Hello everyone,
I have been away from the Board for a while--having enjoyed a 15 month remission and starting to feel confident in my GF/DF/SF/YF/EF diet. I have CC and it certainly is challenging and right now for me discouraging.
I started the GF?DF diet in Jan. 2009 and became consistently soy and yeast free in June 2009, after Enterolab testing. Back then, after months of D, I started Entocort in March 2009 and was fully off it by end of June 2009. I flared again, sort of mildly in Feb-Mar 2010, and it resolved and from April 2010 until Aug. 2011 I was free of symptoms. Then the flare started, and I've been sort of a mess ever since.
I don't know what caused the flare in Aug 2011. I was strictly GF, etc. and I never eat out, prepare my own fresh food, etc. I was eating mostly paleo except for Edwards rice crackers, and buckwheat cereal but no other grains. I'd stopped using gluten free flours for pancakes, etc. in 2010 as I was concerned about cross contamination. The flare did not get better over the course of a month and I decided in early Sept 2011 to go back on Entocort. It worked as it had in the past--I tapered off by early Dec. Then, in Dec. I had a freak car accident that fractured my sternum (seatbelt injury), and a week later I came down with a really bad upper respiratory infection and, unfortunately, because it was so severe (high fever, throat almost completely closed for days), I let the doc talk me into an antibiotic (they were concerned about the sternum and pneumonia--they go together, apparently). By Christmas, my bm's were deteriorating. Before long, I was going 20 times a day. I should have given myself a chance to work out of that, but I was really beat from the virus and still coping with a fractured sternum and I turned back to Entocort. And, as many of you have indicated, as I have learned from reading through various posts, it's not working very well in this re-start, after just going off. This is my 4th week on the drug, and although I only have 1 bm now, it's far from Norman, and not where I want to be at all. Entocort is just not as effective as it was in my two experiences of using it in the past.
My GI thinks I may have something else going on, due to the antibiotic, and I'm waiting for the results on stool tests this week. I feel sure there is nothing else and this is just stubborn CC with Entocort no longer doing the job it used to do.
I redid my Enterolab tests last fall and was still in reactive territory for gluten (28 units) and dairy (10 units), although egg and soy were normal. I'm being exposed to gluten somehow and I don't know where it is, except maybe the rice crackers and buckwheat cereal, which I've now given up. I also did the panel of 11 antigenic foods and came up negative on all of them. I also did a panel of tests called LRA (lymphocyte reactive assay) tests, and I came up with several more foods to eliminate (almond, orange, green grape, grapeseed oil) and reconfirmed an unbelievably strong dairy reaction (casein, lactoglobulin and whey). Which makes me wonder why the LRA test came up with almond when the Enterolab didn't. Who knows. I was eating almond butter like crazy and I've now stopped it.
So, I don't know whether to wean off the Entocort now and just wait for the diet to work, or how to proceed. I spent a lot of money on tests recently, and now realize I should have done the MRT test. The LRA test included over 200 foods and some preservatives and environmental contaminants, so it covered a lot, but I realize all these tests look at different forms of immune response.
I'm not sure what to do now, as I'm still in a bit of a shock that the Entocort isn't doing the job I need it to do. I've been reading a lot of the histamine threads--I've always had seasonal allergies, but nothing too awful and I never needed allergy shots. I've never had rashes and only a very few mouth sores over the years. I have a feeling that histamine is not a big player for me, but I do now have ongoing nasal congestion, so I'm considering a low histamine diet for a month or so to see if it helps.
I will really appreciate any thoughts you all might have.
BTW, my GI doctor is a very nice young woman who is dairy free. When I saw her last week, I nearly dropped on the floor, because she said, commenting on my GF diet, that "we now know that MC is connected to gluten intolerance."
Thanks, Susan
Reconnecting and seeking advice
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi Susan,
I'm sorry to learn that due to unfortunate circumstances, your symptoms are back. Your GI specialist sounds like a keeper - good for her.
I find it very interesting that you retested at EnteroLab, and tested positive to gluten and casein The same thing happened to me. Of course, I was intentionally eating dairy products, in an effort to verify whether or not I actually have a casein-sensitivity, because for at least the past 8 years, I've always been asymptomatic, (except for possible osteoarthritis).
I have a hunch that gluten cross-contamination is so widespread in the world today, and some of us are so sensitive to it, that our exposure may never be low enough for our immune system to completely settle down and stop producing antibodies, (unless we move to some remote desert island, where gluten does not exist). IOW, we can avoid it well enough to remain symptom free, (if we are very careful), but we may still be ingesting enough in trace amounts, that our immune system continues to produce a certain level of antibodies, and this residual level keeps us vulnerable to relapses at any time, if something happens to push our immune response over the threshold. For many of us, even stress can do that.
I tried to look up your egg and soy results on your previous test, but I see that they're not listed in our collection. Were those earlier results positive or negative?
Regarding mast cells, there is some evidence to suggest that they can cause digestive system issues for someone with MC, in the absence of classic allergy symptoms. It might be worth a try to take an antihistamine for a day or two, to see if it makes any difference. Who knows - it might allow the Entocort to begin working, again.
Tex
I'm sorry to learn that due to unfortunate circumstances, your symptoms are back. Your GI specialist sounds like a keeper - good for her.
I tend to agree with you, because if you had C. diff, for example, your BMs would be a much bigger problem. Unless you have blood in the stool, and you're sure that it's not from hemorrhoids, there's really no reason to suspect anything other than MC, so soon after an initial diagnosis.Susan wrote:My GI thinks I may have something else going on, due to the antibiotic, and I'm waiting for the results on stool tests this week. I feel sure there is nothing else and this is just stubborn CC with Entocort no longer doing the job it used to do.
I find it very interesting that you retested at EnteroLab, and tested positive to gluten and casein The same thing happened to me. Of course, I was intentionally eating dairy products, in an effort to verify whether or not I actually have a casein-sensitivity, because for at least the past 8 years, I've always been asymptomatic, (except for possible osteoarthritis).
I have a hunch that gluten cross-contamination is so widespread in the world today, and some of us are so sensitive to it, that our exposure may never be low enough for our immune system to completely settle down and stop producing antibodies, (unless we move to some remote desert island, where gluten does not exist). IOW, we can avoid it well enough to remain symptom free, (if we are very careful), but we may still be ingesting enough in trace amounts, that our immune system continues to produce a certain level of antibodies, and this residual level keeps us vulnerable to relapses at any time, if something happens to push our immune response over the threshold. For many of us, even stress can do that.
I tried to look up your egg and soy results on your previous test, but I see that they're not listed in our collection. Were those earlier results positive or negative?
Regarding mast cells, there is some evidence to suggest that they can cause digestive system issues for someone with MC, in the absence of classic allergy symptoms. It might be worth a try to take an antihistamine for a day or two, to see if it makes any difference. Who knows - it might allow the Entocort to begin working, again.
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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Susan,
1. Ugh!
2. Welcome home!
Sorry to hear you're having such an awful time right now! There have been several discussions lately about histamine issues--it might be worth trying some benadryl and seeing if it helps. Hope things turn around quickly!
1. Ugh!
2. Welcome home!
Sorry to hear you're having such an awful time right now! There have been several discussions lately about histamine issues--it might be worth trying some benadryl and seeing if it helps. Hope things turn around quickly!
Cynthia
"Can we fix it? YES WE CAN!" -Bob the Builder
"Can we fix it? YES WE CAN!" -Bob the Builder
Tex,
My June 2009 Enterolab results:
Anti gliadin 222 (gasp) units
Anti casein 27 units
Anti ovalbumin 15 units
Anti soy 25 units
Anti yeast 16 units
Anti tissue transglutaminase 79 units
Fecal fat score Less than 300 units
HLA-DQ 3, 3 (Subtype 7. 7)
October 2011 results:
Anti gliadin 28 units
Anti casein 10 units
Anti soy 9 units
Anti ovalbumin 9 units
Anti yeast 2 units
December 2011 results:
11 antigenic foods mean value 4 units
no significant reaction to any food
I know the gluten is really insidious, especially if you're really reactive, which apparently I am. Interestingly, the flare started after a week in NY cooking for myself in my mother in law's kitchen where the gluten has been flying for years.
I tried to wash everything and keep my food really separate, but she's really got the accumulated gluten dusting you have spoken of.
I'm going to try benadryl tonight.
Cynthia,
Yeah, double ugh. It was a bad holiday time around here. Perhaps the benadryl will help.
Thanks for your help
My June 2009 Enterolab results:
Anti gliadin 222 (gasp) units
Anti casein 27 units
Anti ovalbumin 15 units
Anti soy 25 units
Anti yeast 16 units
Anti tissue transglutaminase 79 units
Fecal fat score Less than 300 units
HLA-DQ 3, 3 (Subtype 7. 7)
October 2011 results:
Anti gliadin 28 units
Anti casein 10 units
Anti soy 9 units
Anti ovalbumin 9 units
Anti yeast 2 units
December 2011 results:
11 antigenic foods mean value 4 units
no significant reaction to any food
I know the gluten is really insidious, especially if you're really reactive, which apparently I am. Interestingly, the flare started after a week in NY cooking for myself in my mother in law's kitchen where the gluten has been flying for years.
I tried to wash everything and keep my food really separate, but she's really got the accumulated gluten dusting you have spoken of.
I'm going to try benadryl tonight.
Cynthia,
Yeah, double ugh. It was a bad holiday time around here. Perhaps the benadryl will help.
Thanks for your help
That pretty well matches my experience. I'm beginning to suspect that cooking a truly gluten-free meal in a kitchen where wheat flour is regularly used, amounts to "mission impossible". Low-gluten is the best we can hope for in that situation.Susan wrote:Interestingly, the flare started after a week in NY cooking for myself in my mother in law's kitchen where the gluten has been flying for years.
I tried to wash everything and keep my food really separate, but she's really got the accumulated gluten dusting you have spoken of.
Thanks, I'll add your results to our list.
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.
Susan,
FWIW, my experience with Entocort is the same as yours. Since I've gone off of it and back on it several times, it no longer gives me Norman or anything close to it. It does reduce the urgency somewhat and that's a big help.
After reading about your positive retest for gluten and Tex's positive retest, I'm beginning to think that the Zonulin pill may be the only way to ensure that we aren't glutened. Who knows when it will be available and what side effects it will have?
Gloria
FWIW, my experience with Entocort is the same as yours. Since I've gone off of it and back on it several times, it no longer gives me Norman or anything close to it. It does reduce the urgency somewhat and that's a big help.
After reading about your positive retest for gluten and Tex's positive retest, I'm beginning to think that the Zonulin pill may be the only way to ensure that we aren't glutened. Who knows when it will be available and what side effects it will have?
Gloria
You never know what you can do until you have to do it.
Lesley,
I've changed my travel habits a lot--used to go lots of places for work and visiting friends and family, but i think twice now.
My DH and I have talked about renting an apt. in some exotic place we'd like to visit, and then cook for ourselves, and I think that might work eventually. I think I just have to be more careful than I thought when using someone else's kitchen.
Gloria,
Yes, the gluten was a big surprise and all I can figure is the grains I was still eating. I actually find Paleo really difficult to do in a flare because fruit is out, I find--even cooked fruit-- and very few vegetables can really be cooked well enough to reduce the fiber a lot. I find it hard to get enough food.
Are you still doing better with the benadryl?
I've changed my travel habits a lot--used to go lots of places for work and visiting friends and family, but i think twice now.
My DH and I have talked about renting an apt. in some exotic place we'd like to visit, and then cook for ourselves, and I think that might work eventually. I think I just have to be more careful than I thought when using someone else's kitchen.
Gloria,
Yes, the gluten was a big surprise and all I can figure is the grains I was still eating. I actually find Paleo really difficult to do in a flare because fruit is out, I find--even cooked fruit-- and very few vegetables can really be cooked well enough to reduce the fiber a lot. I find it hard to get enough food.
Are you still doing better with the benadryl?
These are the last two press releases on the Alba Therapeutics website:Gloria wrote:I'm beginning to think that the Zonulin pill may be the only way to ensure that we aren't glutened. Who knows when it will be available and what side effects it will have?
http://www.albatherapeutics.com/Newsand ... fault.aspx2011
February 09, 2011 - Cephalon, Inc. (Nasdaq: CEPH) and Alba Therapeutics Corporation, today announced that the companies have signed an agreement providing Cephalon with an option to purchase all of Alba’s assets relating to larazotide acetate, a tight junction modulator, progressing toward a Phase IIb clinical trial for the treatment of celiac disease.
2009
March 17, 2009 - Alba Therapeutics Corporation announced today it will initiate further clinical studies for patients diagnosed with celiac disease with their lead compound, larazotide acetate.
Obviously, such a paucity of press releases, (only 2 in 2 years), for such a "hot" topic, is not a good sign. Here is a link to a PDF of that agreement:
http://www.albatherapeutics.com/Portals ... 202011.pdf
I'm thinking that I read somewhere in one of the many magazine or newspaper articles about Dr. Fasano, last year, that he was quoted as saying that the project was either on hold, or "dead in the water", or something along those lines. (IOW, they took their money and ran). Anyway, I got the impression that things weren't panning out, as had been hoped, but maybe he was misquoted, or I just misinterpreted what he inferred.
Frankly, I seriously doubt that any of the "innoculations" to prevent a gluten reaction will ever work well enough to be really practical. There are way too many peptides that we, (and celiacs), react to, and it's physically, (and economically), impossible to develop a pill, vaccine, or whatever, that will effectively neutralize all of those threats. Just neutralizing a few of the most significant ones, (as most of these projects are trying to do), is not going to be a practical solution for more than a handful of people.
There is another group, (in Australia, I believe), that is currently testing a vaccine that is supposed to establish gluten immunity. I've forgotten some of the other approaches being tested, but there are several more. Everyone and his dog is trying to cash in on the gold rush, but I haven't seen anything that looks promising. That's just my unprofessional opinion, though.
I agree with you, though - gluten is literally, and absolutely, ubiquitous, and very, very few people seem to comprehend the magnitude of the problem.
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.
I'm sorry I haven't responded sooner. I haven't been on the board for a few days.Susan wrote:Are you still doing better with the benadryl?
I wrote in another thread that I was doing well enough that I dropped to 2 Entocort every other day for just three times. I deteriorated immediately and went back to the full dose of 3 Entocort every day. I've been back on that dose for 10 days and am not seeing any improvement. I'm still taking the Benadryl and it has helped to reduce the gas, but Norman's not even close to visiting. I must have jinxed it.
I've been taking L-glutamine twice a day for the past week. So far I haven't seen any improvement. I bought Sam's Club mineral water at Walmart, but I think it may have given me D today. Life goes on...
Gloria
You never know what you can do until you have to do it.
Gloria,
I am so sorry you have to keep struggling so much with this. It's challenging enough when you have periods of relief.
I haven't taken Benadryl yet, although my allergies are worsening (it's been unseasonably warm here and the grass is turning green) I spoke with my dr. about the mast cell issue and he wanted me to jump right into gastrocom--it is now apparently available as chromylin sodium. I've read every thread on this and I know you considered this and found the cost to be prohibitive. I haven't checked on the price of the generic, at least I'm told there is a generic. I'm trying to absorb all the info on histamine and mast cells and make some decisions about how to proceed with all that. Normally, I don't even take antihistamine during allergy season, because I was never that uncomfortable. So I have to figure out what are the best choices.
Meanwhile, the entocort is working better for me--stools are getting pretty consistently formed but I have a lot of pain, almost all day long, in the lower right quadrant. Inflammation seems to be focused there. I've got my fingers crossed.
I've been taking glutamine also, but I don't think it has anything to do with improvement--I take it because I know it helps heal small intestine cells, so it has to have some benefit, I think. I've never found that I reacted adversely to it.
Hope you get some more relief soon.
Lesley,
We always stay with family, too, and I'm only just beginning to realize how challenging that can be--I cook my own food, but it's that generalized gluten stuff, as Tex says, that can't be escaped. We can only hope it doesn't throw us off, but I think my genes make me highly sensitive. I don't want to be a "demanding" relative, washing everything, making a big deal about my food and food prep. I guess we all know it's just not easy, and I find my relatives try but just don't really believe that I can get "'sick."
Hope your burning esophagus is much better today. I have used slippery elm tea to calm that, but you have to feel sure you don't react to it--and it takes a day or two to get relief with it.
I am so sorry you have to keep struggling so much with this. It's challenging enough when you have periods of relief.
I haven't taken Benadryl yet, although my allergies are worsening (it's been unseasonably warm here and the grass is turning green) I spoke with my dr. about the mast cell issue and he wanted me to jump right into gastrocom--it is now apparently available as chromylin sodium. I've read every thread on this and I know you considered this and found the cost to be prohibitive. I haven't checked on the price of the generic, at least I'm told there is a generic. I'm trying to absorb all the info on histamine and mast cells and make some decisions about how to proceed with all that. Normally, I don't even take antihistamine during allergy season, because I was never that uncomfortable. So I have to figure out what are the best choices.
Meanwhile, the entocort is working better for me--stools are getting pretty consistently formed but I have a lot of pain, almost all day long, in the lower right quadrant. Inflammation seems to be focused there. I've got my fingers crossed.
I've been taking glutamine also, but I don't think it has anything to do with improvement--I take it because I know it helps heal small intestine cells, so it has to have some benefit, I think. I've never found that I reacted adversely to it.
Hope you get some more relief soon.
Lesley,
We always stay with family, too, and I'm only just beginning to realize how challenging that can be--I cook my own food, but it's that generalized gluten stuff, as Tex says, that can't be escaped. We can only hope it doesn't throw us off, but I think my genes make me highly sensitive. I don't want to be a "demanding" relative, washing everything, making a big deal about my food and food prep. I guess we all know it's just not easy, and I find my relatives try but just don't really believe that I can get "'sick."
Hope your burning esophagus is much better today. I have used slippery elm tea to calm that, but you have to feel sure you don't react to it--and it takes a day or two to get relief with it.
Sorry to hear your problems are back Susan-
Have you ever had the nasal congestion before? I've had CC for about 4 1/2 years and I've never had that issue until a few months ago. Do your eyes burn or hurt too? I'm curious since the doctors look at me like I'm nuts when I relate this complaint to CC. Today my ears are stuffy and I'm positive it's not from getting sick.
I've been debating about asking my GI to put me on Entocort again. I'm almost off of prednisone and of course the D is back and I'm trying to decide if it would be worth a try or not. I took it 4 years ago and it did nothing.
I find the topic of mast cells very interesting since I hadn't heard of them until I started reading here.
Have you ever had the nasal congestion before? I've had CC for about 4 1/2 years and I've never had that issue until a few months ago. Do your eyes burn or hurt too? I'm curious since the doctors look at me like I'm nuts when I relate this complaint to CC. Today my ears are stuffy and I'm positive it's not from getting sick.
I've been debating about asking my GI to put me on Entocort again. I'm almost off of prednisone and of course the D is back and I'm trying to decide if it would be worth a try or not. I took it 4 years ago and it did nothing.
I find the topic of mast cells very interesting since I hadn't heard of them until I started reading here.
Deb
I have always had seasonal allergies, so the congestion is not new to me. Yes, sometimes my eyes can get runny. However, it has been somewhat worse, I think, since mc began 3 and a half years ago. However, I live in the land of mold and pollen and coal plant pollution and frequently stagnant air, so I have just thought it was environmental.
I don't know how to advise about entocort. It always worked really well for me, up until now. If it didn't work four years ago, do you think it could work now--perhaps because of the course of prednisone as a set up for it? I just don't know. I do know how discouraging it must be to have the D reoccur as you taper the prednisone.
It's a road full of ups and downs, helping ourselves get better. I hope you get relief soon. By the way, at one time 3 years ago, I thought perhaps my congestion was worsened by entocort and sinusitis, which i didn't have at the time, is listed as a side effect. Ultimately, though, I decided it wasn't the entocort, and that the molds, which come in multiple shapes and sizes around here, were the real culprits.
Susan
I have always had seasonal allergies, so the congestion is not new to me. Yes, sometimes my eyes can get runny. However, it has been somewhat worse, I think, since mc began 3 and a half years ago. However, I live in the land of mold and pollen and coal plant pollution and frequently stagnant air, so I have just thought it was environmental.
I don't know how to advise about entocort. It always worked really well for me, up until now. If it didn't work four years ago, do you think it could work now--perhaps because of the course of prednisone as a set up for it? I just don't know. I do know how discouraging it must be to have the D reoccur as you taper the prednisone.
It's a road full of ups and downs, helping ourselves get better. I hope you get relief soon. By the way, at one time 3 years ago, I thought perhaps my congestion was worsened by entocort and sinusitis, which i didn't have at the time, is listed as a side effect. Ultimately, though, I decided it wasn't the entocort, and that the molds, which come in multiple shapes and sizes around here, were the real culprits.
Susan
Susan- I have mild seasonal allergies but nothing like what I have now. I'm hoping it will eventually go away. I can relate to the environmental allergies too. I used to work the department of public works where I live and routinely handled bags of cement, was exposed to many different chemicals, helped with the maintenance of sewers, etc. and I don't think I'd be able to be around that now. My husband and I have been remodeling our house for the past seven years doing projects little by little as we can afford it and also doing the same for our cabin up north and that even bothers me still. It's a bit discouraging but I don't know what can be done. Our cabin up north had water damage to it when we bought it and we have basically over past four years gutted it and rebuilt. There was a lot of mold that we found along the way and I would literally start to tingle all over especially in my face and lips when I entered the bedroom. I'm not as bad as a few years ago but I'm always nervous around certain exposures. I just finished staining and polying a door my husband built for our office and that has caused a mild stomach ache and slight irritation to my face. This is a project better suited to the outdoors but is 23 degrees out and I would love to get this checked off the list.
I hope you find relief soon too!
I hope you find relief soon too!