Please....Newbie needs help!

[rich]

Hi...I'm a newbie to all this so any advice I can get would be much appreciated. I'm 47 yo and after 4 months of D, cramps, weight loss, etc. and many doctor visits I had a colonoscopy. The lab results indicated MC, the more serious of the two types (CC?). Initially my GI doc prescribed Asacol which I took for about a week with no improvement and then had a 3 day case of non stop D, cramps, fever, etc. I spoke with he doc he suggested to stop taking the asacol and see if I felt better. I stopped for 2 days, began to feel better and then resumed the asacol at which time I felt worse again. So the doc prescribed Entocort(3 capsules/day) which I have been taking for about a week and a half. At the same time I began the Entocort a friend of mine who has Crohn's gave me Elaine Gottschall's book and I went on the SC diet. I'm not sure if it is the diet, the Entocort, or both but the past 6 days I have had no D (2-3 BM's a day, firm, but greenish color..not sure what's up with color??) but still have periodic episodes with a low grade fever, slight chills, some body aches, gas, bloating, etc.

My questions are...I see many posts referring to diet..the SCD allows cheese, homemade yogurt, eggs, etc. Eggs have been a problem for me for a couple years so I don't eat eggs by themselves but yogurt and cheese don't seem to cause any problems. If these foods are a problem wouldn't I know it now within several hours after eating them?

Also, is there a place to get Entocort that isn't so expensive? It cost $ 1,000.00 to fill a one month's supply!!

Does the stool sample testing with the lab I see mentioned significantly shortcut the "trial and error" method to determine offending foods?

Lastly, even though my D ended a week ago I continue to lose weight. I'm eating a normal amount of food and a good mix of protein, carbs (per SCD diet, fats, etc); my energy level is pretty good and interestingly enough I went to the gym yesterday for the first time in months and found my muscle strength levels are no different than before I got sick. So, it appears I've lost fat but no real muscle. (FYI, I weighed 181 before all this started, I'm currently at 162) When can I expect the weight to come back?

Thanks for this resource...may God bless all of you with improved health!!

[Zizzle]

You have come to the right place. You are very lucky to be seeing such quick results on the SC diet and Entocort. Does that mean you are eating 100% gluten free? Most people here have to avoid gluten, casein (dairy), and soy, but if you don't notice bloating and other symptoms after eating dairy, perhaps you're OK? I had Enterolab testing - it was indeed a significant shortcut to discover my food intolerances. Without it, I probably would have resisted the need to cut things out cold-turkey. But if you pursue testing, you need to be eating the offending foods, including gluten, to get the most accurate results. I'm not sure whether Entocort could alter your results as well - I'll let others weigh in. Did your GI test you for celiac disease with bloodwork and/or biopsies?

I haven't taken Rx medications, only Pepto Bismol, but I believe the goal is to taper down your Entocort dose until you are able to control your symptoms with diet alone.

[rich]

Well...I think I am 100% GF. Isn't everything in the SCD gluten free? Please correct me if I'm wrong. I am eating some dairy, specifically butter, some cheese, and the homemade yogurt (per her book). I did get tested for celiac disease with bloodwork and it came back as negative however, I've heard that the blood test is not always accurate..is that true?


Thanks for your response!!

[Bifcus16]

Hi Rich,

Welcome and glad you found us.

MC isn't quite the same as Crohn's (thank goodness). Whilst I recall some folk have had luck with the SCD diet, most of us find better results by removing all gluten and dairy from our diets and cutting right down on fibre - so well cooked vegies only. If that doesn't help, then soy is next to add to the exclusions. Even if you are one of the lucky ones who isn't intolerant to casein (dairy protein), while you have active D you are likely to have problems with lactose (dairy sugar) so eating dairy usually doesn't help.

The Enterolab labs tests can be a useful way to shortcut finding out your key intolerances. It removes the doubt about whether you are reacting to small amounts of gluten (or other foods) you have missed (for example in medications, or cross contamination of foods that should be safe). Some people can take a long while to get a result from elimination testing - and without the test results it is tempting to give up hope.

The gluten blood tests are very specific and most of us here do not show up as celiac on those tests - although we do on the more sensitive Enterolab tests, or can clearly see the reactions when we eat gluten.

Your reactions to food can be immediate or delayed. You may not react until the food reaches the appropriate part of your digestive system -and that can take a while. For me it is about a day and a half - 30+ hours - before I react. Some other people are immediate. A food diary is a good tool to help sort this out.

A fever is not a typical part of MC. The gas and bloating and pain is typical of MC. It is possible you have an infection of some kind as well, so if the fever doesn't go you might be best to go back to the doc.

Congrats on getting onto the Entocort so fast - that is the most likely contributor to your normal stool.

Lyn

[rich]

Lyn-

Thanks for your reply, I appreciate it very much. Not sure if fever is the right term..."hot flashes" might be more appropriate. Possible side effect of the entocort?

[tex]

Rich,

Welcome to the board.

If these foods are a problem wouldn't I know it now within several hours after eating them?

Not necessarily. Usually, the antigliadin antibody production by your immune system will have to diminish before your immune system will begin to react to other food sensitivities. Gluten dominates reactions, and the antibodies have a very long half life. You may not notice the other food sensitivities until after a month or two passes, (or longer, depending on how sensitive you are).

Also, is there a place to get Entocort that isn't so expensive? It cost $ 1,000.00 to fill a one month's supply!!

See this thread:

http://www.perskyfarms.com/phpBB2/viewtopic.php?t=10825

Those sources are legitimate, as long as the FDA and customs continue honoring their current policy.

When can I expect the weight to come back?

When your gut begins to make some progress healing, (which will resolve the malabsorption problem that you are now experiencing). It may take a few weeks, or a few months. We are all different in our responses.

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

Tex (Wayne)

[Joefnh]

Hi Rich welcome to the group. You certainly have found the right group of people for CC and it sounds like you are on the right path for the diet and Entocort.

I am 45 and was diagnosed last April with both CC and Crohns. Like you, I was put on Entocort 3 capsules a day and did see improvement after a couple of weeks. Along with the Entocort I did start a GF/DF/SF diet that I found is just as important as the Entocort.

As far as the cost of the Entocort several members here have found that by ordering it through a Canadian pharmacy that the cost is about 80% less

As far as weight loss, since April I have lost 37 pounds and am not sure if that is due to the Entocort or the CC / Crohns


Again Welcome to the group Rich

--Joe

[natythingycolbery]

the more serious of the two types (CC?).

Sorry to jump in with an odd question and not offer any advice, but this has been bugging me a while, is one type of MC worse than the other?

[tex]

Sorry to jump in with an odd question and not offer any advice, but this has been bugging me a while, is one type of MC worse than the other?

Good question. Apparently some GI specialists consider CC to be an advanced stage of MC, (relative to LC), simply because both types show some degree of lymphocytic infiltration, but only CC involves thickening of the collagen bands in the subepithelia. I believe this is a false assumption. Actually the two types are pretty much interchangeable, and the disease for some patients has been known to shift back and forth between the two types, as time passes. The fact is, some patients develop collagen band thickening, and some do not, but despite the difference in laboratory symptoms, there is no way to predict the severity of the clinical symptoms - except maybe by considering genetics. People with double DQ genes virtually always have more food sensitivities, and more severe symptoms, (but genes have nothing to do with lymphocyte counts, or collagen band measurements).

Some GI docs also believe that a relatively low lymphocyte count, (and/or minor collagen band thickening), indicates a "mild" form of the disease. That is absolutely incorrect. There is no correlation between the lymphocyte count and/or collagen band thickening, and the severity of the disease. Some of our members who have been noted as having "mild" cases, have had the most severe symptoms, and conversely, some members with "severe" marker levels, have had the lightest symptoms.

At least that has been our cumulative experience here on this board.


Polly, do you have any thoughts on this? Maybe I'm all wet.

Tex

[Linda in BC]

Hello Rich, and welcome!!


I just started Entocort about 6 days ago ( tho have had this disease for 13 years and been on this board for about six months.) I continued to lose weight when I went gluten -free four months ago and lost another 10 lbs. Then I started taking a rice protein drink once or twice a day, and that stopped the weight drop. From what I have read, Entocort may increase your appetite and thus cause you to gain the weight back, although it doesn't affect all people that way.

Glad you found us. Some of the most knowledgeable people about MC , I would hazard to say, in the world, hang out here, so you have come to the right place.
Linda

[ant]

Dear Rich

Welcome from Hong Kong. I cannot add much more. There is a wealth of information and compassion on this board. I am sure you are reading lots here. Take you time and ask any questions you want. Nothing embarrasses us.

All the best, Ant

[rich]

Thanks Tex, Linda, Ant, etc. for your hospitality. So, am I to assume the consensus is that MC is a food allergy and sensitivity issue more so than Elaine Gottschall's theory of "the vicious cycle" of bad carbs?
I see foods that most in the group are eating (i.e. corn tortillas, potatoes, items with sugar, etc) that are forbidden in the SCD diet. A GF and DF diet (and soy) diet is easier for me than the SCD diet. Am I on the right track here?

[Linda in BC]

People more knowledgable than I may be able to answer this better but my take on your question is that yes, with MC it is really about individual food sensitivities to proteins (pretty much everyone is sensitive to gluten, about half to casein (the protein in milk), many to soy, some to corn or eggs) and avoiding high fibre foods that seem to be an irritant to the bowel before it is healed. Those would include fresh vegetables, especially lettuce, most nuts, most fruit (especially the peel.) As healing takes place, many can slowly reintroduce these kinds of foods back into their diet after an initial abstinence of anywhere from a few months to a year or more. For example I cannot eat corn, casein, wheat, eggs, a lot of other grains, , peanuts or peas. They all make me quite sick. But I am also avoiding potatoes, veggies (unless well cooked), soy, fruit (except bananas.. we seem to tolerate them well) and most nuts (nut butters are ok for me though except peanut butter) until my gut heals.

Regarding sugar , again it is an individual thing. Some people tolerate sugar better than others, and sometimes people avoid it because they are concerned that they have a high candida yeast count. Personally, sugar does not bother me ( thank goodness!!)
Hope this helps.

Linda

[tex]

Rich,

I agree with what Linda said, and I might add that the SCD is not really very far off base, in that it works for us, if we leave out the dairy products. Elaine basically had the right idea, because by eliminating most carbs, we minimize fiber intake, and eliminate grains, which covers the lion's share of our sensitivity issues. And, it's true that sugar, in significant amounts, is contraindicated for many/most of us, primarily because, (again, as Linda pointed out), problems related to candida and/or the leaky gut syndrome.

For someone with MC, as far as traditionally-defined diets are concerned, the paleo diet is a much closer fit with our needs, than the SCD, primarily because of the dairy issue.

Tex