Hello everyone, I'm new here. I was just diagnosed last Friday with LC, after suffering for a year. My main symptom is abdominal distension and pain... sometimes just the distension. I do go the to bathroom frequently but not nearly as bad as what I am reading here.
I am getting so much different information it's making my head spin.
My doctor told me high fiber, low fat, 1tbsp Citrucel daily. Avoid caffeine and dairy. I am reading quite the opposite, low fiber, watch the fruits and veggies, it's okay to eat yogurt, etc... I had a biopsy for celiac as well and tested negative.
Here are some questions that I hope can be answered here.
1. Does anyone else have the abdominal distension?
2. How soon do you experience symptoms when a food doesn't agree with you?
3. Will Entocort heal you? (I opted against it for the time being)
4. Since I began eating better, I can't seen to even get to 1000 calories... ??
I have more but I don't want to over burden anyone.
Thank you all in advance. This hasn't been fun at all, lost an entire summer being sick.
So Many Questions :-(
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Dear Jazi,
It is midnight here in Asia, but just thought I would say a quick hello and welcome.
Your questions.
1. yes, if that is the same as bloating most of us have had it/have it. It is usually a result of fermentation in the gut.
2. any time from 15 minutes to 24 hours or more depending on the food and/or individual
3. it will not heal you, but it can mask the symptoms (and give your life back) while you work out the removal of foods that will lead to healing in the long term. IMHO by reducing inflammation it could help in the healing process, but that is debated because inflammation itself is also a pre-request for healing (I let others come in to debate the point).
4. I will let others answer that one....
Bye the way..... in the experience of most here....Fiber NO, Diary NO, Yogurt NO. A negative Celiac Dx does not mean you can tolerate gluten.
Best wishes, ant
It is midnight here in Asia, but just thought I would say a quick hello and welcome.
Your questions.
1. yes, if that is the same as bloating most of us have had it/have it. It is usually a result of fermentation in the gut.
2. any time from 15 minutes to 24 hours or more depending on the food and/or individual
3. it will not heal you, but it can mask the symptoms (and give your life back) while you work out the removal of foods that will lead to healing in the long term. IMHO by reducing inflammation it could help in the healing process, but that is debated because inflammation itself is also a pre-request for healing (I let others come in to debate the point).
4. I will let others answer that one....
Bye the way..... in the experience of most here....Fiber NO, Diary NO, Yogurt NO. A negative Celiac Dx does not mean you can tolerate gluten.
Best wishes, ant
----------------------------------------
"Softly, softly catchee monkey".....
"Softly, softly catchee monkey".....
I had bloating and distention for years before I was diagnosed. Just thought it was normal for me. My pattern for many years before the D started was one formed BM in the AM then within an hour or so a very urgent soft stool with cramping. I thought it was related to my thyroid meds but apparently it was the beginning of MC. Wish I would have done something sooner before the chronic watery D started. Oh Well Hind site!!! I tried dietary changes first without success but I was very sick 12-15 wattery stools a day. I was in denial about the diet for a very long time although I did go GF immediatly. Since your symptoms are not bad I would suggest you go right to the testing done at Enterolab so you can make those changes and maybe avoid meds altogether. If your symptoms worsen in the mean time try the pepto routine reccomended at Finerhealth.com or Mesealamine before you jump into Endocort. that is just my opinon. I was diagnossed 4 years ago.
Two roads diverged in a wood, and I took the one less traveled by and that has made all the difference.
Robert Frost
Robert Frost
Dear Jazi
:
Ant
As an example here is my latest to the chef card (note what I CAN eat). Hopefully you will not have so many food issues as me. It is a shock at first but after a while you find ways to make this work (and find out who your real friends areWhat in the world do people eat?
:As you suggest, it is time for bed,To The Chef…. I suffer from Celiac & Microscopic Colitis causing multiple food intolerances.
CAN EAT:
• (Unprocessed) meat, fish, shellfish - grilled, roasted, fried or baked.
• Rice – boiled, steamed or fried in olive oil, rice noodles. Rice or water chestnut flour.
• Salt, pepper, herbs, garlic, onion, dried coconut.
• Vinegar (EXCEPT NO malt vinegar).
• Olive oil (not other vegetable oils), pure coconut oil, pure balsamic oil (not artificially coloured since that contains gluten), fish sauce
• Well-cooked peeled vegetables (EXCEPT NO: bean, pea, tomato, potato, bell pepper and corn).
• Mushroom, banana, olive, avocado, nuts (EXCEPT NO peanuts and cashew nuts), cooked fruit.
• Wine, spirits, cider, coconut milk (no guar gum added), green tea, pure coco, black coffee, tea.
• Cane Sugar, glucose, fructose, pure maple syrup, honey, fruit.
CANNOT EAT
• Gluten (and similar) – wheat, rye, oat, corn, semolina/tapioca – that is in flour, bread, cake, biscuit, wheat pasta, cuscus, tapioca, beer, malt vinegar.
• Soy, Soy sauce, Soya/Tofu, Soy lechtin, Carrageenan, Worcester source or MSG.
• Dairy – milk, cream, butter, cheese.
• Bean, pea, guar gum, peanut or cashew nut
• Egg
• Potato, tomato, eggplant, bell pepper
• Raw vegetables (e.g. salad)
• High fructose corn syrup, aspartame.
• Vegetable oils – except Olive Oil, which is fine.
Ant
----------------------------------------
"Softly, softly catchee monkey".....
"Softly, softly catchee monkey".....
Jazi,
You have gotten some valuable advice. Hard to wrap one's brain around at first and the feeling of deprivation is pretty hard to take in as well. Really and truly it does get better, unbelievable as it seems right now.
One of the most helpful things to understanding it all is Tex's book Microscopic Colitis. Things may feel out of control right now and actually, who among us has control over anything, but at least in time, you will have the illusion of control over your gut.
Lots of broth at first is really helpful. The thing that is difficult is that it does take more time to prepare food and if you don't like to cook, I'm sure that can be a real bummer. If you can get a soup bone and simmer it in water on the stove for 12+ hours--actually the longer the better with 1 Tablespoon of vinegar in the water (to draw out the minerals in the bone) and add carrots, onions, garlic to the mix and any seasoning that is gluten free to it at the end when you strain the broth out and dump the other ingredients in the garbage, you will have great broth. You can add some well-cooked vegetables to it or some gluten free noodles and have a great soup. This is a great website that explains the benefits of bone broth: http://nourishedkitchen.com/bone-broth/.
Also, until you are healed, dairy should be banished from your diet. That was the hardest for me. I LOVE my sharp cheddar cheese, but I hate having unremitting diarrhea and cramping more! I no longer have diarrhea, but am very constipated and nothing is normal yet, but I have only been without dairy since January. I have been G-F since November of 2011. I am still finding out what my sensitivities are and am careful to avoid soy and sugar. I know that I am allergic to all tree nuts as well. Many substitute milks are made with tree nuts. The people on this website seem to like almond milk quite a bit. Did you know that there are varieties of Chex now that are G-F? You could have Rice or Corn G-F Chex and almond milk for breakfast.
Have patience and read lots. This website has been a lifesaver for me. I hope the same for you!
You have gotten some valuable advice. Hard to wrap one's brain around at first and the feeling of deprivation is pretty hard to take in as well. Really and truly it does get better, unbelievable as it seems right now.
One of the most helpful things to understanding it all is Tex's book Microscopic Colitis. Things may feel out of control right now and actually, who among us has control over anything, but at least in time, you will have the illusion of control over your gut.
Lots of broth at first is really helpful. The thing that is difficult is that it does take more time to prepare food and if you don't like to cook, I'm sure that can be a real bummer. If you can get a soup bone and simmer it in water on the stove for 12+ hours--actually the longer the better with 1 Tablespoon of vinegar in the water (to draw out the minerals in the bone) and add carrots, onions, garlic to the mix and any seasoning that is gluten free to it at the end when you strain the broth out and dump the other ingredients in the garbage, you will have great broth. You can add some well-cooked vegetables to it or some gluten free noodles and have a great soup. This is a great website that explains the benefits of bone broth: http://nourishedkitchen.com/bone-broth/.
Also, until you are healed, dairy should be banished from your diet. That was the hardest for me. I LOVE my sharp cheddar cheese, but I hate having unremitting diarrhea and cramping more! I no longer have diarrhea, but am very constipated and nothing is normal yet, but I have only been without dairy since January. I have been G-F since November of 2011. I am still finding out what my sensitivities are and am careful to avoid soy and sugar. I know that I am allergic to all tree nuts as well. Many substitute milks are made with tree nuts. The people on this website seem to like almond milk quite a bit. Did you know that there are varieties of Chex now that are G-F? You could have Rice or Corn G-F Chex and almond milk for breakfast.
Have patience and read lots. This website has been a lifesaver for me. I hope the same for you!
Jane
Diagnosed with Lymphocytic Colitis 12/19/12
"When it gets dark enough,you can see the stars."
Charles A. Beard
Diagnosed with Lymphocytic Colitis 12/19/12
"When it gets dark enough,you can see the stars."
Charles A. Beard
Hi Jazi,
Welcome to the board. I went to work without being able to fasten the top button or two of my jeans for about 3 or 4 years before it dawned on me that gluten was the cause of that problem. (Fortunately, I spent most of my time out in the country, not in public.
)
Keeping a journal where you record all the food you eat, and when you ate it, how you felt afterwards, and the times and consistency of bowel movements (BMs), can be helpful for tracking down food sensitivities if you prefer to use trial and error methods rather than the EnteroLab testing.
As Ant mentioned, anti-inflammatory drugs can mask the symptoms, but diet changes are necessary if you wish to prevent the inflammation from developing in the first place, and heal your intestines.
The internet is full of recipes for people who have food sensitivities, and one of our members here (who is a professional chef) has listed hundreds of tasty recipes that are free of gluten, dairy, and soy. They can be found at the link below:
http://www.perskyfarms.com/phpBB2/viewforum.php?f=7
Regarding the low sensitivity and poor reliability of the celiac blood tests that most doctors use to test for gluten sensitivity, below is a quote taken from a post that I made in another thread earlier today:
Again, welcome aboard, and please feel free to ask anything.
Tex
Welcome to the board. I went to work without being able to fasten the top button or two of my jeans for about 3 or 4 years before it dawned on me that gluten was the cause of that problem. (Fortunately, I spent most of my time out in the country, not in public.
)Keeping a journal where you record all the food you eat, and when you ate it, how you felt afterwards, and the times and consistency of bowel movements (BMs), can be helpful for tracking down food sensitivities if you prefer to use trial and error methods rather than the EnteroLab testing.
As Ant mentioned, anti-inflammatory drugs can mask the symptoms, but diet changes are necessary if you wish to prevent the inflammation from developing in the first place, and heal your intestines.
The internet is full of recipes for people who have food sensitivities, and one of our members here (who is a professional chef) has listed hundreds of tasty recipes that are free of gluten, dairy, and soy. They can be found at the link below:
http://www.perskyfarms.com/phpBB2/viewforum.php?f=7
Regarding the low sensitivity and poor reliability of the celiac blood tests that most doctors use to test for gluten sensitivity, below is a quote taken from a post that I made in another thread earlier today:
And a negative biopsy for celiac disease certainly does not rule out gluten sensitivity, because the test result will always be negative if the degree of damage to the villi of the small intestine is below a Marsh 3 level. A Marsh level of 1 or 2 indicates damage to the small intestine because of gluten sensitivity, but strangely, the medical profession does not consider damage at those levels sufficient to justify a positive diagnosis of celiac disease. So the patient is forced to suffer for several more years, until the damage becomes serious enough to meet their arbitrary standard.Unfortunately, many doctors assume that the blood tests that they use to screen for celiac disease can actually be used to rule out gluten sensitivity. The reality is that while they can be used to diagnose gluten sensitivity (in the form of celiac disease), they definitely cannot be used to rule out gluten sensitivity, because they are only capable of detecting fully-developed celiac disease. Those tests will not detect any other earlier stage of the disease, nor will they detect gluten sensitivity if the gluten-free diet has been adopted, nor will they detect gluten sensitivity caused by anything other than celiac disease. IOW, you have to have a celiac gene before those tests will detect gluten sensitivity, no matter how severely sensitive to gluten you might actually be. Virtually all of us have genes that predispose us to gluten sensitivity, but only a fraction of us have a celiac gene. That means that virtually all of us can be sensitive to gluten, but the celiac blood tests will only work for a fraction of us, IF we happen to have fully-developed celiac disease.
Some of us also have celiac disease in addition to MC, and for those individuals, the blood tests will show a positive result. For everyone else, they show a false negative result. The bottom line is that the those blood tests are worthless for detecting the type of gluten sensitivity that we have with microscopic colitis. So yes, unless you order the stool test offered by EnteroLab, and they show a negative test result, you definitely should assume that you are sensitive to gluten and you should adjust your diet accordingly, if you want to resolve your symptoms.
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.
Welcome Jazi.
Good questions and you have gotten some good answers so far. I was one of those who went on Entocort, but I had 6-8 WD a day and was losing weight on an already thin body. It helped right away, but it is a serious drug and you must address diet while you are on it because you will likely relapse when you wean off of it ( if you don't take the inflammatory foods out)
To help you understand the food thing, here is the basic info: The four main inflammatory foods are gluten, dairy, soy, and eggs. Almost all of us are gluten intolerant and most of us dairy also. I took the first three out right away and kept eggs in.
Then there are the foods that are "aggravators" that are just too hard on your gut right now, but may be tested back into your diet after you have had some healing. These are things like RAW FRUITS, VEGGIES AND SALAD, beans and legumes, acid -like citrus and tomato, for me, coffee and black tea were out also.
Now you are wondering "what can I eat?" The answer is " a very limited diet for now". Meats, rice and it's products, broth soups with veggies, and cooked veggies. I also ate avocados, sweet potatoes, chex cereal with almond milk, apple sauce, eggs, rice cakes with almond butter, nuts ( some here can't), olive oil and coconut oil, and corn tortillas.
It took me six months to wean off the drugs and start adding things back in. I have been able to add many things in, but continue to heal and stay way from gluten and dairy completely. Do I miss these foods? yes- a lot, but I feel good and have put all my weight back on. Know that there is hope and a road to recovery.
Because you are having so much bloating, it seems like you are definitely reacting to dairy and fruits. They ferment in your large intestine. Sugar can also do that.
So, that is called and elimination diet and you are able to tell what you are reacting to when you "test" it because you have taken out most of the "offenders". If you want a shortcut, check out the Enterolab website and if you can afford it, take some of those tests. They will give you the intolerance answers you are looking for.
Good luck and keep us posted on your progress
leah
Good questions and you have gotten some good answers so far. I was one of those who went on Entocort, but I had 6-8 WD a day and was losing weight on an already thin body. It helped right away, but it is a serious drug and you must address diet while you are on it because you will likely relapse when you wean off of it ( if you don't take the inflammatory foods out)
To help you understand the food thing, here is the basic info: The four main inflammatory foods are gluten, dairy, soy, and eggs. Almost all of us are gluten intolerant and most of us dairy also. I took the first three out right away and kept eggs in.
Then there are the foods that are "aggravators" that are just too hard on your gut right now, but may be tested back into your diet after you have had some healing. These are things like RAW FRUITS, VEGGIES AND SALAD, beans and legumes, acid -like citrus and tomato, for me, coffee and black tea were out also.
Now you are wondering "what can I eat?" The answer is " a very limited diet for now". Meats, rice and it's products, broth soups with veggies, and cooked veggies. I also ate avocados, sweet potatoes, chex cereal with almond milk, apple sauce, eggs, rice cakes with almond butter, nuts ( some here can't), olive oil and coconut oil, and corn tortillas.
It took me six months to wean off the drugs and start adding things back in. I have been able to add many things in, but continue to heal and stay way from gluten and dairy completely. Do I miss these foods? yes- a lot, but I feel good and have put all my weight back on. Know that there is hope and a road to recovery.
Because you are having so much bloating, it seems like you are definitely reacting to dairy and fruits. They ferment in your large intestine. Sugar can also do that.
So, that is called and elimination diet and you are able to tell what you are reacting to when you "test" it because you have taken out most of the "offenders". If you want a shortcut, check out the Enterolab website and if you can afford it, take some of those tests. They will give you the intolerance answers you are looking for.
Good luck and keep us posted on your progress
leah
Dear Jazi,
Welcome to our group. So sorry you need to be here.
I didn't have bloating, so I can't answer that question for you.
As to food reaction times, I find that I react in about 18 hours to gluten. A soy reaction can take up to 48 hours. I haven't messed up with dairy yet, so I don't know about that one, although several other people have mentioned that dairy gives them a very quick reaction of "battery acid D."
My gluten reaction of headache and D. The soy reaction is general aching, extreme fatigue, and sleepiness, and sometimes D.
As Ant said, Entocort will not cure MC. It is a chronic, incurable disease, although it is said that some people experience spontaneous remission. We haven't met any of those here. Most of us control MC with either diet alone, or a combination of diet and medicine. I used Entorcort for 3 months, and felt wonderfully normal during that time. A month after I went off it, the D was back. That was when I began researching on line, and found this forum and made diet changes. I wish that I had known about diet earlier, so that I could have used those 3 months when Entocort was controlling the symptoms to actually be doing something to heal my gut.
Two years on, I am gluten, dairy, and soy free. I also avoid all legumes out of caution, because the soy intolerance often extends to other legumes. I may at some point try beans or peas again, but not soon.
What can you eat? That, of course, depends on your individual sensitivities, and how much damage has been done to your gut, and how much healing has taken place. I now eat both raw and cooked vegetables, fruit, rice, corn, sweet potatoes, regular potatoes (I try to not eat too many due to joint pain), all meats, eggs, avocados, olives. I can eat gluten-free bread--Udi's and Rudi's are best, in my opinion. For snacks, potato chips and corn chips.
I peel my apples, and I've noticed that melons seem to bother me a bit, so I avoid them, and recently I've noticed that mangos make my throat itch, so I'm cautious with those too. The mangos don't cause a digestive reaction.
I cook chicken bones in the crockpot for 24 hours to make broth. It makes fabulous soup with the addition of vegetables, or you could even just eat the broth plain. I buy a chicken, bake it whole in the oven, use the meat for several meals, and cook up the bones.
Read all labels if you're avoiding gluten, dairy, or soy. They put those things in the most surprising places. My husband bought some wasabi, and it has dairy in it!! Some meats have added gluten or soy, presumably in whatever solution they inject them with, so check on that too.
It all sounds hard and depressing, but once you make up your mind that this helps and you are going to do it, and get a little experience with what works for you, it is totally do-able. Every so often I get to feeling sorry for myself, but that is almost always when I'm faced with a church potluck or going out to eat at a place that I'm not sure will have safe food. But cooking at home, we have a fine, tasty diet.
Martha
Welcome to our group. So sorry you need to be here.
I didn't have bloating, so I can't answer that question for you.
As to food reaction times, I find that I react in about 18 hours to gluten. A soy reaction can take up to 48 hours. I haven't messed up with dairy yet, so I don't know about that one, although several other people have mentioned that dairy gives them a very quick reaction of "battery acid D."
My gluten reaction of headache and D. The soy reaction is general aching, extreme fatigue, and sleepiness, and sometimes D.
As Ant said, Entocort will not cure MC. It is a chronic, incurable disease, although it is said that some people experience spontaneous remission. We haven't met any of those here. Most of us control MC with either diet alone, or a combination of diet and medicine. I used Entorcort for 3 months, and felt wonderfully normal during that time. A month after I went off it, the D was back. That was when I began researching on line, and found this forum and made diet changes. I wish that I had known about diet earlier, so that I could have used those 3 months when Entocort was controlling the symptoms to actually be doing something to heal my gut.
Two years on, I am gluten, dairy, and soy free. I also avoid all legumes out of caution, because the soy intolerance often extends to other legumes. I may at some point try beans or peas again, but not soon.
What can you eat? That, of course, depends on your individual sensitivities, and how much damage has been done to your gut, and how much healing has taken place. I now eat both raw and cooked vegetables, fruit, rice, corn, sweet potatoes, regular potatoes (I try to not eat too many due to joint pain), all meats, eggs, avocados, olives. I can eat gluten-free bread--Udi's and Rudi's are best, in my opinion. For snacks, potato chips and corn chips.
I peel my apples, and I've noticed that melons seem to bother me a bit, so I avoid them, and recently I've noticed that mangos make my throat itch, so I'm cautious with those too. The mangos don't cause a digestive reaction.
I cook chicken bones in the crockpot for 24 hours to make broth. It makes fabulous soup with the addition of vegetables, or you could even just eat the broth plain. I buy a chicken, bake it whole in the oven, use the meat for several meals, and cook up the bones.
Read all labels if you're avoiding gluten, dairy, or soy. They put those things in the most surprising places. My husband bought some wasabi, and it has dairy in it!! Some meats have added gluten or soy, presumably in whatever solution they inject them with, so check on that too.
It all sounds hard and depressing, but once you make up your mind that this helps and you are going to do it, and get a little experience with what works for you, it is totally do-able. Every so often I get to feeling sorry for myself, but that is almost always when I'm faced with a church potluck or going out to eat at a place that I'm not sure will have safe food. But cooking at home, we have a fine, tasty diet.
Martha
Martha
Thank you so much everyone for all your help. You have all been wonderful.
Just got off the phone with Enterolab and they don't have a license to do testing on NY residents. That really bummed me out. I guess the only way is trial and error and I don't really know how well it will work since I eat quite frequently throughout the day. How will I know what is causing me to feel so bad? I will omit dairy
, gluten and fresh fruits and veggies. Can I have my daily banana? Cooked spinach?
No one has mentioned anything about caffeine or chocolate. I only have one cup of coffee in the morning, is that ok? Can I have dark chocolate almond milk?
Last May when my symptoms began, I had a stool sample sent to Metametrix labs, it came back positive for parasites but they weren't able to identify it.. I went on Albendazole 4 different times between then and now, it worked wonders the first time, not so much the other three times. I wonder if I really did have an intestinal parasite.
Anyway, I appreciate all the information you have given. I apologize about all the questions but this just doesn't seem real. What I need to do is stop being a big fat baby and accept this. There are people out there with so much worse to deal with.
One more question (at least in this post)... make that two more questions:
1. Will Entocort make me fat?
2. Do SSRI's cause MC? I read that somewhere, from my gazillion google searches.
Just got off the phone with Enterolab and they don't have a license to do testing on NY residents. That really bummed me out. I guess the only way is trial and error and I don't really know how well it will work since I eat quite frequently throughout the day. How will I know what is causing me to feel so bad? I will omit dairy
, gluten and fresh fruits and veggies. Can I have my daily banana? Cooked spinach?No one has mentioned anything about caffeine or chocolate. I only have one cup of coffee in the morning, is that ok? Can I have dark chocolate almond milk?
Last May when my symptoms began, I had a stool sample sent to Metametrix labs, it came back positive for parasites but they weren't able to identify it.. I went on Albendazole 4 different times between then and now, it worked wonders the first time, not so much the other three times. I wonder if I really did have an intestinal parasite.
Anyway, I appreciate all the information you have given. I apologize about all the questions but this just doesn't seem real. What I need to do is stop being a big fat baby and accept this. There are people out there with so much worse to deal with.
One more question (at least in this post)... make that two more questions:
1. Will Entocort make me fat?
2. Do SSRI's cause MC? I read that somewhere, from my gazillion google searches.
Entocort may cause you to put on weight, but it might be worth a temporary weight gain. I have not had to take it. There is a theory that SSRIs may trigger MC. Also some of the meds used for GERD called PPIs are thought to trigger it. Some of us can eat bananas, others cannot. Well cooked spinach might be okay. It is hard to know until you do the elimination diet. I'm so sorry that you live in a state that doesn't allow Enterolab.
I doubt very much that ANYONE here thinks you are being a baby about having this disease and having to give up some of your most favorite foods. It is a terrible loss and you need to give yourself time to grieve it. We have ALL been where you are and understand the frustration, sadness, and even anger at the loss. It's already tough enough; don't be hard on yourself if you are not happily looking forward to a lifestyle change you didn't ask for!
I doubt very much that ANYONE here thinks you are being a baby about having this disease and having to give up some of your most favorite foods. It is a terrible loss and you need to give yourself time to grieve it. We have ALL been where you are and understand the frustration, sadness, and even anger at the loss. It's already tough enough; don't be hard on yourself if you are not happily looking forward to a lifestyle change you didn't ask for!
Jane
Diagnosed with Lymphocytic Colitis 12/19/12
"When it gets dark enough,you can see the stars."
Charles A. Beard
Diagnosed with Lymphocytic Colitis 12/19/12
"When it gets dark enough,you can see the stars."
Charles A. Beard
-
ladyathome
- Adélie Penguin
- Posts: 101
- Joined: Thu Feb 14, 2013 10:08 am
Jazi,
I also did GI Effects with Metametrix Lab with my DO. They also found parasites (hookworm). I took Mebendazole, and like you, the first time every symptom went away...but then returned. I took the Mebendazole a couple of more times and had less success the subsequent times. (By the way as of December, 2011, it is no longer available from any manufacturer in the USA. No reason was given publicly for this discontinuation.) My DO still believes that parasites somehow have something to do with my condition...My GI doesn't believe I ever had a parasite. He said he has never in his practice found someone with hookworm.
My family doctor wanted me to take an SSRI to "calm" my GI issues and after 3 weeks, it worsened my condition drastically, so I went off the SSRI immediately.
My GI doctor said I should try to cut gluten and sugar but he didn't sound like he put much emphasis having success nor did he make a big deal out of my diagnosis of CC. That's why I stayed sick for so long before finding this site. He just didn't seem to act like having CC would a big life changing thing for me. I keep thinking, "I have something really wrong with me and they just can't find it".. I cut gluten and sugar, and felt some better, but it wasn't enough.
Once I found this site, I just cut all the major offenders and I can't believe how much of a difference it made for me. I had no idea diet could make such a difference until I found this site. I just went ahead and cut the major offenders that everyone talks about: Gluten, Eggs, Dairy, Beef, Soy, Rice and Corn products, Nightshades, and Sugar. I didn't do the EnteroLab tests yet. I just went for it!
Now I eat a lot of ground turkey, turkey bacon, chicken, bison, fish, and fresh veggies (well cooked). I make a lot of soups because I can use meat and veggies and GF broth. I try to stick with organic and more of a Paleo diet. I also get a vegan protein powder that I mix with Almond Milk called SunWarrior Blend GF SF DF that I enjoy. I seem to do okay with fruits as long as I eat them by themselves, not close to a meal. Bananas are fine for me.
I switched to hot teas for a while during my fares, but I drink coffee now. I just limit it to one cup or use caffeine free. I don't seem to have a problem with it.
I can't answer the Entocort question because my GI doctor didn't want to take that route yet with me since I'm doing so well with diet. But I did do the Pepto-Bismol protocol and that worked wonders. Of course I found out about that here on this site as well!
I also did GI Effects with Metametrix Lab with my DO. They also found parasites (hookworm). I took Mebendazole, and like you, the first time every symptom went away...but then returned. I took the Mebendazole a couple of more times and had less success the subsequent times. (By the way as of December, 2011, it is no longer available from any manufacturer in the USA. No reason was given publicly for this discontinuation.) My DO still believes that parasites somehow have something to do with my condition...My GI doesn't believe I ever had a parasite. He said he has never in his practice found someone with hookworm.
My family doctor wanted me to take an SSRI to "calm" my GI issues and after 3 weeks, it worsened my condition drastically, so I went off the SSRI immediately.
My GI doctor said I should try to cut gluten and sugar but he didn't sound like he put much emphasis having success nor did he make a big deal out of my diagnosis of CC. That's why I stayed sick for so long before finding this site. He just didn't seem to act like having CC would a big life changing thing for me. I keep thinking, "I have something really wrong with me and they just can't find it".. I cut gluten and sugar, and felt some better, but it wasn't enough.
Once I found this site, I just cut all the major offenders and I can't believe how much of a difference it made for me. I had no idea diet could make such a difference until I found this site. I just went ahead and cut the major offenders that everyone talks about: Gluten, Eggs, Dairy, Beef, Soy, Rice and Corn products, Nightshades, and Sugar. I didn't do the EnteroLab tests yet. I just went for it!
Now I eat a lot of ground turkey, turkey bacon, chicken, bison, fish, and fresh veggies (well cooked). I make a lot of soups because I can use meat and veggies and GF broth. I try to stick with organic and more of a Paleo diet. I also get a vegan protein powder that I mix with Almond Milk called SunWarrior Blend GF SF DF that I enjoy. I seem to do okay with fruits as long as I eat them by themselves, not close to a meal. Bananas are fine for me.
I switched to hot teas for a while during my fares, but I drink coffee now. I just limit it to one cup or use caffeine free. I don't seem to have a problem with it.
I can't answer the Entocort question because my GI doctor didn't want to take that route yet with me since I'm doing so well with diet. But I did do the Pepto-Bismol protocol and that worked wonders. Of course I found out about that here on this site as well!
Jazi,
Concerning the New York policy on ordering lab tests:
New York physicians choose to maintain a monopoly on who can order tests in the state, so they convinced the state legislature to pass a law which forbids any consumers from ordering tests directly from any laboratory. (New York is not known for it's generous position on personal freedoms — politicians and bureaucrats there apparently prefer to dictate as much as they possibly can concerning what residents of the state are allowed to do).
There is at least one additional state on the east coast that has the same policy in place, as I recall. We have members who have simply had friends in an adjacent state order the test kit for them (or they ordered the test themselves, but had it shipped to a friend in an adjacent state), and then when the test kit arrived, they went to visit their friends, and sent the test kit back to the lab from there. The results of your tests will be available for you to view on the internet, so once you get the sample sent off, you have it made.
Tex
Concerning the New York policy on ordering lab tests:
New York physicians choose to maintain a monopoly on who can order tests in the state, so they convinced the state legislature to pass a law which forbids any consumers from ordering tests directly from any laboratory. (New York is not known for it's generous position on personal freedoms — politicians and bureaucrats there apparently prefer to dictate as much as they possibly can concerning what residents of the state are allowed to do).
There is at least one additional state on the east coast that has the same policy in place, as I recall. We have members who have simply had friends in an adjacent state order the test kit for them (or they ordered the test themselves, but had it shipped to a friend in an adjacent state), and then when the test kit arrived, they went to visit their friends, and sent the test kit back to the lab from there. The results of your tests will be available for you to view on the internet, so once you get the sample sent off, you have it made.
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.
Bummer about the lab Jazi! I didn't realize NY had such a law. Weird. Because I am IgA deficient, I couldn't use the results from the lab either and had to do it the elimination way.
I personally can't drink coffee or tea ( only herbal). Some can some can't. I would cut it out for a couple of weeks ( or until you feel somewhat better) and then try it again and see if you have a reaction.
You will know if you are reacting to something AFTER you start feeling better and then ... wham, a reaction to something new or something you tried again.
I can eat small quantities of dark chocolate ( that has no milk in it. Check the label), but it does have soy. I didn't find out that I was reacting to soy until I weaned down the dose of Entocort (about three months into the diet).My reaction, however, is less then the one I have with dairy. That one is strong and fast! Remember, butter is dairy.
I am one of those people who can't eat bananas, but many can. Again, I would take them out for now, and try them back in later on.
Try to keep it as simple as possible at first. Meats, veggies, rice...etc. Heal, Heal, Heal. THEN try to add one thing in at a time about three days apart.
Ask as many questions as you'd like. That's why we are here- to help each other :)
Leah
Ps your are not a baby. We all go through the denial stage. I know I did!
I personally can't drink coffee or tea ( only herbal). Some can some can't. I would cut it out for a couple of weeks ( or until you feel somewhat better) and then try it again and see if you have a reaction.
You will know if you are reacting to something AFTER you start feeling better and then ... wham, a reaction to something new or something you tried again.
I can eat small quantities of dark chocolate ( that has no milk in it. Check the label), but it does have soy. I didn't find out that I was reacting to soy until I weaned down the dose of Entocort (about three months into the diet).My reaction, however, is less then the one I have with dairy. That one is strong and fast! Remember, butter is dairy.
I am one of those people who can't eat bananas, but many can. Again, I would take them out for now, and try them back in later on.
Try to keep it as simple as possible at first. Meats, veggies, rice...etc. Heal, Heal, Heal. THEN try to add one thing in at a time about three days apart.
Ask as many questions as you'd like. That's why we are here- to help each other :)
Leah
Ps your are not a baby. We all go through the denial stage. I know I did!