Where did the time go?

Ok, so I had every intention of writing this fabulous post about Cystoprotek (a supplement developed to treat IC) and the doctor from Tufts U. who has researched/written extensively about how inflammation in the body is linked to Fibro, IC, IBS, etc. However, to do the topic justice would have taken quite a bit of time, and with everything that's been keeping me busy, that task became quite daunting. So, I'm going to break it down a bit so that it's more manageable, meaning that I will delve into the topic over a few posts.

First though, an update: I saw my ob/gyn (Doc F) again on Thursday, feeling great because my IC had improved significantly since following the IC diet and taking the Cystoprotek. While I had good and bad days, I could reduce the number of flares I had by being consistent with my diet. He was quite impressed by the level of improvement I reported and was okay with my decision to not try Elmiron, a prescription med for IC; however, Doc F also had some disappointing news. He had done a little more research about Cystoprotek and the individual ingredients in the supplement. One of the ingredients it contains is quercetin, a bioflavonoid that has anti-inflammatory properties. While it's considered safe in recommended doses, it is not recommended for pregnant women because laboratory studies suggested it could cause chromosomal mutations in bacteria. While there isn't any evidence that happens in humans, it's prudent to avoid the supplement during pregnancy just in case. Doc F assured me that I could take it up until I find out I'm pregnant and then to stop it immediately. That's a little scary since a tremendous amount of cell division and growth occurs during those first days after conception. I went home pretty bummed, worried that the only supplement that seemed to be helping my condition could potentially (although the chances are slim) cause harm to my (future) pregnancy.

On the plus side, the soy lecithin that I'm taking for my brain fog (recommended by my rheumatologist) and Polycystic Ovarian Syndrome (PCOS) is perfectly safe, even during pregnancy. Info about supplements and PCOS will be in a future post, so to all my menstration-ly challenged sisters, be on the lookout for that post in the upcoming month. : ) As an aside, my doctor got a big chuckle when I mentioned I was taking the soy lecithin for brain fog. He smiled and said, "Claudia, out of all my patients, you are the last person I would ever think had brain fog. You are probably my most well-informed, intelligent patient. I even have trouble keeping up with you." I thought he was teasing me but he repeated his statement and added, "I meant that as a compliment. I mean it." I have to admit, getting that validation felt pretty great because I had feared that he just thought I was a big hypochondriac that spent too much time doing research on the Internet. Well, he probably still thinks that, but at least he values the effort I put into getting myself well again.

I guess I had spoken too soon when I told Doc F I felt much better because a couple of hours later I was in tears from IC pain. At first I attributed it to the disappointment I felt after my appointment, but a couple of days later I realized that the tortilla chips I had been eating were fried in sunflower seed oil. I had discovered earlier in the week that sunflower seeds trigger my IC. The day of my appointment, I had gone home and munched on a big bag of organic corn chips, but it was a brand I hadn't tried in the past and I hadn't looked at the ingredient list, except to make sure they were GFCF. Turns out they're fried in sunflower oil! As soon as I cut them out, my IC pain improved...well, that is until I went out to dinner the next night with a bunch of my school psychologist colleagues/friends. I was determined to prove to myself that with a few Prelief and my Cystoprotek that I could have a few IC forbidden foods and be ok. Well, I wasn't. I had tomatoes and vinegar on my salad and a glass of white wine with dinner- big mistake. That night and well into the next day, my IC pain reared its ugly head. Seems that my hour of pleasure would end up causing almost 24 hours of misery.

I know there are some people out there that may think that the improvements and setbacks I experience are due to the placebo effect. Maybe to some degree it's possible, but it doesn't mean that it's all in my head. Believe me, if it were, I'd will myself right this second to be able to eat a slice of pizza and a piece of chocolate layer cake without any pain or ill effects. Yummy!

Today I made the mistake of eating an organic hotdog with mustard. I don’t know if it was the dog, the mustard, or the combo that made me flare, but I’m paying for my food choices once again.

I’m pretty sick of feeling like a freak on this restricted diet. I know that it helps, but it’s not fun feeling as if every bit of food you put in your mouth could hurt you.

Let’s hope this doesn’t last for cento anni!

Prelief...a relief?

Well, it seems that I just keep putting out fires and haven't really been able to enjoy the fact that my IBS symptoms have improved. Also, my husband continues to remind me that thus far, I have not entered any real data into my posts (although I have been keeping notes in my day planner). I will begin including data at some point; however, now is not the time. There are much more pressing (and burning) issues to address.

Ok, so if things haven't gotten personal enough talking about my tummy troubles, I'm taking it to a whole new level. This is also where the focus of my blog takes a turn and starts really delving into fibromyalgia (and all the fun symptoms that come with it). Last week, I felt as if I had a horrible UTI. The pain was excruciating. I went to the ob/gyn and saw the only doctor available, a kind, older doctor who resembled the assistant coach from the 90's sitcom "Coach," but less bumbling. Doc said that it wasn't a UTI but an overgrowth of bacteria in another area of my anatomy close in proximity, likely caused by something trivial, like the summer heat or a change in bath soap. He wrote me a script for an antibiotic and assured me it would take care of my problem. I asked if it could be cystitis but he dismissed my concerns and sent me on my way. After one day on the oral antibiotic, my GERD was back, lump in my throat and all. Two phone calls to the ob/gyn later, I was switched to another medication that wasn't oral. Let's just leave it at that.

A week later (this past Tuesday), the pain was still there. It felt like my bladder was filled with a corrosive acid that was slowly burning through my plumbing. I made a follow up appointment. My doctor was again unavailable, so I saw yet another male doctor in the same practice. This guy looked like the runner up from the most recent season of "The Next Food Network Star." I think his name was Jeffery- the chef, not the doctor. Anyway, after waiting twenty minutes in the reception area and another fifteen minutes in waiting room number two, I was finally led into the examination room and asked to change. The nurse took my blood pressure and told me the doctor would be in to see me shortly. Twenty-five minutes later, I was still in a state of undress, waiting for the doctor. I peeked my head out the door, sheet draped around my waist, but there was no one in sight. Already late for an appointment with the HVAC guy (who was coming to fix the A/C back at my house), I grew increasingly impatient and decided I would use my cell phone to call the front desk. The shocked receptionist quickly paged the doctor, who casually strolled in a couple of minutes later. After a brief examination, he determined that my problem was not a bacterial infection. His diagnosis was Interstitial Cystitis. Hello?! Wasn't that what I told the last doc? Ok, so I had left out the first word that I couldn't pronounce, but he should have known what I was getting at. However, this wasn't the diagnosis I wanted to hear, since IC can be extremely painful and difficult to treat. My heart sank. Doc Next Food Network Star told me that IC often is associated with Fibro and Endometriosis (I have both). The birth control that I was taking previously likely halted the progression of my endometriosis, which in turn kept the IC at bay (his theory). Now that I was off the Pill, I didn't have the same protection. Stopping the acid blocker didn't help either, since acidic urine burns more. There is a medication that can be prescribed for the pain, but the doctor said it usually takes about six months to see improvement and it only helps about 30% of those who take it. Nice odds. The other two things he has seen help IC are hysterectomy (for those who have endometriosis) and pregnancy. Ok, pregnancy was a treatment option I could get behind.

The next day the pain was better and I was hopeful that these symptoms would soon pass; however, yesterday it was back. The pain was so bad I wanted to cut my bladder out, so I called the ob/gyn again. I'm still not sure where my doctor is because the nurse consulted with Doc NFNS instead of my guy. The nurse told me that I could take Tylenol for the pain and she recommended a supplement called "Prelief" that one of her family members with IC takes. It is a food grade mineral chemically known as calcium glycerophosphate that reduces the amount of acid in foods. Since acidic foods can trigger IC symptoms, many women with IC get significant relief when taking the supplement. I bought it last night and took it this morning. I still have symptoms, so I'm not sure if I took an inadequate dose or if it takes several doses before one sees relief. The testimonials are fantastic http://www.ic-network.com/handbook/prelieftestimonials.html so I'm really hoping that it will work. It's also supposed to help with IBS. Does anyone out there know how long it takes before one starts to feel relief?

This is my question. There are all these doctors who specialize in just part of the human anatomy; as a result, they treat diseases related to their "part" as if the part is not connected to the rest of the body. Do they not get that a lot of these separate diseases/syndromes (IBS, IC, Fibro, etc.) seem to occur together and may be caused by the same thing? Why are doctors just treating part of the patient and not working together with other specialists and the PCP as a team to treat underlying causes of disease? The more research I read, the more I am convinced that Dr. Hyman is on to something. Inflammation seems to do a lot of damage to the body. Why aren't more doctors looking at what contributes to inflammation in their patients instead of just passing out drugs like candy? Only treating symptoms is like putting a band-aid on a gunshot wound. Sorry, I use a lot of clichés. Yeah, I want my pain to go away, but more importantly, I want to eliminate the cause of my pain. I'm not anti conventional medicine but there are alternatives to drugs. Let's open our eyes and see the kind of damage we're doing to ourselves with all the chemicals we're surrounded by, the pollutants we're breathing, the processed food we ingest, the chemically laced water we drink, our hectic lifestyles, lack of sleep, etc. etc. We're a mess. No wonder so many people are sick. There needs to be a paradigm shift, and it needs to happen immediately.

Ok, I'm going to get off my soap box for now. Just wait until my diatribe about bad parenting. Yeah, as a school psychologist and former counselor at a group home for pregnant and parenting teens, I've got enough fodder to last through at least 100 posts. LOL.

Body Balance

Ok, before I get into the supplement, “Body Balance,” I still need to catch you up on the other changes I’ve made and the effects they’ve had on my health. I’m hoping that within a post or two that I can finally start writing about the present and begin officially keeping data.


On Day 4 of my new “detox” diet, I stopped taking the proton-pump inhibitor I was taking to treat my acid reflux. I had been taking it for about 3 months and found that I had become dependent. Unfortunately, chronic use of acid reducers can lead to B-12 deficiency since stomach acid is necessary for proper digestion (http://www.aafp.org/afp/20030301/979.html). I decided I would stop taking the medication and see how I did. Two days of ratatouille later, I had what felt like a lump in my throat, trouble swallowing, plus my reflux was back. I called my G.I. and spoke to the nurse, who spoke to the doctor, who wanted to up my meds. Go figure. I’d made these major overhauls in my diet, hoping to improve my health, and now I was destroying my esphogus. I found it pretty depressing that I had fixed one problem (my IBS) but had created another. I had heard that stopping an acid blocker could lead to rebound acid reflux (http://www.medpagetoday.com/Gastroenterology/GERD/14956), so instead of freaking out, I decided to find some alternatives to the acid reducer.

I checked out Dr. Andrew Weil’s website, http://www.drweil.com/. I first heard of Dr. Weil after he was a guest on the Oprah show and appreciated his ability to combine conventional and complementary medicine. He is also the founder and Program Director of the Arizona Center for Integrative Medicine. Dr. Weil recommended deglycyrrhizinated licorice (DGL), so after a little more research, off to the local health food store I went. DGL supplements can taste pretty gross, but the lovely clerk at Earthfare recommended a chocolate flavored one that was gluten-free. Gluten-free, yes. Dairy-free, no. Since I could barely swallow by this point, I was pretty desperate and bought it anyway. After about three days, the lump in my throat was gone. I should add that I also cut out alcohol, dark chocolate, tomatoes, raw onions, fried foods, and spicy foods (my acid triggers). After a week, I was able to reintroduce small amounts of tomatoes and garlic, but not raw onion (which I also avoid because it aggravates my IBS) or alcohol (which has always given me reflux). I should continue to avoid chocolate, but sometimes I’ll have a bite and suffer the consequences. I take the DGL three times a day, twenty minutes before meals. I find that if I skip a dose and eat a large meal, my acid comes back. Oh yeah, there are a few other things that really helped me, such as eating smaller meals, chewing well, eating slowly, and not eating three hours prior to going to bed.

Body Balance started Day 5 into my diet. Life Force International’s Body Balance is a whole foods, liquid supplement recommended to me by my physical therapist. It’s a multivitamin, antioxidant, mineral, and amino acid supplement made from sea vegetables, combined with an aloe base. Because Body Balance is in liquid form, it’s also much more absorbable than the typical horse pill sized multi’s that I never end up taking anyway because they make me gag. I was a bit skeptical at first since it’s sold via multi-level marketing, but after speaking with my PT’s daughter, Sarah (name has been changed), who sells the product, and doing tons of research, I decided I would try it. Sarah has two young boys who suffered from multiple health issues, both whose problems started to resolve after a few months on the supplement. Sarah recommended I start with a low dose (.5 oz) to ensure that it didn’t cause G.I. distress. After about two weeks, I’ve worked my way up to 2 oz per day. I don’t really notice much of a difference being on the supplement; however, as with any supplement, it typically takes weeks before the health benefits kick in. In addition to Body Balance, I also take a calcium/magnesium/Vit D/ Vit K supplement, fish oil, and folic acid. I probably have the most expensive urine on my block! Previously, I had only taken calcium and fish oil sporadically and didn’t take folic acid. But since folic acid and fish oil are both key to brain health, not to mention important to prenatal development (should I get pregnant soon), I now take them daily.

Ok, it’s almost 11 pm and I’m beat. More to come after I’ve gotten some sleep.

Catching Up

Ok, so since I technically started my gluten-free, casein-free diet almost three weeks ago, I've got some catching up to do in terms of explaining why I started and how my diet's been going. About a month ago, I picked up the book, "The Ultramind Solution" by Dr. Mark Hyman. In a nutshell, he talks about how inflammation can lead to all sorts of problems in the body and mind, including ADHD, memory loss, depression, anxiety, fibromyalgia, etc. and how changes in diet and lifestyle, along with supplement use, can reverse these problems. He outlines a six week plan that includes several components, one of the most significant being dietary changes. Dr. Hyman (gotta love that last name) also advocates a gluten-free, casein-free diet, eating organic, whole foods, and staying away from sugar (except for naturally occurring sugars in fruits, whole grains, etc.). The book is so much more comprehensive than the couple of sentences that I've written, so I would encourage readers to look the book up on Amazon or Barnes and Noble (no, not my sponsors...yet...lol) for a more in-depth review .

Because of my fibro, IBS, and extreme fatigue, I figured going on the diet was worth a shot. I was a little skeptical because years ago a naturopath had put me on a "detox" diet. I followed a very strict rotation diet that didn't allow me to eat any of the foods that I tested as having a sensitivity to (according to IgG anti-food blood tests). Boy was I a miserable person for the three months I was on it. Because I was also vegetarian at the time, my diet was extremely limited. I lost 15 lbs off my already thin frame, my hair started falling out, and small children were afraid to look at me. Well, maybe the last part was an exaggeration but looking back at pictures of myself, I now know why people thought I was anorexic. Even my best friend told me, "You've become a total b*tch on this diet! Screw the detox and please just eat a chocolate bar." After that experience, I wasn't too optimistic that the "Ultramind Solution" diet would help; however, I was desperate to feel better so I drove to the local health food store and filled up my cart.

Organic, whole foods can be expensive, especially if you're limited to gluten and casein free. My hubby was not a happy camper when he looked at the receipt for my little shopping spree. $18 for grass-fed steak when we used to pay ten bucks for the same cut at Costco?  He grew up in Texas, where evidently, bigger is better, so eating half a cow that's been pumped with hormones (sorry Texans) is a manly thing to do. He did later admit that my grass-fed, organic beef tasted ten times better that the conventional stuff we buy at the local, big-name grocery store. Word of advice: Grass-fed takes less time to good, so unless you like your sirloin jerky-style, cut back on the cooking time.

I'm the cook in the family, so despite my husband's initial protests, he was looking forward to all the home cooked meals he'd be getting since it's almost impossible to eat take-out when you're eating this way. I even began packing lunches for him. He must have eaten ratatouille for five days straight. Another word of advice: Invest in a good gluten-free cookbook because it can be hard coming up with new things every night when you've cut out whole groups of food.

On days one and two of my diet, I didn't notice a change. I grew dismayed as I felt the same aches and pains, suffered the same tummy issues, and meandered through my day in the same brain fog I had experienced for the past several years. The only thing that kept me going was that I figured the diet would be a good way to prepare my body for pregnancy- my next "project" to work on once my husband no longer runs away in hysterics when I mention the word, "baby." : ) Just kidding honey...about the hysterics, not the baby. But I digress...Day three the changes I noticed were the absence of two things- my stomach pains and a few pounds of bloating.

When I got married a year ago, my 5' 7" frame carried 133 pounds. That was about ten pounds heavier than I had been in my 20's, but still thin. A year into marriage, I had gained 10 lbs. In the past if I had put on a pound or two (or three or four...), I just had to say the word "diet" and the pounds came off, or so it seemed. Not once I was married though. My husband's big appetite (to feed his big muscles), meant I had to cook real meals, not just pour a bowl of cereal like I had in the past if I didn't feel like cooking. Even when I tried to return to my old eating habits, my new appetite didn't allow for it - salt and vinegar potatoes chips whispered my name, hazelnut-chocolate bars sang to me, gourmet restaurant meals entertained me.

My new diet turned off that hunger. I felt less bloated, lighter, freer. One morning, my husband grabbed my waist, expecting to feel muffin top, but happily, it was almost gone. Don't get me wrong, the weight loss was great, but even better than that was that my stomach finally felt *normal*. "Wow," I thought, "is this what it's like to have a normal G.I. tract?" I became ecstatic when I went to work and ate lunch without feeling like I was going to pass out afterwards from stomach pains. I could sit through a meeting without having to excuse myself for fear of my insides exploding all over the conference room. For a while last school year, I got sick so often that people asked if I was pregnant.

I felt encouraged by my progress and happily I munched on my veggies, thankful that I had finally found something that seemed to be working, not perfectly, but it was a start. A week into my dietary changes began phase two of my experiment: Body Balance. I'll leave that for tomorrow's post.

Who am I?

Disclaimer: The information provided is for entertainment purposes only and should not be considered a substitute for medical care provided by a licensed practitioner.

My name is Claudia and I'm a thirty-something year old psychologist who is becoming an old lady before her time.  Even though I look youthful and healthy- my husband and friends say I look like I'm in my twenties, God bless them- I drag through the day, saddled with muscle pain, migraines, IBS, and brain fog like you wouldn't believe.  I am tired of feeling tired, so I decided to take action.  Now, as a good psychologist, I know that it's important to keep data.  This blog contains my data.  Where I stray from my training is that I'm making several changes at the same time; thus, it will be difficult to figure out which variable is making the difference.  However, since I'm too impatient to make only one change at a time, I'll do my best to weed out what's working as I go along.

But enough psychobabble.  Time to get to know the other side of Claudia.  Why the moniker, Claudia "The Mouth."  Well, years ago my siblings and my BFF were watching "Goodfellas" and decided we should all have a Mafia name.  My family is Italian and this seemed very fitting at the time, even though none of us support organized crime.  Because I talk a lot and tend to put my foot in my mouth, I got the name, "The Mouth."  However, knowing this tendency of mine to give Too Much Information, my husband of one year (but S.O. of six) has asked that I keep my stories about him to a minimum.  I will try, dear husband, but you knew what you were getting into when you married me.  LOL. Not only will my blog contain details of my dietary changes, supplement consumption, and results, but I'll also include stories that may only be tangentially related.  Yup, that's what he's afraid of since some of my best stories include him. 

Most importantly though, I am writing this blog in hopes that not only can I heal myself, but that I may also help someone else out there who is suffering.  Being in pain is no fun.  I waffled on writing this blog.  Some of the details I'll share may be pretty embarrassing and/or personal, but today something happened that convinced me to do this.  As I revealed to a colleague (and friend) of mine some of the health issues I've been having and the changes I've made/am making that have helped me,  she revealed that she experiences very similar health difficulties and has struggled for years, thinking she was the only young person who felt that way.  She encouraged me to follow through with my blog, adding that I may help others out there in cyberspace who have given up hope of ever feeling better.  So, here I am, The Glutenless Italian.  Thanks for reading and Cento Anni!