Gratitude

JFR · Post by **JFR** » Mon Apr 02, 2012 8:38 am

I am so grateful for this forum. I only found it a few days ago and posted once yesterday and got a really helpful response from Tex. I have been feeling pretty desperate lately and now have an approach to try that sounds promising and has already helped. Although I do not have a diagnosis of MC all my symptoms seem to indicate that it is the problem and since I have been dealing with this undiagnosed condition for at least 40 of my 63 years it is nice to know that there is something more I can do other than "learn to live with it" and a possible diagnosis that is more useful than the ubiquitous IBS. I already know that dietary changes help. I have been mostly paleo for about a decade and for a long time that seemed sufficient to at least let me leave the house (although not without some anxiety). Lately things have gotten much worse with almost constant severe watery D that keeps me pinned to the bathroom after every meal and beyond. What Tex suggested and what I have been researching since he mentioned it yesterday is mast cell issues. When I look over what I have been eating lately I find that there has been a huge increase in foods high in histamine so that seems a promising avenue to explore. I am writing this post to not only say that I am grateful to have found this forum but to also commit myself in writing to my new radical approach gf/df/sf/ef plus low histamine. I also ordered a test kit from enterolabs to check particularly about eggs and dairy. I have been gluten free for a long time and almost never have anything with soy. It sure is nice to find a community of people who understand.

Jean

starfire · Post by **starfire** » Mon Apr 02, 2012 9:43 am

Wow, I can't imagine living with this for 40 years and having no idea what causes it. I'm so sorry but I'm so glad you found this site. I'm sure it will be helpful. Actually, it helps a lot not to feel so alone as I'm sure you know.

Post by **tex** » Mon Apr 02, 2012 9:56 am

Jean,

I forgot to mention, in my previous post about mast cells, that many members with this problem find that taking an antihistamine, (in addition to minimizing histamine in the diet), can help to minimize symptoms. There are also some prescription drugs that can help, in severe cases.

Thank you so much for the kind words, and I hope that you will now finally be able to get much better control of your symptoms.

Tex

JFR · Post by **JFR** » Mon Apr 02, 2012 10:34 am

Starfire - Thanks for the reply. 43 years does sound like a long time but it was not always as bad as it is now. Somehow I just managed to work around it. My father was an MD and I would hear him talk about his hypochondriac patients and I knew that I didn't want to be that kind of person so I just soldiered on, mostly keeping it to myself and trying to adapt.

Tex- I will probably also try an antihistamine. Is any one better than another? I have some Allegra so I guess I will start there.

Thanks again,
Jean

Post by **tex** » Mon Apr 02, 2012 11:18 am

Everyone seems to have different success rates with various antihistamines. Benadryl seems to work for many people, and it's fine for occasional use, but it's not recommended for long-term use, for some reason or other. Theoretically, H2 antihistamines should work better than H1 antihistamines, since most of the histamine receptors in the digestive tract are of the H2 type. However, for some people, H2 blockers have been documented to trigger MC, so if one of them makes your symptoms worse, rather than better, that's the reason. H1 blockers don't generally carry that risk, but they're better at controlling classic allergy symptoms, rather than GI symptoms.

Allegra should be as good as any, to try first, especially if you seem to tolerate it well.

Tex

GRB · Post by **GRB** » Mon Apr 02, 2012 12:02 pm

Wonderful news JFR..I'm so happy for you.

Tex, would you mind explaining to me what 'long term use' means...is it duration and amount or just duration?

Thanks :0)
Gay

Post by **tex** » Mon Apr 02, 2012 1:03 pm

Gay,

I think I saw that caveat on a mast cell discussion board, somewhere. I got the impression that it referred mostly to everyday use, for many months or years. IOW, Benadryl is probably best used to treat symptoms, on an occasional, or short-term basis, rather than to be used as a long-term, every day, preventative measure.

If I remember correctly, the reason for limiting the use, is not because it would be dangerous to use, but in order to prevent the body from building up a tolerance for it, so that eventually it may no longer be effective, but I could be wrong about that.

Tex

brandy · Post by **brandy** » Mon Apr 02, 2012 3:05 pm

Hi Jean,

Just wanted to welcome you to the board! Tex usually has little jokes at the top although he doesn't seem to today. I've found everyone to be smart cookies and witty too! Brandy

DebE13 · Post by **DebE13** » Mon Apr 02, 2012 4:01 pm

Hi Jean- we seem to be on the same diet plan!

I don't like it at all but it sure will be worth the effort and restraint to see improvements. I'm experimenting with histame. I'm thinking I should just avoid them as much as possible but they seem to be what adds variety to the meat, potatoes, and rice. Good luck & I'd be interested in hearing what works for you.

JFR · Post by **JFR** » Mon Apr 02, 2012 5:36 pm

Thanks for the welcome folks. I appreciate the support.

Deb - I'll be interested to know how you do. It is challenging to try to eliminate so many foods. I am something of a carb addict so I haven't eaten rice or potatoes for years, although I am thinking of adding white rice into the mix, just for a little something different. Right now I am almost afraid to eat so I've stuck to grass fed beef burgers for about 3 days now. At least they don't send me immediately into the bathroom. I doubt how sustainable this will be for longterm:).

Jean

Joefnh · Post by **Joefnh** » Mon Apr 02, 2012 5:46 pm

Hi Jean and hello from New Hanoshire. 43 years is a long time to be dealing with MC. It sounds like you have discovered most of the issues in relation to diet. I hope you find some answers with the mast cell tests.

Last week I have my annual colonoscopy and my GI doc agreed to do both an upper and lower scope, with a total of 35 biopsies and about half of those looking for mast cell issues. I am currently awaiting those results.

You certainly are not alone as many of us haved lived for quite a while with theses symptoms. I hope you find relief soon

Take care

JFR · Post by **JFR** » Mon Apr 02, 2012 8:32 pm

Hi Joe - We're almost neighbors. I'm in Brattleboro Vt but I used to live in NH. Where in NH are you? It sounds like a long time when it's written down like that but going through it it's just been one day at a time and here I am all these years later. If it had been as severe as it is now for all those years I'd be singing a different tune. I noticed that you see a doctor in Nashua. If going it alone here doesn't do it I'll probably go see him.

Jean

Gloria · Post by **Gloria** » Wed Apr 04, 2012 9:46 pm

I think the concern about Benadryl is related to something I posted a few months ago:

Gloria wrote:I was reading a mast cell website post on Ketofin vs. gastrocrom: http://mastcelldisorders.lefora.com/201 ... astrocrom/ Someone made this comment:
Quote:
"I would also say to be careful of using Benadryl every day too--Benadryl effects an enzyme that allows mast cells to degrade faster. Benadryl is a great med--used as a rescue drug, not every day. I would use another antihistamine to replace it."

I haven't read anything else to back up this concern, however. If someone has, please share with us.

Gloria