Hello,
This is my first time to ever talk online in any kind of forum. My disease has made me seek this out. I was diagnosed with Lymphatic Colitis 8 months ago and I am just now realizing that this it's more serious than I had thought. After a year of frequent potty and being treated incorrectly with prilosec, I finally got the endoscopy and found out what's wrong with me. I took entocorte for six weeks and that medicine went along okay, no gut ache until now 7 months later, and I have what I suspect you call a FLARE up. The enocorte cost me $150 and that's with good insurance so I am grateful to whoever posted link for a generic overseas version of it. I also appreciated the link for the food allergy testing clinic. My main problem now is battling my addiction to foods that don't digest well. I still crave them. I succumb and then I pay the price. This online support may help. How do others battle the cravings for foods and spices I used to love. I mourn the demise of popcorn at the movies, Indian food, Italian red sauces, etc etc.....& I am grieving the loss of enjoying going to dinner with friends or to dinner at their houses. Will this disease send me to isolation from social eating?
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CoryGut
Age 71
Diagnosed with Lymphocytic Colitis Sept. 2010
On and off Entocort(Currently Off)
Age 71
Diagnosed with Lymphocytic Colitis Sept. 2010
On and off Entocort(Currently Off)
-
BuggityBoo
- Posts: 16
- Joined: Tue Jun 28, 2011 12:44 pm
I know it's hard. I fell off the wagon bad this weekend. Cinnamon, sweet potato fries, sopes, movie popcorn, licorice. Today I am home from work sick. Nausea and lots of watery D. To me that is motivation to stick to the right foods. I also went out to several different stores right after I was diagnosed and bought anything GF my heart desired. This way I was able to fund out what I liked and didn't like. I also had plenty of options around so if I felt like a burger or pasta, it was there. Also. There are some really good deserts out there. Cookie, sweet rolls, muffins. Some foods that are GF taste better to me than the ones with gluten. I suggest trying a variety so you can find some favorites. When ever you get a craving go for one of those items.
Welcome Corygut!
You were diagnosed with LC through an endoscopy (upper GI) and not a colonoscopy (lower GI)? Or did you have both? Once you get the main offenders out of your diet, gluten and most likely dairy and/or soy, you will feel much better and eventually be able to tolerate spices, red sauces, indian food, etc. (so long as they are GF and DF/SF). Many restaurants will accomodate your needs. I battle cravings all the time, but I know I'd rather feel good than indulge in my no-no foods and feel sick and hungover. You will go through the stages of grief with your new diet, and even once you reach acceptance, you may get angry or shed a tear or two when you encounter enticing foods. It sucks, but your health matters more than your taste buds.
You were diagnosed with LC through an endoscopy (upper GI) and not a colonoscopy (lower GI)? Or did you have both? Once you get the main offenders out of your diet, gluten and most likely dairy and/or soy, you will feel much better and eventually be able to tolerate spices, red sauces, indian food, etc. (so long as they are GF and DF/SF). Many restaurants will accomodate your needs. I battle cravings all the time, but I know I'd rather feel good than indulge in my no-no foods and feel sick and hungover. You will go through the stages of grief with your new diet, and even once you reach acceptance, you may get angry or shed a tear or two when you encounter enticing foods. It sucks, but your health matters more than your taste buds.
Thanks, I didn't realize gluten free was so important with this disease. My doctor only said, no whole wheat products, he said, no roughage. I will give the GF products a try. I know what made me sick this time. I was dog sitting at a friends and she had a left over casserole i thought was mac and cheese with green pepper but the green pepper was jalapenos peppers. boy, am i suffering. Sounds like you had a binge. LOL! I love licorice too, especially black licorice. Reading this forum has been good, I have not forsaken dairy, or butter either so maybe I better get some food allergy test done. Bloated today and have a headache. I do hope you are feeling better now.
I have learned to cook squash - every kind of squash. Who would have thought yucky old squash would be a treat.
I have learned to cook squash - every kind of squash. Who would have thought yucky old squash would be a treat.
CoryGut
Age 71
Diagnosed with Lymphocytic Colitis Sept. 2010
On and off Entocort(Currently Off)
Age 71
Diagnosed with Lymphocytic Colitis Sept. 2010
On and off Entocort(Currently Off)
YEs. I did have both the endoscopy and colonoscopy I don't want to go through that again. It's hard to be at work today with my stomach making noises and I feel all fat and bloated and worried about gas slipping out. I have been having bad headaches the past two days also. Is this common during a flare up? I have been inviting people to dine at my house instead of theirs and I make my one safe dish, mac and cheese. Now though i am wondering about dairy products since I've been reading these blogs about the intolerance many have for dairy.
I love the Potty People slogan. Made me smile and feel better. I think I have found my people!
I love the Potty People slogan. Made me smile and feel better. I think I have found my people!
CoryGut
Age 71
Diagnosed with Lymphocytic Colitis Sept. 2010
On and off Entocort(Currently Off)
Age 71
Diagnosed with Lymphocytic Colitis Sept. 2010
On and off Entocort(Currently Off)
I don't get cravings any more, Bug - probably because I feel so much better, and like you said, it isn't worth it (but also I have very few sweets so crave them less... that truly is a vicious circle).
However I absolutely DO keep foods on hand for when I need to eat something and don't have time to shop/prep/cook/etc. I recommend potato chips - a lot of GF snacks can be very processed, and fully of other ingredients that may not work for all of us. Crazy that potato chips became my health food... I am actually 'weaning off' them now ;)
For a while, I'd hardboil a couple of eggs so I'd have something to grab. But then I found out that I am sensitive to eggs. I am hoping that if I am very strict with my diet for some time, I might have an occasional egg back in my life some day. (Gluten I am convinced is Forever Forbidden, and I don't miss it any more - same with dairy.)
Almond butter was a go-to food for a while, too - I am trying not to eat giant amount of any one thing, and to keep some balance. Bananas... Hope you both feel better quickly.
Cory,
Welcome. You will be able to enjoy dinner out and at friends' homes. We eat out frequently and visit with friends a lot. It does take a little vigilance, but it can absolutely be done, and you'll get a lot of tips for it here. I eat Indian food and Italian red sauces without a problem, as long as they are dairy and gluten free (which mostly they are). The things the GI docs think are problem foods are rarely the true culprits... sigh.
Are you off Entocort now? Many GI docs prescribe it for a short time, but people here have found it takes longer than they realize to heal. Also, if you continued to eat foods that your body reacts to while taking Entocort, the inflammation was just simmering along. The most common and ferocious food intolerance by far among this group is gluten - all gluten grains in any form (wheat, barley, rye, and oats are iffy). Dairy is out for just about all of us as well... and from there, our paths diverge and some people have issues with soy (about half of us), some with eggs, etc.
Spices are rarely a problem in themselves, though some people have specific reactions to some (that is much more rare than gluten/dairy/eggs/soy/etc). Super-hot things may be irritating during a flare, but once you get the flare-causing foods out of the way, you can eat a delicious and varied diet. Some folks have multiple intolerances, which makes it tricky to figure out and to manage.
I'm among the many here who used Enterolab testing to verify my primary food intolerances, and it was very helpful.
Z - I was thinking of you, you spice appreciater ;) I really don't experience a lot of cravings. I really like not being sick A LOT. I do appreciate the spicy... Had fantastic GF nouveau-fun Mexican on Sunday.
Corey, most GI docs don't understand the diet-MC connection, though he is right that esp. when our symptoms are elevated, high-fiber foods are irritating. Standard food allergy testing is not helpful for this kind of immune reaction - it basically tests the wrong thing, so even if you come up as not "allergic" you could still be sickened by a particular food.
I cut out all gluten and dairy without any testing, because I was so sick and this forum gave me so much hope. I was drastically better within six days, though still healing. It really takes some time - and I did use Pepto Bismol to get me over the hump (which does not agree with everyone). I am a huge fan and poster child for the dietary approach, hard-core, with the use of medication if you need to and it helps. I feel lucky I have been able to wrestle the MC beast without meds thus far.
I am beginning to believe that some food cravings are actually symptoms of food "issues" (but this is a half-baked theory, and I tend to have 5 or 6 of those a day).
Oh, and rambling - that must be a symptom, right? When do I get over that??
All my best,
Sara
However I absolutely DO keep foods on hand for when I need to eat something and don't have time to shop/prep/cook/etc. I recommend potato chips - a lot of GF snacks can be very processed, and fully of other ingredients that may not work for all of us. Crazy that potato chips became my health food... I am actually 'weaning off' them now ;)
For a while, I'd hardboil a couple of eggs so I'd have something to grab. But then I found out that I am sensitive to eggs. I am hoping that if I am very strict with my diet for some time, I might have an occasional egg back in my life some day. (Gluten I am convinced is Forever Forbidden, and I don't miss it any more - same with dairy.)
Almond butter was a go-to food for a while, too - I am trying not to eat giant amount of any one thing, and to keep some balance. Bananas... Hope you both feel better quickly.
Cory,
Welcome. You will be able to enjoy dinner out and at friends' homes. We eat out frequently and visit with friends a lot. It does take a little vigilance, but it can absolutely be done, and you'll get a lot of tips for it here. I eat Indian food and Italian red sauces without a problem, as long as they are dairy and gluten free (which mostly they are). The things the GI docs think are problem foods are rarely the true culprits... sigh.
Are you off Entocort now? Many GI docs prescribe it for a short time, but people here have found it takes longer than they realize to heal. Also, if you continued to eat foods that your body reacts to while taking Entocort, the inflammation was just simmering along. The most common and ferocious food intolerance by far among this group is gluten - all gluten grains in any form (wheat, barley, rye, and oats are iffy). Dairy is out for just about all of us as well... and from there, our paths diverge and some people have issues with soy (about half of us), some with eggs, etc.
Spices are rarely a problem in themselves, though some people have specific reactions to some (that is much more rare than gluten/dairy/eggs/soy/etc). Super-hot things may be irritating during a flare, but once you get the flare-causing foods out of the way, you can eat a delicious and varied diet. Some folks have multiple intolerances, which makes it tricky to figure out and to manage.
I'm among the many here who used Enterolab testing to verify my primary food intolerances, and it was very helpful.
Z - I was thinking of you, you spice appreciater ;) I really don't experience a lot of cravings. I really like not being sick A LOT. I do appreciate the spicy... Had fantastic GF nouveau-fun Mexican on Sunday.
Corey, most GI docs don't understand the diet-MC connection, though he is right that esp. when our symptoms are elevated, high-fiber foods are irritating. Standard food allergy testing is not helpful for this kind of immune reaction - it basically tests the wrong thing, so even if you come up as not "allergic" you could still be sickened by a particular food.
I cut out all gluten and dairy without any testing, because I was so sick and this forum gave me so much hope. I was drastically better within six days, though still healing. It really takes some time - and I did use Pepto Bismol to get me over the hump (which does not agree with everyone). I am a huge fan and poster child for the dietary approach, hard-core, with the use of medication if you need to and it helps. I feel lucky I have been able to wrestle the MC beast without meds thus far.
I am beginning to believe that some food cravings are actually symptoms of food "issues" (but this is a half-baked theory, and I tend to have 5 or 6 of those a day).
Oh, and rambling - that must be a symptom, right? When do I get over that??
All my best,
Sara
Are you talking about mac and cheese made with GF rice pasta? After my diagnosis, I developed "food poisoning" one weekend that just wouldn't quit. Each day I wondered if I should go to the hospital for rehydration. I settled my stomach with my "safe" foods - toast and pasta 
. After 8 days, I realized this was not food poisoning, my "safe" foods were making me worse!! I promptly cut the gluten containing foods and magically improved. I received my Enterolab results shortly therafter and knew for sure. I think I was having what's known as a celiac crisis! When I eat dairy now I get what we lovingly refer to here as "battery acid D." It doesn't last as long as gluten D, but boy do you notice it!
. After 8 days, I realized this was not food poisoning, my "safe" foods were making me worse!! I promptly cut the gluten containing foods and magically improved. I received my Enterolab results shortly therafter and knew for sure. I think I was having what's known as a celiac crisis! When I eat dairy now I get what we lovingly refer to here as "battery acid D." It doesn't last as long as gluten D, but boy do you notice it!Thanks so much for sharing with me about colitis food issues. My GI really didn't tell me much. My safe foods have been white pasta, white rice, and white bread, cooked squash, and poached eggs. Now i am switching to GF white foods. I am craving my old favorite foods and hope that this will go away without a 12 step program. If I eat something and get sick, why do I stupidly try it again a few months down the line. Dumb eh?
Haha! Battery acid D, I can relate, I've been acting volcanic.
Thank god for this site. It only took me 8 months to find it. I was reading the Crohn's site a lot but it just wasn't me and I couldn't relate but reading this forum for only one day I am relating to everything.
Haha! Battery acid D, I can relate, I've been acting volcanic.
Thank god for this site. It only took me 8 months to find it. I was reading the Crohn's site a lot but it just wasn't me and I couldn't relate but reading this forum for only one day I am relating to everything.
CoryGut
Age 71
Diagnosed with Lymphocytic Colitis Sept. 2010
On and off Entocort(Currently Off)
Age 71
Diagnosed with Lymphocytic Colitis Sept. 2010
On and off Entocort(Currently Off)
Cory,
Even GF versions of your safe foods would have given me trouble, when I was first sick. I couldn't tolerate even white rice, or quinoa, even in small amounts. We are all different, but my best foods were chicken or turkey broth (homemade is poss.), bananas, and gradually I was able to add some vegetables with the chicken meat & broth.
After a while I found I could tolerate white rice, without getting D. (I did better with small amounts, and still seem to be better off without it.) I feel as though saying NO to a lot of foods in the beginning has enabled me to say YES a lot more now. But that's not a scientific fact, just the way I am interpreting my experience.
The whole time I was sick, I never had a problem with coffee. Go figure! I believe that our ideas about safe foods (toast, pasta, etc. - avoiding flavorful or colorful things) are not necessarily based on fact, but on an antiquated understanding of the digestive system. (And it is a shame so many GI docs are still stuck back there.)
I really have found the cravings to reduce, and hope you have the same experience. The big key (as with any regimen) is to be prepared with something you can/should/want to eat so if a craving strikes (or actual hunger - a great reason to eat), you can take care of yourself without undue risk!
Good luck,
Sara
Even GF versions of your safe foods would have given me trouble, when I was first sick. I couldn't tolerate even white rice, or quinoa, even in small amounts. We are all different, but my best foods were chicken or turkey broth (homemade is poss.), bananas, and gradually I was able to add some vegetables with the chicken meat & broth.
After a while I found I could tolerate white rice, without getting D. (I did better with small amounts, and still seem to be better off without it.) I feel as though saying NO to a lot of foods in the beginning has enabled me to say YES a lot more now. But that's not a scientific fact, just the way I am interpreting my experience.
The whole time I was sick, I never had a problem with coffee. Go figure! I believe that our ideas about safe foods (toast, pasta, etc. - avoiding flavorful or colorful things) are not necessarily based on fact, but on an antiquated understanding of the digestive system. (And it is a shame so many GI docs are still stuck back there.)
I really have found the cravings to reduce, and hope you have the same experience. The big key (as with any regimen) is to be prepared with something you can/should/want to eat so if a craving strikes (or actual hunger - a great reason to eat), you can take care of yourself without undue risk!
Good luck,
Sara
I'm going back to basics now because I that burning in my gut has reappeared. I can't wait to leave work and lie down. You're right my ideas of safe foods are just old fashioned. flat ginger ale and chicken soup like Mom used to give me. From what I am reading women in their 50's & 60's are prone to this more. There can be genetic links my doctor said. I don't know anyone who has ever had this. Thus this forum is my first chance to find others like me.
CoryGut
Age 71
Diagnosed with Lymphocytic Colitis Sept. 2010
On and off Entocort(Currently Off)
Age 71
Diagnosed with Lymphocytic Colitis Sept. 2010
On and off Entocort(Currently Off)
Cory,
I wish you a speedy end to your day and a good rest.
They used to believe this was a disease of women our age, but then they just didn't look for it in men or younger women. It seems more and more to be an equal opportunity kinda thing. And there is a lot of info here about genetic links (if you go to the Forum Index, some of us have shared the results of genetic testing in a specific forum topic, as well as food intolerance results from Enterolab and from MRT testing... interesting stuff). I believe now that many of many parents' symptoms of "aging" were related to gluten intolerance. Many autoimmune diseases are; not to mention osteoporosis, cataracts (for celiac patients, at least), arthritis, thyroid...
Don't blame yourself - that old-fashioned food list is not your fault. It is hard to wrap one's mind around the idea that the "staff of life" is what's causing the worst health crisis ever.
Feel better,
Sara
I wish you a speedy end to your day and a good rest.
They used to believe this was a disease of women our age, but then they just didn't look for it in men or younger women. It seems more and more to be an equal opportunity kinda thing. And there is a lot of info here about genetic links (if you go to the Forum Index, some of us have shared the results of genetic testing in a specific forum topic, as well as food intolerance results from Enterolab and from MRT testing... interesting stuff). I believe now that many of many parents' symptoms of "aging" were related to gluten intolerance. Many autoimmune diseases are; not to mention osteoporosis, cataracts (for celiac patients, at least), arthritis, thyroid...
Don't blame yourself - that old-fashioned food list is not your fault. It is hard to wrap one's mind around the idea that the "staff of life" is what's causing the worst health crisis ever.
Feel better,
Sara
Hi Cory,
Welcome aboard. I hope you can find the answers here, that you are seeking. This disease is a lot more complex than most doctors realize, and it takes a lot of hard work and dedication to track down all of our food sensitivities, and figure out a diet that will allow us to live symptom-free. Some people can get good relief of symptoms by using Entocort, but to do that, it has to be taken indefinitely. The safest way to treat the disease, is by avoiding all the foods to which we are sensitive.
Again, welcome aboard, and please feel free to ask anything.
Tex
Welcome aboard. I hope you can find the answers here, that you are seeking. This disease is a lot more complex than most doctors realize, and it takes a lot of hard work and dedication to track down all of our food sensitivities, and figure out a diet that will allow us to live symptom-free. Some people can get good relief of symptoms by using Entocort, but to do that, it has to be taken indefinitely. The safest way to treat the disease, is by avoiding all the foods to which we are sensitive.
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.
Hi Cory,
I was diagnosed a month ago with Microscopic Collagenous Colitis and immediately put on 9mg of Entocort. I was having XD up to 20 times a day for 5 weeks before the diagnosis. I thought I had food poisoning, so I put off going to the doctor until I finally realized food poisoning should have long since passed (pun intended!).
I'm to take the Entocort for an unspecified time. I will see my doctor on August 3rd for a follow up appt.
Sara, Tex and many others have been very supportive and I know you'll find help here. I'm puzzled by your doctor saying not to eat anything "rough". I do understand about raw vegetables now, but I've been against white rice and white bread for years as I think of it as just empty calories. As Sara pointed out, gluten is a universal no-no for those of us here, as well as dairy ... at least for most of us. Your comfort food of mac and cheese sets all kinds of alarms off for me. Please make sure you find GF/DF pasta ... the brown (yep, I said brown) rice stuff is good. Read every label. I am amazed at how many things have milk and gluten in them. Also, Tex taught me the word "casein" which is like gluten and is in oats. I haven't had the courage to try GF oats yet, and since learning of casein, I may never try. We shall see how things go over time.
If you have a need for sugar fix, try Dove dark chocolate. I have had a piece once in a great while and it's good. I've had no reactions to it. But I have to say, I don't crave sweets often anyway, so it's not up there atop my list. Van's makes fabulous GF/DF waffles (in the freezer case at health food stores like Whole Foods, Sunflower Market, and Trader Joe's).
I hope you feel better soon. Please do consider following a GF/DF diet strictly (bring your reading glasses to the grocery store; you'll need them!)
Sharaine
I was diagnosed a month ago with Microscopic Collagenous Colitis and immediately put on 9mg of Entocort. I was having XD up to 20 times a day for 5 weeks before the diagnosis. I thought I had food poisoning, so I put off going to the doctor until I finally realized food poisoning should have long since passed (pun intended!).
I'm to take the Entocort for an unspecified time. I will see my doctor on August 3rd for a follow up appt.
Sara, Tex and many others have been very supportive and I know you'll find help here. I'm puzzled by your doctor saying not to eat anything "rough". I do understand about raw vegetables now, but I've been against white rice and white bread for years as I think of it as just empty calories. As Sara pointed out, gluten is a universal no-no for those of us here, as well as dairy ... at least for most of us. Your comfort food of mac and cheese sets all kinds of alarms off for me. Please make sure you find GF/DF pasta ... the brown (yep, I said brown) rice stuff is good. Read every label. I am amazed at how many things have milk and gluten in them. Also, Tex taught me the word "casein" which is like gluten and is in oats. I haven't had the courage to try GF oats yet, and since learning of casein, I may never try. We shall see how things go over time.
If you have a need for sugar fix, try Dove dark chocolate. I have had a piece once in a great while and it's good. I've had no reactions to it. But I have to say, I don't crave sweets often anyway, so it's not up there atop my list. Van's makes fabulous GF/DF waffles (in the freezer case at health food stores like Whole Foods, Sunflower Market, and Trader Joe's).
I hope you feel better soon. Please do consider following a GF/DF diet strictly (bring your reading glasses to the grocery store; you'll need them!)
Sharaine
i'm learning so much on this forum......
Thanks guys, I'm learning so much. Sadly, it seems a lot of what I thought was right has not worked for the most of you. I'm going to change course immediately and start with getting #1 gluten out of my diet. I have always seen so many "gluten free" products in the stores not knowing just why people needed them and now I'm one of those. I'm learning I need to eat the opposite of what I used to do. No more of my beloved salads w/ whole grain sandwiches. I am going to stock up on the waffles and I've already discovered a yogurt I like called, Bulgarian Yogurt, they have it at Whole Foods and it's nice and tart. I can eat carrots only if they are steamed to be almost mush. Forensic scientists must love us potty people. Easy to determine our last meal in case of death. LOL!
CoryGut
Age 71
Diagnosed with Lymphocytic Colitis Sept. 2010
On and off Entocort(Currently Off)
Age 71
Diagnosed with Lymphocytic Colitis Sept. 2010
On and off Entocort(Currently Off)
hi Cory,
I am pretty new to the site after a 2/11 LC diagnosis. TONS of good info here, even if not all of it applies directly to me.
In general, I have had better luck with corn based pastas, which even my Italian husband likes! Have had problems with brown rice, and we did not like the quinoa based pastas.
I have avoided eating gluten free snacks/carbs just because they are available. I feel that eating a more protein heavy diet is working for me. if I want a salty snack, I go for popcorn, nuts, potato chips. I have pretty much eliminated sweets, no big deal for me, but I know it is for others.
RE:salad, I do OK with "soft"greens, but not with greens that are"stalky."
I would strongly suggest tea instead of coffee until things settle down.
OH man:Mac and cheese, my family's major comfort food. Right now, fuhgeddaboudit.
if casein is an issue for you, yogurt no matter how healthy sounding, is no good. I had just taught myself to eat it a couple years ago, and now....NOPE.
I wish you luck. As I am finding out, there are no quick fixes, but there are many kindred spirits here.
I am pretty new to the site after a 2/11 LC diagnosis. TONS of good info here, even if not all of it applies directly to me.
In general, I have had better luck with corn based pastas, which even my Italian husband likes! Have had problems with brown rice, and we did not like the quinoa based pastas.
I have avoided eating gluten free snacks/carbs just because they are available. I feel that eating a more protein heavy diet is working for me. if I want a salty snack, I go for popcorn, nuts, potato chips. I have pretty much eliminated sweets, no big deal for me, but I know it is for others.
RE:salad, I do OK with "soft"greens, but not with greens that are"stalky."
I would strongly suggest tea instead of coffee until things settle down.
OH man:Mac and cheese, my family's major comfort food. Right now, fuhgeddaboudit.
if casein is an issue for you, yogurt no matter how healthy sounding, is no good. I had just taught myself to eat it a couple years ago, and now....NOPE.
I wish you luck. As I am finding out, there are no quick fixes, but there are many kindred spirits here.
Suze