I've been away from the raw food lifestyle for several months dealing with some health issues. Specifically interstitial cystitis. for those that don't konw, this is a chronic pain condition that affects the bladder and the food I eat affects it greatly. I've been feeling horrible and want to get back to the raw food lifestyle but don't think this is something I'll be able to do. There are so many things I CAN'T have. All these things make my illness worse. Forgive the long list, but I'm using it to give an example of what I'm being forced to remove from my diet:

Amaranth, grits, oatmeal, citrus juices, cranberry juice, most fruit juices, soy, almonds, cashews, tahini, sunflower seeds, filberts, hazelnuts, macadamia nuts, peanuts, pecans, pistachios, walnuts, avocado, beets, dandelion greens, eggplant, tomatoes, purslane, green onions, rutabagas, swiss chard, spinach, turnip greens, watercress, chili peppers, fava beans, lima beans, onions, bananas, blueberries, raisins, any citrus, currants, apples, mango (can only have in extremely small amounts), cherries, watermelon, apricots, cantaloupe, dried fruit, peaches, plums, figs, grapes, guava, kiwi, berries, passion fruit, papaya, persimmon, pineapple, star fruit.

It seems like this leaves me nothing but lettuce, broccoli, carrots, potatoes (cooked), a few beans and some pears. Once I get my illness under better control I'll be able to add back in some of the less "dangerous" culprits, like blueberries and watermelon or mangoes in small amounts, but there doesn't seem to be much hope for me in my opinion when it comes to the raw diet.

Is there anything I can still do to get back on the bandwagon? I felt so much better (not counting the IC) when I was eating raw but don't know where to go from here.

westiemom,

I have a friend with IC and when she looked at the list of verboten foods, she was like, "This is nuts! Everything that will keep me from developing cancer or diabetes is on this list!" Her doctor couldn't tell her why this exact list of things; you see the chemical compositions vary wildly, which made my friend determined to eke out some sort of functional diet from stuff that was less harmful. She's doing OK now.

You probably already know that "doctors don't know what causes IC," but they believe it isn't a pathogenic infection. They suspect an aberrant autoimmune response(how this is distinguished from a pathogenic insult, I don't get) that results in chronic inflammation of the inner bladder wall. It is considered to be aggravated by "acidic" foods, hence the food-exclusion list. However, many of the foods on the list are acidic only prior to digestion, after which they become alkalized and have presumably an alkalizing; that is, anti-inflammatory, affect on tissues.

Did you have flareups when you were still raw? What was your raw diet like then? How quickly do you have a flareup after consuming something from the list? Is it a confirmed "no" on all of those things for you specifically, or is this just a general guideline? Have you tried to consume small amounts of the healthier items in isolated meals or with something that isn't an irritant, say, lettuce? The choices seem really arbitrary to me: Why apples? Why not [anti-inflammatory]sulferous plants like watercress and dandelion greens, when broccoli is OK? Watermelon? Huh?

I really hope that there is a way out of this for you, and that we can help : )

It might be worth chacking to see if you actually have lyme disease, I saw this post on a curzone forum:

[www.curezone.com]
" I was diagnosed with IC 3 years ago after a lifetime of off & on "bladder infections." I'm now 46. I did not agree with my urologist that IC is incurable and you just need pain meds. He even told me I read too much! Thank God for the internet! I found a women nurse practitioner who specializes in IC. 100% of her patients have tested positive for lymes disease! She urged me to find a lyme disease doctor. Lymes disease is a spirochette disease that is very difficult to get rid of. You can get it from a tick bite or other biting insects such as mosquitos and lice. It has a VERY LONG life cycle compared to strep bacteria that can be killed with a few days of antibiotics. Most successful lyme treatment involves at least a year of antibiotics and/or herbal antibacterials. If the lyme theory is correct then that explains our "flares". It is the bacteria's life cycle. My lyme doctor beleives it could even be bartonella in the bladder. Bartonella is a co-infection of lymes disease. It causes blood vessels to multiply and grow. This could be what is going on in the bladder.

By the way, MY interstitial cystitis was never helped by diet alone. Antibiotics would usually quickly take care of the burning pain and beleive me I tried EVERYTHING natural I could find. It is either the antibiotics anti-inflammatory properties, OR it's killing the lyme (or whatever organism is living in there) OR it is causing the spirochettes to revert to a cyst form to come out at a later time.

Please do a little research on lymes disease. Look at the other symptoms, you may be suprised to find some that match yours. I hope this helps someone with this awful disease."



The Canadian Lyme Disease Foundation lists a bunch of diseases that can be mistaken for lyme disease including Interstitial Cystis.
[www.canlyme.com]

"Many Lyme patients were firstly diagnosed with other illnesses such as Juvenile Arthritis, Rheumatoid Arthritis, Reactive Arthritis, Infectious Arthritis, Osteoarthritis, Fibromyalgia, Raynaud's Syndrome, Chronic Fatigue Syndrome, Interstitial Cystis, Gastroesophageal Reflux Disease, Fifth Disease, Multiple Sclerosis, scleroderma, lupus, early ALS, early Alzheimers Disease, crohn's disease, ménières syndrome, reynaud's syndrome, sjogren's syndrome, irritable bowel syndrome, colitis, prostatitis, psychiatric disorders (bipolar, depression, etc.), encephalitis, sleep disorders, thyroid disease and various other illnesses.

If you have received one of these diagnoses please scroll down and see if you recognize a broader range of symptoms."

From Wiki:
[en.wikipedia.org]
"Lyme disease can affect multiple body systems, producing a range of potential symptoms. Not all patients with Lyme disease will have all symptoms, and many of the symptoms are not specific to Lyme disease but can occur in other diseases as well.
. . .
Diagnosis of late-stage Lyme disease is often difficult because of the multi-faceted appearance which can mimic symptoms of many other diseases. For this reason, a reviewer called Lyme the new "great imitator."[49] Lyme disease may be misdiagnosed as multiple sclerosis, rheumatoid arthritis, fibromyalgia, chronic fatigue syndrome (CFS), lupus, or other autoimmune and neurodegenerative diseases."



Edited 1 time(s). Last edit at 03/28/2009 07:01PM by tropical.

Some of these things can be added back in once I get my flares under control, but until then I'm extremely limited. After that it's trial and error to determine which foods are the culprit. I do know for a fact that tomatoes affect me almost immediately. Oh, how I'm going to miss my home grown tomatoes this year.

I've only been diagnosed since the end of January and I've been having a terrible time and am having to start over at square one with not only my medication, but my diet as well. I thought I'd had it all figured out, but now I'm not so sure. This is going to be alot more involved.

Also, some times (even though it doesn't make any sense) I can have one food and be fine, but if I combine it with another food in the same day or at the same time that will send me into IC hell. I do know that some of the foods I listed are milder than others and once I get things under control I should be able to eat them (hopefully) but right now I don't have many options and I don't know how long it will take to get things calmed down.

I have that problem, too. Some searches that have turned up some interesting information were IC + mycoplasma, virus+fungi+bacteria+ olive leaf, TH1 immunity + TH2 immunity. It seems as though a pathogen enters your body and starts to shut down your TH1 immunity. Then your body can't fight off virii, fungi, and bacterial issues. At the same time, your TH2 immunity revs up, and you start to overreact to foods, chemicals, meds, pollen, etc. So the trick may be to shift your immunity from TH2 to TH1 so that your immune system can clear out the pathogen. Antibiotics give only short term relief, and in the end make your immune system weaker.

I hope this helps. It's a very uncomfortable problem!

Violeta

Westiemom, (sorry this is long I tried to be as brief as I could)

I am sorry to hear of your struggles and I have been there too, just not as severe. Here are some thoughts (as brief as I can keep them) and, like any others, these are just my opinions.

I was completely convinced I was sugar intolerant and a good candidate for diabetes. I ate myself into a high-fat, high-salt raw food diet in a little over 1.5 years. I was miserable. A little over 1 month ago, I shifted to 80-10-10 a little weary that the sweet fruits I had attempted to eat with difficulty while high fat (grapes, strawberries, citrus, papaya, mango, etc) would cause me problems. While on high fat (plus some cooked) if I attempted these foods, my urine pH would plummet very acidic. I also fought massive cravings and would feel yeast infections, possible UTI would be on their way.

Here is what I discovered, my body loves 80-10-10. And, non-sweet fruits that I would only eat before (apples!!!) now cause me more issues than all the sweet fruits. I also found that increasing my fat up to 20-25% sends my body back into a tail-spin. If I try any cooked food (usually potato) I feel rather miserable. I also realized that I need at least 1 pound of greens a day (usually romaine lettuce but also spinach and other leafy greens).

I am trying to make this very brief but the point I am leading to is that your body might surprise you. My biggest advice would be to avoid grains and high fat a much as possible. And, try small amounts of the fruits on your can't have list in a green smoothie. Mono eating is also a great way to rule out what exactly aggravates you. And, like others may say, your emotional health is a big one. Consider EFT (Emotional Freedom Technique) to help you get through this big flare up phase. EFT is a method of tapping various acupuncture points on your body and has proven very beneficial for people with chronic pain, anxiety, depression, etc. (I hope the link works.)

[www.mercola.com]

Yes, these are my opinions and many will come on here and give there own and all might conflict. But, I was certain that 80-10-10 was "BS" and could never work for me since I had this underlying medical issue. I rationalized that I could get no worse off than I was and it was worth the try.

Good luck and take care.

Patty

I can't tell you how wonderful it feels to have someone who understands where I'm coming from. Now that I know there are other IC sufferers who eat raw, I know this is something I can concur and get back to the life I want! Thank you!

I've heard of the 80-10-10 method but have never tried it. Apparently what I'm going to have to do is just tough it out with a bland diet until things calm down and them start back adding in the more milder raw foods, even though what I want to do is just jump right back into raw.

The good thing about the allowable foods is that they are low fat.

Have you tried the various fruits on the forbidden list, and found that they truly cause your symptoms to flare? It may be that some people are affected by those foods, but if you are only eating raw foods, they may not affect you the same way.

The fruits that are forbidden seem to be the juicy fruits, probably because the IC has a frequent need to urinate as one of its major symptoms. However, I don't see water on your list of forbidden things.

Have you tried bananas? They don't have that much juice, and they are very satisfying. Make sure your bananas are ripe - not just yellow skins, but very freckled skins that are soft and pliable rather than stiff and full of cellulose.

I do know the problem with bananas is the potassium level. Foods with a high potassium level cause problems for me. As for the forbidden fruits I've been told it is because of their acidity, but I don't know alot about their content. Even though I've had IC for a long time, my symptoms were off and on. I was only doing the raw foods for a few months before it hit me like a ton of bricks and I finally received a diagnosis.

Actually water is wonderful for people with IC as it keeps the urine diluted. This does cause more frequency, but as long as its not painful frequency, I can handle it. My biggest problem is the pain and spasms, although we're all different.

I also know that some people with IC aren't affected by all the things on the list, but some are. I know for sure that some of the items affect me, but don't know yet about all. Right now I'm going through a horrible flare cycle and my doctor has pulled me off of everything but the blandest of foods and we are reworking my medications and trying new treatment methods to get things calmed down. Until that happens I can't find out if any of the other foods are tolerable or not.

I'm sure now that I know other IC sufferers are eating raw that I'll be okay, but I guess it's the current pain and stress of the situation taking over. I just worry that I'll be stuck eating plain rice, carrots, lettuce and potatoes only for the rest of my life. It's almost time for the best fruits to come out and I can just imagine the taste of them, but that's all I can do - imagine.

I was under the impresssion that a lot of the fruits on your list only turn acidic if ingested with other fruit or foods. Monoeaten, items like watermelon for ex are highly alkalizing. Maybe when eaten alone they woud work?

westiemom,

Potatoes, yams, and sweet potatoes are a better option that eating rice in terms of health, bone health, and osteoporosis.

What about fresh dates (barhi, deglet noors, honey, medjool), coconuts (young & mature), celery, cucumbers (slicers, lemon, english hothouse), cantalope, honeydew, crane melons, crenshaw, persian, jicama, yacon, sprouts (alfalfa, clover, sunflower), red bell peppers, tomatillos, cilantro, hemp seeds, sesame, daikon, burdock, kale, durian, tamarind, lychees, longans, mameys, sapotes, cherimoya, and mushrooms?



Edited 1 time(s). Last edit at 03/29/2009 05:48AM by Bryan.

I recommend acupuncture for the pain.

Westiemom, do you have estrogen dominance problems? I think estrogen can cause flareups.

violeta

Actually I have low estrogen problems since I had a hysterectomy several years ago. I'm taking HRT at the moment, but desperatly want to be able to get off of it.

Brian, thanks for the recommendations. Some of these I know I can't have, some I'll have to try out. I'm not compalaining, but I don't live in a very "produce variety abundant" area (Central Louisiana). I've found a few of these things at the higher end supermarkets and while money is tight, I'll add them in as I can. I'll definitely see what I can do though.

hmmmmmmm ...... connecting the dots ...... violeta's post and westiemom's reply.

If estrogen can cause flareups and HRT is the replacement for the estrogen .... could the HRT cause flareups ?
A possible experiment to try would be when a flareup occurs stop the HRT long enough to see if its aggravating the flareup or maybe even causing the flareup ? You may want to ask your Doctor about HRT and flareups.



Edited 1 time(s). Last edit at 03/29/2009 05:37PM by EZ rider.

I've honestly thought about that. Like I said I'm still new to the diagnosis so I'm still trying to figure everything out. The only thing is that I've had these flareups long before I started the HRT, I just didn't know what they were then. Although, if I think about it I've had crazy hormone issues all my life so that could definitely be something, but it seems this is the most stable my hormones have been. It's a shame they have to by fake.

I guess this is just another possible trigger to add to my list of things to attempt a trial run with after I get this current commotion settled down.

westiemom,

Is your HRT synthetic? These are highly acidifying. If your doctor knows of natural hormone therapy; Bioidentical Hormone Replacement Therapy, please have him or her look into it for you.

You know - it is synthetic. I wasn't aware of that and I'll definitely talk to my doctor about changing to something different.

Several days ago I watched a clip on youtube by Tonya Zarasta in which she said that before you start a raw food diet you must be convinced in your mind that it is the right way to get better. So you must read, read, research, and understand what it is all about and why one would chose that way to heal. Until one does that, it's rather difficult to get the body healed. Also, some people may do fine combining cooked food or medicine with a raw food diet, but for those of us who are sick, those things don't mix well with the diet. It's as if we have to make other choices besides what we will eat when we start this diet.

If you have a child you can control what they eat and help them get better without them being involved in the choices. But if you are an adult, you have to make all the choices yourself and believe what you are doing is right. Sometimes you don't go straight to feeling 100%, so beliefs are very important to get you through.

You have to remember, too, that a doctor is not going to look at things any other way that what he is recommending to you right now. If you want to go in a different direction, you may have to chose between what he is telling you and what you believe to be true.

Take care,

violeta

Violeta, Would you happen to have the link to that video? I'd love to see it.

She has several clips at youtube, and I watched all of them, so I don't know which one she said that in. If you google her name + youtube, you will see the choices. The videos aren't long, and they're all good. She's very inspriring, and beautiful and healthy looking.

Violeta

I'm so sorry, I spelled Tonya's last name wrong....it's Zavasta. I hope I didn't send you on a wild goose chase.

violeta