Hi there all - I found this link http://jpet.aspetjournals.org/content/319/3/1104.full regarding the success with those with IBS and mast cell issues - wondering if anyone used it and if so, what success or not?
thxs
babs
KETOTIFEN as mast cell stabilizer -anyone use it???
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
KETOTIFEN as mast cell stabilizer -anyone use it???
Babs
Canada
Feb 2013 diagnosed Lymphocytic colitis
SCD diet since March 2013
Mezavant April 30 to present still no success
entocort from feb 1 to 28 no success
Canada
Feb 2013 diagnosed Lymphocytic colitis
SCD diet since March 2013
Mezavant April 30 to present still no success
entocort from feb 1 to 28 no success
Hi Babs,
I only recently figured out, after conversation with folks on here, that mast cells apparently were an issue for me. I have had great success since with a fairly simple regimen of an anti-histamine each day (I've tried Claritin, Allegra, and am now experimenting with Zyrtec), plus an Imodium every third day. I am also messing around with Betaine on days when I know I will be eating foods that are higher-histamine, but haven't quite got the hang of it yet.
Since I did this, I have been in the most near-normal GI state since my 2011 diagnosis. I previously modified my diet to be totally gluten, mostly dairy (except I now eat cheese, after two years of not eating it, with no apparent problem) and as soy free as I can keep it. I am not willing to severely restrict my diet any further than that. I am very happy with where I am right now.
I still believe that you need to address food issues, especially the "big three" of gluten/dairy/soy to get on the road to recovery.
I only recently figured out, after conversation with folks on here, that mast cells apparently were an issue for me. I have had great success since with a fairly simple regimen of an anti-histamine each day (I've tried Claritin, Allegra, and am now experimenting with Zyrtec), plus an Imodium every third day. I am also messing around with Betaine on days when I know I will be eating foods that are higher-histamine, but haven't quite got the hang of it yet.
Since I did this, I have been in the most near-normal GI state since my 2011 diagnosis. I previously modified my diet to be totally gluten, mostly dairy (except I now eat cheese, after two years of not eating it, with no apparent problem) and as soy free as I can keep it. I am not willing to severely restrict my diet any further than that. I am very happy with where I am right now.
I still believe that you need to address food issues, especially the "big three" of gluten/dairy/soy to get on the road to recovery.
Suze
Hi Suze I hope this is the answer for me as well!! I can't do the anti histamines OTC as the fillers cause heart issues big time! I can get Ketotifen here in Canada compounded and there is lots of good research on the internet especially for IBS which I had for 20 years. I also have rectal hypersensitivity which I discovered while dr's were trying a sigmoidscopy on me. I couldn't handle it at all and the dr said "holy crap you are super super sensitive" - cramps like crazy!!! Apparently that is a mast cell issue I believe (tex??). Anyways I am going to try the ketotifen first and see what happens. I am worried about being disappointed once again on a treatment but it's worth knowing I guess. I am also going to see if I can get immodium compounded as well since it has some bad fillers as well. What do you eat daily?? I have been sugar, gluten, carb free for since feb with some cheats. So now only eat chicken, beef (all organice hormone free) green beans carrots and SCD homemade yogurt with maple syrup for flavour and just filtered water. I am starving and skin and bones but to have a good stomach that's all I can tolerate. You??
babs
babs
Babs
Canada
Feb 2013 diagnosed Lymphocytic colitis
SCD diet since March 2013
Mezavant April 30 to present still no success
entocort from feb 1 to 28 no success
Canada
Feb 2013 diagnosed Lymphocytic colitis
SCD diet since March 2013
Mezavant April 30 to present still no success
entocort from feb 1 to 28 no success
Hi Babs,
Truthfully, for me to tell you specifically what I eat daily now, almost 3 years post-diagnosis, would not be helpful to your current situation. Suffice it to say, I eat a satisfying GF/DF/SF variety of foods.
The thing about this LC is that it requires each of us to find our way to healing, and what worked for me may not work for someone else. it would be easy if someone could say, "You will get better if you eat/don't eat XY or Z." But it's just not that easy.
Truthfully, for me to tell you specifically what I eat daily now, almost 3 years post-diagnosis, would not be helpful to your current situation. Suffice it to say, I eat a satisfying GF/DF/SF variety of foods.
The thing about this LC is that it requires each of us to find our way to healing, and what worked for me may not work for someone else. it would be easy if someone could say, "You will get better if you eat/don't eat XY or Z." But it's just not that easy.
Suze
Thanks suze - I agree - and my visit today to my doctors was difficult t say the least. He advised me to stop obsessing over this and time to start living again. I don't know why I can't get past the acceptance part of this. I just don't want to accept that I have this problem and will never enjoy my favorite foods again. I am miserable about it but I guess he is right. He says my family is living and breathing this illness day in and day out because that is all I obsess about. I am researching day in and day out trying to find the answers as I believe there has to be answers out there to fix me. something to able me to eat again and put weight on. But I guess it just isn't so. I have to accept it an will be heading to therapy tomorrow asking for coping skills. I don't know how everyone gets through this
babs
babs
Babs
Canada
Feb 2013 diagnosed Lymphocytic colitis
SCD diet since March 2013
Mezavant April 30 to present still no success
entocort from feb 1 to 28 no success
Canada
Feb 2013 diagnosed Lymphocytic colitis
SCD diet since March 2013
Mezavant April 30 to present still no success
entocort from feb 1 to 28 no success
Babs,
I remember receiving my Enterolab test results and being stunned for a few days. I couldn't believe I was intolerant to all the foods tested. It takes a while to accept that we need to eliminate favorite foods.
Ketotifen is available in Canada, but not in the U.S., so you won't find many, if any, people on the board who are familiar with it.
Here is a link to a Mast Cell Disorders Forum with some posts on Ketotifen. http://mastcelldisorders.wallack.us/yab ... =Medicines
Gloria
I remember receiving my Enterolab test results and being stunned for a few days. I couldn't believe I was intolerant to all the foods tested. It takes a while to accept that we need to eliminate favorite foods.
Ketotifen is available in Canada, but not in the U.S., so you won't find many, if any, people on the board who are familiar with it.
Here is a link to a Mast Cell Disorders Forum with some posts on Ketotifen. http://mastcelldisorders.wallack.us/yab ... =Medicines
Gloria
You never know what you can do until you have to do it.
Babs,
I hear you. I did my share of obsessing and head-banging at the beginning of all this. In the process, my sister, who is an RN, and who has multiple health issues, sort of gave me a slap in the head and told me to stop wasting my time searching all over the internet and to find a message board of people who had what I had, which led me to this amazing group. It has made all the difference. I no longer felt like a victim of my health circumstances, and was able to start making a plan of action that helped me to make positive changes that would result in regaining some semblance of normalcy. And I am living a pretty normal life now. But it took time and patience.
At some point, you need to stop the search and take some action, and it sounds like you might gradually be getting to that place. I'm not saying you have to be totally accepting of things just yet--I was royally pissed off for quite a while over what I had to give up, while at the same time I (grudgingly) had to admit that giving it up was making me feel a whole lot better. You just need to focus on re-taking control of your life one step at a time.
Try to stay positive. Negativity is way too draining, and we need all our energy to heal. Everyone here has faced the same struggles, and found ways to prevail, even in the face of setbacks, as Lori said.
I hear you. I did my share of obsessing and head-banging at the beginning of all this. In the process, my sister, who is an RN, and who has multiple health issues, sort of gave me a slap in the head and told me to stop wasting my time searching all over the internet and to find a message board of people who had what I had, which led me to this amazing group. It has made all the difference. I no longer felt like a victim of my health circumstances, and was able to start making a plan of action that helped me to make positive changes that would result in regaining some semblance of normalcy. And I am living a pretty normal life now. But it took time and patience.
At some point, you need to stop the search and take some action, and it sounds like you might gradually be getting to that place. I'm not saying you have to be totally accepting of things just yet--I was royally pissed off for quite a while over what I had to give up, while at the same time I (grudgingly) had to admit that giving it up was making me feel a whole lot better. You just need to focus on re-taking control of your life one step at a time.
Try to stay positive. Negativity is way too draining, and we need all our energy to heal. Everyone here has faced the same struggles, and found ways to prevail, even in the face of setbacks, as Lori said.
Suze
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Babs,
As long as you stay focused on what you want but can't have you will remain miserable. If you can turn that around and focus instead on what you can do to feel better and how much better your life will be when that happens, you will come to accept your new way of life. I used to make yogurt every week too, the 24 hr SCD kind. I would mix it with honey, cinnamon and vanilla extract and have some every day. It still sounds good to me but there is no way I would eat any because I know that for me, no matter how good it might taste, it is like ingesting poison and that is something I will not willingly do. Working on mind and attitude is so important. It is the difference between success and failure. I hope the therapist is helpful but there are no magic bullets here. It s all hard work but well worth it.
Jean
As long as you stay focused on what you want but can't have you will remain miserable. If you can turn that around and focus instead on what you can do to feel better and how much better your life will be when that happens, you will come to accept your new way of life. I used to make yogurt every week too, the 24 hr SCD kind. I would mix it with honey, cinnamon and vanilla extract and have some every day. It still sounds good to me but there is no way I would eat any because I know that for me, no matter how good it might taste, it is like ingesting poison and that is something I will not willingly do. Working on mind and attitude is so important. It is the difference between success and failure. I hope the therapist is helpful but there are no magic bullets here. It s all hard work but well worth it.
Jean
crap I didn't know that - I already take entocort - but from the research it states it is a mast cell stabilizer??? and I thought it would work well with entocort. My gp didn't say anything??
babs
babs
Babs
Canada
Feb 2013 diagnosed Lymphocytic colitis
SCD diet since March 2013
Mezavant April 30 to present still no success
entocort from feb 1 to 28 no success
Canada
Feb 2013 diagnosed Lymphocytic colitis
SCD diet since March 2013
Mezavant April 30 to present still no success
entocort from feb 1 to 28 no success
this is what I read about it on line - no where does it mention it is a steroid?? Now I am worried. I haven't filled it yet but they are compounding it for me tomorrow. UGH! I was sooo excited to try it too. :(
Ketotifen is a second-generation noncompetitive H1-antihistamine and mast cell stabilizer. It is most commonly sold as a salt of fumaric acid, ketotifen fumarate, and is available in two forms. In its ophthalmic form, it is used to treat allergic conjunctivitis,[1] or the itchy red eyes caused by allergies. In its oral form, it is used to prevent asthma attacks. Side effects include drowsiness, weight gain, dry mouth, irritability, and increased nosebleeds.
Ketotifen is a second-generation noncompetitive H1-antihistamine and mast cell stabilizer. It is most commonly sold as a salt of fumaric acid, ketotifen fumarate, and is available in two forms. In its ophthalmic form, it is used to treat allergic conjunctivitis,[1] or the itchy red eyes caused by allergies. In its oral form, it is used to prevent asthma attacks. Side effects include drowsiness, weight gain, dry mouth, irritability, and increased nosebleeds.
Babs
Canada
Feb 2013 diagnosed Lymphocytic colitis
SCD diet since March 2013
Mezavant April 30 to present still no success
entocort from feb 1 to 28 no success
Canada
Feb 2013 diagnosed Lymphocytic colitis
SCD diet since March 2013
Mezavant April 30 to present still no success
entocort from feb 1 to 28 no success
Leah,
Is there a chance that you might be confusing ketotifen with something else? I thought it was an antihistamine. It does have some of the same side effects as corticosteroids, except that it shouldn't mess with the adrenals.
Barb,
FYI, though the medical literature doesn't actually come right out and say this (because they don't understand how corticosteroids work to reduce inflammation), it appears to me that corticosteroids work by preventing the propagation of mast cells, and they may also help to prevent the degranulation of mast cells (which implies that corticosteroids stabilize mast cells). In my book, I cite a reference to support this observation.
Tex
Is there a chance that you might be confusing ketotifen with something else? I thought it was an antihistamine. It does have some of the same side effects as corticosteroids, except that it shouldn't mess with the adrenals.
Barb,
FYI, though the medical literature doesn't actually come right out and say this (because they don't understand how corticosteroids work to reduce inflammation), it appears to me that corticosteroids work by preventing the propagation of mast cells, and they may also help to prevent the degranulation of mast cells (which implies that corticosteroids stabilize mast cells). In my book, I cite a reference to support this observation.
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 guess there is a chance, but I'm pretty sure it's what I read. I am sorry if I am wrong, but it shouldn't be too hard to find out for sure. I did read that is is used to treat asthma….. and that is usually done with steroids. The article I was reading was talking about having to continue to take it every day and how the dose had to be slowly titrated down when getting off the drug. I even wrote the word "corticosteroid" down on my note pad when I was reading.
Please let me know if I am wrong.
Leah
Please let me know if I am wrong.
Leah