Long Term Entocort?

[barbiem]

Thanks Tex!! but you are still sooo limited on what you can eat - how long has it been for you??? I am not on any antihistamines or anti depressants due to the fillers. I have been carb free for months and months in order to starve the bad bacteria and also the yeast but I was eating too many bananas. I know it is a histamine issue because when I eat yogurt I immediately witihin 10 mins get a tingly sensation over my back and arms. So if that is the case is that why entocort is not putting me into remission??? It helps so many others yet doesn't help me at all and asacol gives me more diarrhea.

I don't know what to eat that is fatty besides my steak and olive oil I put over it. I also eat lots of butter on my green beans.

Should I try taking an antihistamine even though there are illegals in all of them?? do you think that may help?? I am finally going to an allergist end of October so hopefully I can get some answers there.

I am wondering though if I should not try prednisone yet until after the allergist so he can get a true reading because the steroids could possibly affect the testing right?

I have also done the glucose hydrogen breath test which was negative.\

as of mast cell issues and avoiding foods that cause it - well again that leaves me very limited as to what I can eat.

It just is sooo strange that one part of the day I can eat yogurt and the next I can't and I am not on any antihistamines unless it is due to the time I take the entocort. Which was at lunch with food. Maybe it wears out so by the time breaky comes it has worn off a bit? it shouldn't do that though. It just makes no sense to me why it is not working especially when I have been following SCD for months and months now. I only added in sweet potatoes 3 weeks ago thinking that if the hydrogen breath test was negative then obviously I don't have a bacteria overgrowth issue and can eat a bit of carbs.

So how is it that some people feel Elavil caused their MC??? is there research stating this? but it is strictly for histamine issues??

thxs for helping me through this Tex - I am needing some help bit time!! so lost right now!!
barb

[tex]

I can eat other foods, I just don't. Fruits and vegetables are out because I have an ileostomy (not because of MC), so minimum fiber works best. The foods that I can't eat are listed under my avatar. I changed my diet 11 years ago.

Like all corticosteroids, Entocort suppresses the number of mast cells in our intestines, and that appears to be it's primary mode of inflammation suppression. Apparently it is only partially effective at preventing the inappropriate degranulation of mast cells though, so that is why it cannot always prevent reactions that are caused by mast cell issues (mast cell activation disorder, or MCAD). And that's why for some of us, antihistamines seem to work as well as (or possibly better than), Entocort. When remission cannot be attained by diet changes alone, or by a combination of Entocort and diet changes (because of mast cell problems), often the addition of an antihistamine or 2 can tip the balance to bring remission.

I have no idea what foods cause you to react, but most of us cannot eat butter, because it's loaded with casein. The SCD allows casein but not lactose. Most of us here are also sensitive to casein (the primary protein in all dairy products), not just the sugar (lactose) in dairy. That's why the SCD doesn't work for most people who have MC — we have to avoid all dairy products. If you need more fat in your diet, are you sensitive to pork and chicken? What about turkey?

Claritin Redi-tabs are safe for most of us, but the regular Claritin is not. I don't recall the ingredients in Allegra, but I can safely take it (I'm not sensitive to soy, though.

The only allergists we are aware of who understand how mast cells are involved with MC, and who are located anywhere near Canada, are at Brigham and Women's Hospital (in Boston, MA), under the direction of Dr. Maria Castells. Dr. Castells is probably the world's foremost expert on systemic mastocytosis and various other mast cell issues. Most of the doctors she trains there are also qualified.

By contrast, most other allergists are only trained to deal with skin problems, respiratory allergies, and food allergies that cause anaphylactic reactions. They don't have any knowledge of how mast cells cause diarrhea or other GI symptoms. IOW, they are familiar with IgE-based reactions, but IgA-based reactions aren't even on their radar.

Yes, steroids will definitely affect immune system tests.

If you have been taking Entocort at noon, then this is why your mast cell symptoms are suppressed in the afternoons, and not in the mornings.

Elavil regulates the motility of the gut, through the enteric nervous system. There is no official research that I'm aware of on any of it's affects on MC patients. All of our conclusions are based on our own shared experiences here on this board. We probably have the largest patient database in the world, on living with MC. Elavil has no significant effect on mast cell issues. It works by neurological effects, rather than by modulating immune system processes.

You're very welcome,
Tex

[Sheila]

Hi Kitty,
Back to your question, I've been taking budesinide for about 2 years. I've weaned down to one capsule every 3 days. I'm GF/SF/EF and almost dairy free. I've had Normans for quite a long time which wake me up quite early in the a.m. I have to plan on at least 1 1/2 to 2 hours in the morning to be sure I'm safe. I briefly took asacol in the very beginning of the disease and it didn't help at all.


Sheila W

[barbiem]

HI Tex - OMG you are a world of amazing information - finally something that is making sense to me!!! :) I thought I was losing my mind as everyone seems to have such great success with entocort yet here I am on month 5 and SCD with still symptoms!! THANK YOU!! Is a ileostomy where you no longer use your large colon?? What caused that to occur if not MC?? Sorry if too nosey just curious. What can you eat? how do you stay from getting depressed?? Sometimes I wish I had breast cancer so they can just cut it out and I can enjoy life. sad I know. How did you discover you had MCAD - was it after the MC diagnosis and because nothing was working for you either??

as for fat in my diet - I was adding avocado to my yogurt shakes - still having 3 bms in morning but at least putting weight on. I can only eat chicken fresh taken off the bone due to a gelatin intolerance. Cannot tolerate chicken broth at all!! I eat bison, beef, chicken and that's about it. I have tried turkey and it seemed okay. But no fat in any of these so what else can I eat? I was making macademia nut butter muffins but do get a bit of a reaction (tingly all over) after but keep eating cause I need the fat for energy.

How is it that MCAD causes diarrhea - why hasn't my GI specialist advised me of this when she knows entocort isn't working and has even suggested taking out my large colon!!

So you are saying if I take my entocort at lunch this is why I feel soooo awesome in the afternoon - should I maybe take 1 in the am 1 in the afternoon and then one around 5 or 6 or still take altogether just in the morning with my thyroid pill upon arising like suggested by you earlier (research showing all at once is best)??

So my question is will I have to eat this way forever?? I have no idea if I can tolerate casein since I use a lot of butter on my green beans and don't seem to have a problem. I do know if I put butter on my muffins I get nauseas right away. so I stopped using it on them but does cooking with butter do something to the casein? I seem to tolerate yogurt to a point. Again not good in morning but rest of day okay although sometimes I do get the bump on the gum or a tingly sensation over my back and legs like hives are coming back. I was using ground flax in my yogurt the last 3 weeks and am thinking that is why I cannot tolerate yogurt as much?? who knows. I am not very good at figuring out my intolerances.

That sucks that no allergists understand MCAD - is there a group for that as well??

Is there a prescription anti histamine that I could get to help me as Claritin redi tabs have gelatin and I react to gelatin as well as malitol
Does LDN not have the same effect as Elavil?? If not, then has the research that you have seen from others here shown that there is more success with Elavil than LDN?

thanks again for all your help - you have giving me hope again.
barb

[barbiem]

just wondering if anyone had any success while in a flare to get massage therapy or chiropractor treatments?? I have swelling in my ankles now and feet and am thinking massage might help remove toxins??

[DebE13]

Entocort can cause adrenal fatigue?

[tex]

Hi Babs,

Sorry for the late response. I somehow missed seeing your post earlier. I'll try to answer your questions:

Like most medications, Entocort is effective in only about 60 to 70 % of cases. Some people have neurological reactions or other side effects from it, so they have to stop taking it, and for some people, it simply doesn't help to control their symptoms.

The colectomy was because I woke up one morning with massive bleeding in my colon, so removing it was necessary in order to save my life. During an emergency surgery, they removed my colon, cecum, and a short section of my ileum. The problem is apparently caused by a genetic defect that runs in my father's side of the family, and affects only males. My father and an uncle both died from the same problem. I had a close call, but I was lucky.

I can eat anything that is not listed under my avatar, except that I have to minimize fiber. I choose to eat a very limited selection of foods, simply because they work well, they're quick and easy to prepare, and I have no desire to eat exotic foods, or complex recipes. And I have no desire to be sick, of course, so I don't press my luck.

I don't understand why you feel that I should be depressed. If I have any reasons why I should be depressed, I've been overlooking them. As far as I'm concerned, depression is not an option, because that takes all the fun out of our life.

How is it that MCAD causes diarrhea - why hasn't my GI specialist advised me of this when she knows entocort isn't working and has even suggested taking out my large colon!!

Inappropriate mast cell degranulation causes intestinal inflammation, and intestinal inflammation causes diarrhea. Your doctor hasn't mentioned it because as I pointed out in my previous post, only a handful of doctors trained at Brigham and Women's Hospital have ever even heard of it, let alone understand the connection, and your doctor obviously isn't one of them. Any doctor who suggests a colectomy as a treatment for MC doesn't understand the disease at all, and doesn't have the foggiest idea how to treat it. Maybe she was trained at the Mayo Clinic. They seem to push that treatment there.

So you are saying if I take my entocort at lunch this is why I feel soooo awesome in the afternoon - should I maybe take 1 in the am 1 in the afternoon and then one around 5 or 6 or still take altogether just in the morning with my thyroid pill upon arising like suggested by you earlier (research showing all at once is best)??

If you intend to take Entocort for the rest of your life, you may be able to continue to eat yogurt and other foods that cause you to react, but you would still be better off taking the Entocort all at once, in the mornings, because as I said, it is the most effective that way. I doubt that your doctor will allow you to take Entocort for life, though, so if you want to stop the symptoms, you will need to stop eating the foods that cause the symptoms.

Ground flax seed is a laxative. That's not a good thing for someone who has MC to take.

That sucks that no allergists understand MCAD - is there a group for that as well??

As I said in my previous post, they are located at Brigham and Women's Hospital, in Boston. Here is a list that contains contact information for the only allergists (and GI specialists) that I am aware of who understand how mast cell problems are associated with MC, but surely there are others located somewhere. Dr. Castells or someone else at the hospital might be able to advise you as to whether or not they are aware of any qualified doctors located near you.

List Of Doctors Very Helpful For Treating Mast Cell Issues

Prescription antihistamines are just stronger versions of OTC antihistamines, but they usually have the same problems as OTC products, as far as inactive ingredients causing problems are concerned. You would have to check the ingredient list for them. I'm not familiar with them, because most of us don't use prescription antihistamines.

LDN is a totally different medication than Elavil, so it works completely differently. Naltrexone is an opioid receptor antagonist and Elavil is a tricyclic antidepressant. While some people find them to be helpful for MC, the odds that either one of them will help anyone is kind of a long shot. Elavil for example, has probably caused more cases of MC than it has helped to control. LDN is not known to cause MC, but it hasn't been shown to be very effective for treating it, either.

And in response to your last post, we have a few members who have found massages to be relaxing and helpful, and more members who have found acupuncture to be helpful. I'm not aware of any who go to chiropractors for anything other than joint adjustments, though (but maybe I'm overlooking someone).

You're very welcome,
Tex

[barbiem]

THank you again Tex for your amazing wealth of information!! You are now my go to guy LOLOL!!

So, can you tell me than what is the best option to treat those with MC and MCAD?? I am going to my allergist on the 22nd and would like to be really prepared with a ton of information !! thx!

Everything that you have told me now makes sense as I couldn't understand why certain times of the day I could get away with eating something then other times that food would bother me. Must have to do with how much entocort is still in my body right?

Since stopping the flax and going back to basics the diarrhea has stopped. But I still cannot eat anything other than beef, bison, chicken, green beans and carrots. Do others with MC tolerate sweet potatoes? or any other type of carb? Or will I be stuck for life eating what I mentioned above?

I must be a very weak person as I am soooo depressed with my issues yet you have pulled through something so much more severe and remain happy and okay with what you can eat. I just can't seem to accept this disease. I feel there has to be a cure out there somewhere that this just can't be it - steroids for life?!!

I did find a this link http://www.mastocytosis.ca/masto.htm which is a society for mastocytosis in Canada - is that the same thing?

I was speaking with a lady here in my town who has had MC for 10 years and still has to be on entocort. Do you believe an overgrowth of bacteria is the culprit?

thx again for chatting! and helping me!
babs

[DebE13]

Babes, don't feel like you're the only one......it took me years to develop a better attitude. I've always been pushed to take depression meds and continued to ask the doctors what taking the pill was going to do to change my situation? I was depressed because of my health and the social and personal impact it has on my life. There isn't a magic pill that will change that. For me, I needed to find a way to cope and come to terms with the changes in my life. Although, everyone is different and maybe the meds give them the bios they need to get over the hump. I have friends and family members who take depression meds and they seem to do well. It's a personal choice. I don't like taking any meds and the side effects of some just plain scar the pants off of me. Keep your determination and focus on the life ahead of you, not what you've lost. As Tex said, life is too short and there has to be some fun! MC has a way of undermining that.

I've been on entocort since Feb of 2012.

[tex]

So, can you tell me than what is the best option to treat those with MC and MCAD?? I am going to my allergist on the 22nd and would like to be really prepared with a ton of information !! thx!

Most of us on this board who have a mast cell problem do best if we avoid all of the foods that cause us to react, and take an OTC antihistamine at least once a day. Most members seem to have the best results if they take one in the morning, and one at bedtime. Benedryl is a good choice at night for most people, because it causes drowsiness, so it also helps them to sleep better.

I am guessing that your allergist will probably dispute all of this, because she is not likely to know anything about mast cells causing gastrointestinal problems.

Everything that you have told me now makes sense as I couldn't understand why certain times of the day I could get away with eating something then other times that food would bother me. Must have to do with how much entocort is still in my body right?

After taking Entocort, the time to peak concentration of budesonide in the bloodstream varies by the individual. For some patients the concentration reaches a peak in as little as 30 minutes, while for others it can take up to 10 hours. After that, the concentration slowly decreases. Some budesonide remains in the body for many weeks after the dosage is stopped.

Since stopping the flax and going back to basics the diarrhea has stopped. But I still cannot eat anything other than beef, bison, chicken, green beans and carrots. Do others with MC tolerate sweet potatoes? or any other type of carb? Or will I be stuck for life eating what I mentioned above?

Sure, some of us can eat sweet potatoes, and various other carbs, but that doesn't mean that anyone can eat them. We all have to try foods to see if they are safe, before adopting them into our diet.

After our gut heals, most of us can add foods back into our diet, by testing them, one at a time. But if we are sensitive to gluten, dairy, or soy, we will always have to avoid them.

I must be a very weak person as I am soooo depressed with my issues yet you have pulled through something so much more severe and remain happy and okay with what you can eat. I just can't seem to accept this disease. I feel there has to be a cure out there somewhere that this just can't be it - steroids for life?!!

This is a very depressing disease. Sure, I was depressed early on, when the doctors told me that there was nothing wrong with me (even though I was as sick as a dog), and I thought that I was doomed to be sick for the rest of my life. But after I discovered that certain foods in my diet were the problem, and I cut them out and and recovered, I was so happy to get my life back that there was no reason for me to be depressed. I was the happiest I'd ever been in my life.

We don't truly appreciate how good life is, until we lose the ability to enjoy it. If we're somehow able to get that ability to enjoy life back again, after we thought that we had lost it forever, then suddenly the grass seems greener, the sky is bluer, flowers smell sweeter, and everything around us takes on new meaning. We appreciate everything in the world around us, more than ever. It's truly like an epiphany. It's probably impossible to really appreciate the significance of that concept, unless we've actually been through it, but trust me, it's awesome.

I did find a this link http://www.mastocytosis.ca/masto.htm which is a society for mastocytosis in Canada - is that the same thing?

Yes, the mastocytosis society is the foremost source of information on mast cell issues. However, note that they deal primarily with systemic mastocytosis, not mast cell activation disorder. Most of us do not have systemic mastocytosis. Our problem is centered in our gut.

I was speaking with a lady here in my town who has had MC for 10 years and still has to be on entocort. Do you believe an overgrowth of bacteria is the culprit?

No, I believe that she has never changed her diet to eliminate the foods that are continuing to cause the inflammation in her intestines. Eating those inflammatory foods can cause the growth of bacteria that are detrimental to health. But the problem isn't the bacteria, it's the diet, because if the diet is corrected, those bacteria will cease to exist, in most cases.

If we avoid all the foods that cause us to react, most of us do not need any medications. All we have to do is watch our diet to stay healthy, and remain in remission. And those who still need to use a medication because they have too many food sensitivities to allow them to eat a reasonably-balanced diet, can almost always get by with a very low dose of Entocort, such as one pill every other day, or every third day, as long as they avoid all of their major food sensitivities.

You're very welcome,
Tex

[barbiem]

Hi again Tex - so what if you seem to intolerate almost everything except a few food items and keep losing weight and also suffer malabsorption issues and pancreatic enzyme insufficiency? what do we do then??

Can anyone hear testify if anti depressants helped you get through this rough time?? I was on paxil for 15 years and finally off 1 year ago and now thinking I should go back on. I can't seem to handle the fact I cannot eat anything.

My dietician just emailed me and they are going to send me to a malnutrition clinic and put me on some elemental food to keep me satiated and not starving all the time!!

this just seems to go on and on. will try an OTC antihistamine I guess. I don't think we have Claritin redi tabs here in Canada - what's the diference? I can't take Benadryl - it causes restless leg syndrome

thx for listening and any advice
babs

[barbiem]

what about white rice flour for recipes??? I am dying for carbs and have no idea what to eat that won't bother my stomach and cause a flare - any suggestions??

thxs again!

[lorimoose]

Hi Babs,

I use white rice flour, as a breading for chicken cutlets. I also eat rice or red potatoes with every meal. If rice agrees with you, I think the flour should be fine too.

I know the diet is limited, and frustrating, just figuring out what works for you. Once you heal, you may be able to add some foods back in.

We are here for you.

Lori

[barbiem]

thanks so much for the support all of you!! How long until you were able to add foods in? What exactly are we trying to heal?? I get that we are inflamed but if entocort is not allowing me to eat more foods does that mean my inflammation is large or just that entocort is not being fully absorbed since I have pancreatic insufficiency.
thxs

[tex]

Babs,

At first, everything seemed to make me sick too, but I kept a food and reaction diary, and after I had been gluten-free for about 6 months to a year, it was easier to see when various foods were a problem, by studying the diary.

Usually, when almost everything seems to be a problem, it's because something that we are eating (or using) every day is causing us to react. It could be a food, a supplement, a medication, a snack, a drink, soap, toothpaste, skin lotion, or a cosmetic product — anything that goes in our mouth or on our skin. Look over everything that you are eating or using, very, very carefully. Scrutinize it as though you are seeing it for the first time, and you don't know anything about it until you carefully read the label.

Most of us can handle white rice flour just fine, but unless you have had the stool tests at EnteroLab, it's impossible to guess whether or not it might be safe for you.

The elemental diet will help, and it will provide some time for you to reanalyze your diet to see if you can spot any problems that you may have been overlooking.

Are you still taking Mezavant? The active ingredient in Mezavant is mesalamine. Some of us cannot take mesalamine, because it causes us to react (despite being on a restricted diet). For anyone who is sensitive to NSAIDs, mesalamine causes the production of inflammatory leukotrines If I were in your situation, I would stop taking the Mezavant for a few days to see if that might help. If it's the problem, you should see a significant improvement in just 2 or 3 days. If stopping makes your symptoms worse, then obviously it is helping, and it's not the problem, so you should continue taking it.

I don't think we have Claritin redi tabs here in Canada - what's the diference?

The main difference is that in the U. S., Claritin contains lactose and the Claritin Redi-tabs do not. The formulations may be different in Canada, so you should always check the label.

Tex