Hi All. I am thankful for finding folks who are talking about MC. I was just diagnosed 2 weeks ago with CC and have been on Entocort for those two weeks with no results. My Dr. just added Apriso three days ago and I have finally had my first uninterrupted night's sleep in a very long time. You have been talking about food sensitivity and I was wondering if that shows up in the upper endoscopy. My GI doc said my upper GI was beautiful. If I was having food sensitivity, wouldn't my upper GI be looking somewhat abnormal?
My other question is, how long have most people been on Entocort? At $400.00 for a 10 day supply and no prescription coverage, I'm wondering how I will afford treatment. I thought I would only be on it for a few weeks, but it seems from some of the posts here, people have been on it for much longer. Thanks.
Foxnhound8
Newbie
Moderators: Rosie, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi,
Welcome to our support board. To answer your questions, sometimes food sensitivities associated with MC do cause visible damage to the villi in the small intestine, and sometimes pathologists can detect lymphocytic infiltration between the cells of the epithelia of the small intestine, (if they bother to look for that marker, when examining biopsy sample slides under the microscope), but in many/most cases, damage in the small intestine may not be evident, especially early on. The likelihood increases over time, if the symptoms remain untreated. In many cases, eventually, casein-sensitivity, (sensitivity to the primary protein in all dairy products), and/or soy or corn sensitivity, for example, can cause a level of villus damage similar to the villus atrophy caused by gluten, in celiacs. Be aware that most GI docs are unaware that the symptoms of CC, (or LC, or MC), can be controlled by diet changes alone, and in cases where patients choose to use a drug, (such as Entocort), patients who seem to be refractory to treatment can usually be brought to remission by removing all food sensitivities from the diet.
If you have no insurance, and you want to use budesonide, (the active ingredient in Entocort), the only real option is a bootleg generic from an online pharmacy, such as the one at the following link. I certainly can't speak for other online pharmacies, but this one has proven to be legitimate, providing good service, top quality products, and at a bargain price. A number of members here use this product, and they have found it to be just as effective as the name brand, (vastly-overpriced), product. A 30-day supply of capsules, (90 capsules) is priced at $40.50, plus shipping. Shipping can be significant, of course, since this is an overseas pharmacy, and the shipment must go through customs, so the shipping cost may amount to as much as the product. No prescription is need with this pharmacy, (since prescriptions written by U. S. doctors are invalid outside the country).
http://www.alldaychemist.com/1283_Entocort-EC
Again, welcome aboard, and please feel free to ask anything.
Tex
Welcome to our support board. To answer your questions, sometimes food sensitivities associated with MC do cause visible damage to the villi in the small intestine, and sometimes pathologists can detect lymphocytic infiltration between the cells of the epithelia of the small intestine, (if they bother to look for that marker, when examining biopsy sample slides under the microscope), but in many/most cases, damage in the small intestine may not be evident, especially early on. The likelihood increases over time, if the symptoms remain untreated. In many cases, eventually, casein-sensitivity, (sensitivity to the primary protein in all dairy products), and/or soy or corn sensitivity, for example, can cause a level of villus damage similar to the villus atrophy caused by gluten, in celiacs. Be aware that most GI docs are unaware that the symptoms of CC, (or LC, or MC), can be controlled by diet changes alone, and in cases where patients choose to use a drug, (such as Entocort), patients who seem to be refractory to treatment can usually be brought to remission by removing all food sensitivities from the diet.
If you have no insurance, and you want to use budesonide, (the active ingredient in Entocort), the only real option is a bootleg generic from an online pharmacy, such as the one at the following link. I certainly can't speak for other online pharmacies, but this one has proven to be legitimate, providing good service, top quality products, and at a bargain price. A number of members here use this product, and they have found it to be just as effective as the name brand, (vastly-overpriced), product. A 30-day supply of capsules, (90 capsules) is priced at $40.50, plus shipping. Shipping can be significant, of course, since this is an overseas pharmacy, and the shipment must go through customs, so the shipping cost may amount to as much as the product. No prescription is need with this pharmacy, (since prescriptions written by U. S. doctors are invalid outside the country).
http://www.alldaychemist.com/1283_Entocort-EC
Again, welcome aboard, and please feel free to ask anything.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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MBombardier
- Rockhopper Penguin
- Posts: 1523
- Joined: Thu Oct 14, 2010 10:44 am
- Location: Vancouver, WA
Welcome! I was diagnosed with CC in September. I have not had an endoscopy, and my blood work did not show celiac disease. I was on Apriso for a couple of weeks with no results. After reading about it on this board, I decided to try going gluten-free. Over the course of several weeks my symptoms gradually got better. I don't take any medication, and my symptoms stay well-controlled with diet now, though I am still in the initial stages of doing the plain chicken or hamburger, well-cooked green beans, rice, banana, and jello for the most part because I cannot yet tolerate any fiber or spices. All this is to say... I did not have an endoscopy, and my bloodwork did not show gluten sensitivity, but in my opinion, the fact that I do better totally avoiding gluten is pretty good evidence that I am sensitive to gluten. My understanding is that it can take a very long time for there to be changes in the small intestine indicative of damage from food sensitivities.
Again, welcome!
Marliss Bombardier
Dum spiro, spero -- While I breathe, I hope
Psoriasis - the dark ages
Hashimoto's Thyroiditis - Dec 2001
Collagenous Colitis - Sept 2010
Granuloma Annulare - June 2011
Dum spiro, spero -- While I breathe, I hope
Psoriasis - the dark ages
Hashimoto's Thyroiditis - Dec 2001
Collagenous Colitis - Sept 2010
Granuloma Annulare - June 2011
-
Foxnhound8
- Adélie Penguin
- Posts: 84
- Joined: Thu Dec 30, 2010 7:34 am
Thanks Marliss and Tex. i didn't realize it took so long to get any improvement with dietary changes. I went gluten free for a week and didn't have any changes in symptoms, so I thought that gluten was not a problem. So, how/where do I get the testing I need for food sensitivities? I was not careful at all last night celebrating the New Year and suffered huge last night. I still feel like I was run over by a truck this am.
Foxnhound8
Foxnhound8
I know the feeling - before I recovered, that's the way that I usually felt most mornings, when it was time to drag out of bed. For tests to determine sensitivities to gluten, dairy, soy, yeast, and egg, we've had the best success by far, by sending stool samples to a lab in Dallas Texas, called Enterolab. They sell test kits that will enable you to collect a sample, and ship it to them by overnight service. Those foods are usually the most common risk for us, and those are the only food sensitivities that they test for, (unless they've recently added something), so if you should want to test for additional foods, the best choice for that would be MRT testing. Enterolab also offers a reasonably-priced gene test, that will show whether or not you have any celiac genes, or other non-celiac genes that predispose to gluten-sensitivity.
https://www.enterolab.com/
Tex
https://www.enterolab.com/
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
-
MBombardier
- Rockhopper Penguin
- Posts: 1523
- Joined: Thu Oct 14, 2010 10:44 am
- Location: Vancouver, WA
As you look around the board, you will see that the fact that I have had success with the gluten-free diet already is unique. For most, it seems to take months longer. I attribute that to the fact that I am apparently only sensitive to gluten and lactose. I am not sensitive to casein (I can eat hard cheeses made from cultured milk), nor am I sensitive to corn. Though I react to soy, nightshades, almonds, seemingly all spices 
, and I seem to be starting to react to rice, those are allergy-type reactions that do not exacerbate the D.
I am planning on doing some of the testing at Enterolab at some point, certainly the genetic testing to see what I may be passing down to my kids. In the meantime, I am enjoying bouncing out of bed in the mornings without pain. So many years I struggled with pain even getting up from my chair that going gluten-free feels like it has given me a new lease on life.
, and I seem to be starting to react to rice, those are allergy-type reactions that do not exacerbate the D. I am planning on doing some of the testing at Enterolab at some point, certainly the genetic testing to see what I may be passing down to my kids. In the meantime, I am enjoying bouncing out of bed in the mornings without pain. So many years I struggled with pain even getting up from my chair that going gluten-free feels like it has given me a new lease on life.
Marliss Bombardier
Dum spiro, spero -- While I breathe, I hope
Psoriasis - the dark ages
Hashimoto's Thyroiditis - Dec 2001
Collagenous Colitis - Sept 2010
Granuloma Annulare - June 2011
Dum spiro, spero -- While I breathe, I hope
Psoriasis - the dark ages
Hashimoto's Thyroiditis - Dec 2001
Collagenous Colitis - Sept 2010
Granuloma Annulare - June 2011
-
Foxnhound8
- Adélie Penguin
- Posts: 84
- Joined: Thu Dec 30, 2010 7:34 am
Thanks Tex, I have sent for my test kit. After overindulging New Years eve, I had a terrible rest of my night. Chicken broth (that I see has soy in it) along with a little chicken and rice and some Gatorade for me today! Perhaps I'll get some sleep tonight. Marliss, I am opposite (usually)...I have no pain, just the big D!
Foxnhound8
Foxnhound8