After repeated bouts of D, I got a colonoscopy 19 months ago. Never heard from the Gastro Dr, so I assumed all was normal. Bouts of D continued. Had my GP test me for celiac disease. Negative.
And the D went on. Finally went back to the Gastro Dr. She pulls up my records, and says "Oh You have Lymphocystic Colitis." Needless to say, my jaw dropped, and I asked why I was never informed. No answer of course.
So she has me run to the lab, and give a stool sample. Writes me a Rx for Entocort, but I'm not to start it till the stool sample results come back.
2 days later the D was up to 23 episodes a day, and incontinence at night had me wearing a diaper to bed. I was devastated. And on the verge of dehydration. So I started the Entocort. And within 90 minuted my stomach quieted, and the onslaught on my body was over.
In the meantime I made an appointment with a different Gastro Dr. I gathered all my records for the new guy. Including the lab results from first Dr. (They has been emailed to her office 3 day prior.)
Two WEEKS later #1 Gastro Dr. office calls me and tells me to start the Entocort. The stool samples were negative. I was once again so shocked by their slow response that I just said OK and hung up.
And I went off to the new Dr. He tells me that Entocort is the last line of defense for Mcolitis. Puts me on Lialda- 2 tablets twice daily. Puts me on a diet :
1. All meats should be baked, broiled or grilled.
2. No fried, greasy, spicy or fatty foods.
3. Drink 8-10 (8 ounce) glasses of water a day.
4. Eat cereals, hot or cold every morning.
5. Eat fruits and vegetables daily.
6. Eat 4 to 6 small meals daily.
7. No carbonated beverages.
8. No alcoholic beverages.
9. Danactive 1 to 2 servings daily.
10. Dannon Activia Yogurt 1 to 2 servings daily.
11. Citrucel or benefiber 1 tablespoon in 8 oz glass of juice or water every morning and evening
2 days later I'm right back where I was. D every time I eat. Call his office, but he is closed for 2 weeks for the holidays. I went back on the Entocort.
So here I am today. Searching the web for an answer. And I found this site. Guess I need to continue my search for a Dr, huh? Thanks for listening!
Wow! The ignorance and carelessness of your doctors is astounding! In fact, if my view it is criminal. Anyway you are here now, with friends who collectively have much knowledge and direct experience of MC. Read all you can on the site and you will find the information and support you need to get better.
Since you are dx LC it is highly likely that you should avoid all gluten and diary (so IMO the cereal your doctor suggested is not the right advice). I am sure others will be along soon. Meanwhile, again welcome and all the best in your journey to remission, Ant
Welcome to our internet family. I'm sorry to hear that you've received such shoddy treatment from your GI docs. Not all of them are that inconsiderate, and unknowledgeable, but sad to say, our collective experience shows that many of them are. Apparently the job requirements, (peering up people's behinds, with a scope, to see what's going on in there), attracts many doctors who just don't give a "you-know-what". There are a handful of GI docs in this country who are very knowledgeable about treating MC, and truly care for their patients, but locating one, and obtaining an appointment, usually requires either a lot of work, or a lot of luck.
Yes, you do need to try to locate a GI doc who actually cares for his or her patients, and knows a little about treating LC effectively. Entocort EC is most definitely not the last line of defense against MC. That honor goes to the powerful immune system suppressants, such as methotrexate, and the anti-TNF drugs, (such as Remicade, Humira, Embrel, etc.). Entocort EC is probably the safest, truly effective treatment for this disease, and if you don't want to control your symptoms by diet, it can safely be used indefinitely, at lower doses, as a maintenance treatment, to prevent further reactions.
Your response to Entocort is the fastest that I have ever heard of, by the way. Most of us begin to see benefits from it after a week or so, though a few see results within a few days, and some require a month of so of treatment, before seeing significant improvement.
The first three diet recommendations that your doctor made are on target, and helpful. As Ant mentioned, though, the cereals are not a good idea, especially if they contain any traces of wheat, rye, barley, or oats, because the vast majority of us are gluten-sensitive, something that most GI docs do not understand, (since most of us test negative to the classic celiac blood tests). The casein, (the primary protein in milk), is also a problem for most of us. If you want to eat cereal, there are a few gluten free, (GF), options available, (for example, Corn Chex, Rice Chex, and a couple other of the "Chex" cereals made by General Mills. Plus there are some brands that you can find in health food stores. There are some milk substitutes available, but be aware that about half of us are also sensitive to soy, and soy is in most milk substitutes. We have to learn to read labels very carefully, if we need to control the ingredients in food that we eat/drink.
Most raw fruits and vegetables cause many of us to react. The safest way to eat them is to peel them, (since the peel contains most of the fiber, and fiber is a no-no with this disease), and thoroughly cook them. Many fruits contain significant amounts of sorbitol, and sorbitol causes many of us to have D. Veggies should also be peeled, and overcooked, but even then, some of them cause problems for many of us.
More, smaller meals, are probably a good idea, for most of us. There is nothing wrong with drinking carbonated beverages, provided they do not contain any ingredients to which you are intolerant. For example, many of us react adversely to virtually all artificial sweeteners, and especially aspertame.
There is nothing wrong with drinking alcoholic beverages, (in moderation, of course), so long as they do not contain gluten. Beer, for example, contains gluten, but virtually all of the distilled liquors and wines are safe to drink, so long as they have not been blended back with undistilled ingredients.
A good probiotic, (including some of the probiotic drinks, such as danactive), helps some of us, but unfortunately, most of us either derive no benefit, or react adversely to many of them.
Suggestion number 11 really sucks. Fiber is definitely contraindicated for this disease, (MC is not IBS). Many GI docs are confused, and don't realize that MC is an inflammatory bowel disease, (in the same class as Crohn's and ulcerative colitis), and they mistakenly try to treat it as IBS, and don't consider it to be the debilitating disease that it can often be, for many of us. A limited amount of soluble fiber will not hurt most of us, but in general, non-soluble fiber is a no-no, and even soluble fiber should definitely be minimized, until we are in remission. Once we are in remission for a year or so, we can generally begin to reintroduce many of the foods that we had to eliminate while we were healing. We are all different, and our symptoms and responses to treatment vary, of course. You, for example, seem to be extremely responsive to budesonide, (the active ingredient in Entocort EC), whereas many of us find it very, very difficult to achieve remission, and have to be extremely meticulous with our diet, and/or medications, in order to achieve remission.
Now, be aware that Entocort is effective enough that for many of us, if we take Entocort, we can eat pretty much what we want. Our guts will continue to be inflamed, (to a lesser degree, because Entocort does indeed suppress much of the inflammation), but the Entocort will suppress most of the clinical symptoms, for most of us, (especially the D), so that we will feel OK. On the other hand, some of us still have to limit our diets, while taking Entocort, because of our elevated sensitivities to certain foods.
The diet is the only way to actually control 100% of the inflammation in our intestines, and it has to be followed very strictly, in order to do that. Each of us has to decide what our priorities are, and we make our decisions for our treatment plan, based on those priorities. Regardless of how you choose to treat your LC, we will support you in any way we can.
Please feel free to ask any questions, and again, welcome aboard.
Tex (Wayne)
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.
Wow, we've heard stories about incompetent, insensitive GIs over the years. I have to say that yours ranks right up there. I'm so sorry that you had to endure D for 19 months after your colonoscopy. Yes, you do need to find another GI who is more current and willing to treat you.
As Tex said, Entocort is really the most effective treatment for MC, providing you can tolerate it and have no side effects. I have been taking it for 2 1/2 years and haven't had any problems whatsoever. It has been my lifesaver. I'm presently taking 3 mg per day, but have to increase it occasionally to 9 mg per day when I have a bad flare.
I also follow a strict diet to control my symptoms. I have found it helpful to maintain a daily food/elimination diary to see the relationship between what I eat and how it affects my BMs.
Untreated, this disease can be extremely debilitating, as you know. But it can be managed successfully using diet, medication, or a combination of both. You will get your life back and feel like a human being again. Read all that you can on this site, and don't be afraid to ask us questions. We are here to help you because we know how important it is to support each other.
Gloria
You never know what you can do until you have to do it.
Thanks for the support and words of wisdom. I just ordered the test for gluten intolerance. Unfortunately it is the only one I can afford now. Cannot imagine a diet without it, but I'll do it if I have to. Again, Thanks.
Good for you. I believe that will prove to be a very good investment in your future health.
Good luck with this.
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.
At least the first doc knew to put you on Entocort, and didn't prescribe cereal.
Perhaps you should give her another try if you need the Entocort to get rid of your symptoms.
For sure, do the gluten free diet faithfully without cheating, and if you can, do Enterolab's tests, especially to see if you are sensitive to gluten if that's all your budget allows right now.
Just think, if removing gluten does alot for you, you might be able to pay yourself back with all you'd save by not having to buy the medication or return to the doc's frequently to get the medication.
It seems that many of us have more than just gluten to remove before we get better, but you can fine tune that later, after you are effectively and thoroughly removing all traces of gluten.
Two stops today. First was at Enterol Lab to deliver my sample & pay for an upgrade to the gluten sensitivity and gene panel screening. I actually live about 30 miles from them. Then I went back to the first Dr to get a 90 day script for Entocort. Pharmacy charged me $179 for a 30 day supply last week. Thats after[/u] Insurance. The 90 day supply should be just $65.00, through the mail order option. I asked the Doctor why I was never informed of L colitis after colonostopy. And why it took them 10 days after they recieved the results of the stool sample test to call me. Got no good answer. I then asked her if she knew anything about Enterol Lab or Dr. Fine. She said "No". I told her I was getting tested for gluten intelorance. Her response-"We already know what is wrong with you. Why are you looking for something else?"
Oh well... in my heart & brain I know I am doing what is right for me. If she is willing to write the script for my medicine, I can handle the diet part myself. By the way- I did ask at Enterol Lab if they could recommend a good gastro Dr. They said there aren't any!!!!They work with some kind of environmental Dr- and he has a waiting list of several months.
Will let you know results of testing in 3 weeks. And how the diet is going.
Colleen
Colleen wrote:Her response-"We already know what is wrong with you. Why are you looking for something else?"
I couldn't help but chuckle at that remark, but really, it's not funny - it's kind of sad, isn't it, when you consider all the patients whose treatment is adversely affected by all the doctors who have that attitude, (lack of knowledge).
You definitely are doing what is right for you - please don't let anyone convince you otherwise.
Colleen wrote:By the way- I did ask at Enterol Lab if they could recommend a good gastro Dr. They said there aren't any!!!!
Wow! That's pretty strong language, isn't it. Actually, there are a few, who do a pretty good job of treating MC, but to the best of my knowledge, they are all a long way from where you live. I believe the closest is Colorado, and he only accepts residents of that state, (Dr. Scot Lewey, known on the internet as the Food Doc). We have one member who is fortunate enough to have him as her GI doctor. As noted, the good ones are not easy to get to see.
I hope the diet goes well. Thanks for the update, and please don't hesitate to ask, anytime any questions come to mind. Also, please keep us informed on how things are going with your treatment.
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.
-"We already know what is wrong with you. Why are you looking for something else?"
Gee, maybe because the only thing you know to tell me is to stay on 9 mg./day of Entocort the rest of my life.
How pathetic. Do they really believe that they have the solution for this disease?
It's also sad that Enterolab recognizes that there aren't any (or at least almost none) doctors who know how to treat us. Maybe it's time for a revolution!
Gloria
You never know what you can do until you have to do it.
Colleen hope things have improved for you over the past week or so.
the week before xmas when i was diagnosed, my specialist handed me a bunch of scripts, then said see you in a month.
if i had not found this site and the valuable information contained within it, i think by now i would have turned up at the hospital and would be begging them to remove my whole digestion system
i am still investigating doing the equivalent Enterol lab test here in australia. i am currently gauging my intolerences old fashion way, try an ingredient, wait 12 hours. If i react, i wait a few days and try it again. 2 reactions and it is banned!
fingers and toes are crossed.
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
OK- here's my results. Probably wrong area to post them, but I'm not real good at computer stuff. I read them to say glutens are out, dairy okay. Yeah- I need my ice cream!
A) Gluten Sensitivity Stool and Gene Panel Complete *Best test/best value
Fecal Anti-gliadin IgA: 19 Units
Fecal Anti-tissue Transglutaminase IgA: 27 Units
Quantitative Microscopic Fecal Fat Score: Less than 300 Units
Fecal Anti-casein (cow's milk) IgA: 4 Units
HLA-DQB1 Molecular analysis, Allele 1: 0202
HLA-DQB1 Molecular analysis, Allele 2: 0301
Serologic equivalent: HLA-DQ 2,3 (Subtype 2,7)
Interpretation of Fecal Anti-gliadin IgA (Normal Range is less than 10 Units): Intestinal antigliadin IgA antibody was elevated, indicating that you have active dietary gluten sensitivity. For optimal health, resolution of symptoms (if you have them), and prevention of small intestinal damage and malnutrition, osteoporosis, and damage to other tissues (like nerves, brain, joints, muscles, thyroid, pancreas, other glands, skin, liver, spleen, among others), it is recommended that you follow a strict and permanent gluten free diet. As gluten sensitivity is a genetic syndrome, you may want to have your relatives screened as well.
Interpretation of Fecal Anti-tissue Transglutaminase IgA (Normal Range is less than 10 Units): You have an autoimmune reaction to the human enzyme tissue transglutaminase, secondary to dietary gluten sensitivity.
Interpretation of Quantitative Microscopic Fecal Fat Score (Normal Range is less than 300 Units): Provided that dietary fat is being ingested, a fecal fat score less than 300 indicates there is no malabsorbed dietary fat in stool indicating that digestion and absorption of nutrients is currently normal.
Interpretation of Fecal Anti-casein (cow's milk) IgA (Normal Range is less than 10 Units): Levels of fecal IgA antibody to a food antigen greater than or equal to 10 are indicative of an immune reaction, and hence immunologic "sensitivity" to that food. For any elevated fecal antibody level, it is recommended to remove that food from your diet. Values less than 10 indicate there currently is minimal or no reaction to that food and hence, no direct evidence of food sensitivity to that specific food. However, because 1 in 500 people cannot make IgA at all, and rarely, some people can still have clinically significant reactions to a food antigen despite the lack of a significant antibody reaction (because the reactions primarily involve T cells), if you have an immune syndrome or symptoms associated with food sensitivity, it is recommended that you try a strict removal of suspect foods from your diet for up to 12 months despite a negative test.
Interpretation Of HLA-DQ Testing: Although you do not possess the main HLA-DQB1 genes predisposing to celiac sprue (HLA-DQB1*0201 or HLA-DQB1*0302), HLA gene analysis reveals that you have two copies of a gene that predisposes to gluten sensitivity (any DQ1, DQ2 other than by HLA-DQB1*0201, or DQ3 other than by HLA-DQB1*0302). Furthermore, HLA-DQ2 genes other than by HLA-DQB1*0201 can be associated with celiac sprue in rare cases. Having two copies of a gluten sensitive gene means that each of your parents and all of your children (if you have them) will possess at least one copy of the gene. Two copies also means there is an even stronger predisposition to gluten sensitivity than having one gene and the resultant immunologic gluten sensitivity may be more severe.
Stool Analysis performed by: Frederick Ogunji, Ph.D., EnteroLab
Molecular Gene Analysis performed by: American Red Cross
Interpretation of all results by: Kenneth D. Fine, M.D., EnteroLab
Thank You For Allowing EnteroLab to Help You Attain Optimum Intestinal And Overall Health.
I have a grandson I suspect also has gluten intolerance. Will follow up with him.
Thanks for the support!
Colleen
Colleen
how is the diet going and most importantly quality of life managing the D Demon??
the memory of chronic D and dehydration is still fresh in my mind and i have no desire to return to that type of situation so that stops me wanting foods that are on the banned list. I make the most of yummy foods that are on my allow list.
I guess acceptance of the diagnosis is acceptance of the diet .....
hope all is well
take care
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
So I started the Entocort. And within 90 minuted my stomach quieted, and the onslaught on my body was over.
I couldn't help but chuckle at that remark, but really, it's not funny - it's kind of sad, isn't it, when you consider all the patients whose treatment is adversely affected by all the doctors who have that attitude, (lack of knowledge).
Actually, there are a few, who do a pretty good job of treating MC, but to the best of my knowledge, they are all a long way from where you live. I believe the closest is Colorado, and he only accepts residents of that state, (Dr. Scot Lewey, known on the internet as the Food Doc). We have one member who is fortunate enough to have him as her GI doctor. As noted, the good ones are not easy to get to see.
