experience, Gastrointestinal disorders:

intestinal obstruction is listed as an adverse event, so that proves that the risk does exist. Prudence suggests that budesonide is not a good choice for patients who have constipation-predominant digestive issues.

http://www.rxlist.com/entocort-side-eff ... center.htm

Tex

P. S. FYI, Leah is a licensed nutritionist, but I doubt that you will find another besides her who is familiar with treating patients who have MC.

[WhirledPeas]

hi tex,

I might have missed it on the forum, but I don't know the name or title of your book. Do you have a link? :)

I wasn't going to debate it with him. Just tell him I'm uncomfortable to start taking it and would rather try his other suggestions first. Gluten gene testing and trying a gluten-free diet. If that doesn't help, then tell him I'd like to revisit taking it with him.

I remember about ten years ago a primary care doctor debating with me about clinical C. She wasn't convinced I had it like I said I did. That being said it's not severe, but rather moderate and gets relieved with diet, aloe gel tabs, probiotics and lots of water. Previously I used to use Colace more frequently and it usually did the trick. I stopped using it about two months ago because I took it when I thought I might be C, but ended up having D that next morning. Although in the past it's helped me more than "hurt" me as long as I took it before bed not during the day. I doubt many LC'ers use much Colace. This diagnosis is perplexing at first, but it's sinking in and I'm getting a grasp of the lay of the land.

Does the GI medical community & 'trials' agree that long term PPI use may cause MC or is that not officially accepted (yet)?

Reading up tonight... few links and excerpts to share that caught my eye.
http://www.annalsgastro.gr/index.php/an ... w/1011/737

"Some patients have mild symptoms that may be misinterpreted as irritable bowel syndrome [33]. Morphologic findings of MC have been reported even in constipated or asymptomatic patients [34]. The natural history of the condition in these patients is unknown."

"Patients with MC often have concomitant autoimmune diseases [18,20,21]. The most common are thyroid disorders, celiac disease, diabetes mellitus, and rheumatoid arthritis. The occurrence of such associations, reported in up to 40-50% of patients, is variable depending on the study, and differences between LC and CC with respect to associated conditions have been described [18,20,21,35]. Bile acid malabsorption can often coexist with MC, leading to worsening of symptoms [36]. An interchange between ulcerative colitis or Crohns disease and MC has been reported occasionally [37,38]. Whether this is merely a chance association of two fairly common disorders occurring in the same individual or due to common genetic predisposition or shared immunologic pathways remains unknown thus far."
Prognosis

The long-term prognosis of MC is generally good [115-117]. In a follow-up study of CC, 63% of patients had a lasting remission after 3.5 years [115,116]. In another cohort study all 25 patients were improved 47 months after diagnosis, and only 29% of them required ongoing medication [115,116]. After a mean follow-up time of 6.4 years, others reported that about half the patients with MC had no diarrhea and only a minority had diarrhea more than once a week [117]. However, others reported that abdominal pain may persist even after diarrheal symptoms have disappeared [32]. A benign course was reported in 27 cases with LC, with resolution of diarrhea and normalization of histology in over 80% of patients within 38 months [118]. Others reported that 63% of patients with LC had a single attack with a median duration from onset of symptoms to remission of 6 months [20].

I googled Budesodine and Constipation and found this article from Feb 2003. Also mentions about food allergies... Let me know your thoughts on this. Of course this is for CC not LC which I have...
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1773752/

Oh my gosh, I've been reading for 3 1/2 hours! Signing off... :)

[JFR]

You will find the link to Tex's book at the top right hand corner of the page.

The 3 most important things I have learned about treating this disease are:

1. Don't expect my doctor to be at all helpful (I don't take medication so I don't need a doctor).

2. Follow the advice I get from Tex and the other wonderful people on this forum, tailoring it to fit my own needs.

3. Determine what my foods sensitivities are and be scrupulous about avoiding those foods. This can be accomplished either through Enterolab testing (I had panels B and C) or a strict elimination diet.

You are determined to figure this out so I am sure that you will and that things will get better for you.

Jean

[Zizzle]

Wow, great finds!

I am flabergasted by these results:

The long-term prognosis of MC is generally good [115-117]. In a follow-up study of CC, 63% of patients had a lasting remission after 3.5 years [115,116]. In another cohort study all 25 patients were improved 47 months after diagnosis, and only 29% of them required ongoing medication [115,116]. After a mean follow-up time of 6.4 years, others reported that about half the patients with MC had no diarrhea and only a minority had diarrhea more than once a week [117]. However, others reported that abdominal pain may persist even after diarrheal symptoms have disappeared [32]. A benign course was reported in 27 cases with LC, with resolution of diarrhea and normalization of histology in over 80% of patients within 38 months [118]. Others reported that 63% of patients with LC had a single attack with a median duration from onset of symptoms to remission of 6 months [20].

WOW, who are all these MCers getting better spontaneously?!?


Those of us who want further allergy testing need to take this article to their doctors!

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1773752/

Our data support the hypothesis that patients with collagenous colitis have laboratory and/or clinical evidence of food allergy: the high frequency of specific antibodies to food antigens and the increased total IgE levels imply a possible connection between collagenous colitis and food allergy and suggest a possible reason for the paradox of diarrhoea-constipation.

[tex]

Does the GI medical community & 'trials' agree that long term PPI use may cause MC or is that not officially accepted (yet)?

Yes, the association between the use of PPIs and the development of MC (and other adverse medical consequences) is well documented in the medical literature. It doesn't even have to be long-term use. Plenty of problems have developed after only a month or so of use, but the longer they are used, the greater the risk. Many medical research articles have been written on the topic. Here's a link to an abstract of one of them:

http://www.ncbi.nlm.nih.gov/pubmed/21039674

That quote in your post about the long-term prospects of MC resulting in spontaneous remission after a period of approximately 38 months is nothing but BS. It's based on a couple of old corrupt research articles that I debunk in my book. Trust me, if MC resolved on it's own, we wouldn't all be here. Many of us here have had the disease for well over 10 years now.

The last article that you cited (about CC and constipation) is valid. Unfortunately the authors only used blood tests to look for IgE antibodies to food sensitivities. The proper procedure would have been to have used stool tests or colonic biopsy samples to look for IgA antibodies, because the IgA antibodies are the ones associated with the long-term intestinal inflammation that results in the development of CC.

IgE antibodies are very short lived. They're associated with food allergies that result in classic allergy symptoms and in some cases life-threatening anaphylactic reactions. IgA antibodies are associated with the food sensitivities that cause the intestinal inflammation that results in MC.

Tex

[Leah]

Hi Wendy.
It doesn't matter whether you have LC or CC. The treatment is the same. I was also surprised at the remission numbers. I'd like to know where all these people are and talk to them.

As for the Enterolab testing, I'm afraid your doctor will probably think you are wasting your money since most of them don't think food has anything to do with this. I did A and C, but unfortunately in the process, i found out that I am IgA deficient ( so the results all came out negative and useless for me). I had to do it the hard way. Eliminate almost everything I thought would give me problems and then add back in after I felt ready to experiment.

PS I am not actually licensed, only certified when it comes to nutrition :)

Leah

[WhirledPeas]

Jean,

Thank you for your advice and pointing me to the book link. I wish you well... :)

Tex,

Thanks for the link! By the way, when I said ignorance was bliss I was only referring to comprehensive genetic testing to know all potential genetic risks (not in relation to my LC). I hadn't fully read Enterolab's site when I posted that. I was a bit overwhelmed with data at that moment. I'm catching up. Obviously, I'm a reader and want to know more sort! :-)

Re: the CC and constipation article. Are there more studies or articles about MC in relation to budesodine and or constipation that I may have missed? From googling last night, I only found the one in addition to side effect info given on numerous drug sites.

Here another article from that site you shared about PPIs... (posting for others to read... you probably have read them all)

"Is microscopic colitis a drug-induced disease?" Idiosyncratic reaction? hmmm. It seems the two articles aren't in line with each other on PubMed.
http://www.ncbi.nlm.nih.gov/pubmed/23060216

I'm curious if anyone has gotten a Enterolab result back for a certain food item, but has found that when they eat it over a long period of time they have no adverse effects. Just curious how on the mark these results can be. Do you recommend getting skin prick food allergy testing too or is the Enterolab type testing sufficient?

A nutritionist can help me with the gastritis and offering ideas how to get more nutrition. In the last year my hair has thinned out and gotten very dry. I used to have super thick hair. My hairdresser finally said something to me when I brought up the subject. I've been seeing him for 20 years, so he knows my hair well. Thankfully I had a lot of hair, so I still have lots left... just not the same and healthy like before. I've noticed my nails having ridges and vertical lines in them. I bought a liquid vitamin at Whole Foods that I haven't taken yet. I need to look at the ingredients again since I bought it before I knew about LC. I used to take gummy vitamins, but with the gastritis I stopped taking them because of the citric acid in them. I need a supplement or a tolerable shake to use with banana and almond milk.

I can ask a nutritionist for advice to be tailored after I get the testing done. Even if it's just a few visits it might help me. Maybe my visit will get this person more curious about the condition to help others. Trying to keep a positive attitude today. :)

Here's to enjoying the weekend and not thinking about all this until next week! :)

[WhirledPeas]

As for the Enterolab testing, I'm afraid your doctor will probably think you are wasting your money since most of them don't think food has anything to do with this. Leah

On my first visit to my new doctor before I had the endoscopies, I gave him my full GI history, tests done and concerns. He gave me a number of possibilities depending on my endoscopy and biopsy results. This was before I was dx with LC. He said I could try a gluten-free diet to see if that helps or consider getting genetic testing for celiac/gluten. This leads me to think he is more open minded, right? Both of those suggestions are related to diet.

The reason I chose this doctor is because my father recommended him after contracting c. diff and getting cured of it. In the last 13 years, I've had 3 GI doctors. He has been the best so far. He is very personable and takes a good amount of time with a patient. Hoping for the best.

Have a good weekend and take care!

[WhirledPeas]

I feel a sense of relief. I just called my doctor's office. I scheduled a visit for next week and cancelled the one in a few weeks. I mentioned to the receptionist that the person who went over my results (gastritis at that point) and discharge right after my endoscopies suggested I ask the doctor for a nutritionist referral. She said there is an in-house one and that I should talk to the doctor about it when I see him. I don't think any of my other doctors' offices had an in-house nutritionist. Is that very common?

I'm going to save the medication in case I need it down the line. I wish I would have waited to pick it up. Oh well. :)

I think my weekend will be a little more relaxing and fun knowing I've made up my mind about this for now. The stress of deciding what to do made me feel worse. Maybe I need to spend some of my leisure time planning a vacation in addition to all this research.

[Leah]

To answer your question about allergy tests... don't waste your time. As Tex said, they test IgE antibody reactions and you need IgA testing. My doctor insisted on all the allergy tests and I went along with it because it was free to me, but I knew nothing would show up and even if it did, the reaction to what showed up would be your "classic allergy reaction" like itchy eyes, rash, hives, trouble breathing...etc.

Oh, and if you haven't gotten your thyroid checked recently, you should because your thinning, dry hair is a classic symptom of hypothyroidism. People who have MC have a 7 times greater chance of also having thyroid issues. Many of us here do ( including me). make sure your TSH test result is lower then 3.

Okay have a great weekend
leah

[tex]

with Leah about the hair issues.

I'm curious if anyone has gotten a Enterolab result back for a certain food item, but has found that when they eat it over a long period of time they have no adverse effects.

Sure, that happens all the time. Developing a tolerance to a food sensitivity is possible for many people. There are even many celiacs who are asymptomatic. I myself can tolerate casein just fine, but the problem is that just like all those other asymptomatic people, I still produce antibodies to casein, meaning that I still accumulate intestinal damage if I continue to eat it, so I totally avoid all dairy products, despite the fact that they do not cause me to have any clinical symptoms.

This is how allergists use oral desensitization techniques to "cure" food sensitivities. Unfortunately though, the patients continue to accrue intestinal damage if they continue to eat the food, despite their doctors telling them that they are fine because there are no antibodies in the blood. The problem is that there are plenty of antibodies in the intestines, because that's where the damage is taking place, not in the blood.

If an EneroLab food sensitivity test shows that you are producing antibodies to any given food, then you are producing antibodies to that food anytime you eat it, regardless of whether or not you show any clinical symptoms. If you are producing antibodies, then they are causing inflammation to be generated, and this results in intestinal damage.

Incidentally, virtually all of the questions that you are asking are answered in the book, and references are provided to verify them, so you will find it to be a handy reference book.

Tex

[ObsessedMrFixit]

I think it's time I chime in, as a non-standard MCer. I also have LC, diagnosed about six months ago, but symptoms for about 1.5 years before that. I never suffered C, but did suffer some D on occasion. My doc also recommended budesonide, despite my having emphasized that my biggest problem was not D, but fissures. He cited a German study that says 80-some-odd percent of people with MC achieve remission on budesonide. I went home and looked up the study, and instantly got offended. That was one study of 46 people, I think it was, and they only got remission if they stayed on it forever. Anybody who goes off it, and then has to go back on it, has to take more, and more, and more. No thank you! Anyway, all that to underscore one of the things constantly iterated and reiterated here: M.D.s do not know how to treat this disease. You are the only person who can best determine the right course of action for you.

One specific thing I would offer for your consideration is Zinc Carnosine for your gastritis. I was diagnosed with a stomach ulcer at the same time as my LC. Naturally, the GI doctor wanted to put me on PPI's. I knew from my prior research that that such would have been a huge mistake. I was fortunate enough to see a naturopathic doctor who put me on zinc carnosine. Turns out the Japanese have used it for more than 15 years to treat ulcers very successfully. I'm not a doctor, but what I read about zinc carnosine leads me to believe it would likely help with your gastritis. I take the Metagenics brand.

Lastly, I will echo the comments of everyone else here, and say that diet has everything to do with it. I have achieved remission using diet alone-no meds at all. Well, except my zinc. My diet, however, is VERY limited. I eat only 13 foods (meat, cruciferous veggies, bananas, pineapple, and a few other things). But, life this way is much more tolerable than random D, cramps, pain, and fissures.

I am also taking Betaine HCl for my GERD, and its definitely helping. I don't think you should take this, though, until your stomach is healed enough to handle stomach acid. I would venture a guess that certain foods will exacerbate your gastritis-specifically, those foods that cause your stomach to secrete more acid (I think such foods are usually proteins, but I'm certainly not an expert in this area).

Welcome to our crazy internet family. I'm sorry you have a reason to join us (you know i mean that in the nicest way possible).