So glad I found this....

[Jeanemcl]

I am new here. Diagnosed with CC three years ago. Went on Endocort and thought I was cured...silly me. Have struggled off and on since last fall and am getting discouraged. Have eliminated most gluten ....bread, pasta and the like even though the Dr. Tested me for Celiac and it came back negative. I am back on Endocort and trying to figure out what to eat and how to live. Thank you all for encouraging words...I will post a picture as soon as I figure out how to do it!

[tex]

Hi Jeane,

Welcome to our internet family. You have discovered that the GI specialists don't know how to treat MC for the long-term. IOW, as soon as they discontinue their medications prescriptions, the patient suffers a relapse of symptoms.

That's because prescription drugs can temporarily mask the symptoms of MC, but the only way to actually prevent the inflammation that causes MC, is to stop eating the foods (or taking the medications) that are causing the inflammation in the first place. And as strange as it seems, most GI docs still deny that diet has anything to do with MC. Really? That's like insisting that breathing polluted air has nothing to do with asthma, COPD, and/or lung cancer.

And unfortunately, eliminating "most" gluten from our diet is usually not much help, in most cases. Even though the celiac screening blood tests that doctors use virtually always show a negative result for the type of gluten sensitivity that we have, the fact of the matter is that we are at least as sensitive to gluten as the average celiac, and we cannot get our life and our health back until we eliminate not just "most" gluten, but all traces of gluten, from our diet. In addition, most of us also have to avoid all dairy products, and many of us also have to avoid all products that contain soy and/or legumes. Some of us are also sensitive to other foods, such as eggs. But the point is, if we avoid the foods that cause us to produce antibodies, we can get our life and our health back, and we can even do it with the use of any medications, in most cases, if we choose to do so.

Using Entocort can help to make life easier though, while waiting the the diet to stop the inflammation, and promote healing. The healing process can take a while — much longer than most doctors realize. They think that patients' digestive systems should heal in a matter of days or weeks. In fact, it takes many months to years, to heal the damage caused by this disease, because in most cases, the damage has been accumulating for years.

If you can't persuade the system to allow you to upload an avatar image, please feel free to attach an image file to an email and send it to me — I will be happy to convert it to an avatar and upload it for you. You can send me an email by clicking on the "email" button at the bottom of this message.

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

Tex

[Jeanemcl]

Thanks Tex,
It seems a bit overwhelming to find out what the problem is....and you are correct my GI said it doesn't have anything to do with the diet. I guess I am trying to figure out what to eliminate and how do I know if it is the culprit or not. I am miserable in the morning when I wake up. After a few trips to the bathroom things start to settle which I am grateful for. I eat GF cereal dry and then in a couple of hrs have something else to eat...if I eat some amounts every couple of hrs I can manage. I have been really careful, since this recent flare upwhat, I have for dinner and have been trying fish, meat and vegs. I have also had potatoes and rice which seem ok. I just read where sauces and dressings may not been gluten free and I haven't cut out all soups which I just found out are not gluten free also - yikes - that seems like a huge sacrifice as I love soups, sauces and good foods....but if it is a must I will do it. The gift of desperation has entered my life! Thinking about ordering the book...did you write it?? Wondering how to test certain things like soy, dairy, nuts etc. - will I get some guidance about that from the book?Thanks again for your help...I have a lot to learn!

[tex]

Jeane,

Your morning pattern of reaction is typical of most of us — IOW mornings are the worst for most of us. Most of us make our own soups, sauces and dressings, so that we know they're safe, but there are a few commercial products that can be used.

You can find hundreds of tasty recipes that are free of gluten, dairy, and soy in Dee's Kitchen Dee is a professional chef who also has MC.

Thinking about ordering the book...did you write it??

Yes. To me it seemed incredible that for a disease that was described over 35 years ago, not one single book had ever been written about it. And when most of us are diagnosed, our GI specialist doesn't typically offer much information about the disease, either. The problem appears to be that while a lot of research articles have been published about the disease, apparently no one in the medical profession understands the disease well enough to feel comfortable writing a comprehensive book about it. The internet, and many doctors' offices, are loaded with misinformation about the disease, so clearly there existed a need for a book that contains accurate information about understanding the disease, treating it, and living with it.

Since I had been researching the disease for about a decade, I decided to organize all that research, and combine it with what we have learned on this discussion board by sharing personal experiences about what works and what doesn't work, and create a book that hopefully is useful not only to patients who are diagnosed with the disease, but to their doctors as well. It took about 2 and a half years to write, and I published it about 13 months ago.

Wondering how to test certain things like soy, dairy, nuts etc. - will I get some guidance about that from the book?

Yes, the book is designed to cover virtually every aspect of the disease, and to answer most questions that anyone might have about it. Here's a quote from pages 84–85 (from chapter 7, which is titled, "Food Allergies Versus Food Sensitivities").

How can we determine our food sensitivities?
Currently, the most reliable and practical methods for determining food sensitivities include some variation of the following two methods:

1. A strict elimination diet can be used, that includes only a few foods known to be non-reactive for most people with MC, until stable remission is attained. Then, foods can be reintroduced into the diet, one at a time, to test for reactions.2

2. Stool tests offered by EnteroLab, a fully-accredited laboratory located in Dallas, Texas, can be used to reliably detect the most common food sensitivities.3 These tests are based on the detection of IgA antibodies (in stool samples) to specific foods in the diet.

Note that this lab uses a patented process for detecting IgA antibodies in the stool, and no other laboratory, anywhere in the world is licensed to use that technology for stool testing. Consequently, this particular lab appears to offer the only reliable and accurate stool tests for food sensitivities currently available anywhere in the world, to the best of my knowledge. Most blood tests and skin tests have been shown to be of little value for detecting intestinal food sensitivities because the antibodies are generated in the intestines and are not transferred to the blood in sufficient quantities to allow currently-used serum tests or skin tests to accurately and reliably detect those antibodies.

Test kits can be ordered by the patient, direct from the lab (except in a few states in the U.S.). However, the cost of the tests is more likely to be covered by insurance if the test kits are ordered by a physician.

Here are references 2 and 3 from that quote (as you can see, the first one links back to an informational post on this discussion board):

2. Jean, (2005, June 26). Elimination Diet [Online forum comment]. Retrieved from http://www.perskyfarms.com/phpBB2/viewtopic.php?t=732

3. EnteroLab. (2012). Retrieved from http://www.enterolab.com/

..I have a lot to learn!

We are all students of this disease, and while I can't speak for everyone here, I know that I learn something new about the disease virtually every day, by reading posts on this board.

Tex

[Leah]

Welcome Jeane! Read as much as you can from this site and definitely get the book. This is a complicated disease and our food intolerances vary. Gluten and dairy and soy though are the big ones. Unfortunately, some of us have also acquired other sensitivities then the usual. The Enterolab test helps tremendously. However, if you can't afford them, then you can do it the old fashioned way. Eliminate. About 1 1/2 years ago, when I was dx, I decided to take everything out of my diet that I thought could be a problem and pretty much stuck to that for the six months i was on Entocort. Was it difficult? yes! worth it? yes! After I was able to wean slowly off the drug, I started testing foods back in one at a time ( three days each).

There are foods that you should avoid when you are trying to heal ( because they are hard on the gut), but don't actually CAUSE inflammation. Examples of those are: RAW fruits and veggies, fiber, too much sugar, acid ( like tomato and citrus), spicy, caffeine, beans and legumes... Down the road, you can try again with these. I have been able to add things back in since, but not everything.

There are other factors ( like histamines) that can also make symptoms worse. Like I said, it's complicated. The book is a great source of information.

Good luck
leah

[Jeanemcl]

You guys are great....thanks. I am getting the book and looking into the lab.

[carolm]

Hi Jeanne, I have to add that you will get your best advice right here. The information on this site and shared by other members who are now in remission will be exactly what you need to know (and follow) to wrestle your MC into submission. There is no doing it 'half-way' or 'sometimes' if you really want to get rid of the inflammation that is making you sick. You will have to make all the adjustments, like getting rid of gluten 100%, but it's worked for countless others and it will for you too. I've had to get rid of the big 4-- gluten, soy, dairy, and eggs. It's worth it to get well.

Welcome to our internet family,
Carol

[Lesley]

And I had to cut out corn, rice and poultry in addition to a whole lot of stuff. Even bananas are now off my list.
So each of us has to find our own diets, and they do change all the time. You know you can become allergic to something you have used all your life? Well, this is the same thing. Find your foods by elimination or with help from tests, and then, if you have a flare, examine what might be causing it now.
Yes, it is a full time, life long activity, but not having continual D is worth it.

Another welcome.

[mcnomore]

I forgot to add that I went on Asacol in June and that helped evidently.

[Jeanemcl]

Did most of you do the elimination diet or did you get your info on your intolerances from the lab?

[mcnomore]

I tried to do an elimination diet for several years by eating chicken and rice and other things that usually are considered bland, etc. but nothing changed so I finally did the Enterolab Test C and got the results in mid-July of this year and found out that chicken and rice were part of my problem. As others will tell you, it's faster to do the tests.

Also, I found when doing the elimination diet, that I tended to think it wasn't food causing my problems because I was eating so few foods and foods that are recommended by the SCD diet for instance. Rice was actually at the top of the list of things I can't eat.

So, I began Asacol on June 8, stopped eating the things Enterolab indicated that were causing my problems and by Sept. I began to heal and the last couple of weeks I have been normal. I must add though that I really healed when I went low fat two weeks ago.

I still only eat the things I mentioned in an earlier post, but today will try juicing, but only a little at a time and only a couple of vegies at a time.

[tex]

Jeane,

Back when I was recovering (roughly 10 years ago), I wasn't aware of EnteroLab, so I had to do it the hard way, by keeping a food/reaction diary, and following an elimination diet. Unfortunately, back in those days I didn't have any guidelines to follow, so I wasted a year and a half experimenting with avoiding and reintroducing various foods before I adopted a strict elimination diet.

Fortunately though, I had cut gluten out of my diet right off the bat, and always avoided it 100 % of the time, so after testing foods for a year and a half, when I finally saw the light and adopted an elimination diet, it only took about 2 weeks to reach remission.

Tex

[Leah]

Elimination diet ( test didn't work for me because of IgA deficiency)

Leah