Ok, no luck with the elimination diet.

[JMulkey]

Ok, started out as suggested. Lean meat, only had chicken breast, made sure it was organic, nothing shot into it or rinsed onto it, and ground beef made into plain hamburger patties. Started out with potatoes (our own, raised organically) also and applesauce (non sweetened, nothing but apples). D never went away. So, changed from potatoes to rice, as I have had problems with potatoes causing bad gas pains in the past. Still D. So dropped the applesauce, went to bananas. Still D. Have tried, carrots = D. pears = D. Bacon = D. Pork chops = D. Hard boiled egg = D. Almonds = D.

Did not take any vitamins or minerals while trying to eliminate. Waited three weeks before trying to add back, although I never achieved normans at all. It's been five weeks now and I have GOT to eat. I'm getting sick and more and more tired.

So, I'm thinking this elimination diet is not going to work for me at all, because I just cannot get rid of the D. Taking one entecort a day, all I can afford.

Any suggestions?

[JLH]

Nevermind. I saw your other post.

[tex]

I realize this isn't what you wanted to hear, but the truth is that at five weeks, your intestines have probably barely begun to heal. Without a therapeutic dose of Entocort, (typically 9 mg per day), it generally takes 6 months to a year to achieve remission by diet alone. It's certainly possible that 3 mg of Entocort per day may shorten that time somewhat, but many members have found that it can take 6 to 8 weeks to achieve remission while following the diet, and taking a full dose of Entocort, and some members have taken years to get to the point where they were able to reduce their dosage to only 3 mg of Entocort per day, without suffering a relapse of D.

You are probably on the right track, and your intestines are healing, but if they have accumulated a lot of damage, before you began the treatment, then it's going to take a while for them to heal, and the amount of Entocort that you're taking is probably not enough to mask the symptoms, until more healing takes place. I realize that it's not easy to be patient when we're sick, but we have no choice, really - this is a tough disease. It took me a year and a half, to achieve remission, but I wasn't taking any meds at all.

Tex

[Gloria]

You sound like you are at the same point I was after I went on the elimination diet. My heart goes out to you and I empathize with you completely.

When I realized that I was not getting any better on the minimal elimination diet, I ordered the MRT testing. It helped me determine other problematic foods, and I was able to see Normans after being on 9 mg. Entocort for 6 months.

If you can afford the MRT testing, it might help you. I don't remember if you've had the Enterolab testing, but that would certainly help, too.

Gloria

[JMulkey]

Thank you all for your replies. Tex, unfortunately, my problems have been ongoing now since the early 90's. It took until about two and a half years ago for them to finally figure out it was LC. However, my gastro says that all of my tests didn't say it 'could' be, or 'looks like', or developing, but they were absolutely definitive that I had LC, so I know there was probably a whole lot of damage.

Unfortunately, we are on a very limited fixed income, and do not have money for more than 3 mg. of Entecort a day and that's not coming from here. I can't afford to buy it at my pharmacy. And can't afford the testing that everyone talks about, so I'm kind of out of luck, I guess. I'm so danged depressed about this I just don't know what I'm going to do. I certainly can't eat just hamburger patties the rest of my life.

I really don't know what else to do at this point. Am at a complete loss.

[tex]

I realize that you're in a tight situation. I'm not saying that you have to have testing or Entocort to reach remission - I'm just saying that it takes time to heal the damage. You're been accumulating damage for over 20 years, so it will take a while to heal all that damage. Read Kari's post - it verifies what I'm saying about the time required to reach remission:

http://www.perskyfarms.com/phpBB2/viewtopic.php?t=14359

I don't know what you're paying for Entocort, but it's probably somewhere around 15 bucks per capsule. If you want to take that drug, for $13.50 you can order 30 capsules from

https://www.alldaychemist.com/1283_Entocort-EC .

That's a generic, but it works just as well as the name brand stuff. Several members here are using it. Shipping will probably cost more than that, so you'll be ahead to order more at a time, because the shipping cost will probably be the same, for any size order.

Tex

[MBombardier]

Hi J~

I am totally with you on the limited income thing. My husband was making good money, and got laid off about six weeks ago. The money I had for testing just flew out the window. However, even when we had the money, I was quite reluctant to spend it on Entocort, so I am one who is attempting to achieve remission through diet alone.

My reading on the forum has been spotty at best recently due to schedule issues, so forgive me if this is old ground that you've already covered. I wonder about cross-contamination. Cast iron and wood (among other things) can be impregnated with gluten. I just got home from a three-week trip and walked straight into a bad flare. Come to find out that my husband, who stayed home, cooked Ramen noodles in my stainless steel pots and then washed them thoroughly... with the same sponge he washed the rest of the dishes with.

In addition--pardon me if this sounds radical--if you are "just" having D but you are improving in other areas like fatigue, brain fog, joint pain, etc., is having D really that bad? I know it can be, believe me, but if you are just visiting the bathroom a few times a day?

It took some time for me to know that the GF diet was working, and that included being exposed to gluten about three weeks in and reacting to gluten in my diet for the first time (other than D, that is). By the four-month mark, I was doing fine, but then the soy intolerance reared its ugly head. Now I have discovered through food elimination that I am intolerant of gluten, soy, corn, rice, and now apparently eggs. And too much fiber throws everything off, not to mention stress.

I am about 10-1/2 months into a GF+ lifestyle, and I deal with some form of D, and more or less of it, pretty much every day still. But other things are much better, like energy, brain wattage, and aches and pain. I know I've gotten into something I shouldn't if something else besides D happens and/or the D gets worse. I believe that gradually the D will go away as I heal, and as old as I am I know that will take possibly two or more years. So it doesn't really bother me that much except on a nuisance level unless, of course, I am having a flare.

I would like to suggest that you check out cross-contamination, and the fiber issue. If you have a juicer, you can make vegetable and fruit juices that are low in fiber. Oh, and start your own "Winning the Poo" diary. No one can live on hamburger patties for the rest of his life, and I can totally understand your feeling at a complete loss.

Again, I don't know how serious things are for you because I haven't been on the board much and haven't time to look. My heart goes out to you, so I wanted to respond to your post and make sure you know that even people who don't respond are reading and pulling for you in empathy and sympathy.

[JMulkey]

Hi again. You all are such great people! I really, really appreciate all the encouragement and help you give those of us who are trying to figure all of this out!

Tex, I'm already getting my entecort from Canada, so I don't pay that much, and although I'm doing that, it's taking every extra cent we have to buy 100 at a time, so those just have to stretch as far as I can make them, but thanks so much for thinking about that for me. I do appreciate that you are helping.

Marliss, we finally got two new frying pans, and don't use the old ones for anything I eat now. I don't eat toast at all, no bread, so no toaster.

I only wish I were visiting the bathroom a few times a day! I've lost 30 pounds in a year, not trying either. Sometimes upward of 10 bouts a day of WD. Pain in upper left quadrant is almost always there now. Pain in lower left quadrant is becoming worse. Fatigue is overwhelming. I've been diagnosed also with Lupus and Fibro, so the joint and muscle pain is always there. So, if it were only the D I might be able to handle it better. But it's just the whole thing! Ugh!

Thanks so much, Marliss, for your encouragement. And I really never thought about it taking a few years to heal, but I guess when I've had this ongoing for so many years, it does make sense. I went back and read some of Kari's posts since Tex mentioned it and can relate to what she went through. Maybe some day I'll have the money to do the testing. But until then, I really don't know what I'm going to do, just keep on doing what I'm doing I guess and hope that 3 mg of the entecort will eventually help a little. I'm pretty much GF, DF, SF, YF, CF right now so I'll just stay with that.

You know it's really frustrating, though, because for years now I've gone to the doc and complained about this constant D I had, every single time I went in. They continually passed it off, and really didn't do anything at all about it. I changed doc's a few years back and he finally sent me to a Gastro, after I went in and graphically told him that I had WD every single day, 10 to 15 times a day, and everything that entails. So, I got to finally go to a gastro, and found out I had this. Imagine my horror when my gastro told me there was a med I could take, but it costs $1200 a month? I was like, well, that leaves me completely in the dust then. Wowza!!!

Thanks to everybody again for all of your compassion and understanding, I really appreciate it!

[Gabes-Apg]

Elmination Diet and MC is like training for a climb of mt everest, it will test every ounce of your patience and tenancity.

as tex mentioned it takes a while for inflammation to reduce especially if you have had bad symptoms for many months. my advice about ingredients is to approach it like you do with toddlers when you take them from milk to solids.

and inflammed digestion system due to MC will be like babies, any new ingredient will cause a change in BM's (in our case it will cause D). like babies try a small amount (less than 50mls) of the ingredient in a really easy to digest consistency ie 'goop' either mashed or pureed. wait 24 hours and then try a bit more. Dont make too many drastic changes to your ingredients at the same time.
for me if an ingredient causes no issues by the 4th try then it is ok.

Ideally to figure out if a food is on your ok list or your not ok list you would do elmination type activities when you have a reasonable amount of 'normality' this may not be norman per say, but when you are not having chronic D. that way you can assess if the ingredient is causing you issues or not.

I figured out my intolerances via the elmination diet. it took me about 6-9 months and it was like a roller coaster ride of highs and lows.
I am 19 months post diagnosis and i manage the symptoms with diet only, even now for me when symptoms are there, i revert back to mushy easy to digest meals (mashed veges with well cooked salmon) and i have lots of ingredients/supplements that assist inflammation

I wish i could give you the fast track secret to a life with MC with no symptoms, unfortunately there isnt one, everyone here in this family has had some crappy times (pun intended)
the best advice i can offer is be patient, try not to stress, nuture your body and take it a meal at a time

[Polly]

Hi J,

I can hear how frustrated and discouraged you are. I don't have much to add to the above advice except to echo the fact that it takes the gut a long time to heal. It took me almost 9 mos. with diet alone to see a formed BM. That said, I did notice gradual improvement over those 9 mo. in aches/pains, frequency, bloating, and urgency.

Also, have you tried Imodium? I have found that one per day is helpful when in a flare. I think it helps to "retrain" the gut into a more normal working pattern. How is your vitamin D level? I read recently that lupus has been associated with low vitamin D levels. I take 3000 IUs/day in summer and 5000 IUs in winter. Have you double-checked your vitamins/minerals for hidden no-nos?

The cross contamination issue is a biggie, I agree. Over the past mo. I have been flaring a little, which I have come to believe is due to sharing my kitchen with my brother, who has been living with us. For the first time in years we have had gluten/dairy/soy products around.

Hang in there. And feel free to rant and rave all you want.

Hugs,

Polly

[mbeezie]

J,

Not much to add to what others have said except to consider all foods suspicious, even meats. Sometimes we forget that we can be intolerant to meat, so maybe do a trial witht he meats you are eating. Also be sure to check all products that you use, like lipstick, toothpaste, vitamins, medications etc. Since you have been dealing with this for 20+ years it could take some time to get better. My only other suggestion would be to get some regular exercise. I know that seems like an odd suggestion when you feel sick but I think exercise/physical activity really helps to regulate things and helps with depression, especially if you are outside soaking up some of that vitamin D.

Mary Beth

[Sharaine]

Hi J ~

I hear your frustration loud and clear. I'm so sorry you're having to go through this. I was only diagnosed two months ago and went onto Entocort immediately, 9 mg/day. In the time I've been on Entocort, my diarrhea is less, but any thing I pass is still D in one form or another. Maybe I need to be more strict about the mush diet. I had 13 bean soup last night, for example.

I do empathize with you about finances. We're on a very restricted income right now too since my husband was laid off. I would encourage you to take an hour a day if you can carve it out, even at 6am or 9pm, to read the Treatment column here. It might give you more information, and information is power.

Sending you hugs and positive thoughts.

Sharaine

[sarkin]

J,

All my sympathy and empathy as well. I hope you're staying hydrated... I am a big fan of homemade turkey or chicken broth. (It breaks up the monotony of the burgers, anyway.)

I hesitate to recommend this, because nothing works for everyone. Something that helped me can be very poorly tolerated by some people, which is the last thing you need at the moment. SO - I would recommend giving the Imodium a try, as Polly recommended, and if that is not helpful, you might consider Pepto Bismol. The dose for extreme action is 8/day - which I think is too much. But if you decide to try it, consider 5 or 6, for a few days, and see how you feel. If you have side effects, stop... otherwise, you can continue it for longer, but no more than 2 months.

I hated it, so I only did it for a couple of weeks. But it helped. I cut down to 3 a day, and dropped it altogether within a couple of weeks (probably too soon).

I recommend the capsules, rather than the liquid or chewables. It seemed to have fewer 'extra' ingredients (and you don't have to taste it).

I truly hope you get some relief from the relentless watery D. I know what that's like, as so many of us do.

All my best for some encouraging diminishment of your symptoms asap,

Sara

[patc73]

J,
I also empathize completely with you...I'm having some good days and some bad, but things are improving. I did eight weeks of 9/day Pepto Bismol, on my GI's recommendation, and I can't say they helped. First, I had problems swallowing the tablets, so I went to chewables. Then, the D, which had improved, came back after the fifth week. The final straw was that there was blood in my stool during the eighth week (hemorrhoids), so I just gave the Pepto up cold turkey. I went to CVS and found GF/DF Culturelle probiotic capsules, which I've been taking once a day, and those have finally improved things a bit, along with my Questran (cholesteramine resin). The weakness and bone/muscle aches, almost like chronic fatigue syndrome, come and go. I hate to become a shut-in, but some days I'm just not up to going anywhere. I'd been considering going back to work (I retired three years ago, but the economy...) , but I think staying home is best for now, at least until I'm really in remission. This disease is harder to combat than the doctors give us credit for!

[tex]

Sara,

I have a hunch that most people would need to use the Pepto-Bismol treatment as prescribed by Dr. Fine, (8 or 9 capsules per day), to be reliably effective against watery D. But as Pat pointed out, it certainly doesn't work for everyone. Back when I was reacting, I tried a lower dose, such as you mentioned, for about a week or so, but all it did was to change brown watery D into black watery D.

This disease is harder to combat than the doctors give us credit for!

That's for sure!

Tex