1.07.2012

My friend SIBO (and by friend I mean mortal enemy)

PLEASE READ: I have amended some things on this post, and have added more in my follow-up posts and updates found linked with the "SIBO" label found HERE.

So I finally had some time to sit and write about the crazy health roller coaster I've been on this past year. I'll warn you that it involves stomach ailments of the worst kind, and I can't imagine anyone other than fellow sufferers and possibly some family members actually caring to read on. But if you love TMI, go for it.

It seems I have a new life partner, and it goes by the name SIBO. SIBO is short for Small Intestinal Bacterial Overgrowth. And it has been hanging out in my body for quite some time now. I will distill the bulk of this down so that I don't have to relive all of the horror that was this summer (and so that you can keep your appetite). But essentially I was starting to have severe stomach issues every few weeks that mimicked the stomach flu (cast your mind). Of course I couldn't function that way at all, so I started seeing a gastroenterologist who ran lots of tests (blood tests, stool tests, more blood tests). I didn't have celiac, IBD was a negative, no parasites, thyroid a-ok, and all my bloodwork was normal. Commence head scratching. I was diagnosed with "leaky gut" (which isn't a diagnosis at all—it's a symptom). And after no relief, I finally opted for the very pricey and extensive blood test to identify my food intolerances (which I knew were significant at this point). That list came back with the following:
• wheat
• yeast
• egg whites
• ALL dairy (whimper)
• mushrooms
• shrimp
• oysters (apparently this shows up on all IgG testing...)
• cinnamon, mace, and turmeric
• pineapple and plums
...and a handful of other oddities

These are all things in my life that I'd eaten happily for years (with some sporadic issues with dairy). So why were they suddenly causing me so much distress? As in "cutting my stomach out with a knife" distress. Removing those items from my diet offered, to my relief, relief. But not total relief. I would still get randomly sick, and have unpredictable symptoms. I learned early on that I could forget about eating out. I've had a few intense experiences with eating out that scared me straight. So I cook. And let me tell you—this diet is a full-time job. I am cooking all the time. All. The. Time. Mostly I eat healthy delicious foods that my kids would rather die than eat (carrots, spinach, zucchini, chicken...a LOT of chicken). And while I feel very grateful for the things I can eat, I miss some foods like crazy. So much that I have to detach myself from my previous life of food-loving. I am not going to even go into the amount of emotional restraint I have to exercise over not being able to eat a shrimp quesadilla at Tia Rosas, a burger with my kids at In-N-Out, or my own birthday cake. But then there are normal things, like cereal in the morning. What to do there? I buy gluten-free everything. I obsess over crumbs on the counter, and heaven forbid I find them in my vegan butter. I use unsweetened almond milk in lieu of milk (50% more calcium!), and flax seeds in place of eggs in baking (weird-o). And for the most part it's fine. But it was starting to worry me, too. How long would this last? Forever? What happens when I want to travel...to someplace like Iceland with my husband?? What happens if I get sick in the middle of hiking a glacier?! Or in Target with two kids with a full shopping cart...the horror. I had to get to the bottom of this.

U.S. News and World Report listed the top gastroenterologists in the nation. And a few were right here in my own backyard! I ditched my first GI doc for the pros at Cedars-Sinai Medical Center (one perk of living in L.A.). After 10 minutes, Dr. Stein diagnosed my illness (something my previous doctor couldn't do in 10 visits): Post-infectious IBS (Irritable Bowel Syndrome). "30 year olds don't get this," I thought. Not so. 30 year olds who travel abroad get this. It seems the little trip I took to Greece over a year ago is the culprit. I got horribly ill with a stomach bug while there (gastroenteritis? food poisoning?). Dr. Stein knew immediately that this was my problem. In his words, "You went to Greece and got screwed. Now it's my job to coach you through this." Then he gave me a handful of options and wanted me to choose for myself after I did the research (upper/lower GI scoping, breath testing, antidepressants, antispasmodics, acupuncture, herbalists, hypnotherapy—the big thing in London). I talked it over with Wes and my family, then asked Dr. Stein's medical opinion. Out of everything, he thought I really needed the Lactulose Breath Test for a thing called SIBO. It seems that after a major infection, bacteria can infest the small intestines, set up camp, and throw a party. I went in for the test. I had to drink a sugary liquid and then breathe into a little bag every 15 minutes for 2 hours. Test POSITIVE. OK—a diagnosis! But where to go from here?? (Hint: don't go to Google unless you want to think you have 4 types of cancer...)

Dr. Stein referred me to a book written by his colleague at Cedars named Mark Pimintel (the physician who actually processed the results of my breath test). He is the definitive source on SIBO. I read the book from cover to cover in a day. I learned a lot. Mostly I learned that tons of people with IBS are walking around with SIBO and don't even know it. For years—decades, even! Their quality of life suffers, and this is something that's treatable. It's even curable in some people! And not only that, but SIBO leads to other conditions like rosacea, acne (ahem, yep), even fibromyalgia. For instance, a study by researchers at Cedars-Sinai examined 202 people who met the diagnostic criteria for irritable bowel syndrome and gave them the test for bacterial overgrowth (called the lactulose hydrogen test). Researchers found that 157 of the 202 people (78%) had bacterial overgrowth. When the unwanted intestinal bacteria were eradicated, symptoms of IBS improved in 48% of the subjects, particularly diarrhea and abdominal pain. It's not just people with IBS-like symptoms that have bacterial overgrowth. Bacterial overgrowth can also present with non-digestive symptoms such as fatigue. It's believed to be involved in chronic fatigue syndrome, fibromyalgia, allergies, arthritis, lupus, autoimmune diseases, diabetes, and many other chronic conditions. Even FOOD SENSITIVITIES.

It seems that bacteria like to bore holes in the small intestines, allowing toxins to leak into the body. So that leaky gut idea from doctor #1? Not all wrong, but again—not a diagnosis. A symptom. And that leaky gut leads to autoimmune responses in the body (like food intolerances). So now we had to treat this problem. I was prescribed a heavy course of antibiotics. But before you freak out and say that antibiotics make stomach issues worse, these antibiotics are not absorbed into the bloodstream. Instead, they stay in the small intestines! Bingo. Neomycin + Rifaxin for 10 days. Only problem? My insurance wouldn't cover the $500 Rifaxan (I won't go into the reasons, but it's a problem with this drug across the board). Luckily I have an amazing doctor who just gave me the medicine because I needed the treatment. After the 10 days, I could feel a difference. I am now not as sensitive and feel more normal. I do have some lingering heartburn and abdominal discomfort, but nothing like before. I do believe some (if not all) of the bacteria has been eradicated. But I also found out that it doesn't end there. The diet now has to be adjusted.

Oh the diet. I cannot have any sugar. Take a moment and read that again. Bacteria thrives on sugar. It wants to have a sugar party in my body. And I cannot stomach that idea (pardon the pun). But because I might lose my mind entirely if I cut out ALL carbs and sugar, the limit is no more than 10g of sugar per day. The only sugar that is ok is glucose (but that isn't a naturally occurring sweetener, so I am at a loss there). Fructose is the worst, so no fruit or fruit juice. And I have to wait 3-5 hours between meals. No snacks (collective groan). If I thought I was getting skinny before, I am probably in for another round of weight loss. I can assure you it is not welcomed at this point—I need to gain about 15 pounds. And if you think "You're lucky—I wish I had that problem" I might slug you (yes, people have told me that to my face). The idea is that once the bacteria is gone (fingers crossed), I have to prevent it from coming back. Then I have to restore the "cleansing waves" that go on in the body after eating (hence the 3-5 hour breaks). Plus there's the issue of liver detox. That's another bottle of supplements to clear out all those leaking toxins and give my liver a break. Tons of water. Lots of veggies. Some meat and protein. A few grains. No sugar. I can do this. I think...

The next step is healing my "leaky gut." I think that is the most unfortunate combo of words in the english language. Who wants to say they have a leaky gut (or small intestinal bacterial overgrowth, for that matter)?! So to heal the lining, I am doing things like taking glutamine powder (proven to help some people who suffer from SIBO), and I plan to do a cabbage juice regimen soon. I drink a lot of tea (ginger, mostly). Probiotics are a big NO when you have SIBO. No bacteria is good bacteria in this case, and I do feel worse when I take probiotics. I've been instructed to stay away from them entirely. In the case of SIBO, many things that would normally seem appropriate in other "living healthy" scenarios do not apply (no probiotics, don't eat frequent smaller meals throughout the day, white rice is your friend—in moderation, etc.). This is its own beast. 

* As an update, I had previously posted that I was going to take peppermint oil. It made my heartburn EXTREME. So I nixed that. Apparently, in some people, peppermint oil can actually relax the valve that keeps acid down in your stomach. No go for me. Grapefruitseed extract did absolutely nothing. And I didn't have much luck with L-Glutamine, either.

I try very earnestly to focus on finding joy in the things that I can eat. I am very grateful that I am not intolerant to corn or soy (dairy and wheat are enough to make my head spin). I attempt to walk stoically past the popcorn at the movies (fiber + butter = trouble). And I don't ever want someone to feel guilty when they are eating something yummy in front of me at a restaurant while I sip my water and smile. Most of the time it's fine. Although with the new addition of no sugar or snacks I admit I had a brief moment of hysteria (hunger will do that to you).

I recently read that this is considered a chronic condition. It can be controlled and almost completely eliminated in some people. And I am hoping I am in that percentage. But the truth is that it will most likely be something I live with and treat for a long while—possibly my whole life on some level. My hope is that I can get it to a manageable state so that I can travel and eat out safely. I hope to get my energy up, and rid my body of those toxins that have been building up these past months. I hope that one day I can have another baby (a strict no-no right now). But in the mean time I will keep plugging along. I found this quote a few days ago when I was feeling deflated by all of this:

There will be times when you will be frightened and discouraged. You may feel that you are defeated. The odds of obtaining victory may appear overwhelming. At times you may feel like David trying to fight Goliath. But remember—David did win!
~President Thomas S. Monson, President of the Church of Jesus Christ of Latter-day Saints, "Living the Abundant Life" found here.


A lot has changed in my life. I have almost completely put design and blog work on hold. Any free time is spent creating my meals from scratch (then the kids' meals, since they won't eat what I am eating at their wee stage in life). And a lot of my thoughts are consumed with my health (physical, emotional, mental, spiritual). Stress also triggers symptoms, so I am trying to manage that. I have a plan for exercise that promotes healing and de-stress meditation (if I can find the time, ha). There are a lot of side effects with SIBO. And often when I think I am having a good day, some other malady presents itself. So my serious lack of blogging is due to that. I have debated over just making my blog private and becoming a truly lazy blogger just for my own journal's sake. But I enjoy the community. So I think I will most likely stick around. I also feel strongly that if any of this information can help even one person, than it's worth the extra effort to blog about it. I've provided a list of resources at the end of this post for anyone interested, and please email me at lyndsayjohnson@gmail.com if you have any questions.

And please promise me the next time you eat a piece of cheesecake that you won't bemoan the calories, but just enjoy the treat!! :)

My SIBO Resource List 
Trust me—I've done a LOT of googling, and have distilled it down for you here:
Cedars-Sinai SIBO page
SIBO—what IS it?
Very comprehensive SIBO site from a GI who subscribes to Dr. Pimintel's research
Great overall article on IBS and SIBO
The case against probiotics and SIBO

21 comments:

Carole said...

Wow, I'm glad to hear you are figuring this all out. Life will get easier, I promise. I know what you mean about cook all the time! 30 yrs ago i had to cook all the time for my daughter who has celiac disease. She's all grown up and does all her own cooking but still phones me for a recipe once in a while.

Crazy Lady said...

Sorry lyndsay...that sucks. I believe that quote...it happens to me again and again. Hang in there.... You will kick sibo s butt in just know it!

Kelli Nørgaard said...

Oh Lindsay, I am so sorry to hear all of this, but so happy that you have a DIAGNOSIS and a PLAN! That is half the battle.
What a year you have been through, but thank goodness you found a doctor who sounds like he knows just what he needs to do for/with you!

Please keep us posted!!!!!!!
Sending you lots of love from DK!
Kelli

Christy said...

Oh Lyndsay! Ugh! I'm so sorry you're having to deal with all this. I've been so worried about you - but am so glad to hear you are really taking control and finding the very best doctors and educating yourself. We (patients) really need to be our own number one advocates. Keep us in the loop okay? And if you ever do make your blog private I really want to keep reading! Hang in there!!! xo

Nash said...

Please check out herbdoc.com. I know people who have cured their cancer with his products. It might be worth looking into. It's Dr. Schulze incurables program. I'm so glad you finally have some answers.

christina said...

No sugar?!

That's hard to do even if you WANT to. It's in everything!!

That probably didn't help.

I'm happy you're figuring some of this stuff out. And you have such a great attitude about it. Very inspiring. Wish you the best, Lyndsay!


-c

Kristina said...

I would die. Literally. Well, maybe I could handle the restricted diet if I had been as sick as you were for so long. My sympathies are sincerely with you Lyndsay! I'm so glad you have a diagnosis though because I can't imagine you having continual fits like that forever. I'm so glad you posted this because I had wondered how you were coming along after reading your other sickly posts. Poor family! No kiddies or daddies like a sick mommy!

Brandy said...

Lyndsay, I found your blog when I started looking for haircut ideas! I've enjoyed reading about your adventures. Thank you for sharing so much about your struggle. I have never heard of SIBO before, but I'm pretty sure my mom has it. She has ALL the symptoms. Hang in there with the cure!

Marilyn said...

Lyndsay, Just want you to know that I'm thinking of you. I can NOT even imagine how hard this is for you, but I admire your strength and determination.

Over here at our house, we are just starting down the gluten free path because Ethan is having stomach issues. Staying away from the gluten is helping with his stomach but he's having a really hard time sleeping. He just can't seem to fall asleep at night, and so I am worried that there may be something else in his diet that is bothering his little body.

So although these issues are MINOR compared to what you are dealing with, I feel your pain. I'll be thinking of you daily and including you in my prayers.

Lots of love,
Marilyn

Anonymous said...

I just want to offer you HUGE (((hugs))). I was recently diagnosed with Meneire's and because of that have to stay between 2,000 and 2,500 mg of sodium per day. I can totally relate to missing food. And I thought that was hard. What you are going through is even more challenging! I will be praying for you, that God helps you walk this road. Becca

petra said...

Lyndsay! Thank you for sharing. Really, truly, don't quit on the blog, its good for us! Best of luck to you on your special healing plan. Know that all of us out here reading your blog are cheering you on! It will work! I am proud of you!

Joanne said...

Best wishes with your journey. May you find strength you didn't know you had. You can do it!

Anonymous said...

So glad I found your blog. I also have SIBO. Have you tried the cabbage juice yet? If so, how did it work? I actually like cabbage, but had no idea it might help my intestines.

I especially loved your post about french fries. They are the one guilty pleasure I have left! Oh, and potato chips.

Bargain Hoot said...

Hi Lindsay,
I haven't been here in a while.... so I backtracked to find out how you are feeling. I've never heard of that specific condition. I'm so happy to hear that you finely know what is going on. Once you find out what's happing and you get a game plan...then you can more in the right direction. I've been told that I have leaky gut and the worst part is I have developed so many food allergies. I believe the food allergies cause the RA inflammation. Plus, I get brain fog... I'm wondering I should do some things you are doing.... I have missing pieces to the puzzle toward wellness.

Daniel Ross said...

In January my health went downhill fast. I started to have severe reactions whenever I ate sugar or bread. In Feb. I went to the E.R. after an episode and they told me I had anxiety and prescribed a pill (which I did not take). I was so hungry, but could not eat. I thought I had developed diabetes, but my blood tests were always normal. Thinking I had diabetes, I completely eliminated carbs. To my surprise, my bloating and constipation went away. In May, thinking my sugar tolerance (diabetes) had improved I added some things back in. My health has been in ruins ever since. Going low carb again. I'm 95% sure that I have SIBO. I just have to convince the doc to test me. I am a 29 y.o. male and this has ruined my life. I don't go out with friends, failed a college class, struggle to meet family responsibilities, etc. because of the extreme fatigue and discomfort. I feel your pain. Just be grateful that there is something we can do.

Linda said...

After months (since March, probably longer) of feeling terrible and an array of painful and invasive tests (colonoscopy, endoscopy, HIDA scan, ultrasound, lower GI scan), I was finally diagnosed yesterday with SIBO. I thought the diagnosis was a blessing, and I guess it is. However, after two days of research, I'm more nervous and confused than ever. First of all, my doctor didn't say anything about modifying my diet. The nurse said, "Yep, your positive. Take these antibiotics for ten days, call us when you're done, and we'll schedule you for a follow-up breath test." They didn't even explain what I'd been diagnosed with! From everything I've read, this is a fairly serious condition. They gave me no literature, made no mention of changing my diet, and told me to stay on the probiotics... I'm so confused! I will say this--your story is the closest thing I've read so far that matches mine. Please keep us posted on your progress!

Anonymous said...

Thank you for this website. I have been suffering with stomach ailments for years and it is worsening. ortunately, I have a great integrated medicine gastro. from Johns Hopkins who is also very progressive and refuses to pump me full of pain meds and give me umbrella diagnosis. I have a steady diet of Breath Tests and Rifaxan. I have additional issues (e.g. IBD, Glucose & Dairy intolerance and gastroparesis are some of them)which makes life very difficult. I applaud you for your threatening thoughts towards those who "wish" they had our problem needing to gain weight &/or feel guilty eating normally in front of us. It's so difficult to find good, solid info. but a wholistic Nutritionist helps. Thank you for sharing and know that your site is a "breath" of fresh air!

Anonymous said...

Hi, I came across your blog post doing an Internet search. I noticed this was an older entry and was wondering how your symptoms are now? I have exactly the same symptoms, even with getting those bouts of what feels like the stomach flu every couple of weeks! I am at a loss of what foods I can eat and have lost 25 lbs the past few months and cannot afford to lose anymore! Currently I am unable to talk my GI dr into ordering a breath test to test for SIBO but I strongly think this is causing me all my issues along with possible food intolerances. I live off of saltine crackers daily and it's getting old :(

Undergroundfortea Gothic said...

Okay, this is pretty weird, but name is also Lyndsay Johnson and I found your blog because I am doing a SIBO test next week- I googled SIBO blog and here you are! Another Lyndsay Johnson with angry guts!!!!

DLG said...

Lindsay, I guess there's a lot of us out here with the same issues! Mine came within months of having my gall bladder taken out and caused me to lose 17 lbs. before I finally decided to inform my doctors… I just figured it was taking awhile to recover from my surgery. Doctors denied it had anything to do with the surgery, though I found a couple of examples of others who went through the same thing and an article explaining the logic. I was on the Rifax… for three rounds but still have issues. I regained 10 lbs and don't look like I'm dying anymore but still don't do great. I also have multiple sclerosis so the combination is horribly draining. I did a search on probiotics and SIBO today and am hearing everything from don't take 'em to they're helpful for those w/SIBO. I'm coming to the conclusion there is no one solution for anyone, and that it's going to be a long and expensive journey into finding just the right mix….

Tracy said...

Hi Lindsay, my husband has all of the symptoms of SIBO and has requested the breath test which he had about six years ago with negative results. He became violently ill with food poisoning over three years ago (on our 10th anniversary getaway) and then was diagnosed with C-diff two years ago next month and hasn't been well since, so your mention of post-infectious IBS really got our attention. In addition to the relatively new SIBO symptoms, he is allergic to all dairy, chocolate and soy so he has removed all three from his diet along with gluten and caffeine. While this has helped with the constant IBS symptoms, he is textbook SIBO and can bring on the symptoms with one gluten-free, dairy-free, non-chocolate cookie or granola bar. His doctor, for whatever reason, is reluctant to request another SIBO test and I am really angry about it. I try to do my best cooking for him but even things that don't normally make him sick sometimes do and I feel so bad. I pray daily for a cure or at least a viable treatment. Because of so many other problems, my husband barely eats. He has gone from 160 lbs to 123 lbs at 5'9" tall. I understand your upset when people comment on your weight loss or your need to gain weight. My husband and I are both in your boat. Thank you for this post. We knew a lot of the information that you posted but some of it was new and much of it just helped to know that you are getting relief. As we say down here in the South, "Bless your heart" and in this case, your digestive tract. We are praying that at the very least we can get a clear diagnosis so that treatment can begin and my husband can go back to being himself. I pray you can do the same.