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

[Leah]

Great information Tex.
Barb, I believe I also have mast cell issues, but have never been diagnosed. I take an Allegra in the AM and a Benadryl at night to help with the histamines. I also bought the supplement HISTAME ( which helps the body rid itself of histamines instead of blocking them) and I take one if I know I will be eating/drinking something I shouldn't. It has all helped. Google "low histamine foods" and look at the list. I know you don't eat many foods, but if you are eating leftovers, you are taking down too many high histamine foods and probably overloading your system and making things worse.

When it comes to testing foods, the best way is to add only one thing in for three consecutive days, increasing the amount of the food with each day. If mast cells/histamines are you main problem and you get a grip on that, then you may be able to eat more foods then you think down the road.

Leah

[barbiem]

Thanks Leah that's awesome advice!! So I will just add in cauliflower today just a bit right? then again tomorrow and Monday. I have stopped with the next day leftovers and do feel better - always wondered why I hated the taste of meat leftover - could never eat it anyway!

I do have some histame here that I ordered a long time ago when really sick but didn't really try it as everything bothered me then. Maybe I should try it again??

But I am getting a prescription for the Ketotifen and my pharmacist advised it is a antihistamine and fine to take with entocort. I will try that first I guess and I am also getting a prescription filled for LDN. Hoping somewhere something will work.

thxs
b

[wmonique2]

Leah,

I see you take 2 H-1 receptors antihistamine...any side effects from it? I am trying to reduce my mesalamine because of elevated liver enzymes recently diagnosed but I got nausea back within days. I also take allegra (fexofenadine) in the morning and aleve at night. I am wondering if taking a benadryl would allow me to reduce my mesalamine dosage.

Any issues with this double dose, Leah?

Thanks,

Monique

[Leah]

I don't feel any adverse side effects so far, but I can't say how it will effect someone else. What pain are you taking the Aleve for?

Leah

[wmonique2]

Leah,

sorry I meant elavil which is also for the mast cells, my biggest problem. I also follow the low histamine diet.

Monique

[darlagroat]

I too, think I might have mast cell issues. I have been trying to stick with "safe" foods and have been making a pot of chicken soup with potato, carrot, celery and putting it in the fridge. I have pretty much been eating this 2 to 3 times per day. But.... if leftovers are not good, then how do you all manage this? I don't know how I could manage making fresh food for every meal, but is that what is required, or am I going down the wrong trail?

I am presently tapering the prednisone I have been on, and I don't believe it has helped any more than the budesonide did. Norman is nowhere to be found. I am kind of over the idea that drugs will help at all for me. I do not want to take the ever stronger and more toxic things on the table. I have cut out red wine and avocado, and most spices, low fiber, no fresh fruit or vegetables, dairy, gluten, soy, egg, white rice, tuna, almonds and oats (per enterolab results). Yikes!!

[barbiem]

I hear ya !! What I do with the soup is freeze small containers full and take out one container per day and defrost it. Also, I react to chicken soup if cooked too long due to the gelatin so I only cook the broth for 2 hours and immediately freeze it - just chicken cooked with carrots and celery and s and p - no garlic due to fodmaps diet for me as well UGH!! Then I strain and food processor the carrots and pour them back into just the broth. I seem to be able to handle that in little bits but at the beginning it made me soooo nauseas!! I think Tex said we could eat say left over chicken from lunch for dinner but nothing later than that. I have been unable to give up my homemade yogurt so I just try to eat it when I think my histamine levels are low. I also have only 5 foods to eat (chicken, beef, carrots, green beans and yogurt ). Skinny minny is my middle name now LOL!!

I found this site that someone must have posted here for me or from somewhere else: http://www.iamast.com/beginners-terms/4572255241 great for explaining mast cell.

I haven't tried any antihistamine yet as the fillers bother me so getting ketotifen this week compounded and LDN as well. Hoping to have even a little bit of success.
THis is a great group to run ideas off of - like them better then the SCD group as they can be a little harsh sometimes

barb

[wmonique2]

Leah,

Why 2 different kinds of anti-histamines? Why not just take 2 doses of the one that works for you? I am thinking of doubling my anti-histamine and reducing mesalamine to see if that works regarding liver enzymes...

If anyone has a better solution, chime in.

Monique

[lorimoose]

Hi Monique,

I take benedryl at night, because it helps me sleep and I think of it as LC insurance. Also, my reactions seem to be more controlled, but that could be for several reasons; I seem to have the diet working (for the moment), and 3 weeks ago I went back on to Lialda, &the benedryl.

I think if you took benedryl during the day, so might be very sleepy.

How long have you been on the Mesalaime (same family of drugs as Lialda)?

Lori

[wmonique2]

Hi Lori,

I've been on Lialda for nearly 3 years (two and half to be exact) and I added elavil because of the mast cells. I take 3 lialda (1.2 each). I used to take the protocol which is 2 a day but had to increase when I was getting nausea again. I believe that they become less effective the longer you take them. My biggest problem is nausea and cramps. Lialda pretty much eliminated all the D. I have never had D since I was diagnosed. In summary, I take 3 lialda, 1 elavil at night and I added one allegra.
That's my regimen. Not happy that lately I found out that my liver enzymes were elevated (lialda will do that to you). It will either affect the liver or the kidneys.

That's why I am trying to find out if I can lower the lialda without suffering from nausea again. I tried to eliminate one pill but managed only to do it for 9 days before the nausea came back.

Monique

[lorimoose]

Monique,

I have been lucky not to have nausea as a symptom with LC. Pain and diarrhea are my symptoms.

6 years ago I had a partial gastrectomy, and I was nauseous whenever I ate carbs. Finally, the doctor gave me compazine, and it takes the nausea away within 10 minutes. I took it fairly often that first year. I still have to balance carbs with protein, and if I were to have something very sweet I would need to take a compazine. However, things are much, much better, and it is rare for me to have that problem.

Would that be something that could help you, or is it contradicted?

Lori

[wmonique2]

Hi Lori,

I don't know anyone on this board who takes compazine. Many of us with nausea take elavil. It does the job. Maybe compazine is better, I need to ask about it. I am waiting for the first of the year (when obamacare will kick in) when I'll have insurance to go to my doc and discuss things with him.

It's interesting that you narrowed it down to the fact that carbs give you nausea. It is possible that I could get D if I stopped taking lialda. I have never tried it. I do know for a fact that mast cells are a huge issue for me. Nausea had kept me bedridden for a long time until I was given elavil. But I want to find a solution for the elevated liver enzymes. Do you have that? How long have you been on lialda?

Monique

[barbiem]

I couldn't do mesalmaine/asacol at all - major D from them. Only entocort for me. I will only be trying 1 antihistamine to start Ketotifen. cannot do Benadryl - gives me restless leg syndrome how weird is that!!! Same with Dimetapp so I am hoping ketotifen doesn't have the same substance!!

I also get nauseas but from anything with fat hence the reason I don't eat fat and can't put weight on I guess even though I take a pancreatic enzyme (prescription)! Isn't getting nauseas after eating a sign of mast cell issue?? I was very nauseas at the beginning of my disease but that was because I was eating the wrong foods. I didn't know Elavil helps with carbs???? how does that work for that??

barb

[lorimoose]

Hi Monique,

I did not figure out the carb issue on my own. I had a rare digestive cancer, and the gastrectomy....then joined a support group with people who had been through it all. They saved my life, because just like LC, Gastrointestinal stromal tumors are rare, and often not treated appropriately by much of the oncology community. The protein carb connection is big for me...but we are all different. Living in NY and having access to NYU hospital, and Sloan Kettering was a big plus, but the best advise I got was from the G.I.S.T community. I will always be checked for recurrences, but so far so good.

Once, it was confirmed to me that I was lucky not to have a recurrence of cancer, and got the LC diagnosis, I tried the GI plan of action. When it failed, I found this community, and have taken responsibility for my healing, with the help of a sweet, but not fully on board GI. He has provided the right scripts, and thinks that gluten intolerance may exist...baby steps for him.

I was on Lialda for 3 months, but then had to bump up to entocort. 8 weeks on entocort, but so many side effects. I have been back on 2 Liadama day for 3 weeks now, and so far so good. I will probably have labs done in january, but if I continue to do well, I would like to start tapering in January.

Nausea really makes EVERYTHING worse, and I hope you find a way to resolve it, and feel good too.

Warmly,
Lori

[Leah]

HI Monique.
I think that Benadryl actually works best, but like others have said, it makes me drowsy, so I take it at night only….. plus, it's only a 4-6 hour drug. The Allegra is a 24 hr. one, but it doesn't seem to do quite enough.
Leah