A Year Without Cake Reviews a Website

About three weeks ago I got something interesting in my Google alert for SIBO. Not as great as the time I found Non Nosher’s blog, but still pretty good. On a Cure Zone forum, someone had posted that their IBS and SIBO was gone. The teaser text in the body of my email read, “Hi all, please visit my public site for more information regarding the natural remedy for IBS and SIBO. Mine was cured. This is not a scam!…”

So of course i clicked over, pretty sure it was a scam, but still… Only I found that the message had been deleted by a moderator before I could get to it.  I got it in my mail again the next day; different forum, same result.

So that’s all it took – two Google alerts and I bit. I had to know what was behind this.

This site tells a brief story about a guy with SIBO who tried lots of remedies but couldn’t find lasting relief.  And then suddenly he stumbled upon a natural remedy, and he was cured. And now he’s offering to tell you all about the natural remedy – for a $10 donation. (It was $8 when I donated.)

Yes, that’s right. I donated. Not because I thought $8 would buy me a cure.  But because I needed to know exactly what was going on!

And now I know! Here is my interpretation: Send in your donation. Wait 24 hours. You will get an email; it is well-meaning enough, I suppose, in which he will tell you what worked for him. That is, he will tell you what that substance is. He claims it is hard to get. But hey, don’t worry! If you send him another $8 (probably $10 now,) he will tell you EXACTLY where to get it. That sounds fair, right? Wait, what’s that? It totally doesn’t sound fair? Yeah, I know. That’s why I’m publicly denouncing this scam right now.

I know the effort that goes into being sick and trying to get well; this is all I have been doing for four years now. Do you know what I will do when I happen to come across something that makes me feel better? I’ll write in my blog about it. That’s it. The end. I’m not trying to be a jerk here; but a person who tries to profit off of a community they should be…actually communing with…is not cool. I sort of get it; if he were out there on the forums, and in my group talking about his “natural cure,” he wouldn’t be making any money.

So His decision to try and sell his “secret” is his own; I suppose I can see why he thought it was worth a shot. But he might have done his research first; this community (people with SIBO, IBS and Celiac, not to mention well-researched bloated folks) has done nothing for the past four years if not surprise me with its vast intelligence. This must be the reason why today, three weeks after i first encountered Mr. Adios, his posts are still coming to me in my Google alerts, and the posts are still removed by mods before I get there.

That’s my review. Two thumbs down. Don’t give this person your money. Spend it on yourself instead.

A week without you; thought I’d forget…

…Two weeks without you and I still haven’t got over you yet!!

Summer is like the biggest test of my humanity ever. Ever! Always has been. And even as I age well, become more human each year, the realness of my own mortality bringing me closer and closer to a true appreciation of blinding hot east coast humidity, and making me friends with my own worst features (sweating disorder, too fat thighs and upper arms, too…burn-y skin and an overall paleness that borders on pasty,) summer gets stronger every time. What I mean is that I haven’t ever really liked summer. As a fat, sweaty kid, it was always the worst part of the year. Hanging out at the community swimming pool, getting made fun of by the skinny kids. Whatever. I grow older and I get to like it more. Because I have to; summer is just a part of life without cute coats.  I deal a little better with my own shortcomings; I get fitter and thinner and I adapt and cut my hair; I grin and bear it. I buy a bathing suit and lay in the sun.  And then when I think it’s all OK and I’m totally normal I get Rosacea. And now I have to spend all summer getting asked why I’m so red, did I get too much sun?

I did not take a four-month long vacation. I took a two-week long vacation. And when I came back it was extra hard to adjust back to real life. (Story of everyone’s life.) My laptop broke in February. Husband’s laptop started acting up. And the web policy at work blocked WordPress. So that’s why I haven’t blogged in a while. I purchased a netbook last week and now I’m really looking forward to catching up. I’ve been reading a lot, so now to get my thoughts in order and respond!

A Vacation without Cake Not Likely

So there’s no time for a more in-depth update before I’m off on my vacation; that will have to wait just one more week.

Leaving your life for a week of fun and adventure when you’re sick is hard! Flying, especially, can be hard on an already imbalanced digestive system. Obviously when the alternative is feeling bloated and sore at home, feeling bloated and sore in a foreign country is not so bad. And there is always positive thinking, because it could be much worse and we should be thankful that it is not. But yet there is always the fear of wasted time and opportunities; what wonders will I miss out on should I start to feel ill? All the time spent planning each careful part of the adventure seems to go to waste.

But I’ve been feeling a bit better lately so here’s hoping that it will be a good trip all the same. Have a great week without cake. I’m probably going to eat some cake, at least once, right before bed, while I’m vacationing in Ireland. Most likely from this restaurant.

Beir bua agus beannacht!

His and hers low thyroid

With all that’s going on with my thyroid, I thought I’d relate this quick story about my wonderful husband. Back in December he complained to his doc of being tired, at my behest. I think he would hate for me to list out his symptoms but he has most every symptom of low thyroid except for weight gain. And his mom is hypothyroid and has been on Synthroid forever. The doctor (we have the same doctor, you may remember – she doesn’t know what a Free T3 is…) put him in for all the regular tests, including a TSH for his thyroid. January was just absolutely tragic for us and involved traveling back home for a death in our family. Between that and his job, and his migraines, he didn’t actually get the blood drawn until late January. He had a follow up with the doc recently and got the results. My husband’s TSH is 3.6.3.6! And surprise, surprise, the doctor says he’s just fine.

Are you SERIOUS? Even if you want to worship TSH, and I know first hand that his doctor does! what about the reference range? You know, the one we’re all supposed to be using that was recommended by the American Association of Clinical Endocrinologists way back in 2003? According to that reference range, 3.3 is the cut off! Well, reference range is after all, just a suggestion, and all labs use their own. Turns out our labs cut off at 4.2 – over that you’re hypo. So we are both out of luck for a diagnosis. How lucky we are. And by the way, what a coincidence that my husband and I are both just whiney, lazy, sad tired people with cold hands!

I know I complain a lot about my healthcare arrangement. I honestly don’t think there is anything especially bad about my specific healthcare facility/coverage or the specific doctors’ attitudes towards and care of myself…I never have, and this proves it because my husband is now facing the same thing. I’m mostly concerned about the state of conventional medicine overall.  And the state of our finances! We are already paying out of pocket for my holistic MD, a hormone specialist who is treating all of my hormone imbalances (update coming early next week) and it looks as if we now have to send my husband in to see the holistic as well. That’s two of us paying full price to see him, but at least we will both feel better in the end.

The etymology of an orphan

Xifaxan and its manufacturer, Salix, has been making news all week. An FDA advisory panel recently recommended the approval of Xifaxan in 550 mg tablets, as an Orphan Drug  for the maintenance of remission of hepatic encephalopathy (HE,) a dangerous result of liver failure.

Xifaxan or Rifaximin, is almost always the front line antibiotic used to eradicate SIBO. According to the literature, it has many advantages over other antibiotics. As a broad-spectrum, non-absorbable antibiotic, it is not absorbed into the bloodstream and it acts against both gram-positive and gram-negative pathogens. In many trials, the administration of Rifaxamin has produced a very low occurrence of side effects and additionally the risk of antibiotic resistance is lower with Rifaxamin than with many other antibiotics. Probably the most unique property of Rifaxamin, and also what makes it most useful to people with SIBO, is its demonstrated efficacy against bloating!  It has also been used to reduce or eliminate cutaneous lesions in Rosacea patients with SIBO.

To be honest I am unclear of the FDA’s recommendation for people with SIBO. If there is an impact, what does the drug’s status as an orphan drug mean for SIBO?

According to Wikipedia, the Orphan Drug Act is “meant to encourage pharmaceutical companies to develop drugs for diseases that have a small market.” That is certainly SIBO!  However, orphan drugs have to treat orphan diseases; conditions that affect fewer than 200,000 people in the United States. I have no idea how many people in the United States suffer from SIBO. During holidays and office birthday parties when I watch everyone eat candy I feel like I may be the only SIBO patient in the nation.

It may not matter whether or not SIBO is an orphan disease. Just a day before the news broke of the FDA recommendation, an article discussing the deliberation noted that Salix is planning to submit a new drug application for Xifaxan this year, specifically for the irritable bowel syndrome indication in the first half of 2010.

 Currently, Xifaxan is prescribed to people with SIBO off-label. The developments of Salix’s new application for Xifaxan for IBS will be of some interest to the SIBO community because if it is approved then Xifaxan could be prescribed specifically for SIBO. Xifaxan has not worked for all of us; I have taken several courses and sometimes it works and sometimes it doesn’t. However, the largest issue with Xifaxan for SIBO is the prohibitively high cost. Most insurance companies just don’t cover drugs when they are used off-label. If Salix’s application is approved, more people with SIBO will at least be able to try Xifaxan. Which, I believe is a good thing. It is interesting to note that there were questions of both efficacy and safety during the HE study, and the SIBO community should be on the lookout to see if these same issues arise during the IBS studies.

Hot Water Bottle Syndrome

About a year into experiencing mysterious digestive symptoms I also noticed that my belly was always kind of red and blotchy. The blotchiness doesn’t exactly come and go, but it does fluctuate in intensity, and it has a very specific shape – a lacy red ventricular pattern under the skin, like latticework. It is not raised, it doesn’t itch, it doesn’t hurt, etc. I never used to think of it as particularly noticeable to anyone but myself and my husband; I wore a 50’s style bikini to the pool a summer ago and I even took a burlesque class last fall and was completely more embarrassed about my flabby triceps than my blotchy belly. I have noticed however that it has gotten worse and worse in the past few months. I have wondered in the past if it had to do with using a heating pad so often; when I am not feeling well I even sleep with one, but it never seemed to go away, even in the months where I felt good gave the heating pad some much needed rest.

I asked my endo what she thought of it and she said she thought the surgeon who removed my gall bladder may have snipped something he wasn’t supposed to and screwed up the vascular system just a little bit. That sort of made sense but I wasn’t sure. I made a mental note to ask my new holistic, whom I love, but I forgot! I did some research on my own and thought that it looked a bit like livedo reticularis, but this condition usually occurred on the legs.

Last night was the first night in a while that I slept with the heating pad through the entire night – easy enough to do with the window cracked and the chill of the Blizzard of 2010 streaming in! I dreamed that I burnt my stomach and when I woke up, I actually had. Ouch! Then I noticed in the shower that the lacy pattern was bright, bright red, more pronounced than it had ever been! My husband immediately found a picture of something called Erythema ab igne online.

Erythema ab igne, or “Hot Water Bottle Syndrome” happens often after repeated exposure to heat or infrared radiation. Digging around through google image search and the online catalogue of many skin condition image collections, Erythema ab igne is the only one I’ve ever seen as frequently on the backs and bellies of patients as on the arms and legs. I am beyond sure that this is what is going on. I suppose I have been using the heating pad way too much, on too high heat. I think I have even desensitized myself to the heat because I recently bought a 2nd heating pad as the first one just wasn’t getting hot enough for me anymore. Really I think its probably common sense not to sleep with a heating pad but then again chronic pain is chronic pain and you do what you can to deal with it.

Needless to say I’m a little distraught. As if I haven’t been feeling ugly enough with the butterfly rash redness and the weight gain.  Worst case scenario, I must get it looked at and possibly biopsied to ensure that I don’t end up with skin cancer.* I often spend my entire day at work just dreaming about getting home and lying down with the heating pad. A far cry from dreaming about getting dressed in my cutest outfit and going out dancing with my friends, but c’est la vie. There is nothing else that makes the pain go away and it even helps with the bloating. Now I don’t know what I will be able to use for comfort except for castor oil packs, which will hopefully help.

Click here to read about a boy Chron’s Disease who has given himself erythema ab igne with a heating pad.

*I realize this sounds a little like the words of an alarmist who does nothing but spend way too much time diagnosing herself online but seriously. Wake up and look like this one day and WTF would you do?

SIBO is not Candida

I am seriously always butting in where I am not invited. At least I have learned to give disclaimers, and I don’t shove Atkins down everyone’s throats anymore (although its pretty obvious from your symptoms if you are most people!) and now I’m also not such a candida-denialist. (Thanks to my group and thanks to having been on Nystatin and Diflucan for more than a month now RX’ed by holistic doctor.)

In summary, a woman from California (I mention this only because the entire board is for residents of the Central Coast, not girls in Queens!) asks how to get rid of SIBO “naturally.” Of course the first answer is from someone telling her that she has an “idea” that her SIBO is not actually SIBO but really it is Candida.

It’s really hard for me to sit by and watch people deny that SIBO exists. Sometimes, like in this case,  they are well-meaning people, with a background (either as a patient or a practitioner) in natural medicine.  But often they are just selling something, like Dr. Jeff with his McCombs Plan.

Anyway, I jumped in and here is my response:

The only natural treatment for SIBO with any research to back up claims is enteric coated peppermint oil

I moderate a support group for SIBO with 80 members and therefore speak based on the experience of myself and these folks – I am NOT a medical professional. With that said, I have found that you must take peppermint oil for a long time, (6 months or more) alongside other treatments (antibiotic/probiotic) and you must rotate it with other natural anti-microbials (garlic oil, etc.) if you want it to work.

Candida is very real and can co-exist with SIBO. However, the two are not the same. Just because most people have never heard of SIBO or don’t know a lot about it; they dismiss it and call it candida. Yes the diets are similar but they are not the same thing. SIBO is colonic bacteria inhabiting the small intestine. It is not a yeast, friendly or pathogenic. Even the Environmental Illness Resource differentiates the two.

With a SIBO you have to avoid fructose, and fiber. You need something with anti-microbial properties in order to kill the bacteria that exists in the wrong location. Probiotics can assist in ameliorating symptoms, but if the housekeeping wave isn’t working correctly to move things out of the small intestine and into the large, you might be compounding the problem in the long run by loading up on more bacteria.

I have been researching SIBO for years now and I have not run across a natural treatment. Yet it is an important part of the entire treatment regime because Holistic or natural medicine can work to correct imbalances in the body that create an environment that is SIBO-friendly. For example, SIBO can be caused by an underactive thyroid. A holistic MD who treats thyroid based on symptoms and body temperature may detect low thyroid in an individual who would be told by a conventional endocrynologist that they are “normal.” He or she can then treat the patient’s thyroid, adrenal, testicular and ovarian hormones and bring the patient to hormonal equillibrium, helping to create an environment less friendly to developing SIBO. However, if you take a look at the study linked above, you will see that even after treating for hypothyroidism, SIBO patients still needed antibiotics to kill the bacteria.

Other natural things you can do: Eat whole foods, (you are probably already doing this!) Avoid things that you know bother you, whether they are “healthy” or not. It is also very important to take HcL with meals because stomach acid kills off most infections that try to get into the gut, contributing to most bacteria being in the later part of the intestines (colon or large intestine) where they belong.

A very personal request

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

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

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!

Vitamin D

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.

Gluten-free SIBO-safe Pork Roast

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!

Pre-diabetes

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.

My Thyroid Tests (Take I)

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.

A battery of tests

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 21^st 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 21^st (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.

white carbs

I know with a title like that you are expecting a masterpiece really, a complex tirade bordering on manifesto, containing both opinion and fact, insanely well-researched but perhaps a little preachy….but honestly I think there are plenty of those out there. We all know how bad white carbs are for us, how good they taste, and how bad they are (I’m putting that point here twice for emphasis!) Making the switch as I did from vegan to veg to low carb was difficult emotionally; one thing that made it possible, despite the near immediate symptom minimization, was tons of patient research on my part. Reading blogs, books, articles, etc. about high fat/low carb made it really clear that it was not only going to help me manage my symptoms, but it would probably extend my lifespan and really improve my health!

Sadly, however, there was something differentiating me from all those super hardcore low carbers; something even more obvious than my tepid taste for meat – it was my desire to beat the SIBO and whatever else is ailing me so that I can once again return to eating carbs. I know. Its disgusting. High fat/low carb has done wonders for my health. My cholesterol has gone down from the 180’s (as a vegan) to 169. Go figure! My HDL continues to soar upwards and is currently at 85.  I could never lose weight as a vegetarian; but eating low carb I was able to lose over 30 lbs. I maintained my loss too, until this summer when I began to come down with symptoms of something I suspect I’ve been fighting off all my life – overt hypothyroidism (more on this later.)

So this is my dirty little secret. I dream about carbs. I wish for carbs. I desire carbs. Not just any carbs; white carbs.  Fluffy rolls, steaming baked potatoes, discs of sticky white rice.  And it is in the interest of full disclosure that I tell you this before I talk about the retraction I need to make.

A few posts back I wrote:

First of all, when you have SIBO, fiber becomes fairly indigestible. If you can easily digest fiber, I’ve got news for you – you probably don’t have SIBO. Secondly, most sugars aren’t digestible either, so if you have no sugar, and you have no fiber, all you’re left with is starch. And guess what? While Dr. Pimentel says you can eat all the potatoes, pasta, rice, and bread that you want, (and I hope for your sake he’s right) you may be like me, and those foods may bother you about as much as low GI carbs do.

Well, I noted earlier this year that I am really a social scientist, not a scientist, and readily admitted that sometimes I would be wrong about things. Who would have thought I would be wrong about something I could easily go to my bookshelf and confirm? But I suppose that is the nature of brain fog.  I am lucky that a  really astute poster in my Yahoo group recently pointed out to me the error of this last statement, the one about the starches, and I’m so glad that he did!  In A New IBS Solution, Dr. Pimentel does not actually say “Hey you can have all the white carbs that you want.”  He does allow potatoes, pasta, rice and breads, but his very specific dietary guidelines are actually self-limiting when it comes to these foods;  not only is all food restricted (to a certain degree) by allowing the patient only three meals per day, but portion sizes for these foods are explicitly listed; they are kept on the small side and the patient is allowed one per meal.

Personally I find it difficult to keep portion sizes small when eating white carbs, particularly starches. I don’t think that would get me any votes for “Most Unique.” I don’t want to speak for the original poster, and I especially don’t want to take his great theory and get all the credit for it. Maybe I’ll ask him to guest blog sometime soon. If a person actually notices symptom improvement with small portions of these foods that one doesn’t see when eating zero carb, then the question is this: given that one could actually control their portions….and this is the most important given…is it better or worse to eat these foods? A small side of rice with our brisket? Our boneless, skinless chicken breast between two slices of…white bread?

What do you think? Can you control your carb portions? I haven’t really ever tried. I usually just eat white carbs when I’m “cheating.” I’ve been thinking about a life without anymore “cheating.” I realize its not easy but maybe its worth it. Or maybe its a good resolution for the New Year to control my portion sizes (starches only – no gluten) Or maybe I don’t need white carbs at all. I’m just not sure which life is better – one with mastery over my surroundings or one where all temptation is ultimately removed.

Happy New Year Without Cake!

Let’s make it a good one. I have a lot of things in mind for how we can do that, but it mostly comes down to talking about what we’re going through, with each other, as loudly as we possibly can. There is so much activity in the yahoo group right now that I can’t keep up with all the posts. Some of us are really suffering right now and some of us are feeling better. I shed a tear for what we are going through a few mornings ago. But if we’re going to be going through it, its best that we’re all talking about it together.

I owe people blog posts and comments and replies to comments and messages and emails. These are coming. Tonight, however, I’m enjoying a healthy chicken dinner and a few hours of Rock Band with my friends. I love New Year’s Eve and New Year’s Day and the chance to start fresh or inject new life into ongoing quests. I didn’t really take time to make resolutions this year but here are a few things I’m thinking I want to do:

Find out how what things I can do to feel great and do everything in my power to do these things the right way

Stand up for inquiry and the questioning of conventional wisdom whenever I can, and be willing to accept conventional wisdom when and if it is actually right!

Continue being an advocate for myself and be an advocate for someone else

A new doctor

I mentioned a few posts back that I was going to see a new doctor, but I didn’t elaborate on the events that led up to that decision. If you’ve been reading since the summer you’ll know that I’ve not just been dealing with what are typical SIBO symtpoms for me lately, bloating, diarrhea and body aches; in fact, although I have been dealing with these symptoms, I would say that they have not been at their worst lately. Rather what I have been experiencing is crushing fatigue, crazy nightmare monthly periods, a heightened frequency of syncope, muscle weakness, and between August and October I packed on 20 lbs (14 of those by the end of September) and this weight isn’t going anywhere.

In October I had gone to see my regular doc at the health center, to see if she had any suggestions on the fatigue. It is important to note that I recently requested my entire medical record from the center and one of the many things I was surprised to see is that there is no mention of SIBO in there at all, outside of doctors writing things like “Patient says she has “S.I.B.O”” or “She says she has bacterial infections in her digestive tract…” This is because the health center never has offered the breath test for SIBO, so I had to go outside the facilities to find a doctor in NYC who did. Even my gastro who offers me Xifaxan mentions the SIBO by proxy in his files on me, since he isn’t the one who diagnosed me with it. So really I was starting kind of fresh with this doctor’s visit, and that was fine by me. Turns out I had an even fresher start than I imagined, as my own doc was out sick that day and I saw someone entirely new. I told her I was fatigued and that I had gained weight. She put in a few tests for me – a Comprehensive Blood Panel (CBC) and a TSH test (one of the thyroid? hormones.) I also had a standing order for a B12 test from my gastroenterologist.

Of course everything came back within range. Some noteworthy figures – my cholesterol has gone down again and now sits at 169. My HDL has increased from 75 to 85. My blood pressure that day was 98/64. And I had a TSH of 1.9.

I am no thyroid expert, so I’ve been doing quite a lot of research lately and from what I can tell this is a great number. In fact, even in the world of lower ranges, healthy people, and thyroid patients doing well on the right medication, 1.9 seems to be a number where many people feel great, although some need to be as low as 1 to feel good. Historically, however, it is somewhat high for me. Back in July of 2007, at a weight of 177, before I started eating meat and exercising and dieting, my TSH was 2.06. A year later I was 20 lbs lighter and it was down to 1.72. This June, at my lightest (and most energetic) it was down to 1.32. Now 6 months later its at 1.9. Its funny having to get into a brand new field of research; I really don’t know if this type of fluctuation is considered negligible or if it is actually important. All I do know is that I felt very differently at each of these times.

And of course I am completely aware of the TSH is worthless theory, and I don’t say I knock it, but I always try and give conventional medicine the benefit of the doubt to start with anyway. More on this later.

So all the test results were good, everything was within range and only one indicator – the G-GTP, or Gamma-Glutamyltranserase, was at the bottom of the normal range (normal being 7 – 51, my result was 8.) I believe that G-GTP is a bilary enzyme. My B12 blood levels were actually high: 996, where my lab’s top number is 948. So the doctor gave me a clean bill of health and then stared at me blankly. Of course I was upset. Why in the world am I feeling so fatigued? She told me I was probably getting too much sleep and to get out of bed earlier. I asked her about the weight gain and she said nothing at all and kept writing in her book. I asked what I should do about the painful periods and she scheduled me for a transvaginal ultrasound and a chest x-ray.  

So much for a fresh start. We called the new doc, scheduled an appointment and started saving up for his consultation fee. And I’ll discuss his initial findings and the tests he ordered for me in the next post.

Vasovagal syncope of the untoward kind

One of the most embarrassing things to ever happen to me occurred when I was about 16 (surprise, surprise!) Although I didn’t have SIBO way back then I did have some intermittent IBS that came and went until years later when I started eating vegan. It was a party of some sort at my boyfriend’s house and I had eaten a lot of junk food and I started having stomach cramps. I went to the bathroom and that’s where the trouble really started. In addition to spasmy, crampy pain, I started to feel like I was going to throw up. I sat there on the toilet, having terrible diarrhea and getting more and more nauseous. I got hotter and sweatier and I started feeling like someone had dropped me into the bottom of a giant metal cup; all my hearing got tinny and thin. The next thing I know I was on the floor, and my boyfriend’s mom, head of Cardiology at a local hospital, was kneeling overtop of me. I had lost consciousness while on the toilet! She checked me out and I was fine. Cramps and nausea and everything else were gone. I cleaned myself up and that’s all I remember – I most likely lay down and went to sleep if I didn’t run back home out of embarrassment!

My sister took me to the doctor a few weeks later. (This would seem to be pretty par for the course for most folks, but actually going to the doctor when something weird happened to me would not be a theme in my life for the next decade or so.) He asked a few questions about what happened and although my boyfriend’s mom didn’t accompany us, she told us what to say. He did a few routine checks, found I had low blood pressure, and therefore pronounced me subject to vasovagal episodes, and bid us good day.

And it has happened to me ever since. Not a lot, but a couple of times a year most every year. And these past few years it has happened a few more times than that. In my life I’ve woken up on the bathroom floor more times than I’d like to remember (I used to think I had just lain down;) most usually on the bathmat, occasionally in the bathtub (with a bruised head to follow,) and once with my husband kneeling over me the same way my high school boyfriend’s mom did. “Oh I never told you I passed out?” I asked sheepishly…

To date in 2009 I’ve had 3 vasovagal episodes; 2 of them have occurred this week. Back in March I had the pleasure of passing out in front of a doctor; this meant I woke up to pure oxygen, which was quite pleasant! Both times this week when they occurred I managed to avoid full-blown syncope; the first episode was rather mild, but the second time was a bit traumatic. By now I’ve learned to just lie down on the floor when I feel it coming. But I was in the ladies’ room at work so I had to stay put on the toilet. And the prodome to losing consciousness just wouldn’t end. The nausea was terrible and I nearly completely lost my hearing. And something happened which I’ve never noticed before – I shook for about 15 seconds at one point, nearly falling off the toilet. I was worried that I was having a seizure but I was still awake. I asked my husband about the convulsing later, since he was actually present during the episode in the spring, and he said that I shook a bit before I collapsed then too.

I think the worst thing ever about my vasovagal episodes, besides the nausea, because I really can’t stand that part, is that they happen on the toilet. I don’t know what a blog about bowel disease would be without lots and lots of frank discussion of bowels. And years of blog posts, forum posts and doctor’s visits have definitely desensitized me to the topic. But before the SIBO, I wasn’t known as someone with a particular penchant for potty humor or conversation. I don’t really like to talk about going to the bathroom, I definitely don’t like to tell funny stories about the bathroom, and I have even shunned a good morning or goodbye kiss or two when just standing in the bathroom as I much prefer the sterility of the hallway. Yet here is where I like to pass out. Not fair.

It gets better. If you follow the link to the wiki entry on vasovagal episodes, you’ll see that what I have is actually even named after going to the bathroom – defecation syncope. That’s right. So, years of feeling awkward as a teenager/early twenty-something don’t get made up for here. Because I faint – how feminine of me, but I faint on the toilet. Awkward indeed! This is no gender-role-validating, subservient Victorian frail act, oh no, but rather something vile that I do behind a closed door. Turns out I would have to wait for several more years to come down with a condition with the word ‘intestinal’ in it before I would be made to feel girly by my own malaises*.

Of course, like many conditions from which I suffer, lots of ideas (but not all) about vasovagal syncopes center around the psychological aspect, and assume that triggers are triggering for emotional reasons, not necessarily physical ones, or at least that there is some emotion mixed in there somewhere. I do also pass out when I see my own blood. This keeps me from giving blood and when I get tattooed or have blood drawn for labs its essential that I don’t look at what’s happening to me. But just like defecation, I don’t have any particular emotional reaction to blood. This is probably hard for some people to understand, especially as they watch me go under, but I’m not squeamish. In fact, I used to be a big fan of gory movies. I don’t fear needles or bleeding. I don’t mind blood at all. Just like I don’t particularly like or dislike going to the bathroom anymore or any less than anyone else. But I cannot give blood or plasma and when I get a tattoo I have to make decisions about colors before we begin, and I have to trust the artist implicitly.

Here’s hoping to a relatively calm rest of the year…I’d like to end on no more than three!

 

*Sarcasm!

Update

Something strange is going on with the blog; it looks as if everything past October is gone. This is probably only a temporary snafu, but I was thinking of posting anyway, so this update will serve as a test and a real post I suppose.

Yesterday I had flu-like symptoms, and when I took my temperature, it ranged from 95.5 – 96.5 F. Today my temperature is higher but not feverish, but I am home sick all the same, coughing and sneezing and sweating and as an added bonus I have menstrual cramps. Yesterday, in my non-feverish yet totally flu-like haze, I bought an Atkins bar. The small amounts of malitol and sucralose did not bother me as they have in the past. However, chocolate is not allowed on the low-histamine diet. The mistake caused me to consider throwing in the towel on the low-histamine diet, which has not brought about any changes. It had only been three days, but the person in the Yahoo group felt great after 3 days and began to add in the allowed carbs. I kept up the show, however, and just skipped out on food for the rest of the  work day, not being too hungry anyway. I came home and had a few ounces of lamb and a half cup of homemade mashed potatoes for dinner. I also ate a small amount of peanut butter and ricotta cheese and pecans. I was so bloated and miserable all night.  Today I started my period so whos to say what is and isn’t making me ill, between the flu and that.

This blog gets a lot more traffic when I’m feeling well. Of course people want to know how to be cured and how to feel better. I really want to know that. I’m tired of the things I want to be doing falling just out of reach. I’m tired of being someone who makes an effort to be healthy but keeps falling ill. With little colds, feeling flu-ish, etc. I have finally banished the migratory musculoskeletal pains, “bone pain” as I used to call it, and I think this is thanks to mega-dosing with Vitamin D. I’m super grateful that they are gone; the pain was really debilitating at times. But I am still dealing with the bloating and distention, the abdominal cramping, the weight gain, the sneezing and runny noses, and now dizziness and achiness. I am going to see a new doctor towards the end of the month. We have to wait until then because he is outside the union healthcare system, which means I will have to pay out of pocket. He is a holistic doctor, and some of his patient testimonials talk about how he helped people fix their subclinical thyroid and yeast issues. I have held some pretty firm anti-candida views in the past. However, at this point I’m fairly willing to believe that if bacteria can overgrow, then yeast can too. And I’m nearly positive that my thyroid is busted. Test results be damned. So I’m hopeful.

The last days of histamine

Thanks to some enlightened and well-researched yahoo group members, and their forward-thinking doctors, a few of us are geared up to try a completely new dietary approach at managing our SIBO – a low-histamine diet. We’re still gaining clarity on the connection between histamine and small intestinal bacterial overgrowth, so a review of the relevant lit is yet to come. In the meantime, you can do a cursory google search and see that the Rosacea community is ahead of the SIBO community in making this connection.

In the wake of Thanksgiving and yet another unsuccessful Xifaxan course, I had to throw something up on the blog about getting ready to trial this diet. I’ve had this entry up all day long; its been lingering in the background behind my work and research. It has actually been that difficult to think of the right words. This is only partially because of brain fog. And it’s a slow day at the office. Mostly it is hard to know just what to say about the duality of emotions that I’m having about this new approach.

I’ve been reading about food chemical intolerance since I’ve been sick, especially this site, of course, and I just never thought it could apply to me. Bloating and distention are so vague. But time has crept up on me has it not? I’ve had SIBO for 3 years now. I don’t just get bloated and distended. I have migratory myalgia. I have sleep disturbances. I am crazy tired. I have a low body temperature. I get brain fogged and confused and angry and weepy and terrified and anxious and I obsess on my own death. I didn’t just struggle to lose 35 lbs over the course of two slow agonizing years, I gained 2/3 of the weight back overnight after I bought the Nourishing Traditions book and made my own kefir and bone broths at home. I’m freaking out and the quality of my life is going down and the Xifaxan isn’t working the way it used to.

I thought being sensitive to food chemicals would make me special, and I haven’t, through the three years of shitty doctor visits and normal lab results, felt that I deserved to feel special. So I have yet to go down the food chemical path. Until now.

Will this lead to a more exhaustive investigation? We’ll see – this is really new territory for me and my diet is super histamine-y. I am tempted to jump into FAILSAFE but I think I should take things easy and first get used to a life without cheese. Cry.