KETOTIFEN as mast cell stabilizer -anyone use it???

[Leah]

Okay, I just re read the article and I am wrong. So sorry about that! What it was saying is that if this med starts working, then you'd have to slowly titrate the steroid that you are already using down slowly.
So sorry for worrying you bags!
Please let us know how it goes.
Leah

[tex]

It has a steroid-sparing effect, that allows it to be used to wean steroid-dependent individuals off steroids, but it doesn't appear to have any steroid effects itself.

A steroid-sparing effect of ketotifen in steroid dependent asthmatics.

Use of Ketotifen in Asthma

Tex

[barbiem]

thanks everyone for your input. Next question is can I still take it with the entocort or should I just get a compounded zantac or zyrtec or allegra??? I cannot handle the redi tabs - heart papls/racing due to the gelatin and mannitol. I just don't know what else to take to stop my reactions. thxs
barb

[tex]

Barb,

Your doctor should be able to tell you whether there is any advantage to using it with Entocort. Since it has steroid-sparing characteristics, the Entocort might be redundant (IOW unnecessary) if you take Ketotifen.

Tex

[barbiem]

LOL my doctor just basically gives me whatever I want to try as he is completely lost on what to do with me LOL. He just gave me a prescription for it and looked it up on the internet and didn't really say much except let's give it a try. He also gave me LDN to try as well. So I am quite confused by this mast cell issue - if it is mast cell issue then all I need is an anti histamine right? the internet says ketotifen is an anti histamine. I will check with my pharmacist first. Maybe I should see if they can compound me just a regular anti histamine. I am kindof on my own here and thank goodness for this group who knows a lot of info that drs don't even understand. My dr hasn't a clue what mast cell activation disorder is. So really, he just goes by my research LOL. Good dr though as willing to step outside the box with me!

thx everyone for being up on everything and helping me figure this stupid thing out!! LOL.

barb

[tex]

if it is mast cell issue then all I need is an anti histamine right?

Well, avoiding the foods that cause you to react is still the most important part of your recovery plan, but the antihistamine will definitely provide extra help to keep the mast cell activity from getting out of hand. The combination of diet changes and antihistamines seems to work pretty well for many members of this board.

Good luck with your treatment plan.

Tex

[barbiem]

yeah I get that about the food problem is I am severely underweight and can't seem to put weight on at all. currently 113 lbs at 5'6 and 48 yrs of age. They are going to put me on an elemental drink soon if I can't get some weight on. I live off chicken, beef, bison, green beans, carrots and SCD homemade yogurt with maple syrup. Currently 1 BM a day (recently YEAH!) but if I go off it any shape or form I react. Tried a tiny bit of egg white the other day and some baby yellow potatoes and am starting to itch again UGH! So I am needing to find away to eat or am I supposed to eat just more of those foods?? I cook everything in olive oil except the carrots LOL they are steamed really well!! I know you all keep saying you just need to cut out the foods that bother you but what if that leaves you with hardly any foods. I thought that is what the anti histamine helps with - allowing us to get more nutrients by eating a better variety of foods??
barb

[JFR]

Barb,

Just eat more of the foods you know you can tolerate. I lived on just a few foods for months.

Jean

[lorimoose]

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

I agree with Jean. I hope you will decide to give up dairy and increase the quantity of the foods that agree with you.

Lori

[Leah]

Barb, it sounds like you ARE healing, so give it some time. As your gut gets better and better, you may be able to handle more foods. The antihistamine will help with some of those foods, but if you are trying to gain weight, look for calorie dense ones. If you use olive oil, can you eat olives ( black ones packed in water) ? Have you tried various squash? it's not calorie dense, but it would give you more variety. Carrots rubbed with olive oil and roasted at 425 are really good. So are parsnips cooked this way. Do you know whether it was the egg or potato that you reacted to? It's important to only try one food at a time. Red potato seems to work best for me.
Good luck
Leah

[tex]

Carrots rubbed with olive oil and roasted at 425 are really good.

Barb,

That's 425 degrees F, which is the same as 218 degrees C.

Tex

[barbiem]

mmmm!! that sounds good - I wil try the carrots in the oven rubbed with olive oil. You have to remember I was a girl who lived on processed food and eating out fast food etc. So I am not creative in the kitchen at all. I haven't tried squash as nervous to. I have no idea if it was the potatoe or egg I reacted to but have not eaten any potatoes anymore. I had the best BM this morning though!! So weird!! my bowels seem not too bad but the itching has me worried more than anything and the racing heart which always happens after I eat. And the yogurt only bothers me in the morning never in the afternoon or the evening. so weird!!! I am slightly allergic to cashews but felt I needed some fat to feel satiated so ate some at work to get me through the morning. Heart started within 45 mins and has been going ever since. UGH! It usually lasts about 2 hours. drives me nuts!! I am going to try ghee (cooking my green beans in it to see if I can get more fat). Anyone else tried ghee?? Any other ideas to cook chicken, carrots, green beans and beef???

thxs you guys!! I look forward to always reading what you have to say!
barb

[dfpowell]

Babs,

I agree with Leah, only one new food at a time to see how you are reacting. A journal could help you keep track of the food changes that you make. Have you tried sweet potatoes or rice? Add olive oil to any of your foods for extra calories. How about coconut milk, and or sunflower butter, neither are a nut and are a good source of calories.

[barbiem]

Hi Donna, I have been food journaling for an entire year LOL!! Nothing makes sense because some days the food is okay and other days it is not. So I have cut back to just chicken, beef, bison, green beans and carrots and all are cooked in olive oil with s&p. I have fructose issues as well as allergic to all nuts and seeds (hence no sunflower butter etc as allergic t sunflower seeds). Will try coconut milk next. I know I should be removing the yogurt but that's the only fat I get! And one minute it agrees with me and the next it doesn't so I keep plugging away with it. It is my only treat with maple syrup 3x a day.

So, tonight I am trying salmon to see what happens LOL and I tried Ghee at lunch to cook my beans and not too bad but a little iffy.

barb

[tex]

Nothing makes sense because some days the food is okay and other days it is not.

Nothing makes sense because you appear to have mast cell activation disorder (MCAD). Inappropriate mast cell activation is a dose-dependent phenomena, meaning that you will do fine until you suddenly build up too many antihistamines and then a reaction is triggered (regardless of what you have been eating).

Additional evidence that you have MCAD is provided (IMO) by your postprandial tachycardia. Postprandial tachycardia is medical terminology (doctorspeak) that refers to an elevated heart rate after eating. Here's a link to a research article that discusses how this happens. The reason why the research was done on pythons, is because they all experience postprandial tachycardia. Most humans only exhibit minor postprandial tachycardia, so slight that most people never even notice it. With MCAD, however, the effect can be significant, such as in your case.

Histamine induces postprandial tachycardia through a direct effect on cardiac H2-receptors in pythons.

I'm not a doctor, so I can't diagnose you and recommend a treatment for you, but I can tell you what I would do if I were in that situation — I would try an H2 antihistamine, either immediately before, or during a meal, and if my theory is correct, the H2 antihistamine should reduce the symptoms.

Prescription forms of H2 antihistamines include:

Tagamet (cimetidine)
Pepcid (famotidine)
Axid (nizatidine)
Zantac (ranitidine)

Nonprescription (over the counter) forms include:

Tagamet-HB
Pepcid-AC
Axid AR
Zantac 75

Those may be slightly different in Canada.

It's very possible that you might even have systemic mastocytosis (the itching and tachycardia can be symptoms of mastocytosis). I would suggest that you should ask your doctor to order a tryptase test. The results of a tryptase test can be used to help diagnose mastocytosis or mast cell activation disorder. Your allergist might or might not be familiar with testing for mastocytosis, but the odds are relatively high what he or she will not be familiar with this, because most of them consider it to be a rare condition. So here's how you go about it:

In order to get useful data, your blood would need to be drawn for the test while the reaction is in progress. IOW, your blood would need to be tested while you have tachycardia, and/or itching. You can't wait to schedule a test after the symptoms begin, because once a reaction begins, your tryptase level will peak in approximately 2 hours, and then recede. If the blood is drawn too soon, or too late, your tryptase level will be normal. If you can catch it at the peak though, it will be diagnostic of either mastocytosis or mast cell activation disorder.

IOW, the blood draw would probably need to be done approximately 2 hours after a meal. So you would need to make arrangements, accordingly.

I suggest you print out this post, and show it to your doctor, to get his or her opinion.

Tex