Living with SIBO

Disclaimer: This blog is my own experience. Research and outside sources have been linked when referenced. Please do not use this information to diagnose or treat any disease. Many serious conditions have symptoms similar to SIBO. If you are having symptoms, please consult with a doctor.

Recently, some research has shown that as many as 48% of people with IBS are suffering from SIBO (small intestine bacterial overgrowth). Many people with SIBO see a reduction in IBS symptoms when following a FODMAPs diet.

What is FODMAPS?

FODMAPS is an acronym for different types of carbohydrates that may be consumed by the small intestinal bacteria. This diet starts with elimination of these major carbohydrate groups for a few weeks to see if symptoms resolve. Then groups are added back in one at a time to find the offending groups. This is best done with the help of a trained nutritionist but in my area I found few nutritionists were trained in this diet. Monash University has a great app to help people implement this diet. There are also concerns because many people, like myself, end up living on a severely restricted diet when reintroduction causes a rebound of symptoms. (This study raises some legitimate concerns.)

For me, it was important to note that sometimes the quantity of a food matters. A small amount of berries would be low FODMAP but a whole bowl of berries could be high FODMAP. The app was great in learning about foods that were more likely to work for me.

I still had a high recurrence of IBS and many flares of hives but working with low FODMAP foods really improved my quality of life.

Low histamine foods

There is less research about low histamine diets. And this is more difficult to delve into. There are conflicting lists online about which foods contain high histamines (fermented foods, some meats) and which foods are histamine releasing foods (citrus, strawberries , avocados).

A major discovery for me was that foods that were not fueling the bacteria were increasing the severity of my symptoms. It explained why foods without carbs, such as avocados, were causing me to break out into a rash. With this knowledge, I started an elimination diet and slowly added foods back to see what I could tolerate. Like the FODMAPs foods, foods that have high histamines can sometimes be tolerated in small amounts but wreck havoc in high amounts. This was a learning curve for me. I’m still learning. I really like the Healing Histamine for recipes and ideas.

Food intolerances and allergies

The bacterial overgrowth in SIBO can cause damage to the lining of the intestines. (Bacterial overgrowth produces a number of toxic compounds (peptidoglycans, D-lactate and serum amyloid A), which promote inflammation, may damage the brush border of the enterocytes and increases small intestinal permeability.) This lining is one layer of protection from invaders. Normally only digested molecules can get through this barrier. If the lining is damaged by inflammation common to Crohn’s, celiacs, and IBS. This damage to the barrier could allow larger than normal particles into the blood stream where they meet immune cells that can mount a response.

I often tell people I am allergic to foods because that is something that almost everyone understands. Truly, my food problems aren’t allergies. I don’t test positive for IgE reactions in blood or skin tests. But when certain foods hit my intestines, where that barrier is damaged, my body reacts with an attack. This send me crushing waves of IBS-D, usually several hours after I have eaten the offending food. Sometimes in the middle of the night. While this does make me feel like I am having an anaphylactic reaction, usually it is “only” an intestinal revolt. Even my one “moderate allergy” to mango which seemed to have been the detectable start of my food problems could have been a SIBO reaction. I don’t test positive for a mango allergy.

I mention this because you may have food reactions to foods that aren’t on the histamine nor low FODMAPs lists.

Nutritional deficiencies

Because of the intestinal damage, some nutrients don’t get absorbed efficiently. This can lead to deficits. I have had low serum levels of iron, B1, and D3. I could be low in many other nutrients but these are the things I have been tested for. To help get enough vitamins and minerals, I take high potency multivitamins. If your digestion works, I would try to get your vitamins from nutritious foods. I have found that even when I am eating healthy foods, because of my limited diet and limited absorption, I need a multivitamin to be healthy.

When I stop taking my vitamins, within a few months I run into deficiency problems. Another piece of the puzzle of my health was figuring out that although I was eating enough food, I wasn’t always absorbing everything from my food. Even when my tests come back showing no anemia and no obvious nutritional deficiencies, if I have been feeling rotten and haven’t been taking vitamins, adding them back in improves my condition. I guess I am often missing something important.

Carry on

Today I had energy and I functioning digestive system and I felt great. There were years when I was sure I was dying of cancer that doctors were missing, the same years that my doctors likely thought I was a hypochondriac. I just kept searching and reading looking for something that worked. If you keep seeking, and are willing to question and change your habits, eventually you will find something that gives you some relief. I was losing so much weight I felt like I was disappearing.

Unfortunately, when you feel your worst, you have high motivation to find something that works but sometimes no time or energy to make changes. For me, first, was fixing my vitamin deficiencies. That gave me enough energy to go shopping and try new foods. I had enough concentration to read all the studies and blogs to glean something that might help.

Keep searching. Keep trying something new. If you don’t change anything, you’ll never find your good days.

The good days and the SIBO days

For the most part, most days I don’t have issues with SIBO. Then there are days like yesterday.

My kids are busy. I fed my son and dropped him off at swim practice then picked up my daughter from play practice. I took her to a local pub because they were having a fundraiser for the play and donating 10% to the drama club. We hadn’t been there before which always makes me a bit nervous.

The menu looked good! A lot of choices, reasonable prices. I ordered boardwalk old bay fries (my favorite!) and a chicken sandwich. Ordering chicken at a new place always makes me nervous because “plain” to me sometimes means something different than it does to the cook/chef. Sandwich came and was plain! I didn’t eat the bun.

The fries tasted weird to me. I had one and wondered if they were fried with fish. I didn’t ask; I just stopped eating them.

Picked up my son and headed home and I start to feel annoyed with everything. This is my first sign that I ate something wrong. I went to the bathroom a few times, sign #2. I thought I was starting to feel better. Got the kids in bed but felt restless myself. Couldn’t sleep. Couldn’t even sit still. Sign #3.

We go to bed early! I had been in bed since 9pm but was still not settled at 10:30. Used the bathroom a few more times and then it starts to hit me. Painful gas. Burps that thankfully did not lead to vomiting. More trips to the bathroom. I got hot socks and Gatorade because these sometimes help me feel better but nothing. My body goes into this weird wired panic where I can’t sit down. But I was extremely tired. So I was pacing my living room. My house isn’t large. I was walking in little circles.

Around 11pm I decided to wake up my 11 year old. My throat felt dry; was it swelling? I couldn’t be sure. I started having a hard time keeping my eyes open. I didn’t want to have an allergic reaction while the kids slept and have them find me unconscious in the morning. So I woke her up. I made her sit with my to keep me awake. It occurred to me that this was child abuse. Wake her up in the middle of the night and make her keep me awake. And of course for her, it was scary. My husband is in London. My body was shivering. I was hot and cold.

We walked circles together for an hour. She had tears of worry in her eyes. I kept saying “I will probably be fine! I already feel better.” But she knows I wouldn’t have woken her up if I didn’t need help.

After 10+ trips to the toilet, I don’t think there was anything left in my intestines. And my body started to calm so we went back upstairs. She snuggled into my bed with the dog wondering what the heck we had been doing.

I kept her up a little over an hour in the middle of the night so I took the morning off work and let her sleep a little. Now I’m cooking chicken and rice and beans so I have something safe to eat for lunch. Obviously, my leftover fries are not a good option.

I know it will be a joke when I get to work today that I am always sick. (Not from my boss but some of my coworkers.) They act like I am shirking my responsibilities. One woman’s daughter had SIBO that was cured with one round of antibiotics and she can’t understand why I haven’t just done what her daughter did. I have. Twice. The second time I lost a lot of weight and was sick for several months. My doctor and I decided that wasn’t a good idea again unless life was unbearable. Is it? Is life unbearable?

Mostly, this little incident adds to my worry. I am not one for anxious thoughts but it does raise concern. My husband is eating a lot of fish for his RA diet plan. What if I accidentally ingest some again? And if eating out is so hard, how am I ever going to enjoy our vacation in Hawaii in June? What can I take to eat that I know will be safe but will also be enough to nourish me.

Some days are good days and some days are SIBO days.