Opinions please..

jmayk8 · Post by **jmayk8** » Fri Feb 24, 2012 4:33 pm

So for the past 2 weeks I was taking Cholestyramine powder to control my D until I got my MRT results back and started my diet. During that time I was able to drink my almond milk with no problem, eat rice w/out stomach noises and had perfect normans once a day. I also noticed that my acne started to go away and my scalp (that is ALWAYS itchy) was no longer an issue. I have been off the powder for about a week now and on my new MRT diet, I have a breakouts on my face and back again and my itchy scalp is back! I also tried a little rice today and my stomach started gurgling in like 20 min. I am pretty sure the Dr told me that the Cholestyramine powder wasn't a med for LC just a D controller but still, I seriously felt so much better on it. Can anyone help me to understand why??

Thanks
Jenny :)

Post by **tex** » Fri Feb 24, 2012 5:31 pm

Hi Jenny,

Your doctor is right - cholestyramine does nothing to relieve the inflammation associated with MC. One thing it will do, though, is relieve pruritus, (itching), in chronic cholestatic liver disease. If Cholestyramine relieves your mast cell symptoms, and they return when the treatment is discontinued, that suggests to me that your liver is involved, (IOW, an excess of mast cells/histamine in your liver), and there is a chance that you may have systemic mastocytosis. Remember, though - I'm no doctor, so I'm not trying to diagnose you - I'm just telling you my impression of what may be happening. For all I know, it may be possible for MCAD, (mast cell activation disorder), to cause a buildup of mast cells in the liver, also. Anyway, the point is, mast cell infiltration of the liver has been shown to be involved in systemic mastocytosis. This is old research, though, so as I mentioned, MCAD may be capable of doing that, as well.

http://www.ncbi.nlm.nih.gov/pubmed/3706370

Maybe Mary Beth or Julie have some insight on this.

Tex

DebE13 · Post by **DebE13** » Fri Feb 24, 2012 6:09 pm

Jenny- how much powder do you take a day? Just curious, my GI told me I could do a half scoop once a day. It'd didn't do anything so stopped using it.

jmayk8 · Post by **jmayk8** » Fri Feb 24, 2012 9:25 pm

Thanks for your info Tex,
What kind of doctor would I see for this? I feel like I am close to taking a step forward but, then now a huge step back. I am worried and want to see a doctor that will be able to help me find out what is going on..

Gabes-Apg · Post by **Gabes-Apg** » Fri Feb 24, 2012 9:33 pm

Jenny
with what i have experienced and learnt about the histamine ? mast cell issue - what tex is saying is worth pursuing.

when it became apparant that histamine was causing me serious symptoms, i went back and read the report from my colonscopy in August 2011, which said that my MC was in remission.
before the scope I had asked for the biopsys to be tested for mast cells. The GI shrugged and said we dont normally do that here in Australia so i am not sure if it can happen.
the test for the mast cell did happen, and i did have mildly elevated mast cell issues (which the GI chose to ignore)

based on all the discussions of the people on this board and how many have had mild to chronic histamine issues, the numbers are too high to ignore it

good luck

Gloria · Post by **Gloria** » Fri Feb 24, 2012 9:35 pm

Jenny,

You're fortunate to be living in the East. That's where the best mast cell doctors are located.

Here's a link to a list of doctors recommended by a Mast Cell Disorders forum:

http://mastcelldisorders.wallack.us/yab ... stodoctors

I haven't checked out any of these doctors; I've heard that Dr. Castells and Dr. Akin are the best, but it's apparently difficult to get an appointment with them.

Gloria

Post by **tex** » Fri Feb 24, 2012 9:39 pm

Jenny,

Only a handful of doctors in this country are qualified. You happen to be located close to the center of research for mast cell issues. Your best bet would probably be:

Dr. Mariana Castells
Brigham and Women's Hospital
Boston, MA
(617) 732-9850

http://physiciandirectory.brighamandwom ... id=0000698

Or someone there who has been trained by her.

EDIT: Oops - I see that Gloria posted the same general info before I did. (Looks like we're in agreement, anyway).

Tex

jmayk8 · Post by **jmayk8** » Fri Feb 24, 2012 10:12 pm

Thanks everyone. I am assuming its a mast cell issue and not something much worse.. I will try calling tomorrow but, since it's a Saturday I doubt anyone will be in the office. I have been doing some research online and was wondering if you guys knew if anyone on this forum tried gastrocom??

Gloria · Post by **Gloria** » Fri Feb 24, 2012 10:24 pm

I'm not aware of anyone on the forum who has tried Gastrocrom. It's extremely expensive w/o insurance and most doctors won't prescribe it unless they can document through testing that you have a mast cell disease.

Nasalcrom is made of the same main ingredient as Gastrocrom and is much less expensive. You can easily test it by buying it OTC and using it for a week or two. I'm not sure if it can be used long-term, however. I tested it last week for two days and had gas and gurgling for almost 24 hours straight, so I've stopped it. I used the recommended dosage; perhaps it was too much. Also, I was taking L-glutamine. I've stopped it, too, and the gurgling has stopped.

Gloria

jmayk8 · Post by **jmayk8** » Fri Feb 24, 2012 11:05 pm

Thanks, I will pick some up tomorrow..I tried the glutamine this past week too and it gave me the gurgles.

jmayk8 · Post by **jmayk8** » Fri Feb 24, 2012 11:10 pm

Gloria, would I use it as a nasal spray or as a liquid like the gastrocom?

DebE13 · Post by **DebE13** » Sat Feb 25, 2012 7:06 am

Jenny- I've been using the NasalCrom (nasal spray) for about a week now and I think it's worth trying. I ordered it on Amazon and it was about $13 for an .88 oz bottle. I didn't find any other form aside from the spray. It says to use it 3-4 times a day with a max of 6 times. Earlier in the week I was using it once in the AM and once before bed. I'm not sure what the best use is, I'm just guessing. I'm now trying just once in the morning to see if there's a noticiable difference. I'm also not sure how long I should continue taking it but the box says it may take up to 1-2 weeks to see the best effect but to consult a doctor if using for more than 12 weeks, but this is statement is related to treating allergy symptoms. I'm also using Histame so I'm not sure which is responsible for alieviating some of my sinus/eye & "fuzzy" ear issues. I've also noticed better formed BMs since I started taking this which is odd because I also dropped my dose of entorcort from 9 to 6 mgs. I have better form with less entocort so I think I have good indication that something is working.

Good luck with making your appointment, you're fortunate to be located in a good area for doctor contact. (I'm a bit jealous)

starfire · Post by **starfire** » Sat Feb 25, 2012 10:17 am

Deb, you mentioned "sinus/eye & "fuzzy" ear issues". I'm very interested in that statement and would love to hear more about your symptoms of eyes and ears. I feel that both my hearing and vision have been affected by something. They both seemed to get worse quickly, yet when I had my eye exam last year the Dr. didn't think anything was wrong. I had an apt to check my hearing but it was on the day of the flood here and I haven't made another apt.

If you don't want to discuss it here on the forum would you message me?

Love, Shirley

Gloria · Post by **Gloria** » Sat Feb 25, 2012 10:46 am

Deb,

I think it's encouraging that you've been able to drop your Entocort dosage and have improved BMs. Your experience has prompted me to try NasalCrom again at a lower dosage. Do keep us informed of your progress.

Jenny,

I followed the method Arlene (TooManyHats) used with the NasalCrom. I squirted it once in each nostril with my head tipped back. Then I let it drip down my throat so it would go to my stomach. Sometimes I would follow this with a small amount of water to wash it down. I could feel it dripping down my throat.

The prescribed method for taking Gastrocrom is to open an ampule, mix it with water, then drink the mixture 1/2 hour before each meal and at bedtime. I followed the same procedure with NasalCrom, but squirted it in my nose instead.

We had expressed concerns about Arlene squirting it in her nose so frequently. I'm wondering if it would be possible to simply squirt the NasalCrom into a glass of water and drink it like Gastrocrom. The active ingredient in NasalCrom is cromolyn sodium 5.2 mg; the inactive ingredients are benzalkonium chloride, edetate disodium, and purified water.

There has also been concern that long-term use of benzalkonium as a preservative in nasal sprays may cause swelling of mucosa and lead to rhinitis medicamentosa. Although some studies have found no correlation between use of benzalkonium chloride in nasal sprays and rhinitis medicamentosa,[17] others have found benzalkonium chloride in oxymetazoline nasal spray to worsen rhinitis medicamentosa in healthy volunteers after both long-term use[18][19] and short-term use.[20]

http://en.wikipedia.org/wiki/Benzalkonium_chloride

Here is some information about edetate disodium: http://www.drugs.com/mtm/edetate-disodium-edta.html
One of the precautions is for people with low potassium levels. I have a borderline low potassium level, so it may not be good for me to take it.

Each 5 mL ampule of Gastrocrom contains 100 mg cromolyn sodium, USP, in purified water. More information on it can be found here: http://www.drugs.com/pro/gastrocrom.html

Gloria

jmayk8 · Post by **jmayk8** » Sat Feb 25, 2012 11:03 am

Thanks Gloria, maybe I will just squirt some in a glass of water and see if that helps any...
Tex what are your opinions on that?
Also, these mast cell issues- are they another thing we need to deal with for the rest of our lives or do they go away at some point?