I wrote a week ago that I took 1 pill of Benadryl and the next day I was groggy, took a 2-hour nap, and had a headache. I stopped taking it for a day, and resumed taking 1/2 pill a day. The next day I still had energy and didn't have a headache, so I have continued taking 1/2 pill a day at bedtime.
I haven't had any mouth sores since I've begun taking Benadryl; most evenings I don't have any more gurgling, and the best news - my BMs have firmed up to be solid, close to Normans. I usually have just one BM, first thing in the morning. Some days I have two in the morning, but none later in the day. I don't even think about going the rest of the day, and the gas is diminishing. I had been going 2-4 times a day and wasn't even close to having Normans. The gas was loud and embarrassing in public bathrooms.
I'm still taking 3 Entocort a day, but I haven't taken any Imodium for over a month. I'm eating my three vegetables again. I'm not sure if I can eat broccoli or Brussels sprouts, but cauliflower and asparagus seem to be OK.
I've just started adding a 1/2 capsule of Claritin 12 hours after I've taken the Benadryl so that I keep the antihistamines working to reduce the histamines in my body.
I had reached bottom a couple of weeks ago and told myself that I might as well eat whatever I wanted (other than the "big four") because it didn't seem to matter. Of course, I didn't do it, but it seemed like a reasonable thing to do. I didn't have any hope left, but now I do!
Note to the newbies: Benadryl works for me because I have a problem with mast cells and an antihistamine will counteract them. You can find information about mastocytosis here: http://tmsforac.ipower.com/dev/archives/179
Knowledgable GIs stain the biopsy taken during a colonoscopy to detect if excess mast cells are present. I determined that I have the problem primarily by my symptoms (mouth sores, facial hives, itchy scalp bumps) and my reactions to eating high-histamine foods. Some foods high in histamines are listed here: http://www.urticaria.thunderworksinc.co ... tamine.htm
Gloria
Benadryl is helping me!
Moderators: Rosie, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Benadryl is helping me!
You never know what you can do until you have to do it.
Gloria,
Well that's the best news that I've seen in a long time, and I'm certainly glad to see that you've found a treatment that helps. We've always wondered if there might be something else going on, making your case so much more difficult to treat, but of course, pinning something like that down is much easier said than done, and it always seems to be just out of reach. Good for you, for proving the connection, after your GI doc and pathologist missed it.
I wonder if mast cell issues could also be part of the reason why you seem to be especially vulnerable to pneumonia, under certain circumstances.
Tex
Well that's the best news that I've seen in a long time, and I'm certainly glad to see that you've found a treatment that helps. We've always wondered if there might be something else going on, making your case so much more difficult to treat, but of course, pinning something like that down is much easier said than done, and it always seems to be just out of reach. Good for you, for proving the connection, after your GI doc and pathologist missed it.
I wonder if mast cell issues could also be part of the reason why you seem to be especially vulnerable to pneumonia, under certain circumstances.
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.
That's an interesting theory. I actually noticed a slight improvement in my MC symptoms when I took some WalMart cold medicine while I was visiting my daughter. I theorized that the antihistamine in the medicine was helping, so I tried Benadryl when I got home.Tex wrote:I wonder if mast cell issues could also be part of the reason why you seem to be especially vulnerable to pneumonia, under certain circumstances.
I don't think I took cold medicine the previous two years that I got pneumonia because I was nervous about the ingredients. This time, I didn't care because it didn't seem to matter what I consumed. It just might be that the antihistamine in the cold medicine also helped prevent pneumonia this time.
Gloria
You never know what you can do until you have to do it.
Well needless to say Gloria, this is very good news! 
Have you considered taking the H2 antihistamine (such as Zantac) that is also recommended with Claritin or Benadryl? Just to see if it also improves the condition further?
I know this is such a relief and again there is hope! I have also gotten to the point that I would eat what I wanted, but not including the major offenders. And of course that does not work! I wish I could say that I have a histamine problem, but I don't believe I do.
Keep us informed on this progress, I am always interested in your success!
Love, G
Have you considered taking the H2 antihistamine (such as Zantac) that is also recommended with Claritin or Benadryl? Just to see if it also improves the condition further?I know this is such a relief and again there is hope! I have also gotten to the point that I would eat what I wanted, but not including the major offenders. And of course that does not work! I wish I could say that I have a histamine problem, but I don't believe I do.
Keep us informed on this progress, I am always interested in your success!
Love, G
God, grant me the serenity to accept the things I cannot change; courage to change those things I can, and WISDOM to know the difference
That's great Gloria. I suspected all along that this was a problem for you. After a while you will need to increase your benedryl dose as you will become tolerant to that dose, but you have a long way to go before you reach that point.
Mary Beth
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
Thank you everyone for your good wishes.
It is going to take some time to determine what, if anything, I'll be able to add to my diet. I tried eating three pieces of chocolate on Sunday (first things first!), and didn't have a great day Monday. My gut gurgled a great deal after eating Brussels sprouts yesterday. No more experimenting for a while. I'll be happy to just have a calm gut right now.
Ginny,
I wasn't sure if you had a mast cell problem or not. I guess it's a good thing you don't, but it leaves you wondering why you're having such a difficult time.
I can't decide if I want to experiment with an H2 antihistamine. I'm nervous about taking an antacid or a PPI. I don't think there are any doctors who understand that they are contraindicated for someone with MC. It might help my mast cell problem, but could give me GERD. I'd be interested if anyone agrees or disagrees with me.
Mary Beth,
I've always appreciated that you alerted me to the possibility of having a mast cell problem. As far as I know, there is no cure for a mast cell problem. Similar to MC, all one can do is hope to put it in remission by controlling one's diet and/or taking meds.
I wondered if the body becomes tolerant to antihistamines like it does to a steroid. I hope it is a while before I have to increase the Benadryl. I have to decide if I should continue taking the full dosage of Entocort, since it's not bringing remission anymore. I may try to cut down and start taking Imodium in it's place.
I should mention that I am taking 2 strontium pills a day now. I started out taking just one a day, and gradually increased to two. I no longer get headaches from it and am hoping that it will help my osteoporosis.
It looks like I am quickly becoming an OTC medicine woman, in spite of my reservations.
Gloria
It is going to take some time to determine what, if anything, I'll be able to add to my diet. I tried eating three pieces of chocolate on Sunday (first things first!), and didn't have a great day Monday. My gut gurgled a great deal after eating Brussels sprouts yesterday. No more experimenting for a while. I'll be happy to just have a calm gut right now.
Ginny,
I wasn't sure if you had a mast cell problem or not. I guess it's a good thing you don't, but it leaves you wondering why you're having such a difficult time.
I can't decide if I want to experiment with an H2 antihistamine. I'm nervous about taking an antacid or a PPI. I don't think there are any doctors who understand that they are contraindicated for someone with MC. It might help my mast cell problem, but could give me GERD. I'd be interested if anyone agrees or disagrees with me.
Mary Beth,
I've always appreciated that you alerted me to the possibility of having a mast cell problem. As far as I know, there is no cure for a mast cell problem. Similar to MC, all one can do is hope to put it in remission by controlling one's diet and/or taking meds.
I wondered if the body becomes tolerant to antihistamines like it does to a steroid. I hope it is a while before I have to increase the Benadryl. I have to decide if I should continue taking the full dosage of Entocort, since it's not bringing remission anymore. I may try to cut down and start taking Imodium in it's place.
I should mention that I am taking 2 strontium pills a day now. I started out taking just one a day, and gradually increased to two. I no longer get headaches from it and am hoping that it will help my osteoporosis.
It looks like I am quickly becoming an OTC medicine woman, in spite of my reservations.
Gloria
You never know what you can do until you have to do it.
Gloria wrote:I can't decide if I want to experiment with an H2 antihistamine. I'm nervous about taking an antacid or a PPI. I don't think there are any doctors who understand that they are contraindicated for someone with MC. It might help my mast cell problem, but could give me GERD. I'd be interested if anyone agrees or disagrees with me.
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.
An update:
I was doing so much better taking Benadryl that I decided to try eliminating one Entocort pill every other day last week. Within a day, my BMs began deteriorating, though the number of stayed at 1-2 times per day. Gas increased also. I haven't changed my diet at all. After just three days of reduced Entocort, I decided to go back to 3 pills per day. I've been back on the full dosage for three days and have seen a slight improvement, but nothing near Normans yet.
Never underestimate the power of Entocort. I thought it hasn't been helping me, but it has.
I was reading a mast cell website post on Ketofin vs. gastrocrom: http://mastcelldisorders.lefora.com/201 ... astrocrom/ Someone made this comment:
I bought some L-glutamine yesterday in capsules. I'll begin taking 1 capsule in the morning and another in the evening and see if it makes any difference.
Gloria
I was doing so much better taking Benadryl that I decided to try eliminating one Entocort pill every other day last week. Within a day, my BMs began deteriorating, though the number of stayed at 1-2 times per day. Gas increased also. I haven't changed my diet at all. After just three days of reduced Entocort, I decided to go back to 3 pills per day. I've been back on the full dosage for three days and have seen a slight improvement, but nothing near Normans yet.
Never underestimate the power of Entocort. I thought it hasn't been helping me, but it has.
I was reading a mast cell website post on Ketofin vs. gastrocrom: http://mastcelldisorders.lefora.com/201 ... astrocrom/ Someone made this comment:
Of course I'm worried now. Has anyone read this about Benadryl? Should I be wary of taking it every day? Is there a better antihistamine? I've tried Claritin and Zyrtec. Neither seemed to help. I could ask for a script for Singulair from my PCP. I'm starting to wonder if I should try to see a doctor about medications for mast cells, but I know he/she will tell me to take an H2 blocker, which is an antacid. I'm pretty sure I can't afford Gastrocrom. I'll be going on Medicare in about 2 1/2 months and would have to pay thousands of dollars for it and/or Entocort. I can get Entocort from India, but not Gastrocrom."I would also say to be careful of using Benadryl every day too--Benadryl effects an enzyme that allows mast cells to degrade faster. Benadryl is a great med--used as a rescue drug, not every day. I would use another antihistamine to replace it.
I bought some L-glutamine yesterday in capsules. I'll begin taking 1 capsule in the morning and another in the evening and see if it makes any difference.
Gloria
You never know what you can do until you have to do it.
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draperygoddess
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