Tex has posted on how many more people than was originally thought probably had mast cell involvement. I've posted before that I had some clues that this was the case for me. Three years ago I had patch testing done for a persistent itchy rash that I had. At that time, I was told I was allergic to Balsam of Peru, which is a group of chemicals and spices that just happens to be high in histamine. After Mary Beth pointed me in the direction of Histame I seemed to have turned a corner--I was finally able to get the diarrhea to stop, but things were still very tentative and my diet was extremely limited. So I decided to look into mast cells a bit more.
As you can imagine, there is a support forum for everything, and there is one for mast cells too. So I did some reading on that forum and figured out what medications were used to treat mast cell disorders. And it turns out, they are mostly over the counter medications. As it turns out, diarrhea is almost a universal symptom of those who have mast cell problems, which is caused by irritation of the colon from the histamine released from the mast cells. I started taking Zyrtec and within a week the itchy rash that had been misdiagnosed by 3 different dermatologists stopped itching and started to clear up. Obviously, I was encouraged. Next, I tried cromolyn sodium, which happens to be available in an over the counter allergy nasal spray. I sprayed it into my nose, but instead of inhaling through my nose, I let it run down my throat. Within days there was a dramatic improvement in my BMs. I went from smaller well-formed pieces to Norman. As I've increased the dose from 2 sprays to 4 sprays in each nostril 4 times per day, the color of my BMs have improved.
Three weeks in to this experiment, 90% of my skin rash has healed and I've added foods back into my diet. I'm still testing slowly and safely (still staying g/f, d/f, & s/f--and trying to stay on the lower end of histamine levels), but I haven't seen any problems with the 3 foods I've been able to add back in. I'll keep you posted as I continue to try to add more foods back into my diet.
I'm posting this so that anyone who thinks that mast cells may have some involvement in this puzzle that is called microscopic colitis may have a direction to look in.
Mast Cells
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TooManyHats
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Mast Cells
Arlene
Progress, not perfection.
Progress, not perfection.
Arlene,
I've been wondering how you were doing - this is wonderful news!
Thanks for sharing your thinking process and the steps of your experiment. You're clearly on the right track, both with your suspicions about mast cell involvement and your action plan. So encouraging that you're able to get more foods back into your diet, too!
A friend's teen son had months of terrible joint pain and rash last year (hospitalized, missed a lot of school, yikes), and is now taking prescription Zyrtec. I have been wondering whether he has food intolerances to discover, but perhaps he, too, is a candidate for mast cell issues?
Those are interesting additions to the toolkit. I wonder whether the need for Zyrtec & cromolyn sodium fluctuates over time, or with the seasons and/or diet, or other immune issues that come along. With seasonal allergies, I see a big difference in reactivity if I have them well controlled (via supplements starting late winter). When I don't, I'm like an overflowing glass of symptoms - it takes one cat hair or a hint of pollen to spill me over. I wonder whether other mast cell reactions are similar in this way. Maybe in a year, you could reduce the dose to maintain stability? Or maybe the system has 'learned' to be permanently trigger happy. Do you have a sense about that from your other forum, or your personal experience?
Very nice to hear from you,
Sara
I've been wondering how you were doing - this is wonderful news!
Thanks for sharing your thinking process and the steps of your experiment. You're clearly on the right track, both with your suspicions about mast cell involvement and your action plan. So encouraging that you're able to get more foods back into your diet, too!
A friend's teen son had months of terrible joint pain and rash last year (hospitalized, missed a lot of school, yikes), and is now taking prescription Zyrtec. I have been wondering whether he has food intolerances to discover, but perhaps he, too, is a candidate for mast cell issues?
Those are interesting additions to the toolkit. I wonder whether the need for Zyrtec & cromolyn sodium fluctuates over time, or with the seasons and/or diet, or other immune issues that come along. With seasonal allergies, I see a big difference in reactivity if I have them well controlled (via supplements starting late winter). When I don't, I'm like an overflowing glass of symptoms - it takes one cat hair or a hint of pollen to spill me over. I wonder whether other mast cell reactions are similar in this way. Maybe in a year, you could reduce the dose to maintain stability? Or maybe the system has 'learned' to be permanently trigger happy. Do you have a sense about that from your other forum, or your personal experience?
Very nice to hear from you,
Sara
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TooManyHats
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I think I'll be taking the allergy medications from now on. From what I understand, cromolyn sodium helps to reduce reactions to allergens as long as it's taken. Once you stop, the allergy will come back. Honestly, although it's quite a procedure to eat--30 minutes before the meal I spray my nose, then 15 minutes before I eat I take the Histame--considering the alternative? This is a small price to pay for feeling well, having Norman be a regular visitor, and having my energy back. I take the Zyrtec at 4pm so that it's in my system for both dinner and the over night period, when histamine levels are highest. Apparently, that rash was chronic hives! I never would have guessed that because it didn't look anything like hives to me. Whatever, I don't care, it's healing and my skin looks better than it's looked in years!
I don't really think I have true allergies to foods. I think after years and years of living under tremendous stress, my immune system started to fight back. I think this is something I'll have to treat forever, but again, it's a small price to pay considering how sick I was 3 months ago.
BTW, another clue for me that this would work is that people with mast cell disorders when put on Prednisone do very well and have dramatic reduction in their symtoms--until of course, they come off of the medication. It made me think of the long term Entocort users and how once it's out of the system, the D comes back. The medications I take stabilize the mast cells in the same way that the steroid does, but I guess using a different approach. That's a question for Tex. LOL! I'm sure he could explain it much more eloquently than I can.
I don't really think I have true allergies to foods. I think after years and years of living under tremendous stress, my immune system started to fight back. I think this is something I'll have to treat forever, but again, it's a small price to pay considering how sick I was 3 months ago.
BTW, another clue for me that this would work is that people with mast cell disorders when put on Prednisone do very well and have dramatic reduction in their symtoms--until of course, they come off of the medication. It made me think of the long term Entocort users and how once it's out of the system, the D comes back. The medications I take stabilize the mast cells in the same way that the steroid does, but I guess using a different approach. That's a question for Tex. LOL! I'm sure he could explain it much more eloquently than I can.
Arlene
Progress, not perfection.
Progress, not perfection.
You did a great job of explaining your methods and your results, and that's all that counts. No one really knows how most meds work, anyway, despite all the claims made about them. Those claims are almost always based on results, not on the actual mechanics of how they work.
Mast cell stabilizers, (such as cromolyn sodium), simply stabilize the membranes of mast cells, and by doing so, they prevent them from releasing histamine, (or at least, they help to minimize the release of histamine). Besides cromolyn sodium, (cromoglicate), other options include lodoxamide, nedocromil sodium, olopatadine hydrochloride and pemirolast potassium.
Zyrtec, of course, simply blocks the effects of any histamines that are released, and prevents them from promoting allergy symptoms. Since Zyrtec is supposedly a 24-hour antihistamine, I agree with your scheduling. When I used to take a 24-hour antihistamine for hay fever, I always took it in the noon to mid afternoon time frame, so that it would be most effective during the part of the day when I needed it the most, and so that I would wake up free of congestion, (and for hay fever, of course, the pollen count is almost always at the lowest level in the morning, anyway).
The only concern I have about your treatment program is based on the negative effects that are so common with the use of nasal sprays. They almost always lead to a dependency, increasing dosage, (as it becomes less effective over time), irritated tissue, (with possible bleeding), loss of sense of smell, etc. IOW, they have an adverse effect on the tissues in the nasal passageways, which almost always becomes a troublesome problem with long-term use.
Cromolyn sodium is available as an oral treatment, and I would assume this is also true for many/most of the other mast cell stabilizers that are available:
Any any rate, you might want to consider an oral treatment, if you're planning on using a mast cell stabilizer for the long-term
Tex
Mast cell stabilizers, (such as cromolyn sodium), simply stabilize the membranes of mast cells, and by doing so, they prevent them from releasing histamine, (or at least, they help to minimize the release of histamine). Besides cromolyn sodium, (cromoglicate), other options include lodoxamide, nedocromil sodium, olopatadine hydrochloride and pemirolast potassium.
Zyrtec, of course, simply blocks the effects of any histamines that are released, and prevents them from promoting allergy symptoms. Since Zyrtec is supposedly a 24-hour antihistamine, I agree with your scheduling. When I used to take a 24-hour antihistamine for hay fever, I always took it in the noon to mid afternoon time frame, so that it would be most effective during the part of the day when I needed it the most, and so that I would wake up free of congestion, (and for hay fever, of course, the pollen count is almost always at the lowest level in the morning, anyway).
The only concern I have about your treatment program is based on the negative effects that are so common with the use of nasal sprays. They almost always lead to a dependency, increasing dosage, (as it becomes less effective over time), irritated tissue, (with possible bleeding), loss of sense of smell, etc. IOW, they have an adverse effect on the tissues in the nasal passageways, which almost always becomes a troublesome problem with long-term use.
Cromolyn sodium is available as an oral treatment, and I would assume this is also true for many/most of the other mast cell stabilizers that are available:
http://www.drugs.com/mtm/cromolyn-sodium-oral.htmlHow should I take cromolyn sodium oral?
Take this medication exactly as it was prescribed for you. Do not take the medication in larger amounts, or take it for longer than recommended by your doctor. Follow the directions on your prescription label.
This medicine is usually taken four times daily, before meals and at bedtime. Follow your doctor's instructions.
To use the cromolyn sodium oral solution (liquid), break open the ampule and squeeze the liquid into a glass of water. Stir this mixture and drink all of it right away.
Any any rate, you might want to consider an oral treatment, if you're planning on using a mast cell stabilizer for the long-term
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.
Arlene,
I agree so strongly, I can barely type because I'm nodding so hard:
In particular... that the inconvenience is a small price to pay for feeling well.
I'm so glad you have your energy back - that's how I knew I was on the right track. I was shocked the day I noticed I was perky, but still haven't fully recovered my strength and stamina. I'm thinking about doing an experiment based on your approach (not till after our travels). I think it's the cromolyn sodium I should start with (still need to learn about H1/H2 histamines to be sure).
I wonder whether you could drink the nasal spray in a glass of water, as the oral product is used? (I wonder how much your doctor would hate me for saying that?)
Tex, thanks for the distinction about the way those work. I think Zyrtec contains lactose, or some other ingredient that gave me pause, but I'll re-check that label. Or maybe try it anyway, next spring when the allergy season comes roaring back...
I agree so strongly, I can barely type because I'm nodding so hard:
In particular... that the inconvenience is a small price to pay for feeling well.
I'm so glad you have your energy back - that's how I knew I was on the right track. I was shocked the day I noticed I was perky, but still haven't fully recovered my strength and stamina. I'm thinking about doing an experiment based on your approach (not till after our travels). I think it's the cromolyn sodium I should start with (still need to learn about H1/H2 histamines to be sure).
I wonder whether you could drink the nasal spray in a glass of water, as the oral product is used? (I wonder how much your doctor would hate me for saying that?)
Tex, thanks for the distinction about the way those work. I think Zyrtec contains lactose, or some other ingredient that gave me pause, but I'll re-check that label. Or maybe try it anyway, next spring when the allergy season comes roaring back...
Yep, Zyrtec does contain a form of lactose. Claritin is another possibility. It's inactive ingredients are citric acid, edetate disodium, artificial flavor, glycerin, propylene glycol, sodium ben-zoate, sugar, and water. It's always a pleasure to see that "artificial flavor" in there. 
Tex
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.
Arlene,
There are different types of mast cell disorders and the type you most likely have is mast cell activation, but even that has subtypes. My experience has been that my mast cell activity waxes and wanes. I don't do well from about November to March and I take far more antihistamines during that period. Overall though, my mast cell activity has dramatically decreased over time.
Since you have responded positively to the nasal spray I encourage you to talk to your doctor about trying gastrocrom. I have never taken it, nor histame. I did try an H2 blocker (zantac) but reacted to it and stopped it. I have manage my symptoms with diet and claritin (Zyrtec makes me sleepy and I reacted badly to something in benedryl). You may not need to take it forever. Your nast cells may calm down after a while and you may be able to manage with just an OTC antihistamine prn.
Since you have touchy mast cells in more than one organ I also encourage you to pay close attention to meds. Certain medications are known to trigger mast cells (pain meds, anesthesia and a few others). The list is on the TMS website www.tmsforacure.org. It would be wise to print out the emergency protocol and carry it with you, along with some emergency meds, like claritin redi tabs (go under the tongue in case you can't swallow). Most mast cell patients pre-load with antihistamines and their meds prior to medical procedures, just in case. I also carry an epi pen withe me because I have had more serious reactions and know that serious reactions can happen within a matter of minutes. Another caution is venom/stings. Studies have shown that people who react most likely have mast cell activation. I actually think everyone should have an epipen in their home . . . you never know when you might need it.
Also, remember a compounding pharmacist can make up any med you need without reactive ingredients.
Glad you are feeling better. It's such a releif to get some answers.
Mary Beth
There are different types of mast cell disorders and the type you most likely have is mast cell activation, but even that has subtypes. My experience has been that my mast cell activity waxes and wanes. I don't do well from about November to March and I take far more antihistamines during that period. Overall though, my mast cell activity has dramatically decreased over time.
Since you have responded positively to the nasal spray I encourage you to talk to your doctor about trying gastrocrom. I have never taken it, nor histame. I did try an H2 blocker (zantac) but reacted to it and stopped it. I have manage my symptoms with diet and claritin (Zyrtec makes me sleepy and I reacted badly to something in benedryl). You may not need to take it forever. Your nast cells may calm down after a while and you may be able to manage with just an OTC antihistamine prn.
Since you have touchy mast cells in more than one organ I also encourage you to pay close attention to meds. Certain medications are known to trigger mast cells (pain meds, anesthesia and a few others). The list is on the TMS website www.tmsforacure.org. It would be wise to print out the emergency protocol and carry it with you, along with some emergency meds, like claritin redi tabs (go under the tongue in case you can't swallow). Most mast cell patients pre-load with antihistamines and their meds prior to medical procedures, just in case. I also carry an epi pen withe me because I have had more serious reactions and know that serious reactions can happen within a matter of minutes. Another caution is venom/stings. Studies have shown that people who react most likely have mast cell activation. I actually think everyone should have an epipen in their home . . . you never know when you might need it.
Also, remember a compounding pharmacist can make up any med you need without reactive ingredients.
Glad you are feeling better. It's such a releif to get some answers.
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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TooManyHats
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Geez Mary Beth, I had read all about those anaphylactic reactions, the passing out, etc. I didn't think I had to worry about that since I hadn't fainted even once, but now you've got me thinking. I hadn't explained all that to my husband because I didn't want to scare him and I didn't think it would be an issue for me. But now I think I'll have to. I will print out that emergency protocol and keep it with me, like you suggested and look into the other meds and write those down too. I guess I thought maybe I had dodged that bullet, but better to be safe than sorry I guess.
I also didn't know that the mast cells may calm down. I thought that this was it and I'd deal with it forever, which was fine with me. Anything was better than what I had before.
As far as the nasal spray, it specifically says that there's no rebound nasal congestion and it's non-habit forming. So far, I'm continuing the Pentasa and have enough for 9 more months worth with the prescription my doctor gave me. As far as gastrocrom goes, the therapeutic dose is 800 mg/day. Right now, I'm taking about 160 mg/day. I wonder how I'd transition from Pentasa and cromolyn sodium to just the gastrocrom? My nose, which always ran (I had attributed this to a deviated nasal septum) has finally stopped, which is kinda nice. I can't remember the last time I didn't have to have tissues with me constantly.
Sara, you're not the only one who thought of mixing the nasal spray with water and drinking it! I thought of that, but decided against it. So far, so good. But, I will speak to the doc about gastrocrom when I see him. I just don't want to take more of that stuff than I have to.
I'm very surprised to see that lactose monohydrate in the Zyrtec. It doesn't seem to bother me at all, yet when I took Asacol, I was sick as a dog. Go figure!
I'm grateful for all the help and support I've gotten here, and today's information is no exception! Thank you all!!
I also didn't know that the mast cells may calm down. I thought that this was it and I'd deal with it forever, which was fine with me. Anything was better than what I had before.
As far as the nasal spray, it specifically says that there's no rebound nasal congestion and it's non-habit forming. So far, I'm continuing the Pentasa and have enough for 9 more months worth with the prescription my doctor gave me. As far as gastrocrom goes, the therapeutic dose is 800 mg/day. Right now, I'm taking about 160 mg/day. I wonder how I'd transition from Pentasa and cromolyn sodium to just the gastrocrom? My nose, which always ran (I had attributed this to a deviated nasal septum) has finally stopped, which is kinda nice. I can't remember the last time I didn't have to have tissues with me constantly.
Sara, you're not the only one who thought of mixing the nasal spray with water and drinking it! I thought of that, but decided against it. So far, so good. But, I will speak to the doc about gastrocrom when I see him. I just don't want to take more of that stuff than I have to.
I'm very surprised to see that lactose monohydrate in the Zyrtec. It doesn't seem to bother me at all, yet when I took Asacol, I was sick as a dog. Go figure!
I'm grateful for all the help and support I've gotten here, and today's information is no exception! Thank you all!!
Arlene
Progress, not perfection.
Progress, not perfection.
Arlene,
I am not saying you will have a problem, I just think you are higher risk. I thought I was over the hump too when I went to Boston last winter to see Dr. Castells and she told me to be careful with certain things.
I was not really sick prior to my flu shot reaction but mast cells were gradually acting up. I had occasional GERD and some mild chest pain, which I now know were mast cell related. However, I was under alot of stress (finishing an intership and opening my business). As we all know stress is a big trigger for us, so a combination of stress and another trigger could be all it takes to have a big mast cell reaction. The flu shot reaction was all it took to send me into a tailspin with mast cells. Dr. Castells told me that after a cytokine storm mast cells generally calm down but it could take a few years (in my case 3). It took me a long time to connect the dots but I avoid all known triggers to be on the safe side. Never do I want to experience that again.
So I think anyone who has some mast cell activation, act prudently and try to avoid things that are known to degranulate mast cells. There are some common triggers that are listed on the TMS website. I think it wise to discuss "what if" with your family.
Mary Beth
I am not saying you will have a problem, I just think you are higher risk. I thought I was over the hump too when I went to Boston last winter to see Dr. Castells and she told me to be careful with certain things.
I was not really sick prior to my flu shot reaction but mast cells were gradually acting up. I had occasional GERD and some mild chest pain, which I now know were mast cell related. However, I was under alot of stress (finishing an intership and opening my business). As we all know stress is a big trigger for us, so a combination of stress and another trigger could be all it takes to have a big mast cell reaction. The flu shot reaction was all it took to send me into a tailspin with mast cells. Dr. Castells told me that after a cytokine storm mast cells generally calm down but it could take a few years (in my case 3). It took me a long time to connect the dots but I avoid all known triggers to be on the safe side. Never do I want to experience that again.
So I think anyone who has some mast cell activation, act prudently and try to avoid things that are known to degranulate mast cells. There are some common triggers that are listed on the TMS website. I think it wise to discuss "what if" with your family.
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
This is a fascinating discussion. Arlene, I'm so glad that you've found a treatment plan that is working for you. I also am a little concerned about the nasal spray for the same reasons that Tex mentioned.
I'm dealing with mast cell issues, as you probably know. I think that they are the reason that complete remission has been so elusive for me, though I'm doing much better being off Entocort this time.
I'm not sure that I want to do the same regimen. For some reason it never bothered me to take Entocort, a corticosteriod, but OTC medications do. Maybe it's the thought of having to continually buy so many. I don't even like taking Imodium on a regular basis. But maybe I would change my mind if it meant I could expand my diet. Rather than adding foods, I'm still eliminating them. I'm running out of options because there's so few left on my list.
Mary Beth, I'm encouraged to read that the mast cells eventually calm down. It gives me hope that I might be able to eat fruit again someday. I'm pretty sure that my inability to eat fruit is due to a mast cell problem because I always get mouth sores after I eat them.
Gloria
I'm dealing with mast cell issues, as you probably know. I think that they are the reason that complete remission has been so elusive for me, though I'm doing much better being off Entocort this time.
I'm not sure that I want to do the same regimen. For some reason it never bothered me to take Entocort, a corticosteriod, but OTC medications do. Maybe it's the thought of having to continually buy so many. I don't even like taking Imodium on a regular basis. But maybe I would change my mind if it meant I could expand my diet. Rather than adding foods, I'm still eliminating them. I'm running out of options because there's so few left on my list.
Mary Beth, I'm encouraged to read that the mast cells eventually calm down. It gives me hope that I might be able to eat fruit again someday. I'm pretty sure that my inability to eat fruit is due to a mast cell problem because I always get mouth sores after I eat them.
Gloria
You never know what you can do until you have to do it.
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TooManyHats
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Gloria,
I've added an organic turkey frank, "grilled cheese" made with g/f Udi's bread and Daiya cheese (g/f, d/f, & s/f), and Herr's baked potato chips. All tested fine.
Tonight I tried a small amount of organic ketchup. So far, so good. I wait 2 full days to see if the test was successful. Next up is eggs. I'll also be testing chicken soon.
The way I see it is that my mast cells were so unstable that I was reacting to anything and everything. I'm certainly not looking to go hog wild, but being able to add some things back into my diet so that I'm not so limited would be great.
With the cromolyn sodium nasal spray, it's not an antihistamine, decongestant, or a corticosteroid so all the negative effects of traditional nasal sprays don't apply. I got the idea to try it this way from someone on the mast cell support board who had no insurance to pay for gastrocrom. But I will ask about the oral medication when I see the doctor. I'm just not interested in all the testing they put patients through with this disorder, one of which is a bone marrow biopsy. I've had that test and won't be signing up for it again, thank you.
I've added an organic turkey frank, "grilled cheese" made with g/f Udi's bread and Daiya cheese (g/f, d/f, & s/f), and Herr's baked potato chips. All tested fine.
Tonight I tried a small amount of organic ketchup. So far, so good. I wait 2 full days to see if the test was successful. Next up is eggs. I'll also be testing chicken soon.
The way I see it is that my mast cells were so unstable that I was reacting to anything and everything. I'm certainly not looking to go hog wild, but being able to add some things back into my diet so that I'm not so limited would be great.
With the cromolyn sodium nasal spray, it's not an antihistamine, decongestant, or a corticosteroid so all the negative effects of traditional nasal sprays don't apply. I got the idea to try it this way from someone on the mast cell support board who had no insurance to pay for gastrocrom. But I will ask about the oral medication when I see the doctor. I'm just not interested in all the testing they put patients through with this disorder, one of which is a bone marrow biopsy. I've had that test and won't be signing up for it again, thank you.
Arlene
Progress, not perfection.
Progress, not perfection.
Arlene, what a gourmet menu! Woohoo!! for the incredible progress you've made.
For me, chicken has always been easier than eggs (even before my Enterolab results said no eggs). I would guess you've done your own research and made the right choice... just sharing my own "fine print." (Had a long, tough day yesterday, ate out, had another long day today... so today I ate chicken for lunch *and* dinner - this may not be everyone's easiest protein, but seems to be mine.)
I also think egg whites are more reaction-promoting than the yokes, if you want to break down your egg experiment into phases.
AND - I totally agree with the "no thank you" on ferocious testing... I hope your doctor can help without hurting. (Hey, isn't that the Hippocratic oath?)
...and I know that feeling of reacting to anything and everything - so you can't even tell which is the problem food, or whether your body was going to panic at that moment regardless. I sure had that, and don't feel entirely out of the woods, but it thankfully has not been a daily/hourly/every meal kind of process, as I know it has been for you. Mary Beth's info is helpful and hopeful, and so is your exciting progress. It does seem as though it's possible to turn the volume down on the hyperreactivity. Whether or not that means ongoing medication, etc., that is wonderful news.
Congratulations. You're trailblazing here, bravo!
Sara
For me, chicken has always been easier than eggs (even before my Enterolab results said no eggs). I would guess you've done your own research and made the right choice... just sharing my own "fine print." (Had a long, tough day yesterday, ate out, had another long day today... so today I ate chicken for lunch *and* dinner - this may not be everyone's easiest protein, but seems to be mine.)
I also think egg whites are more reaction-promoting than the yokes, if you want to break down your egg experiment into phases.
AND - I totally agree with the "no thank you" on ferocious testing... I hope your doctor can help without hurting. (Hey, isn't that the Hippocratic oath?)
...and I know that feeling of reacting to anything and everything - so you can't even tell which is the problem food, or whether your body was going to panic at that moment regardless. I sure had that, and don't feel entirely out of the woods, but it thankfully has not been a daily/hourly/every meal kind of process, as I know it has been for you. Mary Beth's info is helpful and hopeful, and so is your exciting progress. It does seem as though it's possible to turn the volume down on the hyperreactivity. Whether or not that means ongoing medication, etc., that is wonderful news.
Congratulations. You're trailblazing here, bravo!
Sara
Arlene,
Being able to eat tomatoes, potatoes and chocolate again is very tempting. I have a bottle of Zyrtec and a few boxes of Histame. I feel better about testing now that I'm off Entocort because I get a truer picture of how my body is responding.
I'm going to mull this over. My garden is brimming with cherries, blueberries, strawberries, raspberries and rhubarb, all ripening and waiting to tantalize me in a few more weeks. I'm not sure that histamines are the entire problem with fruit, but I bet they play a large part.
Right now I'm suspicious of rice
and am trying to figure out how I will do without this integral part of my diet. I don't even want to think about it, but I have to see if eliminating it will make any difference.
Gloria
Being able to eat tomatoes, potatoes and chocolate again is very tempting. I have a bottle of Zyrtec and a few boxes of Histame. I feel better about testing now that I'm off Entocort because I get a truer picture of how my body is responding.
I'm going to mull this over. My garden is brimming with cherries, blueberries, strawberries, raspberries and rhubarb, all ripening and waiting to tantalize me in a few more weeks. I'm not sure that histamines are the entire problem with fruit, but I bet they play a large part.
Right now I'm suspicious of rice
and am trying to figure out how I will do without this integral part of my diet. I don't even want to think about it, but I have to see if eliminating it will make any difference.Gloria
You never know what you can do until you have to do it.
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TooManyHats
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- Posts: 550
- Joined: Fri Jan 14, 2011 9:30 pm
- Location: New Jersey
Gloria,
Histame alone did not do it for me. It helped, but it doesn't stabilize the mast cells, which I think is more important than clearing histamine from my body (which is what Histame does). It was the addition of the cromolyn sodium that made the difference for me. I think it's odd that it's listed as a treatment for inflammatory bowel disease, yet no one (that I know of, anyway) uses it.
Histame alone did not do it for me. It helped, but it doesn't stabilize the mast cells, which I think is more important than clearing histamine from my body (which is what Histame does). It was the addition of the cromolyn sodium that made the difference for me. I think it's odd that it's listed as a treatment for inflammatory bowel disease, yet no one (that I know of, anyway) uses it.
Arlene
Progress, not perfection.
Progress, not perfection.