Visit the Microscopic Colitis Foundation Website
Robbie
a few hints when you are giving up gluten (you will be amazed the places that gluten hides)
- food items that have 'caramel colouring' on the ingredient listing - this will most likely be wheat based (things like balsomic vinegar, marinades and sauces etc)
- some dried herb mixes and flavourings
- lipsticks, lipglosses
- ice cream
- products with glucose as a listed ingredient unless it is derived from corn starch
It took me about 4 - 6 weeks to remove everything from my pantry/freezer that did have gluten.
There is a listing on this site http://www.perskyfarms.com/phpBB2/viewtopic.php?t=733 that has all the names of ingredients that will have gluten ie dextrose
Another Newbie
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
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Gabes-Apg
- Emperor Penguin
- Posts: 8367
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Robbie
not sure what happened above (insert homer simpson DOH!)
i wrote a post about the amazing places that Gluten can hide went back to do a quick edit and it disappeared
anyway link to list of ingredients http://www.perskyfarms.com/phpBB2/viewtopic.php?t=733
be careful with things like
- lipsticks/lip gloss etc
- glucose
- food items with ingredient 'caramel colouring'
- some dried herb /flavouring mixes have wheat/gluten in them
- ice cream
It took me 4 weeks to rid my pantry, fridge and freezer of items with hidden gluten
i carried the list of ingredients in my purse while i was shopping until i learnt what my trusted products were
Good luck!
sometimes life with MC is like an episode of the amazing race!!!
not sure what happened above (insert homer simpson DOH!)
i wrote a post about the amazing places that Gluten can hide went back to do a quick edit and it disappeared
anyway link to list of ingredients http://www.perskyfarms.com/phpBB2/viewtopic.php?t=733
be careful with things like
- lipsticks/lip gloss etc
- glucose
- food items with ingredient 'caramel colouring'
- some dried herb /flavouring mixes have wheat/gluten in them
- ice cream
It took me 4 weeks to rid my pantry, fridge and freezer of items with hidden gluten
i carried the list of ingredients in my purse while i was shopping until i learnt what my trusted products were
Good luck!
sometimes life with MC is like an episode of the amazing race!!!
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
I have looked at a few gluten free crackers at our local health food store but did not buy any because of the very high prices. I don't recall what the prices were, but I do remember walking by the $9.50 bread display. I don't know if that's the norm because we have been without a health food store till recently. It sure seems high. When I get more energy I will do some label reading at Walmart and Safeway - maybe they have some lower priced products that will work. If I find something I like I can probably order it online, too.
I am very happy with my new local doctor and I think I can work with her for now (along with my other doctor in Washington - I can do phone appointments with him and he will do just about anything for me). My biggest concern is that she's not happy here and might not be around for long. She is the closest thing to a GI doc in this town, too. My mother sees someone over an hour away who is supposed to be the best GI doc around and he let her suffer with gall bladder symptoms for six years. She had a benign gastrointestinal stromal tumor removed ten years ago, along with half of her stomach. By let her I mean he never even hinted at possible gall bladder problems, and certainly never tested her for it. He always blamed all of her problems on the surgery done by another doctor at the university hospital (said it was done the wrong way). She ended up going even further away to get help (finally!). I truly believe I could go out of town and not get any better care than I am now. Besides, I have you guys. What a blessing!
Tex, this wonderful site comes up in the search engines just fine. I just didn't make the connection....
Robbie
I am very happy with my new local doctor and I think I can work with her for now (along with my other doctor in Washington - I can do phone appointments with him and he will do just about anything for me). My biggest concern is that she's not happy here and might not be around for long. She is the closest thing to a GI doc in this town, too. My mother sees someone over an hour away who is supposed to be the best GI doc around and he let her suffer with gall bladder symptoms for six years. She had a benign gastrointestinal stromal tumor removed ten years ago, along with half of her stomach. By let her I mean he never even hinted at possible gall bladder problems, and certainly never tested her for it. He always blamed all of her problems on the surgery done by another doctor at the university hospital (said it was done the wrong way). She ended up going even further away to get help (finally!). I truly believe I could go out of town and not get any better care than I am now. Besides, I have you guys. What a blessing!
Tex, this wonderful site comes up in the search engines just fine. I just didn't make the connection....
Robbie
GF cracker prices were somewhere in the slightly over $3 range, the last time I looked, in my neck of the woods.
Walmart and many of the major grocery chains do sometimes have GF sections. In other stores, you have to track down the items, individually, mixed in with all the other products. Sometimes, you can save a lot of time by asking if they have such an area, dedicated to GF products.
I've never been able to understand why so many doctors overlook issues that seem so obvious to me.
It almost seems as if they sometimes intentionally ignore the problems.
Tex
Walmart and many of the major grocery chains do sometimes have GF sections. In other stores, you have to track down the items, individually, mixed in with all the other products. Sometimes, you can save a lot of time by asking if they have such an area, dedicated to GF products.
I've never been able to understand why so many doctors overlook issues that seem so obvious to me.
It almost seems as if they sometimes intentionally ignore the problems.Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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Linda in BC
- Rockhopper Penguin
- Posts: 801
- Joined: Mon Apr 19, 2010 9:39 am
- Location: Creston British Columbia
Welcome Robbie! You have come to the right place, for sure. 
Sorry to hear about all of your suffering, and I sure hope you find some answers here. I wholeheartedly agree with Tex that it is up to us to manage this disease ourselves, especaily if we do not live near a major center (my nearest GI doc would be about 350 miles away.) My general practitioner is great, though and reads what I give him and prescribes what I ask for, because he knows I am more informed about MC than he is. He actually admittted to me that he had never heard of Lymphocitic Colitis, only Collogeneous ( he is from Northern Ireland).
Wishing you well in your search for health,
Linda
Sorry to hear about all of your suffering, and I sure hope you find some answers here. I wholeheartedly agree with Tex that it is up to us to manage this disease ourselves, especaily if we do not live near a major center (my nearest GI doc would be about 350 miles away.) My general practitioner is great, though and reads what I give him and prescribes what I ask for, because he knows I am more informed about MC than he is. He actually admittted to me that he had never heard of Lymphocitic Colitis, only Collogeneous ( he is from Northern Ireland). Wishing you well in your search for health,
Linda
"Be kind whenever possible. It is always possible."
The 13th Dali Lama
The 13th Dali Lama
Well, I just got done doing some "managment" of my condition. I called the pathologist and spoke with him about mast cell staining. I just wish I could remember everything that was said, but the fog is pretty thick today.
He was super nice and helpful. I believe he said there was nothing to indicate staining was needed, but then said he'd have to order something to do it because they don't generally do that. When I said Dr. Garcia was treating me for LC he said "I'd go for that, if you have watery D", and then something about my situation not being specific to any one thing. I told him that the scope doc said "Well, they don't really know what you have" (or something close to that) he said that's right - you don't fit into anything. He said with LC generally nothing is seen with the scope. I said he did see one little area and he said that's not enough - that it could still be LC.
He did say that there was no need to count the lymphocytes because of where they were located, whatever that means. Something about something like if they were outside instead of in between.....or in between instead of something. Sorry I can't say for sure. And I forgot to ask about the other one - the one that starts with e. I can ask my doctor about all of this when she gets back from vacation next week and maybe I will have my act together by then.
I am curious now about "watery" D. When I was in a full blown flare, before I stopped the dairy, I had it. I still have it sometimes now, but not all the time. If I don't have "only" watery D (WD?) does that mean LC is ruled out?
He was super nice and helpful. I believe he said there was nothing to indicate staining was needed, but then said he'd have to order something to do it because they don't generally do that. When I said Dr. Garcia was treating me for LC he said "I'd go for that, if you have watery D", and then something about my situation not being specific to any one thing. I told him that the scope doc said "Well, they don't really know what you have" (or something close to that) he said that's right - you don't fit into anything. He said with LC generally nothing is seen with the scope. I said he did see one little area and he said that's not enough - that it could still be LC.
He did say that there was no need to count the lymphocytes because of where they were located, whatever that means. Something about something like if they were outside instead of in between.....or in between instead of something. Sorry I can't say for sure. And I forgot to ask about the other one - the one that starts with e. I can ask my doctor about all of this when she gets back from vacation next week and maybe I will have my act together by then.
I am curious now about "watery" D. When I was in a full blown flare, before I stopped the dairy, I had it. I still have it sometimes now, but not all the time. If I don't have "only" watery D (WD?) does that mean LC is ruled out?
Robbie
Definitely not. LC can present with either osmotic or secretory D, (secretory D is watery D), it can present with alternating D and C, or for a few individuals, it can present as constipation only. I see no reason why mastocytic enterocolitis, or mast cell issues cannot result in secretory D, also.Robbie wrote:If I don't have "only" watery D (WD?) does that mean LC is ruled out?
Mast cells require a special stain to make them visible under the microscope, (that's why pathologists don't normally even notice them in a biopsy sample), so the item he talked about ordering was probably a tryptase immunohistochemistry stain.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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Linda in BC
- Rockhopper Penguin
- Posts: 801
- Joined: Mon Apr 19, 2010 9:39 am
- Location: Creston British Columbia
Dear Robbie
Just got to reading these posts. So here is a late welcome.
My goodness you have been through a lifetime GI problems. As you can see, this is the best place for information, debate and support. I recommend sticking to a long term 100% GF, DF and SF diet. Do not expect instant results. But you should see gradual improvement over a few months.
All the best, ant
Just got to reading these posts. So here is a late welcome.
My goodness you have been through a lifetime GI problems. As you can see, this is the best place for information, debate and support. I recommend sticking to a long term 100% GF, DF and SF diet. Do not expect instant results. But you should see gradual improvement over a few months.
All the best, ant
Hi Robbie,
That sounds like my experience. Going off dairy instantly resolved the D.
Going off gluten initially didn't have any obvious effects, until I noticed that various other problems were resolving such as my asthma going away, and my swelling hands etc happening less, and my head feeling clearer. I was able to stop my asthma med completely, and stopping a steroid is always a good thing.
Lyn
That sounds like my experience. Going off dairy instantly resolved the D.
Going off gluten initially didn't have any obvious effects, until I noticed that various other problems were resolving such as my asthma going away, and my swelling hands etc happening less, and my head feeling clearer. I was able to stop my asthma med completely, and stopping a steroid is always a good thing.
Lyn