Newbie and Need Help!

[Deb]

Andi, start out easy on especially the kombucha if you haven't had it before. The FIRST time I drank it I had a very quick reaction of D. That was it though...it was really kind of strange (lots of bacteria starting to work?). I started drinking about 8 oz a day but now can drink 24 oz or more if I want without any negative reactions. For some reason it just feels really good in my belly (my daughter said the same thing when she drank it). After you learn to make it you can get more daring with flavors. I put mine in old wine bottles and use a wine bottle sealer. I let them sit for a while (sometimes even a few weeks) and it gets really nice and fizzy. Ginger is a flavor I really like but have been also doing hibiscus, which gives it a nice red color and is supposed to help blood pressure issues. The little scoby(ies) are really prolific....sometimes one grows in my sealed wine bottle.!

[brandy]

Hi Deb,

Thanks for posting about Kombucha! I'm kind of tired of sparkling water and iced tea so think I'll give it a try! Brandy

[Deb]

Brandy, it starts out sweet tasting but gets sour as it ferments. Start tasting it after about five days to get the taste you want. I like mine a little bit on the vinegary side and usually go about a week. Once you remove the scoby and rebottle it that (kind of) stops the fermenting process. That's also the time you can add additional flavors, fruit etc. Deb

[ZooMa]

Hi Guys, Sorry I haven't been on- my hard drive went in my computer!! AAAK! Back online now... So, I went to that stupid Dr today and she said my biopsy results for celiac came back negative. I asked her how many samples she took- she said 6. Okay wait- back up when they took my vitals- my anxiety-heart rate and BP were through the roof! She tells me to go to GP- I said GP wouldnt see me until you sent him something= I TRIED to get help!! She didn't talk to me at all about the LC. Guess it ain't no thing...(aaahh!!) she said I have GERD and a hiatial hernia as well as the ulcer she found in my stomach. I begged her to keep testing because I KNOW I HAVE THIS!!- When you Have it--you know!! You KNOW?? (sorry i'm going crazy) So she Says....I hate to run the celiac panel because it is very expensive...SCUSE ME WHAT??!! I SWEAR TO GOD- AND I HAD MY DH THERE WITH ME FOR A WITNESS- IT'S NOT JUST MY CRAZY BRAIN!! I SAID- I HAVE INSURANCE!!
So she says- well if you feel better gluten free then stay on gluten free and i will see you in sept.

READY FOR BEER AND PIZZA!! If I end up in the hospital will they help me?? :/

Deb, I have read that about the reactions to kombucha. I still have 3 weeks to go before I can brew- mine was dehydrated, it takes 4 weeks to come back to life. HOWEVER, I have been enjoying the water kefir sodas and they are wonderful!! So far I have made lemon/ginger and pomagrante/red raspberry.
With that, you soak the "grains" (they're not grains but cultures-they call them grains to mess with us) they're like little clear jelly blobs. I add 1 tbs of organic sugar to the water-dissolve the sugar and put the grains in- i use a qt jar. Coffee filter and rubber band the top and let sit for 24 hours. Then you add some juice/and/or fruit fresh or dehydrated. Cap it- i use mason jars but with saran wrap over the top first because metal isn't good for the cultures. Screw that lid on tight and let sit for another 24 hours ONLY- the fridge after 24 hours. But i have been drinking mine as soon as it's ready. It gets a little fizzy like a wine cooler. They are wonderful! Trying not to drink too much for the same reason...you can have a reaction...but they say it's flushing out the toxins!!

For my Kombucha, I found a wonderful water jug at an amish store- it looks like a mary engelbright cookie jar with the black and white checks and it has 3d fruit all over it- cute!! Plastic spigot too. That will be my kombucha hotel ;) You drain the brew off the bottom and feed the SCOBY's sweet tea from the top.

Deb, what do you do with your extra SCOBY's?? I've read they're great for your face!

[ZooMa]

Thanks Carol M...I can look into that. I think I need to do some independant testing. I want a diagnosis and some HELP.
they're just telling me i have all this shtuff and shoo me out the door- they're not helping me. shi* I can get nexium over the counter cant I? That's all they've given me. Not that I want to take pills...i want to heal and get better and i told her that.
OH- she also said that giving up gluten is hard enough she doesnt want to have me give up dairy and eggs and soy and onions So I said Look, I joined a support group and they are helping me- they live this. I wasn't feeling any better so I gave up the dairy. Really just replaced my milk with almond milk- she doesnt want me doing that? WHY? SHe's a sadist i swear. still have that pain- lower left from the colonoscopy- funny it never hurt like this before that surgery.
OKAY I'm done b^+chin now. :P xxoo

[Deb]

Andi, I have a lot of scobies go to waste (though I have no aversion to swallowing a small one that might be in my tea - sorry guys, don't mean to gross you out but they kind of look like a jellyfish). I give them away if I can but most people look at me like I'm crazy when I talk about them. :) I usually peel off the newest one that's formed and throw the older one out. I do keep a separate one going with the flavored ones (hibiscus, etc). just to make sure I don't have any issues. How do you use them on your face? Deb

[Fish2575]

Andi, I just read through this thread and I hope you are doing better! I don't even mention to my GI what I do with my diet because most GI docs don't think bowel disease has anything to do with food!

When I was first diagnosed I was in the same boat as you. Docs said I didn't have Celiac, but I definitely could not eat gluten. I did end up doing the enterolab testing because I just wanted to know. My gene test came back showing I have the gene for Celiac, and my labs showed major gluten sensitivity. That put my mind to rest, so you may want to consider it. BTW my GI still insists I don't have Celilac. Whatever!

[ZooMa]

Hi My friends, I wanted to post an update. Tried again to get in to my GP after waiting 2 weeks for my blood work to get back to him still to get treated for the anxiety. Had spoken to his nurse and told her the whole ordeal again and asked her to gather as many records as she can get from before I moved here. I told her I need someone to look at the whole big picture here and not all of the symptoms. She agreed and set a half hour appt for me. The day before the appt she called me and he doesn't want to see me because he says he knows nothing of gluten-free or Celiac. :( She said he can gove me a referral to a university hospital 200 miles away or a place 60 miles away that has a team of 4 gastro/hepatology Doctors. Also the Dr she mentioned sending me to is a D.O. Meanwhile- I last spoke to her on Tues and she left me hanging the rest of the week :( I still do not have an appointment and am trying to stay cool and calm because I am still having anxiety issues-the Dr issues making it 100 times worse I'm sure.

Amazing how going gluten free stopped the LC issues!

Deb, here is some info on using kombucha for your skin! I just started my kombucha brew yesterday. My Scoby was dehydrated so I had to let it revive for a month. I used black and green tea for the starter and the first brew is green tea.


http://www.deliciousobsessions.com/2011 ... ers-guide/

http://www.kombuchakamp.com/2011/05/kom ... cipes.html

Totally loving the water kefir! My favorites have been ruby red grapefruit- tastes like squirt but less sweet. Lemon ginger, Mojito- lime/mint, wild red raspberry, blueberry lemon. The blueberry is killer- it's so dark purple and you can't see through it= full of antioxidants :) and wow- it was so alive and fizzy it was fizzing like an alka seltzer was dropped in there. yum!
Another friend suggested I go Paleo/Primal in order to heal faster but I'm not willing to give up my kefir!! Ferments aren't allowed.

Hope you're all doing well! I'm hanging in there. xxoo

[tex]

The day before the appt she called me and he doesn't want to see me because he says he knows nothing of gluten-free or Celiac.

Did she happen to mention what planet he was from? It sounds as though he would greatly benefit from a few medical school refresher courses on gluten sensitivity and celiac disease, since those issues are so common here on planet Earth.

My guess is the bum was too arrogant to be willing to see a patient who uses diet changes to treat MC, so he just lied like a dog in order to get out of the appointment. He's probably one of those dinosaurs who still doesn't realize that what we eat affects digestive system issues. If so, you're better off without him.

Tex

[Deb]

ZooMa, thanks, I always have leftover scobies and plan to use them for my skin. I didn't realize ferments weren't allowed with paleo. Anybody know why that is?

[ZooMa]

Tex, I'm with you= I think it's high time he educates himself!! His nurse who has been helping me was also sent to the same GI and got the same results as me--still is no better and is floundering on her own also. She now believes she also has it (Celiac/gluten intolerance) so I hope she can persuade him to learn about it!! So frustrating to be doing this trial and error because of ignorant doctors. I almost hate them at this point but I am still hoping to find me a hero Dr! Sad isn't it!!??
At least the potty issues have stayed resolved. My Aunt who also has MC/CC had been suffering from chronic D also. She quit gluten and the D stopped for her as well. Her Dr's don't want to test her either. :( Makes me crazy when they LOOK at you and because you're not visibly malnourished and skinny they don't think you're sick!! The GI actually said that to me- that she can tell by looking at someone who has chron's that they are sick. Don't know why the hell she was talking about chrohns?? I WAS SPEAKING TO HER ABOUT CELIAC! I wish this pain on them- I truly do wish they all get it!!

Deb, I can't wait to have baby scobys! :) Trying to get my water kefir to reproduce. I have about a cup of scobys after a month. They're working great. Playing with the sugars and molasses so I have 2 jars going. Fun science projects.
I am interested on the "WHY" to no ferments also. I didn't get that far, my brain was on overload! Do you do Paleo? I was reading the Paleo forum. It seems as if a lot of you still eat rice. I was also wondering about beans. I like to eat black beans and garbanzos/hummus. I make them from dried.
Beans have never given me a problem or made me gassy so I am hoping to keep them in my diet as well. So confusing!!

Thanks for your help! :)

[Christine.]

Andi
I can't tolerate soy but lo and behold....beans seem fine. It is all such individual trial and error. dinner tonight was mustard and herb crusted rack of lamb, broiled onions drizzled with olive oil, cucumbers, onions and tomatoes in vinaigrette and crispy skinned smashed white rose potatoes with olive oil, salt & pepper. Who says gluten, soy, dairy and egg free is total deprivation?
Chris

[tex]

The GI actually said that to me- that she can tell by looking at someone who has chron's that they are sick.

She proudly displayed her lack of knowledge about MC with that statement, also. That's one of the differences between Crohn's disease and MC -- people with MC usually don't look sick, even when they feel like death warmed over.

dinner tonight was mustard and herb crusted rack of lamb, broiled onions drizzled with olive oil, cucumbers, onions and tomatoes in vinaigrette and crispy skinned smashed white rose potatoes with olive oil, salt & pepper. Who says gluten, soy, dairy and egg free is total deprivation?

Tex

[Deb]

Andi, I'm working my way toward paleo but I don't know if I will totally embrace it. I try to eat lower carb but occasionally have some rice or potato. I also have beans once in a while. The main concern with them is the lectins. http://www.livestrong.com/article/44814 ... aleo-food/
Christine, your meal sounds lovely. You're right...it's hard to feel too deprived when you can eat like that. Deb

[Christine.]

Tex
Comeonover......I'll do a repeat dinner for you. It was wonderful? You too, Deb
Christine