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A very personal request

February 11, 2010

I sent this email out to my dear friends and I’m sharing it here too as most “Year Without Cake” readers are peronally affected by this issue just as much as I am!

Dear friends,
 
I don’t often pass around requests for petition signatures. Sometimes, when a matter is extremely important to me I do. I’m asking now for a cause that may look, on the surface, to be somewhat unimportant, given the tragedy that we’ve seen thus far in 2010, not the least of which has been the earthquake in Haiti, which has devestated countless lives.
 
However, I’m asking you to give this issue a 2nd look, because it affects so many people, including myself! As some of you know, I have a gastric motility disorder known as SIBO. Having this condition has completely changed my life in many ways, not for the better. Currently there are two bills up for consideration, Senate Bill 981 and House Resolution 2275, to support research and public awareness activities (including professional development for healthcare professionals) for inflammatory bowel diseases. Additionally, there was recently a request for $665,000 in earmark funding issued to the Motility center at Cedars-Sinai Medical Center in Los Angeles to assist the innovative GI Motility research being led by Dr. Mark Pimentel who is studying the use of antibiotics to prevent severe bacterial overgrowth in various GI motility diseases. Dr. Pimentel wrote the book (literally) on SIBO and to this day my doctor and I follow his recommendations to treat my condition. However, Dr. Pimentel hasn’t yet found a cure, nor are there cures for even more serious motility conditions such as gastroparesis or pseudointestinal obstruction.
 
On December 12 (my birthday!) and December 13th Senator John McCain made a series of comments during open debate on the floor of the United States Senate and on a Fox News broadcast protesting against this earmark. His comments trivialized motility disorders and the important research that is needed to help people affected by them. I echo the belief of my friend Michael Smith of G-PACT when I say that these types of comments only serve to foster an unnecessary ignorance of the severity of GI motility disease. Given what I and my family have been through during the last four years, I can promise you that SIBO and other motility disorders are neither funny nor trivial. Speculative reserach has linked SIBO to many other non-gastrointestinal conditions such as Fibromyalgia, Fatigue, and Interstitial Cystitis. Sadly, I have recently been diagnosed with some of these other conditions.
 
So that is why I’m sending you this email and asking you to sign this petition: “Senator McCain: Support Research Funding for Gastric Motility Disorders ”
http://www.ipetitions.com/petition/gastricmotilityresearch/
 
It doesn’t matter what your political affiliation or partisanship is. You can support John McCain but he needs to know that you don’t think his comments were appropriate or funny. Many people of both political parties suffer from motility disorders. All politicians need to know how important it is that we fund research and find a cure for these conditions. Please sign this petition and please pass my request along to your friends as you see fit.
 
Many, many thanks to all of you, my friends

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Google Alerts, Twitter Accounts, SIBO Awareness and Internet Friendships!

February 2, 2010

I don’t know what I would do without Google alerts. I was able to watch the Sherlock Holmes trailer the day it was released, although I don’t typically comb the internet for movie news. I kept tabs on my “home” agency, the one where I currently work, where I first worked out of grad school, while I left to trial the private sector.  And I found NonNosher thanks to Google Alerts too! And finding NonNosher’s blog, the Year of Eating Weirdly-Celiac Surprise, could not have come at a better time.

It’s true. I mean, I lived through months and months of mostly the same thing every night – a link here and there to a journal article I’d already read. Or a link to a citation to that same journal article. Or a brand new lit review would come out rehashing all the relevant SIBO literature, which I’d already read. Hooray! Sometimes the link would point to a recent forum post penned by – you guessed it, me! I did learn something completely new from my SIBO Google alerts – apparently SIBO is a very popular nickname!

So, when one day I opened up my Google alert to find mention of NonNoshing and Noragomy (what?) and Celiac disease, I probably didn’t think much at first, but I followed the  link anyway, and what did I see but someone else who used to really enjoy food and eating but now had problems with common, everyday items like fructose and gluten! I read with excitement upon finding my very first SIBO-centric blog besides my own, and I commented immediately. And here we are, about a month later and we’re twittering for SIBO Awareness. That’s right! You may have noticed that my twitter link has changed from my personal account, which is sometimes SIBO-related, to a new one using my blog name. You can find me here: http://twitter.com/GirrlockHolmes

Please follow me and then follow NonNosher, my partner for SIBO Awareness here: http://twitter.com/NonNosher

We want doctors to know how to test for and diagnose SIBO. We want nutritionists to recognize the signs and symtpoms of SIBO and be able to recommend healthy, SIBO-safe food choices. We want SIBO to get the same publicity that Celiac disease and the gluten-free lifestyle have. We want an easier time for the woman or man who wakes up one day and wonders where the bloating and distention or diarrhea and constipation or migratory myalgia or any other more or less common SIBO symtpom are coming from to have a little bit of an easier time on thier way to diagnosis. We want awareness and eventually we want something beyond treatment and recurrance. We want a cure!

NonNosher will probably, much like myself, need a little more than a year to eat weirdly and abstain from cake. Maybe, like me, NonNosher will need a few years. Here’s to a shared campaign and the wonder of the internet for bringing two women in two different states with the same digestive condition together to tweet for more awareness about SIBO!

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Vitamin D

January 9, 2010

Back in mid-October I started supplementing with Vitamin D. The transition from something I was toying around with to a daily, regular supplement was a quick one. I ran across this old article from 2003 that stated that “93 percent of all subjects with non-specific musculoskeletal pain were vitamin D deficient.”  That’s a pretty staggering number. The same week that I found that article, I had a discussion with a friend who had recently found out about her own deficiency, and she encouraged me to continue supplementing, and to determine my own dosage based on symptoms. I asked my doctor for a Vitamin D test  when I saw her at the end of the month. She looked at the results of an older metabolic panel and said that my calcium levels were fine so there was no need to test for D.

I continued to take the D, and the more I read about optimal levels, the more I took. I also didn’t notice immediate relief from the pain, bony aches that came and went and migrated through my limbs, back and pelvic area, so I kept increasing my dose, up to  around 7,000 iu daily. Right around Thanksgiving I felt the bone aches coming on one day, and they lasted about 2 or 3 days. But the good news was that in getting them back I realized that I had been without them for weeks! I realized I had skipped a few days of the Vitamin D, so I upped the dose again, to where I was taking between 7,000 – 10,000 iu daily. This is equivalent to about 50,000 iu weekly, which is the dose most often prescribed to someone who is found to be deficient. I am currently pain-free and at this point I am fairly convinced its from taking the Vitamin D on a regular basis.

I ended up getting that Vitamin D test after all as well; since it was in with the battery of tests my holistic MD requested. My level is 39.5 ng/mL. Definitely not in the toxic range! There doesn’t seem to be a consensus on the optimal level of serum Vitamin D; my lab’s reference range goes from 32 – 100 ng/mL. Dr. Mercola says that anything under 50 ng/mL is deficient! So clearly my nearly three months of mega-dosing have not been harmful to me. If anything, I still need more Vitamin D so I’m going to continue to take my large daily doses.

Other benefits I’ve noticed: back in July I noticed that I couldn’t feel my big toes. I realized today that I can feel them. Also, in the midst of really feeling incredibly unwell and experiencing every single textbook symptom of hypothyroidism except for my hair falling, I have long, girlie fingernails for the first time in my entire life. I have been a nail-biter all my life. The few times that I have tried to grow them out, the process is painfully slow and I end up breaking them almost right away. I got acrylic tips on Halloween because my husband and I dressed as Zuul and Vince Clortho and I wanted long, red Sigourney Weaver nails. Two weeks later the tips came off and I was pleasantly surprised to see that my left thumbnail was, while still short, beginning to resemble a real adult woman’s thumbnail. I promised myself not to bite it, and well now its very long!  I’ve been letting the rest of them grow too; protecting a few at a time, and I am beyond halfway to a lovely set of nails!

My only concern is that since August I’ve noticed that my face is often flushed in a mylar or butterfly rash pattern. I don’t attribute this to the D, but its been getting more noticeable lately and I need to figure out if something I’ve been taking or eating is doing this to me. Otherwise, I would call this a victory for Vitamin D and one small part of the chronic multi-illness mystery solved, at least for me.

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Gluten-free SIBO-safe Pork Roast

January 8, 2010

I have never posted an original recipe here, although I do on occasion give shout outs to great recipes I find on other people’s sites and then make that taste good and don’t make me sick.

I have a new blogger friend; I finally am no longer alone in the world of SIBO bloggers. You may have noticed a link to Non-Nosher’s blog in my blogroll, an admittedly small, but growing list. If you haven’t visited the blog yet, you really must. I admit I haven’t yet tried Non-Nosher’s Gluten-free SIBO-safe Pork Roast, but my mouth waters at the sound of it.

No, pork isn’t really low-histamine. Yes, I am still eating low-histamine. As best I can. But I really want to try this pork roast. Look, if histamine turns out to be the cause of SIBO in everyone, then we’ll take this one back, but for now, I really want to leave you with this totally delicious sounding pork roast recipe! I’m planning to try it so soon.

Go here and get it, then go get a nice, humanely raised pork tenderloin and cook it up!

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Pre-diabetes

January 8, 2010

Pretty much everything I knew about diet and nutrition before the SIBO came from vegan propaganda that I read and conversations with other people who worked at the health food store.* Once I got sick, I was on my own to figure out macronutrition and digestive science 101. Although it has all happened while I have kept this blog, the learning has been for the most part behind the scenes, mostly because I just want to help other people with SIBO; I don’t really want to play “teacher” or tell anyone what to eat, and there is a whole basic canon of human chemistry stuff that I just don’t know. I am just a normal person who got sick and had to figure out what to not put in my mouth so as to minimize my symptoms, because doctors and nutritionists were giving me crazy advice that wasn’t working, like don’t drink through a straw, and no more avocados. That is why, even with a meticulous tagging system, your average Year Without Cake reader doesn’t get rewarded with wikipedia-style information on fructose, and sugar and fat, even though from time to time, I have been known to know a few things about those things. I should work on that…

Right after I got sick it became plain that getting doctors to take me seriously and treat me with respect was hard enough as a woman with a digestive disorder, but that being a size 12 probably wasn’t helping either. That whole “You’re not bloated, you’re just fat” thing got old real fast. So I decided to lose weight, and I dug into the research on that topic too. And I’m still working  on figuring out how the metabolic stuff goes along with the digestive stuff. In fact, I’m only just now finishing up Good Calories, Bad Calories…I know I should have done so years ago….I don’t think the two are always related, but for me, what tends to cause digestive problems seems to also cause metabolism problems.

On Wednesday I got all my test results back from the health center, who promised to test my thyroid, my glucose, and many vitamins and minerals. Of course, everything was overwhelmingly normal….except one test. In addition to my frustration over the anything but comprehensive thyroid panel, I was shocked and dismayed to receive the news that with a fasting glucose score of 105, I am, by my lab’s reference ranges, just ever so slightly pre-diabetic.**

I know it is not a big deal, and having suspected that I’m PCOS for years and years I probably shouldn’t be surprised. But all the same, I feel a bit slapped in the face. Considering the lifestyle changes that I have made in these last two years or so with dropping the carbs and the sugar and eating so much more healthily and working out…Even if I find out the low cholesterol is really due to something else…my HDL just keeps going up and up and up. Even with the sudden weight gain, it went up another 10 points.

Maybe I should be glad that I made the changes that I did. Perhaps my state now, after suddenly gaining back 25 of the 35 pounds that I lost (due most likely to underactive thyroid and exhausted adrenals) and becoming sedentary again due to immense fatigue, is only reflecting a mere glance of what things might be like had I kept up my high-carb, size-12 vegan ways and not quit smoking and not started exercising to boot. Because that’s where I might be if I had never woken up with SIBO.

I got a referral to an endocrinologist and a gynecologist, based on this, my totally normal thyroid, and the transvaginal ultrasound, which showed some slight abnormalities, nothing I’m too worried about.

*This might be why I was never able to get down below a size 12 in my 20’s and I probably ruined my thyroid with metric tons of soy.

**My 2 hour glucose test results were normal.

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My Thyroid Tests (Take I)

January 8, 2010

Wednesday I got back the results of all the tests that the regular doc put in for me based on my holistic doc’s request. I am still waiting on my saliva test results for adrenal function, done at a different lab (and on my dime) and I will have to take the hormonal tests on the 21st. There are a few tests I may have to purchase from a lab on my own, depending on the events of the next few weeks. First of all a “comprehensive thyroid panel,”  at least at my health center, is far from comprehensive, and I think this is very important to know, in addition to knowing how dangerous it can be to depend soley on the TSH for diagnosis. My holistic doctor clearly asked for a free T3 and Reverse T3 test; my regular doctor took a look at his request and said ok.  What I got was:

TSH
Thyroxine (T4)
T3 Uptake
Thyroxine, Free (FT4)
Free T4 Index
T3 (Thyronine) Total

And everything was in range by the way; the Total T3 was at the bottom of the range, just as it was a year or so ago for my last thyroid panel. I asked where the Free T3 was and the doctor pointed to the T3 Uptake. I told her that wasn’t it and she pointed to the T3 Total. So I gave up and figured I would have to find and pay for the test on my own. It is confusing but here is what Dr. Kenneth Woliner says about the difference between Total T3 and Free T3:

Triiodothyronine (T3) is a thyroid hormone that circulates in blood almost completely bound (]99.5%) to carrier proteins. The main transport protein is thyroxine-binding globulin (TBG). However, only the free (unbound) portion of triiodothyronine (free T3) is believed to be responsible for the biological action. Furthermore, the concentrations of the carrier proteins are altered in many clinical conditions, such as pregnancy.

In normal thyroid function, as the concentrations of the carrier proteins changes, the total triiodothyronine level also changes, so that the free triiodothyronine concentration remains constant. (In an abnormally functioning thyroid, this is not necessarily so). Measurements of free triiodothyronine (Free T3) concentrations, therefore, correlate more reliably with your clinical status than total triiodothyronine (T3) levels.

Alien Robot Girl of Plant Poisons and Rotten Stuff sums it up beautifully in her latest post; I would refer you there if you are by any chance going through the same thing and in need of information about which tests are relevant.

I’m being referred to an endocrynologist, although I’m a bit surprised considering my normal test results. Its possibly due to the fasting glucose test, the results of which I will discuss in a separate post. This will be my first foray into endocrynology, considering I’ve always been denied my requests to see one in the past. There is a chance that she will take the Free and Reverse T3 for me but I am going to have to purchase them from an outside lab if she will not. And I am not expecting that she will. I would be experiencing high stress and anxiety now over the thought of the experience ahead of me, but I do not need to do so, considering that I have my holistic doctor working in earnest to actually figure out what is wrong with me, rather than trying to get me out of the office quickly and with the full weight of blame on my shoulders for all my physical ailments.

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A battery of tests

January 5, 2010

So back to the story of the new doctor. After getting next to nowhere with my health center doc (or her replacement) I went ahead and found a new doctor. I looked around for an M.D. with a holistic practice, willing to prescribe natural thyroid meds (if thyroid turned out to be my problem then I didn’t want yet another fight on my hands) and a demonstrated understanding of SIBO/IBS. And since I would be paying out of pocket, the new doc also had to be in my price range.

A few emails and phone calls later I had found my guy. He didn’t diagnose me over the phone, but he said I sounded sick (obviously he was attempting to curry my favor right away! – imagine listening to me describe my symptoms and then flattering me by saying that I sound ill!) He mentioned a few things that he would look into were I to become his patient, such as low thyroid function and hormonal imbalances as well as fibromyalgia. He recommended me to look over his preferred treatment protocol and told me to call back and schedule an appointment if I liked what I saw. Which I did, so then I did.

Schlepping all the way from Queens to his Brooklyn office in the snow wasn’t easy (regardless of what you see on the map, the two boroughs are not that convenient to each other!) He asked about my symptoms and within a few sentences he was naming them all for me. Salt cravings, weight gain, inability to get warm, low blood pressure, lots of colds, PMS and painful periods. He definitely listened to me when I talked but he did tell me pretty quickly that he had my diagnosis all ready based on just a few answers – adrenal fatigue and hypothyroidism. He gave me a saliva test for cortisol to take home and perform. And a laundry list of bloodwork to get wherever I could and bring back to him for analysis to test for not only thyroid, but blood sugar problems and wacky hormone levels suggestive of Poly-cystic Ovarian Syndrome (PCOS.) He also gave me a prescription for Nystatin to clear up any yeast that I might have.

Walking to the train in the snow with my husband, I didn’t know exactly how to feel. I was exhilarated that someone with medical authority had finally declared me truly ill. I was terrified that I wouldn’t be able to get the tests done at the health center and worried that I could never pay for them on my own. I was a little skeptical and here is why. In a perfect world, where I would name off all of the things that I would suspect might be causing my symptoms, between a lifetime of a sluggish metabolism, suddenly getting ill four years ago, and then crashing into a brick wall this summer with my energy levels, weight control and digestion, he named every last one of my suspicions. Including a few things you really only hear from holistic doctors, things I used to “not believe in.” Thankfully, I’ve recently learned a lot about yeast from a really well-researched Yahoo group member; were it not for her I may have mistrusted any doctor willing to give me an antifungal. I had also just begun to research adrenal fatigue before I saw my new doctor, and between some reputable sources recently coming out about having or suspecting this condition, and every last one of the symptoms fitting me, I think I’m willing to accept it.

So back I went to the health center. Replacement Doctor had put me in for a transvaginal ultrasound to check for fibroids or ovarian cysts. And a chest x-ray for who knows what, my only guess, thanks to a helpful Yahoo group member, (do I talk about these guys a lot lately or what?) would be sarcoidosis. Both were entirely uneventful outside of having to drink about eight million gallons of water in prep for the ultrasound, which was miserable because I visibly and painfully bloat when I have to pee. Additionally, the technician was fantastic; we discussed girl diseases, gluten-free living and dismissive doctors while she probed me!

Then I saw my (old, regular) doc. I told her of her replacement’s dismissive attitude. I told her that nothing had gotten any better. I told her what had happened with the new doctor (I lied and said he was recommended to me by a friend of the family.) I made some purposely muddy statements about family medical history (being adopted, there is a lot that I do not know and in the past this has been held against me.) I sheepishly handed her the list of tests. All while the nurse was getting my BP and other vitals. Then she put me on the scale. “Wow, you have gained a lot of weight.” The words never sounded so lovely to me. She started ordering the tests. One by one, she put in almost every single lab that my new awesome holistic doctor had ordered for me.

I went in again a few days after Christmas to let them draw blood. It took two days of trying to get up early enough to go before work to actually get there. I went over all the labs with the technicians to make sure they would not do the hormone tests; as the doctor had asked me to do those on the 21st day of my cycle. Blood was drawn for a Vitamin D test, (Replacement doc denied me this test since my calcium levels months ago had been fine,) AM Cortisol, DHEA, Iron, B12 (even though I just tested terribly high two months ago) Hemoglobin A1C, and a comprehensive thyroid panel. I had terrible diarrhea after drinking the dextrose solution for the fasting insulin test. I ate lots of carbs that day thanks to getting all freaked out by 75 grams of sugar at 8 AM. I have eaten very clean ever since that day, as my bloating and abdominal aching have been quite bad due to my period. I’m going to go in on the 21st (because my cycle has it like that this month) and have more blood drawn for hormonal testing.

I will get the results of the tests tomorrow. Normally this would be a really harrowing experience and I would be getting a little anxious about going to the center just to get handed a bunch of normal results and told that I really just need to relax and exercise. Instead, I am just not that tense about it now, knowing that whatever the tests say, I will just smile and nod and take the labs to the new doc at the end of the month and let him make the decisions. I am  probably most interested in the results of the ultrasound,  since I had one a while back and never got the results but yet many a gynecologist (I have gone through a few but not by choice) has told me that my lady parts are riddled with cysts and fibroids. And I am a little worried that the health center’s idea of “comprehensive” just isn’t. I was put in for a thyroid panel back in 2007 and it didn’t include the very important free T3 test that my new doc wants. However, these things must be dealt with as we get to them; no more stressing out over future worries. Just a few weeks ago I thought I was staring at thousands of dollars worth of labs and I didn’t think I’d get any cooperation from my health center. Now they’ve done the lion’s share of them already. And I just found out that a program through my job will reimburse part of any of my out-of-pocket medical costs for tests. So anything can happen, and worrying about the future won’t get us anywhere. Bleeding a lot, into several small tubes, however, will.