Mast Cell Disorders Forum

Mast Cell Disorders Forum
http://mastcelldisorders.wallack.us/yabb/YaBB.pl Support and Encouragement >> In need of encouragement RIGHT NOW! >> Can this really be? http://mastcelldisorders.wallack.us/yabb/YaBB.pl?num=1312853350 Message started by MastoGem on 08/08/11 at 14:29:10

Title: Can this really be?
Post by MastoGem on 08/08/11 at 14:29:10

I'm so sorry to be a downer. I'm hesitant to post this as I know it's hard for everyone, but I need help - I'm really struggling with this diagnosis. In my intro I explained that I've suffered from treatment resistant depression my whole life. It's not that I never feel joy, but the emotional pain is so frequent and much more intense than the joy. It's biological and it comes and goes with my symptoms.

It's just that I've always held on to the hope that one day I'd find the answer and feel better. Now that I have the answer and I'm reading that's it's a progressive disease and people feel worse over time - I feel destroyed and hopeless.

My hope that'd I'd feel better and not wanting to hurt my parents has kept me alive for a few decades. I've been waiting - waiting to feel better enought to get married and start a family and feel well enought to do a lot of things. I'm 41 now and please forgive me for sounding so negative, but it's really hard to picture a happy ending at the moment.

I don't suppose anyone could tell me that I have this thing all wrong - that I'm just wearing my old depression googles and after another week on the Gastrocrom I'll feel differently? Yes, I know, I could have AIDS or MS. I'll try to remember that.

Thank you.

Title: Re: Can this really be?
Post by Starflower on 08/08/11 at 16:25:16

Mast cell disorders are not always progressive. If you don't avoid your triggers, keep stress to a minimum, take your medications, etc... sure... things can get really bad! Sometimes even when you're doing all the right things you still have symptoms that are difficult to get under control. But, for most people getting on the right mixture of medications and figuring out their triggers (and avoiding them) makes a BIG difference. Most people can learn to live what feels like a pretty "normal" life even with a mast cell disorder.

Gastrocrom takes a while to take full effect... around two months. It's definitely worthwhile though. Quite a few people have reported that it helps with anxiety, irritability, and "brain fog." I truly hope it will help you with the depression that has been plaguing you for so long.

Heather

Title: Re: Can this really be?
Post by MastoGem on 08/09/11 at 03:30:15

THANK YOU so much Heather! That helps. And I didn't know it took two months. All good information. I really appreciate it.

Title: Re: Can this really be?
Post by Starflower on 08/09/11 at 06:48:56

Of course! We're here to support each other on our journeys :)

Heather

Title: Re: Can this really be?
Post by DeborahW, Founder on 08/09/11 at 15:52:55

What is your diagnosis? It is true, that many mast cell diseases DON'T get worse. It all depends if you learn how to take care of yourself (as HEather explained) or ignore it and surround yourself with triggers. Over the past 15 years, I have gotten so much better, it is amazing. The reason I started this forum was really to help others have the same success at getting better that I have had. Will everyone get better? I suppose not. Will many get better? Yes, if they educate themselves and take strides to take control of their condition. Trust me, I was literally barely able to walk and couldn't eat or sit up for over a month at my sickest! Now I can work out, coach crazy cheerleaders, and be the busy "supermommy"! It just took time, recuperation, and learning how to best help myself through the right meds, the right docs, and avoidance of triggers. You can do it, too!! :)

Title: Re: Can this really be?
Post by larken on 08/09/11 at 19:35:11

I'm so sorry to hear that you are depressed. I was the same way for many years. I just felt, well, flat. Nothing mattered. I felt really angry and restless at other times. I finally started seeing a psychiatrist.

That was around the time I was getting terrible stomach pains and gave up gluten. The positive improvement in my mood was amazing. But, after a few months I was feeling pretty down again. So, I gave up all dairy products. I had another huge improvement in my mood -- depression, anxiety and irritability lifted more. After that (and a lot of internet research), I decided to try the Failsafe elimination diet for a while to test for other things. This was before I knew anything about mast cell disease or "triggers".

I discovered that I was sensitive to dairy, soy, eggs, salicylates, and chocolate (HUGE mood issue for me). Yes, my diet is limited now, but the improvement in my mood is so big. If I cheat, I trigger and immediately feel irritable and down....plus other reactions, like worsening hives, palpitations, etc etc. Chocolate now makes me just crazy down and truly angry. My husband has made me promise that I warn him if I ever eat it again! Ha. When I think back to how depressed I felt for years, I wish I had tried the elimination diet earlier.

I know we are all different, but if you haven't tried an elimination diet to figure out food triggers, you may want to give it a try.

I really really hope you are feeling better soon. We all need to express our frustration and this is a good place to do it.

Title: Re: Can this really be?
Post by MastoGem on 08/11/11 at 01:11:45

Thank you!! I have been feeling MUCH better since I upped my meds considerably thanks to Romona's advice.

Thank you Larken for telling me about the food trigger. Boy! Are you right! It's HUGE for me too. I swear dairy makes me feel suicidal. Onions made me angry, etc., etc. Once I ate millet and surred my words and was unavailable to walk straight for hours!

I've got to work with a chef or something because I'm not sure what to eat.

I can eat nuts which is great, but I'm getting a lot more junk in the trunk and I know their off the histamine diet.

I can not eat:

Eggs
Dairy
Gluten
All grains, potatoes, etc - doc put me on SCD and she seemed to be right about that. I lie to myself sometimes about being able to eat a little rice.
Garlic
Onions
Bananas
Pineapple
Chocolate
Sugar

I'm wondering if I could go on a Raw Food diet just bc there seems to be so many things you can get just with fruits, nuts and vegetables.

THanks guys for your support. I really do feel MUCH BETTER having quadripled my meds. It really makes me wonder if my nice doc knows what she's doing, esp now that she wants to give me 'cluster immuno therapy'. :-/

Title: Re: Can this really be?
Post by DeborahW, Founder on 08/14/11 at 03:33:51

Chances are that your doctor has no clue what she is doing in regard to mast cell treatment. You should consult one of the specialists before trying this, as the wrong thing could make you permanently worse.

Be careful with raw veggies and fruits. Traditionally, those are the worst of the food triggers. I am pretty classic in that regard because I cannot eat many veggies or fruits (raw or cooked). I can eat some of them, but even a few bites of raw veggies will start up all my symptoms.

Title: Re: Can this really be?
Post by Riverwn on 08/21/11 at 18:35:16

Hi Gem, Im so glad to hear that you feel so much better!! I just started today to take doses of meds every 6 hours (while I am awake) -and its helping me feel better too :) You take care of yourself and ten points for being a GREAT advocate for yourself!!
hugs
Ramona

Title: Re: Can this really be?
Post by MastoGem on 08/22/11 at 03:27:56

Thanks Romona! I really hope that new med schedule works for you. I'm thinking about it now too, because although I've been feeling better at times - I still am triggering so much it's crazy. I'm just going thru way too much liquid benadryl.

Thanks so much for your encouragement. It means a lot. I got a call from Dr. Castells' nurse just now. At first it felt like she was trying to get rid of me a little - telling me about all these tests I had to take to prove I had a mast cell disorder. But after speaking with her and explaining my symptoms and biopsy results, she said she was going to tell them to give me a patient number and let me make an appointment! I got into Harvard! My patients will be so proud. lol. Not really, they still don't believe me that I even have this. :-[ :'( >:(

Anyway I wanted to share the good news with people who get it. I'm just so excited to talk to a doctor who knows what to do. Apparently I'm even going to have a BMB. I just can't wait to get the help I need.

Title: Re: Can this really be?
Post by Joan on 08/22/11 at 08:15:20

So glad to hear you're getting in to see Dr. Castells! What great news!

I just saw your post about food, and there's no doubt that food and mood do more than rhyme! My daughter turns really moody from chocolate, and it takes 3 days to get it out of her system! My husband read a book called The Primal Blueprint. It discusses a grain-free diet. Don't know whether it's exactly what you need, but it might have some good suggestions on how to get good nutrition without grains.

Keep us posted about Dr. Castells!

Title: Re: Can this really be?
Post by Riverwn on 08/22/11 at 17:05:07

Gem. wow! Im so excited for you!! I cant wait til you get to see Dr Castells, things are finally changing for you :) Just let me know what happens and know we will always be here for you!!
hugs
Ramona

Title: Re: Can this really be?
Post by iamnotalone on 08/24/11 at 06:57:03

Hi guys;
Ramona I'm prayin for you girl- that you find out whatever's triggering your shocking. I feel sooo bad for you :'(
I just found the Low Histamine diet yesterday. OMG- I've been eating all the Wrong foods- no wonder I feel so cruddy :o ! We have a bumper crop of tomatoes again, been eating them daily, also been on a cherry kick, & I love anything pickled, etc. etc. DUH !!! What is the Failsafe diet ? I'll try to look it up. I've kinda had a "screw this disease, Im not givin in" attitude, but now I realize I cant afford to be stupid about it either. Maybe that's why the fogginess, bitchiness, nausea is getting worse again?
I promise I will not take anything for granted anymore when it comes to this disease.
Hoping you all find some joy in today <3
lori

Title: Re: Can this really be?
Post by Joan on 08/24/11 at 12:42:58

Hi lori,

You can Google the Failsafe Diet. It eliminates a number of additives and foods believed to cause problems.

If you follow the low histamine diet religiously for a while, you could feel a whole lot better, and eventually, be able to add back a little of some "forbidden" foods every now and then. The point of it is to find the foods that trigger your symptoms or that are high in histamine so you can avoid them.

Hope it helps!

Title: Re: Can this really be?
Post by Riverwn on 08/27/11 at 06:38:45

Hi Lori !
Thanks for your kind and smart words, it means the world to me :) I got a bit negative and waited until I could sharpen my own priorities and straighten up to post again. I let myself become confused and it takes a bit to regain ground I had already conquered.
I now see some things very importantly. When I feel badly, I do 2 things;
1) increase my meds to every 6 hours (for some of them, not all of them)
2) I pare back my diet to strict low histamine again until stable--then add one new food every few days AFTER I am stable again.
These suggestions are so simple, I think we forget how important they are when we feel sick.
Hope it helps :)
Ramona