I have a few more questions, is Emergen C safe to drink every day? I'm interesting in trying that I actually have some already from the health food store.

Also is the Mucosaheal safe to take long term?

If we're unable to make the soup broth ourselves all the time is there a soup broth Jini recommends that I get from the health food store? I think it might help me stay on the shakes without food if I can have some soup broth every so often.

The company Juice Plus makes gummy vitamins, does Jini have any opinion on those?

Thanks!
Cristina

Hi Cristina,

Not sure about the gummy bears - check the ingredient list against guidelines given in the IBD Remission Diet book.

Yes, you can take Emergen-C long-term. Only side issue that's been raised is that the citrus may degrade tooth enamel over time - but then you can just rinse with water after if this is an issue.

Yes, you can also take MucosaHeal long-term as a preventative. Especially in your case (with EB) it might be a good idea.

take care,
Jini

Great, thanks Jini! I actually don't have any teeth left so the Emergen C is no problem for me, haha.

Why is that Cristina? Is losing teeth EB related?

take care,
Jini

Yes it is... for several reasons. In severe forms of EB it effects the tooth enamel also, plus since the mouth and gums are so fragile it makes brushing the teeth very hard and painful and because of extreme scarring it can makes the mouth so small that even fitting in a toothbrush is hard. So I just had my last 3 teeth pulled a few weeks ago. I had a hard time adjusting at first but now it's not so bad, I realize I should have always pureed my food because I end up eating much more, and it causes much less damage to my esophagus which will hopefully mean less surgeries to stretch open my esophagus. Right now I just need to heal my intestine so I can tolerate ANY food again!

Hugs,
Cristina

Just realized I forgot to answer your broth question: All of the broths I've seen packaged in tetra-paks are no good for an elemental diet because they contain thickeners. Basically, if the broth is clear, you can have it, but if it's cloudy, they've added something.

Many natural grocers now make organic chicken broth from scratch and sell it in either the meat or deli section - and it is just clear broth. That's the best way to get it, but much more expensive than making your own.

Don't forget, if you don't want to buy or cook a whole organic chicken to make your broth, you can usually buy cheaper organic chicken parts and boil those up to make broth. Today I brought organic chicken backs and necks for $1.47/package - 2 is all I need to make a whole pot of broth. If your local organic store doesn't sell these, ask the butcher as they can most likely package some up for you - many stores don't sell them as they think there's no demand, but they do have the chicken parts, if you ask.

I asked about your teeth since this is the latest issue I'm researching and experimenting with. I'm not happy with dental care/practices and am trying to develop an alternate protocol that works...haven't got it yet though!

take care,
Jini

Thanks Jini for all the broth suggestions, I didn't think about getting it in the deli section. We have a natural foo store called Jimbo's that sells fresh soup and stuff so I will check there.

That is so great you are looking into dental issues. It's been a struggle for me and many with EB, I finally just gave in. Many dentists seem to write us off that have EB and just figure we are going to lose our teeth anyway but it doesn't have to be like that. The worst part is I don't have enough bone left for implants and I can't wear dentures due to the fragility of my gums. I've never had a normal smile and wish more than anything I could at least have some pretty front teeth just for self esteem reasons but i'm not sure how to attach them without causing blisters. I plan to look into it though when I'm feeling better. Good luck with your endeavors, I can't wait to hear what you learn/discover!!!