Friday, October 11, 2013

Total Body Modification...STARTED

One thing that annoys me when reading IC patient stories is that so few of us follow up on how we're doing and how things are going in the long-term. I love the little group of gals I have going on the IC Network because it seems that we all stay connected and keep updating each other! Thank you! I can't tell you how helpful this has been to me in my journey of HEALING.

So, in the spirit of updates, I wanted to let you know how I'm doing this week.

Last week, I started doing Total Body Modification treatments. It's another one of those crazy quacky voo-doo natural healing things that I 100% believe in. One hundred-percent. Now, whether or not TBM is right for my system and my body is another issue that I will find out over time! Obviously.  After my NAET-like treatments worked for only 2 weeks, I was at first devastated but later inspired because I realized that there IS something out there that can resolve my food intolerances, and thus the main source for what ails my version of IC. Remember, my thesis is that IC is a systemic issue that is simply manifested in the bladder, and that if I find what is ailing me in my body, I will resolve my IC. Most recently, after I felt so amazing after my NAET-like treatments, I realized that Food intolerances were my main issue with IC

Ok, so back to TBM...I was interested in it because I read that many people reversed food intolerances by doing TBM. I went ahead and found a chiropractor (who is actually well known in the area as a very reputable doctor...I called around and asked my own trusted Chiro about her) who does TBM. All last week, she began her treatment. Basically 'treatment' involves muscle testing, and then adjusting or applying different but specific types of pressure or modification to specific points in the body. These modifications, I have found, have been minimally invasive. I am pregnant, and I wouldn't do anything that would be very 'rough' or possibly jarring to my body. So don't picture me on some chiropractic table being folded into a pretzel with Olga jumping on my back with her elbows. It's very gentle and relaxing. Sometimes I'm sitting up, other times I'm laying down.  Anyhow, the treatments have been very relaxing, and I usually went home feeling emotionally well.

Well, after each of my first 3 treatments, I would go home and get really busy with the other 3 kids, and completely forget about my TBM treatment earlier that day. But, within a few hours I would be HIT HARD with fatigue. I would feel SO SO TIRED! For example, it would be 4 pm, but it felt like midnight. I felt SO tired that I even compared it to how I normally feel after I give birth. Like very very tired. Thank heavens my mom is here helping out, and I could go lay down and rest. It was only at my 3rd TBM treatment that I picked up on the pattern: My extreme fatigue was only happening after my TBM treatments. To me, rest and sleeping is the body's way of healing itself, so to me, I felt reassured that these TBM treatments were indeed doing SOMETHING in the form of healing. But, I was still pretty skeptical as to whether or not I would/will reverse my food intolerances. Honestly, I'm still a little skeptical.

Yesterday I had my most recent TBM. The doctor did a specific treatment for the GRAINS. Dun-dun-dun....

I came home, and had these yummy rice-based veggie sticks a few hours after I got home. No bladder reaction. Then at dinner I had a slice of toast. NO bladder reaction. I did feel a little bit of heartburn, but this is probably pregnancy related as I get lots of this anyways with everything I eat. This morning I had 2 slices of divine toast. I had organic butter on it and it was yummy. Again, so far so good and no bladder reaction. I want to note that I had a slice of toast last week just to 'see' if for sure the previous NAET-like treatments were not working. Indeed, I had a very clear bladder reaction. No burning, but pressure, and feeling full when I wasn't full. So compared to last week, the TBM seems to be having an impact on my bladder! 

Now, I will continue to do TBM 1-2 times a week and slowly deal with other ingredients that I'm intolerant to. I will check back again later. My next appointment is on Monday. Stay tuned.

It will be interesting to see how permanently these treatments will hold, how many of the ingredients I'm intolerant to will actually be impacted by TBM, and if this is a long-term solution to my IC problem. Remember, the goal is REVERSAL! I hope that TBM will 'stick' longer than the NAET-like treatments did.

Finally, I thought I'd mention that although my NAET-like treatments were pretty expensive (over a hundie per treatment), these TBM ones are very affordable...25 bucks for a short session and 40 bucks for a long session. So far, I've been doing short sessions. I 100% feel like managing my finances will manage my stress which will manage my IC  So I thought I'd mention that too.

Remember, these are only my experiences. I'm not prescribing these to anyone. But, like I said, in the spirit of keeping everyone updated, there is my status update! If your IC seems to be a food-intolerance issue, I highly recommend exploring the food-intolerance reversal stuff I have been exploring. Don't rule something out just because it didn't work for me. Your body is different and what works for you may not work for me (and vica-versa, of course).

Here's to your healing and REMISSION gals and guys.

Best and hugs to all.

Monday, September 30, 2013

Everything has been a little crazy!

Hi Ladies! Sorry I went MIA for a while. Thanks to my IC pal Laura, I thought I'd update...

Things haven't been the best around here...but it's been an interesting journey, and I'm only renewed (and honestly a little tired at the same time) in my journey to find my cure.

So, yes, I got pregnant. This was a great surprise.  Then I felt great for like 2 weeks. Perfectly. I know that elevated hormones help my IC. Except for the morning sickness, all was peachy king. Then things started to slip and things that I could eat before started becoming a problem. That scares me. My list cannot become longer, right?

So I flew to Arizona for a SECOND round of NAET-like treatments (AAR) with a Dr. Dyllan Foster (see my checklist for more info). These NAET-like treatments are formally called "Advanced Allergy Relief" (AAR). I chose to do the treatments with Dr. Foster, rather than doing them with someone local here, because I really feel like he's perfected his method and approach. He uses a machine called BioVeda's machine BAX 3000 (I did my research on it and gave it a thumbs up), and because I've heard that NAET can be a little hit-and-miss for IC patients, I felt like his AAR approach and application was a little better than the traditional NAET stuff. Basically, in other words, if I was going to do NAET, then I wanted to do the best 'version' possible for me and my bod. That's why I picked AAR. I'm not necessarily making any recommendations. Just sharing my journey and happenings.

Anyhow round 1 of the NAET-like treatments (AAR) with Dr. Foster really didn't do much for me (I did round 1 like 8 months ago), but according to Dr. Foster, some people need up to 3 rounds. I was desperate to feed me and my baby more food, so I flew down for 2 weeks. He can do 2 treatments of food-groups per day, so I planned for 2 weeks (assuming that I'd be all over the place with food allergies). I was right. He said that he has never seen someone come back with so many groups of food that needed RE-treatment (round 2). I did the treatments. It was amazing. I have 2 'friends' who did the treatments (really they're friends of friends), and they worked like magic for them. These people don't have IC, but they have autoimmune issues that are food-based. Anyhow, by the end of the 2 weeks that I was in Az, I was literally eating whatever the heck I wanted. It was great...while it lasted.

By the time I came home, I felt that the treatments were slipping a bit. Indeed they were. This is not unheard of. NAET and Advanced Allergy Relief treatments don't always 'hold'. I didn't know exactly what that meant, and I didn't know what that would look like for me. Again, Dr. Foster would say that he has never had to re-treat people more than 3 times. At this point, I'm skeptical if his NAET-like treatments are right for ME. ****I 100% think they work for some people,*** but much like IC and other chronic diseases, I think the journey is finding the right puzzle piece that works for us in our healing. My body may simply not respond to NAET/AAR as well as your body may. I go back to AZ for Christmas with my family to visit my hubby's family (big reunion. Get excited...cowboys and boots...he comes from a very WESTERN family, although he's not much of a cowboy himself ). I will go and see Dr. Foster and probably do my 3rd round. 

At this point however, I'm not convinced that NAET/AAR is really the right path for me. One aspect of the problem is that I'm pregnant. Dr. Foster says that he's only had to retreat people up to 3 times under NORMAL circumstances. An abnormal circumstance would include anyone who has had something significant that would throw your system 'off balance' like, say, a pregnancy, or a surgery, or a car accident, etc. These things would merit a 4th treatment, perhaps. But each treatment is supposed to make your system stronger and more resiliant. 

For me, one tell-tale sign as to whether or not I will continue to pursue Dr. Foster's NAET will be when I go back and muscle test for my food allergies this December. If my results come back with a high amount of intolerances, then I think it may be a big indication that (maybe?) his treatments aren't for me. Again, when I came back this time, he said that he's never had such a long list of foods that needed RE-treatment on a person. But then again, maybe pregnancy really (really) doesn't agree with my body and IC. Maybe Dr. Foster's treatments will hold better when I'm not pregnant!? Maybe maybe maybe. Who knows? I am tempted to throw in the towel and give up. I was so disappointed to have eaten like an organic queen for about 2 weeks, only to have to go back to my limited-diet ways. The nice thing is that Dr. Foster charges 1/2 price for any re-treatment, so it's not that expensive. But money finds a way of leaving my house faster than it comes in.

But the truth is that something out there with Dr. Foster worked for a couple of weeks. It was real. I was perfectly fine, temporarily. My IC WAS FREAKING GONE FOR TWO WEEKS AND I ATE MUCH OF WHATEVER I WANTED. This tells me 3 things:

1) Fixing food intolerances, for me is the way to go. I'm going to stop looking for other issues in my body. I don't have candida. I don't have pudendal nerve problems. Hormone issues are really minimal (and my hormone levels have checked out as 'normal' time and time again! My IC is a food problem. That's my source. I'm 100% focused on that now.  I'm going to spend more time researching how to reverse food intolerances instead of researching how to reverse IC.

2) I now have confirmation that there is something out there that can reverse my food intolerance. Something DID work for me, albeit for only 2 weeks, but it was real and it worked. So I'm going to find my niche and reverse this IC bitch  (pardon my French. I swear more when I'm pregnant. Give me 6 or so more months and I'll tone it down :)

3) After my 2nd round of the Arizona NAET-treamtents, my IC is different. The burning is almost totally completely gone. I'm just left with frequency and sometimes a slightly spastic urethra (when I eat dairy). Before, I would have all these symptoms plus that BURNING BURNING BURNING. Sorry. You know what I'm talking need to be overly descriptive . I think that modified symptoms are yet another sign that something real happened, and that I can expect a cure in the future!

In the meantime, I'm not giving up. I think I've been more emotional and perhaps a little more disheartened than usual. When my food intolerances creeped back, I was found sobbing in my room... but let's be honest, I'm pregnant and I cried when me and my kids were watching Mulan. Right. It's a Disney movie. Mulan, people! Yes. I'm probably a little more emotional than normal!

Here's my plan right now: I found a neat chiropractor that is does something called Total Body Modification (I heard about it on YouTube of all places... has a pretty neat story. She doesn't have IC, but sheesh, after hearing her tale, I felt pretty bad for what she'd gone through). 

So right now, I'm seeing a lady named Dr. Erica Statman in the Fairfax, VA area. I just went to her last week. It was just a get-to-know you visit, but her pricing is very affordable (between 25-40 dollars after the first initial visit). My specialist co-pays are 30$ anyways, so this is pretty good pricing! The bonus is that she specializes in working with pregnant women and children. That made me happy because, you know, I'm pregnant and food intolerances are definitely linked to my pregnancies. Oh, and like the AZ stuff, I can do TBM while pregnant. 

Dr. Statman also told me that she felt like NAET was rather inconsistent. She said that it's amazing, it works for many people, and that she herself used to do these treatments, but she also felt like the results were inconsistent, and for someone who is paying cash for the treatments (no insurance coverage!), she needed something that was more consistent. Enter TBM.  

Looking forward: 

Dr. Statman was also very honest with me. She told me that her son had a lot of food-intolerance problems, and that neither NAET nor TBM worked for him, but that there's a doctor about two hours away that she said "is most prolific in reversing food allergies." She wants me to go see him after the pregnancy is over. His name is Dr. Richard E. Layton, and he does Low Dose Allergy. If I choose to go to him after baby is here, it will be a bit of a drive for me, and it will be expensive when you factor in the treatments (no insurance, of course), and the driving gas, etc, but I will do what it takes to get my life back. Some people spend hoards and get into debt for infertility/adoption...well, I'm willing to do what it takes to get better. 

So, in addition to TBM, I have other things I'm keeping in my back pocket to reverse my food allergies. Here is my ongoing list of potential treatments:
-Advanced Allergy Relief (similar to NAET but different): Hasn't worked for me thus far.
-NAET: I never tried it, and I don't think I plan to since I did AAR.
-BioSET. More info here: Haven't tried it.
-Helminthic Therapy that  I heard about here (careful...if you easily feel squeamish, prepare yourself!): Hopefully this will be my last resort and I won't need it.

I 100% believe I will get better someday. Sooner than later. Those 2 weeks of eating whatever I wanted were only an indication that I CAN GET BETTER. I have to see it that way, because that's what it is. There are answers for me out there!

Ok, so let's pause the whole IC talk.

Back to me being I started bleeding like 3 weeks ago! It was scary and kind of gushing. I totally thought I was miscarrying (never had that before). I ended up having a subchorionic hemorrhage, which my midwife says, is a big scary word for normal bleeding in pregnancy. 90% of women who get this go on to have normal pregnancies. Basically, when you get pregnant, your body makes a placenta (duh). Then your placenta reaches out these 'fingers' that attach to the uterus wall. Sometimes these fingers will hit a blood bubble that will pop and bleed. The bleeding can coat the bladder and make it hard for the placenta to attach? Or the bubble can push the placenta away from the wall and make it hard for the fingers to reach the uterus and attach. Something like that. I've GOT to start bringing a whiteboard to my dr's appointments so that they can actually show me what they mean. My midwives aren't used to me yet  They think they can give me quick easy answers and that I'll be satisfied.  Anyways, I went on bed-rest for a while, and now I'm just down to spotting old brown blood. For like 2 weeks! It's a little worrisome but mostly annoying. In my heart I think this will all turn out fine. Once everything is healed (and it typically is during the 2nd trimester), I go back to having a 'normal pregnancy'. I've never ever had any sort of complication in a pregnancy before, so this was new to me. I have an ultrasound this Friday, and I REALLY hope things will have significantly improved!

Doesn't that sound fun, though? IC + Pregnancy + 3 kids + a tricky pregnancy where I have to 'take it easy'? It's super fun. Thanks to my super mom who is here helping out!

Speaking of're all super awesome and cool gals. I appreciate your positive attitude and kind words. To me, hope can be a fragile thing, and I work hard to protect mine. I appreciate having positive friends in my life, and I hope my words encourage you .

P.S. Here is yet another great article linking Food Intolerance to IC. ENJOY! 

Friday, August 2, 2013

Pregnant = Happy Bladder

Found out that we're expecting our fourth bundle of joy. Surprise! But it is a welcomed one. I love talking to nurses over the phone.

"And what baby is this?"
"It's my fourth."
[pause] "First?"
[ahem] "No. FOURTH!"

The most interesting find for me regarding IC is that I'm 100% symptom free while pregnant. This happened to me last time too. However, last time, my list of food intolerances grew while I was pregnant.

Perhaps the leaky-gut-healing that I've done thus far will prevent me from increasing my list of food intolerances? Maybe.

Perhaps I will stay in remission after this pregnancy? Probably not.

But I'm learning and journaling the entire way, and I hope my notes help.

P.S. This DOES confirm though, that for me, Hormones ARE A BIG IC LINK!

Friday, July 19, 2013

Summer Experiment

  I had my first major flare in August, 2012 after some very stressful events, hormonal changes, and poor eating. Since that time I've had monthly flares that very much coincide with my menstrual cycle. I'm one of the ICers that has issues with estrogen and feels better during times of balanced (luteal phase, the 2 weeks before your period) or low balanced (the first three days of my period). I'm using both allopathic (conventional medicine) and homeopathic ways to treat my IC. All of my health practitioners are aware of who I am working with and what I am using to treat my IC.

Since October, I've started to see some improvement that have resulted in me having more good days than bad. What has been effective for me has been acupuncture, dietary changes, meditation, aloe vera pills, atarax, and herbs to balance out my hormones. I'm also taking elavil, uribel, cystoprotek, d mannose, magnesium citrate, and have gone gluten and dairy free. I honestly don't know if anything in the second set has helped any but I continue to take them.

I wanted to use the summer to experiment on myself. I'm not looking to take myself off medication or implement any large and/or intense diet changes or cleanse. I just want to see if small changes make a noticeable difference if I do them consistently. I'd like to use this thread to track my progress.

As of this starting point, I am a 41 year old woman with red hair who is the walking definition of inflamed. I had bladder issues since I was a child and underwent two urethral dilations (first one at age 4) which set the stage for post procedure ptsd and extreme health anxiety issues. I had no issues after the age of 14 (when I got my period) until I was in my mid 30's when I my hormones started to change (very mild IC that was only triggered by food). I went into remission after having my son at age 37 and didn't flare again until I turned 40. My symptoms on a regular basis are burning and urgency. I don't have frequency issues unless I'm in full flare.

This summer, I will be switching over to a diet that includes more animal protein. I will also continue to meditate daily but will be adding in gentle yoga. I'd also like do gentle daily detoxes like skin brushing. Lastly, I'll be syncing up my daily activities and diet with a new program that has women balancing their lives along with their cycle. 

7/5 Update-

I've been doing a lot of work as of late with meditation which has been a game changer for me. I believe that with the herbal balancing, body work, and some dietary changes, I've been feeling a lot better. Still on meds but I'm going to talk to my Dr this week. I'm fine with being on them for a bit longer, I'm just curious to see what her thoughts are.

I've been looking into a low histamine diet lately. I have a lot of symptoms of systemic inflammation that correspond to high histamine levels. That plus the one med that I do know had a positive effect on me was Atarax. I've been reading the Low Histamine Chef and her diet is doable. She had IC-like symptoms (nocturia, painful urination) but since she had other equally harsh symptoms elsewhere in her body, she didn't treat her condition as just IC. She has an ebook that talks about different mast cell conditions and narcolepsy (which I had from 14 until this major flare in Aug) is one of them as well as IC, obviously. I do think that there are more and more studies pointing to the over stimulation of the nervous system contributing to conditions like IC. 

Anyway, I think all of these things- hormone balance, alkaline diets, meditation contribute to a calmer nervous system. The role of histamine and hormones is pretty crazy and definitely worth a look.

Now, on to milestones. I did have a mini flare last month which bummed me out but my herbalist was happy that the pattern was shifting. I'm trusting her on this one.

1. I'm wearing jeans on a regular basis, even some stretchy close fitting ones which are actually really comfortable.
2. My husband and I hung out with friends until 9:30 one evening without me getting flarey or freaking out that my evening schedule was off.
3. I scheduled a trip for us (including our son) to DC in August. 
4. I'm starting my own business! I'm going very slowly. I used to be crazy type A professional for years, so this one is hard.

Tuesday, July 9, 2013

Working With Doctors

I work with a naturo-path, and a slew of natural-med doctors. But I also work with traditional doctors.

Regardless of what kind of doctor I'm working with, I have found that I need to feel empowered in the patient-doctor relationship. Their medical degree is important and valued, but it is also intimidating. I have experienced and lived the IC life, and I have researched and discussed MY IC with many people. My experience should also be seen as important and valued. With that in mind, here's some tips I can offer:

1) For a while there, my doctors and I thought I may have endometriosis, so had an exploratory laparoscopic surgery to see if I did have it. The plan was to clean out old scar tissue that probably developed when I underwent an emergency appendectomy for a burst appendix (later we completely ruled out endometriosis, and we decided that this was not a problem as far as my IC went. But I digress.) Selecting my surgeon (or any doctor for that matter) is a crucial part of my IC healing:
a) First, have patience. I called around, I researched doctors, I cross-checked my 'favorites' with my insurance company to see if they were covered, then once I found 1-2 that fit the 'bill' (ha ha. no pun intended), I began contacting people online who were treated by my surgeon. I tried filtering through the 'bad' reviews to see if they held merit. I even 'met' a lady online from some forum I had to sign up for. She had mentioned his name briefly in a surgery she had, so picked her brain about her experience with him. It was really helpful
b) Then I made my appointments. I saw my potential surgeon 3 times to 'interview' him about my concerns, critera, and questions I'd developed.
c) What do I say to him (and all my doctors) when I first meet them? I tell doctors my IC issues and experiences (read all my previous posts for details on what I mean). I'm respectful but upfront about my 'conditions' for being treated. I tell them that I don't want to just be prescribed meds. I'm open to trying some, but I don't necessarily want to just 'take meds' as a way of 'guessing' to see 'if it will help' (sound familiar anyone?). I want LABS DONE! I want to find out if I have Candida! Hypoluxaria! Leaky Gut! Anything else!? I want to look into something before I blindly take drugs. 
d) When we meet for a follow-up, I bring my pink IC note-journal, and I look through it to go over discussion topics. I like to hear the dr's take on research I've found, anecdotes (stories from other IC patients), and ideas I may have on treatment.
e) I ask if the doctor is willing to read a couple of articles that I think are pertinent to my IC, and then I hand him copies and tell him that I want to have a discussion about these articles at my next appointment. In particular, I bring them a copy of Dr. Fasano's research article (it's mumbo-jumbo to me because I don't speak the language of Medical, but they appreciate it). They usually don't know about this article. I want to have discussions on how we think this may affect my IC.

I had lovely doctors tell me that I know more about my IC than he did. I appreciate their candidness. They're probably right. I DO know more about MY IC than they do . These doctors wanted me to get better, and one in particular suggested that I see a local naturopath treatment center who has had amazing results in treating a myriad of things. Right now, I just don't have the money for this center. This was my response to my doctor in a followup visit. I told him:
"I called the naturopath center, and I can't afford their treatment right now. In the meantime, I have insurance, and I have YOU. Can we still work together on trying to figure out my IC?" He was willing to proceed with our discussions and brainstorming (and lab work). This has been an amazing support in my research about my body and my IC.

A good doctor can help YOU peel back the layers of your IC 'onion'.

Wednesday, July 3, 2013

How did I arrive at my Diet Decision?

Let's review. The following foods cause me bladder pain, so I'm:
  • Grain Free (including gluten and corn)
  • Dairy Free
  • Egg Free
  • Soy Free (soy is a type of bean)
  • Potato free (potatoes are vegetables in the nigh shade family)
  • Limiting my sugar (to kick my candida problem)

I've heard of the Paleo Diet, the vegan diet, the vegetarian diet, the gluten free diet, the Primal diet, the low-oxolate diet, the GAPS, the IC diet (of course!), the AIP diet, and more. 

How did I ever choose one that worked for me?
One reason I recommend picking a diet is because it helps me find easy go-to recipes. Thinking up foods on such a limited diet is exhausting at the very least.

Because my IC doesn't really seem to flare really badly to acidic foods, put the IC diet on the back became secondary on my food-priority list.

So as I experimented with bladder pains and food varieties, I went through various diets. For a while there, I was a vegan who ate low-oxolate vegetables, and who was doing a modified version of the GAPS diet. My IC was manageable, but eating was very complicated. 

The GAPS diet is THE BEST diet for sufferers of the leaky gut, so I tried that first. It does not allow, of course, grains.  A lot of people on the GAPS diet are also low-oxolate, and since I know that some people have a strong connection between low-oxolates and IC, I tried both these diets together. (Note: Join the yahoo group 'Trying Low Oxalates' for support if you're interested in trying it...LOADS of IC peeps are members of that group. We chat all the time about the discussion I'm trying to start here).

But this diet wasn't working out perfectly for me. I wasn't satisfied with my IC, so I ventured out again and began exploring other diets.

Today, I'm on the Auto Immune Protocol (AIP) Diet. 
The AIP diet is a version of the Paleo diet (again, it is a grain-free diet). Of all the diets that I've tried out, this one fits me best. Basically, when I compared my list of foods that I KNEW made my bladder flare, this diet came closest to my list. Basically, if I eat AIP, I am automatically avoiding foods that make me flare. This is how I arrived at my diet decision. 

There is one caveat to the AIP diet:

My single and only caveat of the AIP diet are foods that are high in potassium. On the AIP diet, you can eat bananas and asparagus in abundance, but for some reason, those 2 foods made me flare. When I was on the low-oxalate diet, I avoided these foods, and my bladder felt better. I THOUGHT that this meant that I was intolerant to oxalates, but CORRELATION IS NOT CAUSATION. I later learned that it wasn't the oxalates in these foods, but most likely the high-amounts of potassium.

Letting go of food...
On the IC-forum, I've had a discussion about the emotional repercussions involved with eliminating foods that I love. I thought I'd re-share that here as it seems very pertinent.

I'm going to open up here for a minute, because this is actually therapeutic for me...please indulge...
When my husband and I go out to a restaurant with friends, and everyone at the table orders, and I pull out my lunch box, I often have to explain to our friends that I've had to divorce pleasure and food [side note: I know they mean well, but the 15-minute-long conversation that then ensues from our friends about how that is 'so sad' really isn't helpful. I live it. I don't need to hear about it as well!] So yes, it is a serious bummer to have to change my diet...and by bummer I mean really really sad. Especially since I'm the girl that likes EVERYTHING. I was born in Brazil. I've lived in Africa. I lived in the Southwest of the US and then to DC. I've gone to Europe. I lived in Texas. I ATE EVERYTHING AND LOVED IT (except for pickled mangos. Kinda gross). But for someone like me who has a daring pallet, I was pretty ticked off all of the time about my dietary constraints. I was mad for a while...and that anger seeped into all other areas in my life.

But then one day I just snapped. I began to look at the other side of the matter: I have 3 young kids (the oldest is 5), and because of the diet I've figured out, I don't wake up in excruciating pain. I can be a mom. I can teach my college classes at night. I can have a life. I had (let's be honest, still HAVE) really really bad IC. My doctors would always say it was one of the 'worst cases' they've ever seen (grrrreat. Misery! Thy name is BLADDER!). And although my pain level today fluctuates from 0-30%, I'm glad. 30-100% was NOT working. The pain management I have now is huge when nothing else worked. I know that I am managing this pain due to my diet. I'm not on any drugs. I do herbal stuff and vitamins (i.e. Vitamin D, multivitamin, some herbal anti-histiamine, fish oils, but nothing really hard-core), but no drugs, so I know that a huge part of my pain management is my diet. If I deviate for even one bite, my IC comes back with a fierce vengeance and I'm in bed with a diaper-towel in between my legs for hours. So anyhow, after that day where I 'snapped', I was able to overcome my frustration about something I couldn't change and I just go with it. I don't like it, but I do like the level of relief the diet brings me. So I'm going to embrace this gift, my diet, for now.

So to answer some questions:
1)Do I plan on being on this diet forever?
 Yes and no. I kind of believe in the high-vegetable intake thing and in the grass-fed meats thing, and I really find power in eating whole foods, but part of the goal from getting better is to be ABLE to eat whatever I want, in moderation and on occasion. So while I'll probably be mostly a whole-foods girl with grass fed meats (after remission), I'd love to reintroduce a moderate amount of grains back in my life. I think my body was designed to eat all I'd like to have a more 'normal diet' some day. Maybe I'll refer to myself as a 'dirty Paleo' who mostly follows Paleo-ism, but who may deviate from time to time .

2) Yes. I do think my current Paleo-AIP diet is sustainable, but... While I don't feel starved, and while I do think I have enough nutrition, I don't think it's good to eat this limited FOREVER. I plan on doing this Paleo-AIP diet for at least one year...possibly longer, then I'll decide if my gut has healed enough to add something like nuts into my diet. I know. Woooweee...almons?! Such crazy talk. :)

3) I don't believe in prescribing any one diet. Someone told me once that they think everyone's body is constitutionally different, and I like that concept. Low-oxolates may be important for you and your IC, but it doesn't seem to be right for me. Meat may make you feel a little sick, but it antibiotic free, grass-fed meats make me feel great (the nasty hormone-coated antibiotic injected meat I ate before DID make me feel digestively icky however). I later learned that meat has some good amino-acids that help with gut healing. Anyhow, you need to be your own doctor and figure out diet you need. BUT, having said that, I do think that we, as a whole, eat FAR TOO MANY GRAINS. FAR TOO MUCH DAIRY. and FAR TOO MUCH MEAT! I think grain-free is one of the best things to do for me and my IC. It forces you to eat more veggies!

I hope you find this note encouraging. I'm not trying to be preachy at all to anyone. I just thought I'd express some of my journey about the food-thing. I can really really relate to many frustrations. It also felt good to put this out there since it's something that I've been mulling over for a while. I respect everyone who is trying to work this out in their own way! 

Here's to all of us and our health [raises a glass of Evian]! And honestly, I DO BELIEVE we can beat this. I know we can!

Monday, June 24, 2013

Leaky Gut = Autoimmune Diseases = Paola's IC

First of all, let me start by saying that I am an English teacher (don’t go looking at my grammar now! ☺), and it is really helpful for me to write these essay-like posts because it helps me sort through ALL the material and notes I’ve been taking in my IC note-book. I’m posting them here because I hope my journey and on-going learning will be interesting and helpful to you.

Most of my posts originally began on the IC Network Forum, but I started this blog to keep things more tidy.

So, writing things down helps me keep track of ideas and improvements as I figure out this IC body of mine. I recommend that you do the same.

The first significant 'find' that I identified relating to my IC was Leaky Gut.

Let's get down to the bottom line: How did this help me become pain free? Leaky Gut often means a Gluten & Grain sensitivity (the only way I figured this out is via grain-elimination).

For me, once I stopped grains, my symptoms significantly reduced within 24-48 hours. 
I say give it the old-school try! And drink tons of water to flush out that bladder as you wait for symptoms to possibly improve. Note that for me--in addition to some other ingredients, EGGS REALLY REALLY make me flare bad. So experiment with other foods that commonly bother people with leaky gut to see if it helps.

I believe that IC (FOR ME) is a systemic issue. This means that I don’t think the real problem is sourced in my bladder. I don’t think my bladder is ‘broken’. Based on my food intolerance's and the huge amount of relief I find from avoiding foods, my issue is somewhere else. For me, namely? The Leaky Gut.Let's Back Up...What is Leaky gut?
What is the Leaky Gut? I don’t know, officially. Ha! (gotcha). I’m no doctor. But I have spent literally hundreds of hours researching this. I DO, then, know a few concrete things about leaky gut and how it relates to MY experience in IC. 

1st- Non-traditional medicine has been honking the ‘leaky gut’ horn for years and years and YEARS. Traditional medicine has been saying that there was no traditional medical evidence backing this syndrome. Others have flat out called leaky gut beliefs as ‘quackary’. Ah. The 2 schools of thought have collided in controversy for literally decades. That is until recently. Bring in Dr. Alessio Fasano.
2nd Dr. Alessio Fasano has conclusively proved with traditional medicine that the leaky gut DOES exist. Here is a summary of his research (you can listen to the full-explanation by going to blogger Chris Kresser's Website).

  • a) Dr. Fasano’s leaky gut discovery begins with gluten and celiacs. He discovered that people who are celiac AND virtually all people who are gluten-sensitive produce an overabundance of Zonulin. Zonulin is an enzyme that opens and closes little ‘doors’ in the gut. It opens the ‘doors’ to let vitamins and nutrients into the blood stream. It then closes it and keeps toxins that are naturally found in the food we eat out.
  • b) People who are gluten sensitive (ME) over-produce zonulin. This means that our ‘doors’ stay open too long, this LEAKS in toxins to our blood stream. 
  • c) Who is gluten sensitive? To Dr. Fasano, people who have auto-immune disorders are particular sufferers.
  • d) What about those natural med doc’s who have been tooting the leaky gut horn for all those years? What does Dr. Fasano say about them? In the interview he refers to them as VISIONARY.
  • e) Please note that Dr. Fasano’s discoveries are VERY recent…as in it was discovered about 2 years ago. Information about his research hasn’t trickled down to practitioners, particularly gastro-docs and definitely not to doctors who treat people with auto-immune disorders.
3rd- So gluten intolerance means leaky gut. But I’m not celiac! Just do some research on this misconception. Suffice it to say that it IS a misconception to think that you have to be celiac to be gluten sensitive.

How does the whole probiotics (beneficial bacteria) relate to the leaky gut?
Again, I really don’t ‘KNOW’, but again, I did do a ton of research, and this is what I’ve garnered…

1st- All foods come with toxins. It’s just part of the package deal. The acidic nature of our stomach kills off most of the bad stuff, but a few hardy bacteria survives this process. That’s when they get to the gut, or intestinal track. 
2nd- The gut has millions of probiotic (beneficial) bacteria that will then ‘take care’ of the rest of the toxins.
3rd- Antibiotics kill beneficial bacteria. Have you ever had antibiotics? If you’re an IC-er like me, the answer is a resounding YES because I, for one, was on antibiotics for years trying to put out ‘bladder infections’ which were really just flairs. So what happened? We either reduced the quantity of beneficial bacteria in our gut, and/or Worse...killed some 'species' of beneficial bacteria off completely (there are millions of different kinds of beneficial bacteria).
4th. Killing off beneficial bacteria is BAD. For example, there is a toxin called Oxalates that is found in some vegetables like spinach, chard, etc. But nature has created a way for us to deal with this toxin: We were born with a beneficial bacteria in the gut (called the Oxalabactor Formegenis) which ‘eats’ oxalates. If we don’t have enough of the OF, then our gut will have an overabundance of oxalates. Thus, if you have a leaky gut, you are surely getting oxalates in the blood stream (I think ). Symptoms of this often come up with people having kidney stones (a traditional gastro doctor will confirm this…this is pretty concrete medical info). But this toxin--oxolates--can affect IC People in particular, and CAN even be the source of someone’s IC.
5th- How do oxalates relate to the leaky gut? Well oxalates are a tricky nasty toxin. Remember Zonulin? It opens the ‘doors’ in the gut to let in nutrients to the blood stream. Well, let’s say you’re Gluten Sensitive, and by eating gluten, you’ve jammed those doors opened. Well, oxolates prevent those doors from closing. How? Oxolates will use fat to make a nasty wad of oxo-fat (not a technical term ). Then it kind of sucks up calcium that you've ingested. It is the CALCIUM that shuts those 'doors' Thus the gluten-causing overabundance of zonulin will jam the door open, and the overabundance of oxalates can prevent those doors from shutting. Thus you have even worse Leaky Gut. [I may have missed some info here on the nature oxolates, but I know a lot of it is accurate as well! Any more insights from you are appreciated ]
6th- One last thought about oxalates: some people are born with not enough of that beneficial bacteria, OF. This is called Hyperoxaluria. One IC patient created a website telling her story about healing her IC by discovering and addressing her hyperoxaluria (google IC Oxolates Rachel Blond). Finally, there is an amazing Yahoo support group for people who want to try oxalates. Look up Trying_Low_Oxolate_Diet. I am a member of that forum.
7th- How does oxalates relate to probiotics and candida? Probiotics help replenish and reculture the beneficial bacteria in your gut. Unfortunately there are hundereds (millioins?) of different species of this bacteria. The OF is just one of them. The sad part is that the Oxolabactor Formegenes probiotic is not available for purchase yet. A company named OxThera is in the process of testing their OF. They HAVE successfully cultured some, but it is not yet on the market. The next best thing as far as probiotics go is the VSL#3 probiotic brand. For now, if you suspect oxalates as an issue, you just have to lower your overall oxalate intake. I’m working on this. Yes. This means that I have now added HIGH-oxolate containing foods to my list of ‘food intolerances’ (see previous post!). Again, I like that Yahoo Group as a good support in helping me navigate this.
8th- If this is just ONE of the millions of bacteria that could be either weakened or completely annihilated in my (or your) gut, and it’s causing the leaky gut, how many more are missing that aren’t available in probiotics that are affecting my overall health and IC??? Great question. This brings me to…

CANDIDA. It’s like the opposite of probiotics…it's the 'bad' fungus that creates an imbalance with good gut bacteria.
1st- Testing for it? Candida can be a systemic issue, meaning it’s not just a little yeast infection in the vag. Instead it can even be in your bloodstream (hello! Leaky gut again). If you like doing lab work, go to your IC doc and ask for a PCR test (it’s expensive, make sure insurance covers it). That can help you see if you have any issues. It tests for bacterial and fungal growth in the vag area. It can help ID candida. You can also get a urine culture where candida may/may not grow. You can also go to a gastro-doc (I think) and get a test done there to see how much is in your gut. DOES ANYONE have experience with this? I’d be very interested to hear about it. I have heard of the CDSA test (comprehensive Digestive Stool Analysis)...hmmm..may be the one to try?

2nd- I no longer think I have a candida issue (more on that later). However, be aware that it may or may not show up in labs or not. Either way, I limit my sugar intake because I'm trying to create a healthy gut-environment for my gut flora. I'm also on 6 pills of VSL#3 a day.

3rd- Back to the leaky gut. If toxins are in your blood stream because your ‘doors’ stay open too long (too much zonulin, too much oxalates, and too little calcium), then detoxing is good. Detoxing can also aid in getting rid of candida. I’m working on finding a good detox that I can do that also works with my diet. Going grain free and drinking a lot of water is already a BIG step in the right direction.

Well, there’s a summary of my research on Leaky gut. I’m may have butchered some areas, and I have still a lot to learn, but FOR ME, ALL OF THIS IS WORKING.

Again, drug free. Pain Free (fluctuates between 0-10% if I don't deviate from my diet...and usually it goes up before my period starts).

Stay positive everyone!!!! WE CAN BEAT THIS! 
Yours in healing,
P.S. Update: I found an interesting article about Leaky Gut (aka Gut Dysbiosis) and IC: