15 Yrs MC without relief - should I consider Meds?

[bobh]

Diagnosed MC 2003 but symptoms for 15 years. Discovered Dr. Fine in 2003, got tested = gluten sensitivity, strict avoidance ever since but NO improvement. Did the Pepto treatment and (like many) got a little better but not permanent. Immodium "delays" the D.

Thank you for this site - I studied it for 3 days including the "what we have learned" and FAQs. I read everyone's personal experience with Meds, and understand that we all have unique situations. Some benefit, some just get the side effects.

With that said, I am thinking about asking my Gastro to try me on Colazal based upon some people's success, and that it isn't a steroid. I have to travel a lot in my job, get up early and hit the road. I have had explosive D for years, and need to get some symptom relief. I started the SCD 3 weeks ago, too early to tell, my yogurt maker arrives soon and that may help me do that program more fully.

Nothing over the counter is working for me. Should I ask for a script of Lomatil also - or is that too similar to immodium? When the MC is raging, my colon doesn't feel normal. It feels like dried "non flexible" inflamed tissue that cannot tolerate anything in the bowels (dumping).

[Peggy]

Hi Bob and



Sounds like you've done your research here so you do know it can be trial and error as we all react so differently. My success was with long-term Asacol and short-term Endocort (steroid) usage. I only used the steriod because I was silly enough to drop the Asacol after I thought I was "all better". The diet didn't help me, but then I only gave it a less than three month go. The Pepto treatment did nothing for me except turn everything black LOL. I DO avoid things that make me gassy (cauliflower and broccoli) and spicy foods don't sit well with me.

I haven't tried Colazal or Lomotil, others will be along to share their experience.

Don't be shy to ask anything here...we're not

Keep hydrated and avoid stress....easily said, heh?

Peggy
Collagenous Colitis dx'd January '03

[mle_ii]

Do you take the liquid or capsule Immodium? Supposedly the new formula liquid hasn't been tested for Gluten.

Also, though I don't have symptoms as bad as most. My Lymphocytic Colitis was termed mild inflamation. Luckily I caught it earlier or didn't get it as badly.

I found that getting rid of gluten, soy, dairy seemed to help the most. That and limiting fructose in my diet.

For the most part I'm a lot better than I was. I still get proctitis here and there which I attribute to cross contamination, which I'm being more careful about now. But very rarely do I get D anymore.

As far as medication goes I'm not sure. I didn't find that meds helped much and I'm pretty anti med anyways. The only thing "med like" that I take are fish oil caps, digestive enzymes, a multi vitamin, 500 mg C, 500 mg Calcium, and probiotics. I do take a B12 and Folic Acid every once in a while and Cod Liver Oil every once in a while. And I carry Immodium Capsules around with me, but haven't used them in a long time.

HTH,
Mike

[bobh]

liquid or capsule Immodium? Supposedly the new formula liquid hasn't been tested for Gluten.

I take the capsules (haven't tried the liquid). When the MC inflammation is "raging", immodium does NOTHING. Have had occasional relief when the inflammation is somewhat in remission, the immodium (pills) will prevent a vicious cycle of "dumping" -> more inflammation -> more dumping.

But that "band-aid" is just not working anymore, and I am desperate. Do any of you have a strong opinion NOT TO TRY Colazal? Is it safer (or more effective for you) than Asacol? Does Lomotil help any of you when Immodium ceases to have any effect?

The "Gluten Free" theory of Dr. Fine makes a lot of sense on paper, but after being STRICT on a GF diet for 3 years, I have come to the conclusion that my body treats ANY food as "ammo" rather than nutrition, if the inflammation is raging. Smaller frequent meals provide a less explosive payload - compared to the morning after a large dinner.

[kate_ce1995]

Hi Bob, and Welcome.

Our resident expert on colozal (I think expert...one person who comes to mind might be a better representation) is Barbara, and she is laid up with the flu at the moment. But I'm sure she'll welcome you when she sees this. She has been stopping in despite feeling cruddy.

Many of our members are intolerant to multiple foods. And did you know Dr. Fine now tests for a lot of these other common triggers? He has tests for gluten, casin (protien in milk, which you probably already knew), soy, yeast, and egg I believe. Some here also have problems with corn.

I think Polly was keeping track and those who didn't respond to the gf diet have found other food sensitivities. I think Jean wrote up a description of the elimination diet. Its more restrictive at first, but helps get all these possible sensitivities sorted out faster than the trial and error method some of the others have used.

A few, Joanna comes to mind and Cristi is just starting this approach, have taken short term Entocort while on the diet to get the system settled down enough for the diet to be effective. Entocort is much more tolerable for many because it acts only on the gut as opposed to the systemic steroids like prednisone.

Lets see. Lomotil did nothing for me. I found my MC was triggered by ibuprofen. Are you on meds for anything? NSAIDS, GERD meds come to mind and MC inducing. If you are on anything you might want to 1. check that it doesn't contain gluten, and 2. see if you can try an alternative med or none at all for a while and see if that helps. My D cleared up after just a month of not using ibuprofen. I am gluten sensitive, but I discovered that quite by accident and the symptoms of gluten for me are initially aches and pains although the gut reacts negatively eventually. But some here get the D within hours of eating gluten, even the minutest amount.

Well, keep reading and chatting with us, and I'm sure you'll find your road to recovery. It is different for everyone here, but combinations of the things we learn from eachother have helped almost everyone.

Katy

[mle_ii]

liquid or capsule Immodium? Supposedly the new formula liquid hasn't been tested for Gluten.

I take the capsules (haven't tried the liquid). When the MC inflammation is "raging", immodium does NOTHING. Have had occasional relief when the inflammation is somewhat in remission, the immodium (pills) will prevent a vicious cycle of "dumping" -> more inflammation -> more dumping.

Agreed, when I get inflamed, the proctitis acts up, pretty much nothing helps. I just have to rest when I can. :(

But that "band-aid" is just not working anymore, and I am desperate. Do any of you have a strong opinion NOT TO TRY Colazal? Is it safer (or more effective for you) than Asacol? Does Lomotil help any of you when Immodium ceases to have any effect?

I wish I could help here, but I cannot. Others most likely can, but most folks aren't up here yet.

The "Gluten Free" theory of Dr. Fine makes a lot of sense on paper, but after being STRICT on a GF diet for 3 years, I have come to the conclusion that my body treats ANY food as "ammo" rather than nutrition, if the inflammation is raging. Smaller frequent meals provide a less explosive payload - compared to the morning after a large dinner.

Agreed, when I'm inflamed I cannot even eat the foods that are ok until it calms down. I usually calm it down by eating very little fiber and going back to very simple foods. Meats, pototos, rice, no processed foods, etc. But I have found that not eating certain foods has helped some in not getting inflamed to begin with.

I'm guessing that drugs would help folks at least get out of the cycle. I wasn't ever deeply into the disease, so take what I say with that knowlege.

Wish I could help more.

Mike

[tex]

Hi Bob,

Welcome to our humble board. To get right down to business, are you avoiding anything in your diet other than gluten? Many of us here find that if we are gluten sensitive, we are also sensitive to casein, (protein in milk). Many of us also have to avoid things such as corn, soy, (in fact all lectins), and a few other things, and, of course, we have to avoid all their derivatives.

I'll assume that you have eliminated all traces of gluten from your diet, (have you checked lists of food derivatives that contain gluten? -- Jean has posted lists of trigger food derivatives in the Information on Diet forum).

To answer your question, I would recommend that if you have not tried eliminating all dairy products and their derivatives from your diet, you should try that first, because it if is affecting you, eliminating it could bring relief in just a few days. It you have tried cutting out dairy products, without any indication of improvement, then there is a good chance that you may be intolerant to multiple food items, and tracking them down can take a while. In that case, yes, it might be a good idea to consider trying a med, to help allow your gut to heal.

Be aware that some meds seem to make some people even worse, so you may have to try something else, if you don't see improvement in a reasonable length of time. Either Asacol or Colazal would be a reasonable place to start, and if neither of them provides any relief, you may have to try Entocort, (budesonide), which is a corticosteroid, but it has provided relief for many of us, either independently, or as part of a diet program.

The OTC stuff simply can't control the inflammation, and until you can get the inflammation to subside, you will continue to actively react, even to some foods that you are not really intolerant of, simply because they irritate the colon, when it is in an inflammed, and therefore hypersensitive condition.

Tex

PS Balsalazide, (Colazol), has been shown in research projects to be more effective and better tolerated than mesalamine, (Asacol), in the treatment of acute ulcerative colitis, so it's possible that it might work better for MC also, but I'm not aware of any proof of that, so that's just a WAEG.

http://www.ncbi.nlm.nih.gov/entrez/quer ... t=Abstract

[bobh]

Thank you all for taking the time.

Katy asked: Are you on meds for anything? NSAIDS, GERD meds come to mind and MC inducing.

Nope. I really haven't been taking anything other than occasional immodium, and rotating attempts with the Pepto Bismal regimen (temporary relief but won't stop the big-time flare-ups).

Mike wrote: Agreed, when I'm inflamed I cannot even eat the foods that are ok until it calms down.

Yeah, that kind of sums it up when the condition is "raging".

Tex asked: are you avoiding anything in your diet other than gluten? Many of us here find that if we are gluten sensitive, we are also sensitive to casein, (protein in milk). Many of us also have to avoid things such as corn, soy, (in fact all lectins), and a few other things, and, of course, we have to avoid all their derivatives.

I had been VERY strict in avoiding gluten, to the point of not eating anything that I didn't prepare myself for over a year. There were some weeks where it seemed better - but whenever the inflammation cycled back, "nothing" would stop the "dumping". I have other auto-immune issues since a 1986 CFS relapse, so I have a very challenged immune system (but it's not AIDs). I cut out dairy 4 years ago, and that didn't help me. I lived on the "rice protein powder" for 2 weeks so could introduce foods and see what reacted (Thorne product, Metagenics also makes one). The problem is, I never cleared up - so couldn't tell what "introduced" foods were making me worse. So it goes back to the theory that when inflammation is really bad - all food becomes "ammo" and stopped looking for a specific allergen or "trigger". If the SCD theory is correct, the "non-allergenic" rice powder was not being digested by my (compromised) digestive system, so there was no "break" from the inflammation.

For the last 3 weeks I started the SCD, cut out ALL GRAINS, but wasn't properly prepared to start the diet as no yogurt maker (they run it for 24 hours to fully "digest" the lactose) and I am a lousy cook, didn't have the nut flour, etc. I am phasing into doing that diet properly - and will post if it helps. What I am saying is that for the last 3 weeks I eliminated the "usual suspects" and am just going through a rough stage of the illness for prolonged months (usually I can get a break for a week or so between spells, but not now).

Tex wrote: The OTC stuff simply can't control the inflammation, and until you can get the inflammation to subside, you will continue to actively react, even to some foods that you are not really intolerant of, simply because they irritate the colon, when it is in an inflamed, and therefore hypersensitive condition.

Thanks - that really hits it on the head. I am gonna call my gastro (been a few years) and schedule an appointment.

Barbara wrote: I was kept on Colazal as a maintenance but was taken off and now I am *controlled* with my eating habits---and avoiding certain fillers ---which aren't that many---

Thank you so much for the support! The one "food" thing I am certain of is that processed food sends me straight down to the bottom. Nice to get a confirmation from you folks that have similar issues - as noted throughout this most informative site. Well done folks!

[Polly]

Hiya Bob and

So happy that you have joined us! You will find kindred souls here, along with a lot of great info and support. It's always so much fun to have a .

I am the original one here (I think) who discovered that I had multiple intolerances in addition to gluten. (Check out that list of intolerances under my photo to the left). Almost all of them I discovered by trial and error - long before Dr. Fine had tests for some of them. You might want to consider getting his tests for yeast, dairy, eggs, etc., before you start making more dietary changes. It would have saved me a lot of grief and suffering if these tests had been available 4-5 years ago when I first had my gluten test with Dr. Fine.

I also tried the SCD......without much luck. You see, I have a full dairy intolerance......not just a lactose intolerance. With a lactose intolerance one cannot tolerate the milk "sugar" (lactose), so milk products without lactose (like aged cheeses and the SCD yogurt) are tolerated. However, with a full dairy intolerance, one cannot tolerate the milk protein (casein) and this means that NO dairy products are tolerated (no milk, cheese, ice cream, butter, yogurt, etc.). It seems that most here who have multiple intolerances have the full dairy intolerance......not just the lactose intolerance, unfortunately.

I can't imagine what you have been going through for the past 15 years, especially since you are required to travel so much for work. Are you at least travelling in the same area, where you know the location of all of the public toilets?

I am really suspecting that you might be multiply-intolerant. Especially with your comment that you cannot tolerate any processed foods. You HAVE to meet Matthew here - not only is he terrific with tips about how to buy and eat natural, "real" food, he is a woodworker/cabinet-maker. (I saw where this is an interest of yours too). I don't want to overload you with too much info at once, but some of us multiply-intolerants have had the best success with the caveman or paleo diet. We can tell you more about it if you are interested.

I think your decision to take medication for now is a wise one. You can continue to fine tune your diet (if you wish) while the medication helps to reduce the longstanding inflammation you have had.

Please don't lose hope! As you have seen from reading on this website, almost everyone finds a way to control their MC. Even with all of my intolerances, I am totally symptom-free and in longterm remission on diet alone. It IS possible to triumph over this miserable disease!

Love,

Polly

[bobh]

a full dairy intolerance......not just a lactose intolerance

Ouch. Well, I sure would like to know if that is going on with me - so I likely will get that new test for it. I did have a full range of tests from "Great Smokies Diagnostic Labs" which included dairy - but I would trust Dr. Fine's labs to be the last word on it.

Are you at least traveling in the same area, where you know the location of all of the public toilets?

Sometimes, but when Hurricane Katrina hit - I was asked to inspect houses there. For 5 months it was like doing the "Aztec 2-step with no destination".

The east side of Lake Pontchartrain (where the eye of the storm went) was like a war zone, and the fast food places with bathrooms were closed for 2 months. When they did open, it was only the "drive through' because of limited staff. I was told the staff went on "unemployment" but didn't volunteer to go back to work when the roads were cleared. Many of them were working under the table, gutting the flooded houses for cash, etc. It was really hard to find a bathroom.

I am considering meds - so I am better prepared for the next big storm. I do enjoy helping people, and I saw a lot of people at Katrina who couldn't live in their house (all the way to Mississippi - very widespread damages).

[Lucy]

Hi Bob,

Glad to have you aboard!

My guess is that you live in Florida.
You don't have to answer that, of course, but that's my guess.

One thing you MIGHT want to consider would be asking your GI to give you a little run on Entocort while you're learning to eliminate a few more things. From some of the articles I've read lately, it seems to be the most successful in the meds category.

I was fortunate in that I could tell in a few days that SOMETHING was working, but then I had some body symptoms, other than diarrhea, which had progressed to being so bad by the time I started the diet, that it was pretty obvious. The diarrhea did slow down right away, and as soon as I sent my first specimen in to Enterolab, I began removing all dairy/casein immediately, so that when the results were back, I'd already be that much better. Sure enough it came back positive. I had just done the gluten and casein that first time, and had already removed the gluten a couple of months before.

I'm a bit surprised that a casein test wasn't included with your gluten test. I had these first two allergens tested in early 2004, and they were lumped together back then in the big panel with the genes, etc., but if my memory serves me correctly, even the individual gluten tests included casein.

Did you not do the fecal fat and anti-tissue antibodies and/or the gene panel as well? Perhaps I just missed a change -- must've gotten in under the wire on those.

After removing those two, it became pretty obvious that eggs were a problem, even before testing for those, particularly since I only ate them once or twice a week, and the next day, they would produce diarrhea, followed by back to whatever normal was for me then! Ha! (Your stools do sometimes go through stages on the way back to solid.)

As you are aware, the egg test came with the dietary yeast test, also positive, but of course, it's impossible to totally avoid it, but I eat plenty of veggies (mostly) and fruits without any problems.

If I were to eat an allergen free baked thing with baker's yeast on a regular basis, then I would expect to eventually begin to have reactions, but I won't intentionally ingest any of my triggers like that.

I have yet to test for soy, but have the kit just sitting here waiting for me to, er ah, "get off the pot." Maybe it can get mailed by next Wednesday, at least. I already know that I've had one discernable reaction maybe a year and a half ago which definitely to some delicious gfdfyf waffles that contained quite a bit of soy flour.
I believe that soy is a big problem for lots of celiacs and MC'rs, particularly in the form of soy flour, as I learned the hard way.

My sister who has the same genes and foods she's sensitive to -- just got her results back, and she tested positive to soy, so that makes two reasons why I know that my test will be too. She caught hers in the early stages, so this is why I strongly recommend close relatives get tested.

If you happen to know your genotype, my sister and I have both an HDL DQ 2 and an HDL DQ1.
Another member here has this geneotype as well, and she too, has the identical same foods to avoid as we. I think the particular genotype determines the foods. This might give you a little short cut to try if additional testing is not an option right now, should you happen to have the same genotype as we do.

If you want to continue with the SCD, and yet are dairy casein intolerant, you could always try a "Milk Free" probiotic from a reputable brand. I found one in the refrigerated section of a Whole Foods. Caution though -- these have to be kept at a certain temperature or they will not be good. You could always just take them while you're at home with the convenience of refrigeration, in place of all that yogurt making. Think one of our longest members did that for the same reason with her SCD diet. Is that right, anyone..Alice, or was it just suggested to someone else in the past??

Since you've read lots of Dr. Fine's articles, etc., I guess you must've tried Culturelle, but did you know that it's not dairy-free? It's just the only one with the published research, is why he used to advocate it a lot, same as other GI's, for same reason.

Are you finished with your Katrina detail? Did you also go into the Rita-damaged areas?

I understand that many people not only had their homes destroyed, but that they also lost their health.
Do you know what the biggest health problems are along the MS coast that seems to exist there, even now? Did you go as far north as Hattiesburg?

I understand the bad damage extended even that far north, but then my geography may be bad as I've not been in that part of that state.

How long do you anticipate it will take to get all those homes repaired that are reparable?

We're here in Houston, holding our collective breath again this year.
Did you happen to visit this city after T.S. Allison's flood? What a mess!

Yours, Luce

[harvest_table]

Hi Bob,

Welcome! Glad you found us!

Your three years of GF & diet trials with little relief would lead me to explore other options also. Our issues with MC are all so similar, yet so varied in how we find relief.

My experience with medications may be typical of multii-intolerant MC. The first meds I tried were Asacol and Colazal, and I had an awful reaction to them. I found relief with a short term round of Pred and then tried Entocort/ along with diet for 6 months. I believe the medication allowed my gut to heal which then in turn allowed my diet to take over. I'm GF and eat close to a Paleo Diet.

Love,
Joanna

[bobh]

Thank you for responding - I am honored to have experienced people share their knowledge with this 50 year old dude from California.

asking your GI to give you a little run on Entocort while you're learning to eliminate a few more things

Great to hear of other people's experiences, narrows down the choices!

I'm a bit surprised that a casein test wasn't included with your gluten test. I had these first two allergens tested in early 2004, and they were lumped together back then in the big panel with the genes, etc., but if my memory serves me correctly, even the individual gluten tests included casein.

One of my talents is "hiding things" that are more than a year or 2 old (under the layers of the thing known as my desk). I searched my files, cannot quickly locate the Entero-Lab results from late 2003. I know I have them, and will keep looking. Maybe they did test for casein and I don't remember because it was OK... I know I got the gene test... I will excavate and locate.

Joanna said: I believe the medication allowed my gut to heal which then in turn allowed my diet to take over. I'm GF and eat close to a Paleo Diet.

Thank you Joanna, that is what I am looking for. I have been in a non-stop "flare" for 6 months, where all food becomes "ammo".

Rather than change 2 things at once (hard to tell what helped) I am going to roll up my sleeves, get the milk-casein issue resolved, depending on the result get a yogurt maker & try to "fully" do the SCD diet (because I had just started to attempt it when I discovered your site). I will post here, if it helps or not. I may get the meds and wait to take them. It may be good to have some pills if I find all the Mc-Bathrooms are wiped off the face of the earth.

[mle_ii]

Hi Bob, you might try emailing Enterolab, perhaps they can email you the results. :)

Mike

[bobh]

Mike, thanks for the idea - I did that and the Lab promptly E-mailed my old test result, which did include a test for milk-casein!

The Gluten was definate, but the milk seems kinda borderline to me, supposed to be less than 10 and it is "at" 10 on the antibodies. Suppose that is one thing I could focus on, by itself, and see if there is an improvement. I never drink milk, but do eat a fair amount of cheese...
----(here were my results, turned out was in early 2004)---
Gluten Sensitivity Stool Test
Fecal Antigliadin IgA 15 Units (Normal Range <10 Units)

Stool Test for Autoimmune Reaction to Tissue Transglutaminase
Fecal Antitissue Transglutaminase IgA 20 Units (Normal Range <10 Units)

Stool Test for Small Intestinal Malabsorption
Microscopic Fecal Fat Score: 86 Units (Normal Range < 300 Units)

Stool Test for Milk Sensitivity
Fecal anti-casein IgA antibody 10 Units (Normal Range<10>

Stool Test for Acute/Chronic Colitis
Fecal lactoferrin Negative (Normal = negative)

Gene Test for Gluten Sensitivity
Molecular analysis: HLA-DQB1*0201, 0201

Serologic equivalent: HLA-DQ 2,2

Interpretation: Analysis of this stool sample indicates you have dietary
gluten sensitivity resulting in an associated autoimmune reaction to the
human enzyme tissue transglutaminase, but no small intestinal
malabsorption/damage. You also have antibodies to the cow’s milk
protein, casein, and hence, you are immunologically sensitive to these
foods.

no neutrophilic inflammation in your stool typical of acute and/or chronic colitis. This essentially rules out active bacterial colitis, ulcerative colitis and Crohn’s colitis, but does not completely rule out microscopic colitis.
---(a biopsy / colonoscopy DID CONFIRM microscopic colitis, and I have had the "classic" symptom of explosive D for many years)---