Hello All,
I have recently been diagnosed with lymphocytic colitis. I have been gf for about five weeks and df for about three weeks, with inconsistent success. I also have lupus, sjogren's and raynaud's. Since September I have been struggling with adult-onset recalcitrant eczema. My guess is that many of you also have other autoimmune conditions in addition to your IBD. I am wondering if anyone has eczema.
I am pretty much incapacitated by the skin and bowel issues at this point. Both respond to prednisone, but as soon as I taper I end up worse off than I was before. I think my body hates me!
I am happy to have found this site and look forward to contributing to, learning from and - hopefully - healing along with - all of you!
Take care,
AnnieM
New and Struggling
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Annie!!Glad that you found us and hopefully we can help you on the road to better health.
It sounds like you have already made the choice to go gluten and dairy free.
Don't give up because it may take 6 months to a year before you see results from the diet.
Alot of us have found that we have other food intolerances so it is a great help to start keeping a food diary to help weed out other intolerances that you may suspect.
Some choose meds, meds & diet, or strictly the diet to bring remission.
I have provided GF/DF/SF recipes to help members along their journey under Dee's Kitchen.
Don't be afraid to ask anything on our board as we all have walked in your shoes.
Dee~~~
"What the heart gives away is never gone ... It is kept in the hearts of others."
we are glad you found us. Suspect soy next if you keep on keeping on.
Read as much as you can here and at www.enteroLab.com
DISCLAIMER: I am not a doctor and don't play one on TV.
LDN July 18, 2014
Joan
LDN July 18, 2014
Joan
Annie,
Welcome to our family. We all know what a struggle this is to find a way to live as normal a life as possible.
I have to agree about keeping a food diary that Dee suggested. You might not make the connection right away but it does help. On mine, I also kept the number of times to the bathroom and the consistency of the BM. With your other problems, you might note any changes in those from day to day.
Good luck,
Jan
Welcome to our family. We all know what a struggle this is to find a way to live as normal a life as possible.
I have to agree about keeping a food diary that Dee suggested. You might not make the connection right away but it does help. On mine, I also kept the number of times to the bathroom and the consistency of the BM. With your other problems, you might note any changes in those from day to day.
Good luck,
Jan
While you are proclaiming peace with your lips, be careful to have it even more fully in your heart. - Saint Francis of Assisi
Hi Annie,
Welcome to our internet family. I see you are already taking an active role in controlling your symptoms. As Dee said, it can take a while for the gut to heal sufficiently so that the symptoms can be controlled by diet alone, but dedication, (and detective work, to determine any other possible food intolerances), definitely pay off.
I'm curious - what inspired you to try the GF, DF diet? Most GI docs are not aware of the effectiveness of that treatment, (in fact, most will argue that diet has no connection with MC). If your doc recommended that, you have found a doctor who is a real winner. Kudos to him or her.
MC seems to be connected with various autoimmune issues, and whether or not it can actually cause such issues is unclear, but it can certainly make them worse, and we have often found that controlling the MC symptoms, as Jan hinted at, with her suggestions about the food diary that Dee suggested, can significantly reduce the seriousness of the other autoimmune issues.
We appreciate you joining us, and sharing your experiences with us, because being able to learn from each other's experiences, is what allows us to stay ahead of the crowd, when it comes to understanding how to live with, and control, the symptoms of MC and related issues.
Again, welcome aboard,
Tex (Wayne)
Welcome to our internet family. I see you are already taking an active role in controlling your symptoms. As Dee said, it can take a while for the gut to heal sufficiently so that the symptoms can be controlled by diet alone, but dedication, (and detective work, to determine any other possible food intolerances), definitely pay off.
I'm curious - what inspired you to try the GF, DF diet? Most GI docs are not aware of the effectiveness of that treatment, (in fact, most will argue that diet has no connection with MC). If your doc recommended that, you have found a doctor who is a real winner. Kudos to him or her.
MC seems to be connected with various autoimmune issues, and whether or not it can actually cause such issues is unclear, but it can certainly make them worse, and we have often found that controlling the MC symptoms, as Jan hinted at, with her suggestions about the food diary that Dee suggested, can significantly reduce the seriousness of the other autoimmune issues.
We appreciate you joining us, and sharing your experiences with us, because being able to learn from each other's experiences, is what allows us to stay ahead of the crowd, when it comes to understanding how to live with, and control, the symptoms of MC and related issues.
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.
Welcome, Annie!
You're right that many of us have other autoimmune issues. I had minor eczema as a kid, but I have not had a problem with that in years. Some members do have various forms of psoriasis and other skin issues, though.
Looking forward to "talking" with you more!
Courtney
You're right that many of us have other autoimmune issues. I had minor eczema as a kid, but I have not had a problem with that in years. Some members do have various forms of psoriasis and other skin issues, though.
Looking forward to "talking" with you more!
Courtney
Hypothyroid 05/05
LC/CC 07/08
Celiac 07/08
LC/CC 07/08
Celiac 07/08
Thank you for your kind and encouraging replies. To answer Tex’s question, I originally began the gf diet because my GP, who is an MD and practices Homeopathy and natural medicine, suspected Celiac’s disease. When the LC diagnosis was made I found your website and added the df diet. My GI doctor just shrugged when I turned down medication in order to try the diet for a time.
Dee and Jan, I appreciate the food diary suggestion. It is incredibly freeing to be able to openly acknowledge my bowel situation. For so many months, maybe years, it was something I never spoke about to anyone except my husband – certainly not something I would consider writing down and monitoring!
Dee, the recipes are wonderful – life-changing, actually – thank you!
Joan, I have been suspecting soy as a culprit – It is probably next on my list to go!
One more thought: My doctor has ordered the Comprehensive Digestive Stool Analysis from Genova Diagnostics. Has anyone had any experience with this test? It does not appear to test for food allergies:
[i]“This test evaluates digestion and absorption, bacterial balance and metabolism, yeast and immune status for patients with irritable bowel syndrome, indigestion, malabsorption, and other GI-related problems. Additionally, Genova offers a parasitology component with the CDSA test that evaluates for parasites using microscopic examination and EIA testing.”[/i]
Again, thank you for making me feel welcome.
Take care,
AnnieM
Dee and Jan, I appreciate the food diary suggestion. It is incredibly freeing to be able to openly acknowledge my bowel situation. For so many months, maybe years, it was something I never spoke about to anyone except my husband – certainly not something I would consider writing down and monitoring!
Dee, the recipes are wonderful – life-changing, actually – thank you!
Joan, I have been suspecting soy as a culprit – It is probably next on my list to go!
One more thought: My doctor has ordered the Comprehensive Digestive Stool Analysis from Genova Diagnostics. Has anyone had any experience with this test? It does not appear to test for food allergies:
[i]“This test evaluates digestion and absorption, bacterial balance and metabolism, yeast and immune status for patients with irritable bowel syndrome, indigestion, malabsorption, and other GI-related problems. Additionally, Genova offers a parasitology component with the CDSA test that evaluates for parasites using microscopic examination and EIA testing.”[/i]
Again, thank you for making me feel welcome.
Take care,
AnnieM
Annie;
I'm a bit late in welcoming you, but wanted to say "hi" and "welcome" anyway! I'm really impressed that you have an MD who is also naturopathic and who recommended the GF diet! Great find in that doc!
I just want to echo what others have said, especially to b patient with looking for results from diet. When I made the decision to go GF, others on this board recommended that I commit to 1 full year on the diet no matter what results (or none) that I saw. I saw my first "norman" (our slang for a normal stool) 3 months after beginning the diet, and was completely symptom free after about 6 months.
I, also, remember what relief I felt when there was someone I could speak with about my symptoms! You never again have to worry about sharing those secrets - you can tell us or ask us anything because we've all been there.
Once again, welcome, and I look forward to getting to know you better!
G'ma Mary
I'm a bit late in welcoming you, but wanted to say "hi" and "welcome" anyway! I'm really impressed that you have an MD who is also naturopathic and who recommended the GF diet! Great find in that doc!
I just want to echo what others have said, especially to b patient with looking for results from diet. When I made the decision to go GF, others on this board recommended that I commit to 1 full year on the diet no matter what results (or none) that I saw. I saw my first "norman" (our slang for a normal stool) 3 months after beginning the diet, and was completely symptom free after about 6 months.
I, also, remember what relief I felt when there was someone I could speak with about my symptoms! You never again have to worry about sharing those secrets - you can tell us or ask us anything because we've all been there.
Once again, welcome, and I look forward to getting to know you better!
G'ma Mary
Those who are not part of the solution, are part of the problem.
Welcome Annie!! 
You've come to the right place if you're looking for support and understanding for this disease.
There is plenty of information to read here and I'm sure you'll be busy learning all you can from our experiences. Don't be afraid to ask any questions - we're all in this together and we're here to help each other.
I agree that you should consider removing soy from your diet. Soy is one of the most commonly used ingredients and is in many foods - even water packed tuna! You might want to look here to find all the places to look for soy: http://www.perskyfarms.com/phpBB2/viewtopic.php?t=736
Good luck!
Gloria
You've come to the right place if you're looking for support and understanding for this disease.
There is plenty of information to read here and I'm sure you'll be busy learning all you can from our experiences. Don't be afraid to ask any questions - we're all in this together and we're here to help each other.
I agree that you should consider removing soy from your diet. Soy is one of the most commonly used ingredients and is in many foods - even water packed tuna! You might want to look here to find all the places to look for soy: http://www.perskyfarms.com/phpBB2/viewtopic.php?t=736
Good luck!
Gloria
You never know what you can do until you have to do it.
Annie,
Geneva Diagnostics used to be called Great Smokies Diagnostic laboratory, until they recently changed their name. I believe a few members ordered tests from them, (back before the name change), but I don't recall that anyone learned anything from the test results, that was useful for treating their MC. I'm not sure if any of those members post anymore, though. I believe that most of the tests they ordered were for the purpose of checking for parasites, as best I can recall.
Tex
Geneva Diagnostics used to be called Great Smokies Diagnostic laboratory, until they recently changed their name. I believe a few members ordered tests from them, (back before the name change), but I don't recall that anyone learned anything from the test results, that was useful for treating their MC. I'm not sure if any of those members post anymore, though. I believe that most of the tests they ordered were for the purpose of checking for parasites, as best I can recall.
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.
annie
Sorry you have been dx with lc...but here you have found a great family who will help you as best as they can..There is a wealth of information and knowledge here from all sufferers who have all been through bad times with mc...Everyone here is so understanding and caring and will lift you up when you are down..You can vent here when you are low and when you need to get advice we are all here for u...
Tex will also explain a lot about mc as i said in previous posts...tex is an einstein on the subject..
Sorry you have been dx with lc...but here you have found a great family who will help you as best as they can..There is a wealth of information and knowledge here from all sufferers who have all been through bad times with mc...Everyone here is so understanding and caring and will lift you up when you are down..You can vent here when you are low and when you need to get advice we are all here for u...
Tex will also explain a lot about mc as i said in previous posts...tex is an einstein on the subject..
Angy ;)
Welcome
Welcome ,AnnieM
javascript:ejavascript:emoticon(':bigbighug:')moticon('
')
It took me six months to get some relief on the GF diet. Now it is about a year and if I keep away from my trigger foods I'm pretty normal.
We wish you the very best.
javascript:ejavascript:emoticon(':bigbighug:')moticon('
')It took me six months to get some relief on the GF diet. Now it is about a year and if I keep away from my trigger foods I'm pretty normal.
We wish you the very best.
God bless us everyone!
Hi Annie M,
Welcome! Where did you find all the details to start your gf diet? I know that when I started, I had no idea about all the places that manage to "hide" a few molecules here and there. I'm just curious to find out if you and other newbies have found all the cites to help with going gf. Maybe you found everything here, but if not, just fire away with questions, and someone will answer. We are especially sensitive to even the most minute amounts of gluten, whether it represents contamination by other foods, or an actual food enhancer that food chemists have derived from some "natural" source such as wheat or soy, which I think are two very common sources. Wheat and soy ARE natural...I guess!!
A big source of antigens is injected meats, and it's very difficult to find a chicken dish when eating out that you can know for sure is gf, if you eat out.
I discovered a Kosher restaurant near our house, and as it turns out, due to their dietary laws, there's no chance of getting ANY dairy there due to there being NONE in the entire restaurant. That makes that antigen easy to avoid.
As far as gluten is concerned, it may just be the way this restaurant kitchen is set up, but they do everything that they do with the bread they serve in a completely different section of the kitchen from where they do the meats, rice, and vegetables. I have fallen in love with green rice, and sometimes what they call "cherry rice" (really cranberries). The lady who owns the place is from Iran and keeps Kosher as part of her Orthodox Judaism, so I'm never quite sure which things are strictly Persian dishes, but we can only have a few items, according to the owner. She happened to know which menu items would be safe, and is sensitive to this because her hubby has IgE (quick allergic reactions to some things that can be pretty serious). I think the Kosher meats would be safe as far as gluten and soy, and I know that they'll not have any dairy products. Anyway, this just gives you another alternative if you can't find any less expensive products that aren't injected or you just can't find out for sure.
There are more and more meats nowadays in regular stores which are safe.
One of the more common chicken companies is Buddy's, I think. Saunderson Farms is more regional, and seems to be more from Texas over to the more eastern states of the south, but I think that company is growing. Whole Foods has some chicken that has some other features you might like, and we like it. They also have organic in some meats, but it will be even higher priced. It's not necessary to get that if it's just the food sensitivities that you are interested in, and don't want to spend that much money. We just get their regular chicken.
If you have family around, watch out for contamination, particularly with jelly type foods, etc. that you share with your family. The spoons will usually be contaminated by kids if they stick the spoon back in after spreading jelly on toast, etc.
My main point in all this is that, for starters, make sure you are as absolutely "cleaned out" from any trace of gluten before moving up to another "allergen." Otherwise, it's too confusing figuring out what's causing what. If you are pretty sure the dairy is an issue as well, then I would just keep off of it until things get better. You can always retest it with dairy later, once you know you are better to see if it gets worse. If you do, try using the lactose free milk to retest. That way, you'll know it's the protein, casein, and not the lactose part you are reacting too. Until we heal, at least, many or most of us have a lactose reaction about 2 hours or so after ingesting any dairy product. As I also found I'm casein sensitive, I would have a reaction to lactose in 2 hours, and in my particular case, a casein 24 hours after ingestion of any dairy product. See what I mean...this can confuse you!
If you decide to try getting off the soy now, do it completely as well. If you notice improvement, you can always go back later, and try only one at a time back into your diet (NOT gluten...EVER!) to see if your original thinking was correct. After soy, try removing eggs.
Should you decide to do Dr. Fine's tests for "allergens," go ahead and remove any and all of the foods you are tested for then, immediately after setting your poop specimen on the door. For you, at this point anyway, that would only matter in the case of soy and eggs were you to do that today.
Just a few thoughts in the little time I had to write today.
Best wishes!
It's well worth the effort.
Check out my sensitivities to the right of this page.
I've been in remission for many years now, just leaving these things off, but I'm very strict, and never cheat!
Yours, Luce
Welcome! Where did you find all the details to start your gf diet? I know that when I started, I had no idea about all the places that manage to "hide" a few molecules here and there. I'm just curious to find out if you and other newbies have found all the cites to help with going gf. Maybe you found everything here, but if not, just fire away with questions, and someone will answer. We are especially sensitive to even the most minute amounts of gluten, whether it represents contamination by other foods, or an actual food enhancer that food chemists have derived from some "natural" source such as wheat or soy, which I think are two very common sources. Wheat and soy ARE natural...I guess!!
A big source of antigens is injected meats, and it's very difficult to find a chicken dish when eating out that you can know for sure is gf, if you eat out.
I discovered a Kosher restaurant near our house, and as it turns out, due to their dietary laws, there's no chance of getting ANY dairy there due to there being NONE in the entire restaurant. That makes that antigen easy to avoid.
As far as gluten is concerned, it may just be the way this restaurant kitchen is set up, but they do everything that they do with the bread they serve in a completely different section of the kitchen from where they do the meats, rice, and vegetables. I have fallen in love with green rice, and sometimes what they call "cherry rice" (really cranberries). The lady who owns the place is from Iran and keeps Kosher as part of her Orthodox Judaism, so I'm never quite sure which things are strictly Persian dishes, but we can only have a few items, according to the owner. She happened to know which menu items would be safe, and is sensitive to this because her hubby has IgE (quick allergic reactions to some things that can be pretty serious). I think the Kosher meats would be safe as far as gluten and soy, and I know that they'll not have any dairy products. Anyway, this just gives you another alternative if you can't find any less expensive products that aren't injected or you just can't find out for sure.
There are more and more meats nowadays in regular stores which are safe.
One of the more common chicken companies is Buddy's, I think. Saunderson Farms is more regional, and seems to be more from Texas over to the more eastern states of the south, but I think that company is growing. Whole Foods has some chicken that has some other features you might like, and we like it. They also have organic in some meats, but it will be even higher priced. It's not necessary to get that if it's just the food sensitivities that you are interested in, and don't want to spend that much money. We just get their regular chicken.
If you have family around, watch out for contamination, particularly with jelly type foods, etc. that you share with your family. The spoons will usually be contaminated by kids if they stick the spoon back in after spreading jelly on toast, etc.
My main point in all this is that, for starters, make sure you are as absolutely "cleaned out" from any trace of gluten before moving up to another "allergen." Otherwise, it's too confusing figuring out what's causing what. If you are pretty sure the dairy is an issue as well, then I would just keep off of it until things get better. You can always retest it with dairy later, once you know you are better to see if it gets worse. If you do, try using the lactose free milk to retest. That way, you'll know it's the protein, casein, and not the lactose part you are reacting too. Until we heal, at least, many or most of us have a lactose reaction about 2 hours or so after ingesting any dairy product. As I also found I'm casein sensitive, I would have a reaction to lactose in 2 hours, and in my particular case, a casein 24 hours after ingestion of any dairy product. See what I mean...this can confuse you!
If you decide to try getting off the soy now, do it completely as well. If you notice improvement, you can always go back later, and try only one at a time back into your diet (NOT gluten...EVER!) to see if your original thinking was correct. After soy, try removing eggs.
Should you decide to do Dr. Fine's tests for "allergens," go ahead and remove any and all of the foods you are tested for then, immediately after setting your poop specimen on the door. For you, at this point anyway, that would only matter in the case of soy and eggs were you to do that today.
Just a few thoughts in the little time I had to write today.
Best wishes!
It's well worth the effort.
Check out my sensitivities to the right of this page.
I've been in remission for many years now, just leaving these things off, but I'm very strict, and never cheat!
Yours, Luce