When I was diagnosed, I questioned my doc about the gluten connection to MC. His response was, "gluten is not likely the problem." And then he said..."Oh, you'll be fine in a month, the D will stop and you most likely won't have any problems again." Well, it didn't take a month, it took 5.
I'm almost afraid to say it and jinx myself, but I have been normal now for a couple weeks, I feel like my old self, my appetite is back, and good ole norman has been a very welcome guest.
I've been gluten free since August, but in the past week I have tested myself to see what would happen. Last week I ate a sandwich with regular bread, then I waited a few days and then ate a dinner roll. And so far nothing has happened, I have continued to stay normal. I am not taking any meds for the MC currently.
My enterolab gluten result was 9, normal is less than 10. My result was sitting right on the fence, so I guess that means I may or may not be senstive to gluten. I'm afraid to go completely back to eating gluten for fear that I may trigger the inflammation and be back to square one. But maybe it's possible to eat a bit of gluten as a treat once in a while?
Any thoughts?
Is there any truth to what my GI doc said?
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
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IDreamInColor
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great you are doing so well and I hope you will stay well now you are eating gluten again. I have no idea what will happen now you eat gluten again. Since, in general, the knowledge of GI's is very poor when it comes to MC, I think it is very important to gather your own information and design your personal path to remission.
What I personally don't understand, after being in remission for such a short time, you immediately run back to gluten. Personally I also don't understand the "gluten" treat every now and than. Why should you take the risk, since there is a whole world of gluten free replacements, from chocolate, to cake, to candy, to crisps and whatever to treat yourself.
Like I said before it is important to find and follow your own path in this MC jungle, we can find great knowledge here, terrific support and share our experiences. After that it is our individual choices in what we do with the things our GI's tell us and with the knowledge and experiences this great internet family. Just remember Gabes great expression "there is not right or wrong way, only your own way".
What I personally don't understand, after being in remission for such a short time, you immediately run back to gluten. Personally I also don't understand the "gluten" treat every now and than. Why should you take the risk, since there is a whole world of gluten free replacements, from chocolate, to cake, to candy, to crisps and whatever to treat yourself.
Like I said before it is important to find and follow your own path in this MC jungle, we can find great knowledge here, terrific support and share our experiences. After that it is our individual choices in what we do with the things our GI's tell us and with the knowledge and experiences this great internet family. Just remember Gabes great expression "there is not right or wrong way, only your own way".
"As the sense of identity shifts from the imaginary person to your real being as presence awareness, the life of suffering dissolves like mist before the rising sun"
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IDreamInColor
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Basically I'm just trying to figure out if gluten is indeed a problem for me. Since my enterolab results suggest that I do not have a gluten intolerance, however my score was at 9, and normal is below is 10, it's very close.What I personally don't understand, after being in remission for such a short time, you immediately run back to gluten. Personally I also don't understand the "gluten" treat every now and than. Why should you take the risk, since there is a whole world of gluten free replacements, from chocolate, to cake, to candy, to crisps and whatever to treat yourself.
I have to agree with Harma. Reading your posts for the past few months, it sounded as though your life was a living hell. We all felt so sorry for you, and we coaxed and pleaded with you to do what you needed to do with your diet, and as soon as you get the taste of remission, you can't wait to jump back into the fires of hell. 
What's wrong with this picture? It almost sounds as if you prefer to punish yourself, and live your life in misery. Seriously, do you have a problem with feeling good? If you want to do a gluten challenge, for Pete's sake, at least give your gut time to heal a little, so that when the D starts again, it won't last for 4 or 5 months before it stops.
Yes, it's possible that you might be experiencing a spontaneous remission, as your GI doc said, that sometimes happens with any IBD, but they are so rare among the members of this board, that the odds of your remission being due to chance, rather than the GF diet, are mighty slim. Enjoy your remission for a few months, and then if you want to punish yourself, try a proper gluten challenge, and see what happens. If you fall out of remission this soon, you are probably going to be much sicker, for a much longer period of time, than you would be if you try a challenge several months, or a year from now.
What's so great about gluten, outside of the fact that it makes most of us sick as a dog?
Tex
What's wrong with this picture? It almost sounds as if you prefer to punish yourself, and live your life in misery. Seriously, do you have a problem with feeling good? If you want to do a gluten challenge, for Pete's sake, at least give your gut time to heal a little, so that when the D starts again, it won't last for 4 or 5 months before it stops.Yes, it's possible that you might be experiencing a spontaneous remission, as your GI doc said, that sometimes happens with any IBD, but they are so rare among the members of this board, that the odds of your remission being due to chance, rather than the GF diet, are mighty slim. Enjoy your remission for a few months, and then if you want to punish yourself, try a proper gluten challenge, and see what happens. If you fall out of remission this soon, you are probably going to be much sicker, for a much longer period of time, than you would be if you try a challenge several months, or a year from now.
What's so great about gluten, outside of the fact that it makes most of us sick as a dog?
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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IDreamInColor
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Tex, that was pretty harsh, it kinda hurt my feelings.
No, I sure don't have a problem with feeling good. Many of you here have had this disease for years, I was just diagnosed this past August, I'm still in the learning stage to a disease that I don't understand.
I have asked so many questions here since I found this board, and you all have helped me very very much and I'm very appreciative of that, but the mechanism of this disease is over my head, most of your responses to my questions have gone over my head with too much medical term jargan, I must be stupid because terms like gliadin, and t-cells, and mast cells, and eating gluten my whole life and all of a sudden there is a problem, and how people who give up all their intolerances still have D, and then those that reach remission and continue on their diet and still get major flair ups, it just doesn't make sense to me, if gluten is a problem and we avoid it and still have flair ups, what's going on?. None of it makes any sense.
My enterolab also said I don't have an autoimmune response, so I don't understand what's happening when I eat gluten, if it's not an autoimmune reaction then what is it?!
If my enterolab showed a definate "yes" you are gluten intolerant then there would be no question. But with my score being a 9, well that leaves it all up in the air, and it's up to me to test it out and see how or if I react. How else will I know unless I test it? For all I know the MC is caused by the beta blockers that I have to take because of the graves disease screwing with my heart. Or maybe it's caused by the methimizole I have to take for the graves disease, I have no idea. I even quit taking the meds that controlled the agoraphobia, and panic disorder, thinking it was that that has caused it. That's the problem, I don't know what causing it and it's driving me crazy.
Everybody here seems to understand the mechanisms of this disease, I guess I'm just not very bright, I'm the stupid one.
you can't wait to jump back into the fires of hell.
It almost sounds as if you prefer to punish yourself, and live your life in misery.
Seriously, do you have a problem with feeling good?
No, I sure don't have a problem with feeling good. Many of you here have had this disease for years, I was just diagnosed this past August, I'm still in the learning stage to a disease that I don't understand.
I have asked so many questions here since I found this board, and you all have helped me very very much and I'm very appreciative of that, but the mechanism of this disease is over my head, most of your responses to my questions have gone over my head with too much medical term jargan, I must be stupid because terms like gliadin, and t-cells, and mast cells, and eating gluten my whole life and all of a sudden there is a problem, and how people who give up all their intolerances still have D, and then those that reach remission and continue on their diet and still get major flair ups, it just doesn't make sense to me, if gluten is a problem and we avoid it and still have flair ups, what's going on?. None of it makes any sense.
My enterolab also said I don't have an autoimmune response, so I don't understand what's happening when I eat gluten, if it's not an autoimmune reaction then what is it?!
If my enterolab showed a definate "yes" you are gluten intolerant then there would be no question. But with my score being a 9, well that leaves it all up in the air, and it's up to me to test it out and see how or if I react. How else will I know unless I test it? For all I know the MC is caused by the beta blockers that I have to take because of the graves disease screwing with my heart. Or maybe it's caused by the methimizole I have to take for the graves disease, I have no idea. I even quit taking the meds that controlled the agoraphobia, and panic disorder, thinking it was that that has caused it. That's the problem, I don't know what causing it and it's driving me crazy.
Everybody here seems to understand the mechanisms of this disease, I guess I'm just not very bright, I'm the stupid one.
Dream,
My Enterolab scores weren't very high either, yet I am still reactive. I attribute it to a lectin problem related to my mast cells, but that's just a guess. If you can tolerate gluten that's great news to shout from the rooftops. I think what surprises us though about your gluten challenge is that once we reach remission most of us are terrified of relapse and don't want to rock the boat and are afraid to eat gluten.
I hope your remission continues.
Take care,
Mary Beth
My Enterolab scores weren't very high either, yet I am still reactive. I attribute it to a lectin problem related to my mast cells, but that's just a guess. If you can tolerate gluten that's great news to shout from the rooftops. I think what surprises us though about your gluten challenge is that once we reach remission most of us are terrified of relapse and don't want to rock the boat and are afraid to eat gluten.
I hope your remission continues.
Take care,
Mary Beth
"If you believe it will work out, you'll see opportunities. If you believe it won't you will see obstacles." - Dr. Wayne Dyer
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Joefnh
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Hi IDream, when I first started attending this board it did feel like trying to drink from a fire hose. The number of new terms was overwhelming. What I ended up doing was writing down a term or so every few days and then either ask questions here or go consult with Dr. Google and just educate myself on each topic. I am certainly still learning each day but am starting to understand the issues better.
I have found that this has really helped me with my doctor. I can understand what he is saying and I can ask intelligent questions. Learning is a slow process but one that is well worth the time.
Actually when I first started this I could not go out and was off of work, so I found that the research gave me something to do and it actually helped take my mind off how I was feeling.
Hang in there IDream and best wishes
--Joe
I have found that this has really helped me with my doctor. I can understand what he is saying and I can ask intelligent questions. Learning is a slow process but one that is well worth the time.
Actually when I first started this I could not go out and was off of work, so I found that the research gave me something to do and it actually helped take my mind off how I was feeling.
Hang in there IDream and best wishes
--Joe
Joe
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irisheyes13
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- Location: Pittsburgh, PA, United States
What a perfect analogy!joefnh wrote:Hi IDream, when I first started attending this board it did feel like trying to drink from a fire hose.
It is a lot to wrap your brain around and can be very confusing at times- not only all the medical terminology but the nuances and unknowns about MC. How one person may react to a form of treatment or ingest a particular food varies so much from person to person.
Please don't feel like you are the only one who struggles with understanding this disease. I struggle with it every day and am afraid to take my next bite of food.
I have Grave's Disease as well and although I was taken off the beta blocker and methimizole for 8 months due to being overmedicated, it appears that I now have to start taking both again. I certainly hope these drugs aren't a cause for or making this co-disease worse.
It's good to hear you are feeling well again.
IDreamInColor,
Well, apparently I owe you an apology, because I received 3 PMs from concerned members, wondering if I'm "OK".
So, I'm sorry for being so undiplomatic.
Apparently I misinterpreted many of your earlier posts, when you described how sick you were. I thought that you were really ill. As Mary Beth correctly pointed out, most of us who are so very sick for a long time, do not take gluten lightly, and we are so glad to be out from under it's spell, that we wouldn't consider doing anything to put our health back in jeopardy, for at least a reasonable amount of time. After all, there is always the risk that the next time we "induce" a flare, it may not be so easy to break out of it. That happens with meds, and it can also happen with treatment by diet.
Also, remember that we are naturally attracted to the foods to which we are sensitive, and the fact that you are so eager to try it again, is pretty good evidence in itself, that it is highly likely that you are sensitive to it. If you are going to do a meaningful gluten challenge, though, be sure that you eat enough to do the job right - at least the equivalent of a slice or two of bread, every day, for a month or so, if necessary. Otherwise, if you eat a little here and there, on an occasional basis, you may not get sick enough to convince yourself that you are really sensitive to it, if you have a relatively high tolerance threshold, and your gut has done any significant amount of healing. Remember, it took me 6 weeks to begin reacting to an oat challenge, several years ago, and then it took me 6 weeks to get over it.
You might be interested in this article about people who doubt that they are gluten-sensitive, and who want to do a gluten challenge. As the author says:
Again, I apologize, because I really don't want to see you feeling hurt - I want to see you in a state of long-term remission, and feeling great.
Tex
Well, apparently I owe you an apology, because I received 3 PMs from concerned members, wondering if I'm "OK".
So, I'm sorry for being so undiplomatic.
Apparently I misinterpreted many of your earlier posts, when you described how sick you were. I thought that you were really ill. As Mary Beth correctly pointed out, most of us who are so very sick for a long time, do not take gluten lightly, and we are so glad to be out from under it's spell, that we wouldn't consider doing anything to put our health back in jeopardy, for at least a reasonable amount of time. After all, there is always the risk that the next time we "induce" a flare, it may not be so easy to break out of it. That happens with meds, and it can also happen with treatment by diet.
Also, remember that we are naturally attracted to the foods to which we are sensitive, and the fact that you are so eager to try it again, is pretty good evidence in itself, that it is highly likely that you are sensitive to it. If you are going to do a meaningful gluten challenge, though, be sure that you eat enough to do the job right - at least the equivalent of a slice or two of bread, every day, for a month or so, if necessary. Otherwise, if you eat a little here and there, on an occasional basis, you may not get sick enough to convince yourself that you are really sensitive to it, if you have a relatively high tolerance threshold, and your gut has done any significant amount of healing. Remember, it took me 6 weeks to begin reacting to an oat challenge, several years ago, and then it took me 6 weeks to get over it.
You might be interested in this article about people who doubt that they are gluten-sensitive, and who want to do a gluten challenge. As the author says:
http://www.celiac.com/articles/979/1/Ch ... Page1.htmlThe further I go down this rabbit hole, the more I realize that grains are a good food for ruminants - not people.
Again, I apologize, because I really don't want to see you feeling hurt - I want to see you in a state of long-term remission, and feeling great.
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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TooManyHats
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I think it's wonderful that a bit of gluten can sneak by and you're not doubled over with pain and running back and forth from the bathroom. Do you know what I would do with that information? I would save my chances of ingesting gluten for times that I may want to go out for dinner, order (to the best of my ability) a gluten free meal, and not worry about cross contamination! To me, that would be worth it's weight in GOLD! I just wouldn't be tempting fate on a daily basis.
That's what I would do . This is just my opinion. Take what you'd like, and leave the rest.
That's what I would do . This is just my opinion. Take what you'd like, and leave the rest.
Arlene
Progress, not perfection.
Progress, not perfection.
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MBombardier
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Excellent advice, Arlene. 
Also, as one new to the whole gluten-free lifestyle, I think we sometimes just want to be "normal" again. On Wednesday a friend made me the most amazing GF chocolate cake with coconut frosting. It was moist, with great texture, and tasted wonderful. It looked, smelled, tasted, and acted just like a regular cake. For one dizzying moment I was overcome with a ravenous desire just to have everything back to normal in my life, and intense anger that it won't ever be "normal" again. Then I came to my senses, and was so grateful that I could eat a slice of cake that satisfied all my senses without making me feel like I was "making do."
So I can totally sympathize with wanting to eat gluten if it didn't affect me so badly. And I have at least one GF friend who consumes gluten occasionally who will be glad that I will no longer act like an ex-smoker (self-righteous) around her. However, if I saw her start to ingest gluten regularly, I would say something because I know how much better I feel when I don't eat gluten, and how much better she feels when she doesn't eat gluten. And I know that's the motivation of people on this forum who encourage going--and staying--gluten-free.
Also, as one new to the whole gluten-free lifestyle, I think we sometimes just want to be "normal" again. On Wednesday a friend made me the most amazing GF chocolate cake with coconut frosting. It was moist, with great texture, and tasted wonderful. It looked, smelled, tasted, and acted just like a regular cake. For one dizzying moment I was overcome with a ravenous desire just to have everything back to normal in my life, and intense anger that it won't ever be "normal" again. Then I came to my senses, and was so grateful that I could eat a slice of cake that satisfied all my senses without making me feel like I was "making do."
So I can totally sympathize with wanting to eat gluten if it didn't affect me so badly. And I have at least one GF friend who consumes gluten occasionally who will be glad that I will no longer act like an ex-smoker (self-righteous) around her. However, if I saw her start to ingest gluten regularly, I would say something because I know how much better I feel when I don't eat gluten, and how much better she feels when she doesn't eat gluten. And I know that's the motivation of people on this forum who encourage going--and staying--gluten-free.
Marliss Bombardier
Dum spiro, spero -- While I breathe, I hope
Psoriasis - the dark ages
Hashimoto's Thyroiditis - Dec 2001
Collagenous Colitis - Sept 2010
Granuloma Annulare - June 2011
Dum spiro, spero -- While I breathe, I hope
Psoriasis - the dark ages
Hashimoto's Thyroiditis - Dec 2001
Collagenous Colitis - Sept 2010
Granuloma Annulare - June 2011