Do you ever feel like no one gets it? That you’re all alone out there in SIBO City where no one realizes what you go through and no one has any idea how hard it is just to make it through the day? Let alone, actually find food to eat that doesn’t destroy you!
Hopefully this isn’t the case for you, but some patients report that friends and family members feel “put out” or inconvenienced by the fact that they can’t eat anything, or that they have to go to special restaurants in order to accommodate the SIBO patient’s limited diet. This can make you feel invalidated, judged or like you’re on the defensive.
This article is intended to give you the verbiage you need to explain to your family and friends that:
- You’re not crazy
- You’re not on a diet to lose weight
- You will have significant repercussions if you eat off your diet
You’re all out to eat or over at your family’s house for a gathering. Someone offers you pizza. First of all, this puts you in an awkward situation because you really want the pizza, but you also know it will kill you later. Plus, you don’t want to turn them down by declining because you know how much they just really want to share it with you and have you enjoy it.
You say something along the lines of, “Oh, thank you so much, but I’m on a special diet and I really shouldn’t.”
They respond with, “Oh come on, you look great. A little piece won’t hurt you. Here, take this one!”
You: “Well, it’s not a weight loss diet, it’s for health reasons, and if I eat this it will make me sick.”
Them: “Oh that’s all in your head. Pizza’s good for you! Look, there’s bread, cheese, meat and even vegetables. See. . .all four foods groups in one.”
You sit there bewildered as to what to do, what to say. You really don’t want to get into the whole thing about how hard you have worked over the past 6 months, eating nothing but bird food and spending $2,400 on antibiotics, another $800 on supplements and $360 on testing. You don’t want to bring up the awkward explanation of bacterial overgrowth and it’s contribution to your ever-present battle against diarrhea and/or constipation, bloating, nausea, belching or worse. You, by all means and with everything in you, hope to avoid leaving them with the visual of you looking 9 months pregnant and curled up on the bathroom floor later tonight. So, you, reluctantly, with a fake smile on your face. . .take a bite. Ouch!
Here’s the deal. People are either going to get you, or they won’t. Some will automatically support you, others will harass you until they understand. But YOU are more important than their opinion of you. YOU have to matter to you. Your healing and recovery has to come first, even above all of the times your Italian grandma says, “Mangia, mangia!”
Sometimes, in order to get your point across, you will have to go for the shock factor, try the humorous route, or possibly even use a response that will just take them out so they won’t even want to ask you another question or push it further. If none of that works, just sound really smart and they’ll probably back down.
What should I say?
So here are some come-backs when they ask you the question, “Don’t you ever eat REAL food anymore?”
If I eat that I will. . .(fill in the blank with appropriate response of your choice):
- be doubled over in pain for the next 24 hours
- have shooting diarrhea within 20 minutes
- go from zero to full-term-pregnant by the time I’m done eating that
- deal with aliens in my gut for the next few days
- have a party in my tummy, and not the kind you want to come to
- spend the night curled up in a ball on the bathroom floor
- break out in hives
- start an endless round of belching like a truck driver for the next hour
- be up all night with reflux
- land in the ER. . .again
When that doesn’t work. . .sound smart
If they roll their eyes as if you’re nuts, casually mention something along the lines of, “Yeah, you know, they used to consider this condition I have to be psychosomatic or psychological in origin until they discovered that the root of the problem is in the microbiome and is far more dangerous than once thought. Fortunately they’ve made some pretty helpful advancements in both diagnostics and treatment methods over the past few years, so I’m very grateful for that!”
Be the teacher
People will usually take you seriously once they understand that SIBO is a real thing, and that you are educated on your condition. They may, at this point, begin to ask you questions. Here’s a fairly easy way to simplify SIBO without getting into too many of the gory details.
“SIBO stands for Small Intestinal Bacterial Overgrowth. It happens when bacteria gets into the intestines in places where it shouldn’t be. This bacteria steals all the nutrients from the food I eat, so I feel tired and worn out. It also releases toxins into my body that make me feel sick. My abdomen swells as a result and it’s wildly uncomfortable.”
Be your own cheerleader
Then follow it up with, “But I am overcoming it day by day. Through much trial and error, I have found a system that seems to be helping my body heal. I just have to be really diligent because one minor slip seems to set me back for days. And I’m really counting on a full recovery!”
Hopefully that will be what they needed to hear in order get a glimpse of what you go through, to be back on your team, and support you to the end!
Additional information to pass along to loved ones:
What is SIBO?
What Causes SIBO?
Stages of SIBO
The EndSIBO Diet
Eating to Overcome SIBO
Why Diet is SO Important in Overcoming SIBO
Observations of the SIBO Patient’s Journey Back to Health
CecilyOctober 13, 2015 at 3:29 am (7 years ago)
i am fighting this battle one day at a time. great info and encouragement!
Dr Lisa GiusianaOctober 13, 2015 at 3:35 am (7 years ago)
Yes! And one day soon you will look back and see how far you have come 🙂
Clea MahonApril 17, 2016 at 10:48 pm (7 years ago)
hi dr Lisa, can I ask how long it takes for energy levels to return to normal once SIBO has been eradicated and are we expected to be on a modified diet for the rest of our lives once SIBO is gone?
Dr Lisa GiusianaApril 18, 2016 at 3:20 pm (7 years ago)
Everyone is going to be different. Often times, the energy drop has to do with the reduced intake of grains. Grains feed certain bacteria in the gut that produce short chain fatty acids. Without grains being in the diet, the bacteria won’t be able to produce the SCFAs. I will often supplement with them during this time which tends to improve energy.
The goal is to broaden the diet as much as possible within tolerance. This will diversify the microbiome in general, which will strengthen the system as a whole. But it doesn’t happen over night. And it shouldn’t happen until you can get a certain level of bloating under control.
It’s also not a good idea to look at SIBO as the main issue that needs to be solved. When approaching the GI dysfunction this way, far too much is missed. So it’s not about just killing the SIBO and you’re done. It’s about looking at all levels and layers of dysfunction from the mouth, down to the stomach, into the small intestine, through the ileocecal valve, through the colon and out. Addressing each point of dysfunction along the way will improve overall digestion, and as we know, it’s all connected. So the way I approach it is to identify and support these areas of dysfunction while simultaneously addressing the bacterial overgrowth in the small intestine. Then switch gears to rebuilding the gut and adding back foods that actually support and feed the gut. But there isn’t a set time-frame in which this happens. For some, it is 6 weeks, for others it is 6 months.
The endocrine system tends to suffer during this process, due to the constant stress placed upon the body. This may need to be sorted, but can 1) become a source of low energy when dysregulated, and 2) be a source of regained energy once it is supported and restored.
Another area to consider is the immune dysregulation. When people have intestinal permeability and have lost a lot of oral tolerance (as is often seen in the SIBO community), the immune system is constantly bombarded and begins reacting to multiple foods. This can require an even more extensive approach and take a little longer. But it is very possible to overcome. It just depends on what is going on with the individual. There is no cookie-cutter approach or length of healing.
To wrap up, the goal is always to restore energy, broaden the food base, and approach and support the body as a whole rather than compartmentalizing SIBO or any other condition. That’s when true healing takes place.
Clea MahonApril 19, 2016 at 1:10 am (7 years ago)
Thank you for the very thorough response! my energy/digestive issues have been with me for a couple of years, however I’ve only been diagnosed with mild SIBO the past month, my naturopath seems to think that SIBO is the cause -I’m not 100% convinced that is all that is going on? I am in Australia but would love to work with you…would this be possible?
Dr Lisa GiusianaApril 19, 2016 at 1:34 am (7 years ago)
Hopefully your SIBO isn’t too advanced. It’s usually secondary to something else and/or in conjunction with something else so you’ve made an accurate observation there. I have done Skype work with people in Australia, it’s usually not an issue – we just have to make sure we factor in the time difference. I can do coaching, but cannot run labs. It sounds like you have someone locally who can help if that is ever an issue.
Daniel BuckFebruary 21, 2017 at 6:22 am (6 years ago)
This is the Best information on SIBO I have found
Thank u Very Much I’ve been treating mine For about 4 months or more Its been ruff and I was
Doing a little Better Then here recently its been acting up I would like to get some Guidance on what to be taking daily How do we make an appointment online for help.Thanks Lisa
Dr Lisa GiusianaApril 25, 2017 at 2:53 am (6 years ago)
Daniel, you’re so thoughtful. Sorry I am only just now seeing this. I usually get an email when someone comments. So, it can certainly take a while. I usually offer addition adjunct support such as digestive enzymes, HCl, possibly a prokinetic and butyric acid in some cases – this must be enteric coated or in a special pH specific release capsule. It’s so hard to guide someone without a full health history, so much goes into creating each individual protocol. I hope that by now you are doing much better. If you need a consult, you are welcome to book here: https://endsibo.com/appointments/
Wishing you well!