There is no doubt in my mind that SIBO is at the root of my current health crisis. This blog post will break down the different conditions that I am suffering from to try to make sense of it for both myself and others. I am hoping that anyone who has had similar experiences can comment below so that we can learn from each other!
Conditions for which I have been officially diagnosed (in chronological order):
1) IBS (which is what I believe doctors diagnose you with when they really don’t know what is causing you to have digestive discomfort)
2) SIBO- constipation, bloating, abdominal pain, flatulence- this is what is causing everything else
3) Leaky gut- manifests as seasonal allergies & multiple food intolerances
4) Adrenal fatigue- tired all the time, hormonal imbalance, amenorrhea, low thyroid (free T3) on blood test, inability to handle minor stressors
5) Excessive stress on the kidneys- Lab work results May 2014: Urea Nitrogen (BUN) = 32 H (normal is 7-25mg/dL); BUN/Creatinine Ratio = 38 H (normal is 6-22); Albumin = 5.4 H (normal is 3.6-5.1g/dL). I had these levels retested July 2014 (two months after original lab work) and although they had gone down and were no longer in the “out of range” column, they were still on the high end of the “normal” spectrum. My nutritionist recommended supplementing with a kidney support.
Additional conditions I am looking into based on my current symptoms:
1) Chronic fatigue syndrome– I literally feel exhausted ALL THE TIME even though I get 8-10 hours of sleep every night. There have even been days where I take a one or two hour nap and can still go to sleep at 9 PM after getting up at 6 or 7 AM. This has been going on for about two months. I also have a really difficult time concentrating, especially in the afternoons and evenings. At times, it doesn’t even feel safe for me to be driving. (These symptoms could also very likely be caused by my low free T3 levels because when I started taking a supplement called Metabollic Complex which contains thyroid tissue, my energy levels improved by 75%)
Read this article for an explanation of why chronic fatigue syndrome is related to SIBO.
Please share your experiences below!
I am reading a book, “the Blood Code” by Richard Mauer ND (went to school here in Portland) and he commented that a high BUN may be due to dehydration, and protein rich diets will have a higher reading too. I get a massage every other week, and this has kept me “pain free”, and boy do my shoulders and neck notice when I miss. I actually see a couple different practioners, sometimes needing a more therapeutic massage.
Hi Candy, I was drinking about 50 ounces of water per day when I had that lab work done, but have since increased to 70 ounces. It will be interesting to see how my second round of lab work compares since increasing my water intake.
My daughter has been just diagnosed with IBS after four years of severe abdominal pain. Test results are still coming in so I don’t have an exact cause. She has inherited it from me although I mostly grew out of it. Diet change has been the biggest relief for her. I have also changed my diet with her. For the first time in my life I don’t hurt or ache or feel drained.
Hi Heather, what dietary changes did you and your daughter make? I also find relief from my digestive symptoms through altered diet.
No gluten, beef, pork, dairy, limited sugars and veggies. Blueberries are the only fruit she eats right now. I don’t give her broccoli and I steam all of her veggies. I buy boars head lunch meat which is hormone and nitrate free. She takes probiotics and a prebiotic blend. I let her cheat a little with a tiny bit of sour cream and white rice last night and her allergies have exploded. We’re waiting on the results of a hydrogen lactose test. She eight this is really tough.
Heather, I completely sympathize with your frustration and I am so sorry that your daughter has to go through this at such a young age. I tested extremely positive for hydrogen gas using the lactose test (peak level of 72ppm when the threshold for having SIBO is somehwere around 15 ppm). According to Dr. Siebecker at NCNM’s SIBO center, about 1/3 of people with SIBO experience fructose malabsorption (I am one of those people). It sounds like your daughter cannot handle fruit either? Similarly to your daughter’s diet, I do not eat raw vegetables because it is my understanding that they are hard to digest. I follow a low FODMAP diet, so I do not eat broccoli, cauliflower, brussel sprouts, etc. There are a whole ton of other veggies I do not eat as well. Did a doctor recommend the probiotics with prebiotic? It is my understanding that prebiotics feed SIBO and that probiotics can make it worse for some people (if you are not already working with a naturopath, I would highly recommend it). When I stopped taking probiotics (even though I had convinced myself they were helping), I saw improvement in my symptoms. It was quite frustrating because I had been taking the very expensive Klaire Labs Lactoprime (SCD compliant) probiotics for several months and another type for a year before that. Please let me know if you have any questions!
You’ve just confirmed everything I thought about fructose malabsorption and the probiotics. The problem I have with my daughter is she has and always has had constipation. That doesn’t mean she would still have problems if I took her off of them. Constipation may not be a problem with the food restrictions. What do you do?
Also another thing we’ve been doing is biofeedback. It isn’t the whole answer but has brought some insight. You know what’s funny is the section that pulls up bacteria and parasites showed bifidobateria. I looked for reasons why this would be a problem. SIBO is what I found.
I have been fighting for the last year and a half for doctors to take action. We’ve been to three GI specialist. The last doctor finally started ordering test and didn’t try to give her acid reflux medicine.
I’ve been between the medical world and holistic world. The holistic side has been extremely willing but I feel they lack the knowledge to really help her. The medical world has the knowledge but most are idiots! Lol
It feels so good to talk to someone who understands all this lingo. I’m all by myself with this. My husband and family are supportive. Although they (my parents) ask when my daughter will be able to eat normal. I don’t tell them but I’m afraid she will never have “normal” food.
Constipation is my main symptom as well. Here is what I do for that: 1) Drink LOTS of water. I drink 72 ounces per day. 2) I take 2 teaspoons Natural Calm Magnesium at bedtime. 3) I take 2 Neem Plus Herbal Antibiotic with each meal (until I receive my Resolor prescription in the mail which will induce waves of the small intestine- hopefully only have to take it for three months). 4) I follow a very strict diet (since she is eight years old though, that totally scares me). The strict diet controls my digestive symptoms but may be related to why I now feel exhausted all the time (“low-carb flu”). 5) Allow myself time to relax in the morning to facilitate a BM. 6) Space out my meals 4 hours and fast 12 hours overnight (because the Migrating Motor Complex can only do its thing when you are not digesting). Following this strategy, I have had a BM almost every day for the past two months (when my symptoms were really bad, I would only have one every 3-5 days).
It can be super frustrating to try to find a doctor who knows about SIBO because it is such a new diagnosis, but I would highly recommend an appointment with a naturopath at NCNM’s SIBO Center for Digestive Health. I see Dr. Keller. If you are not in the Portland area, she does phone or skype appointments.
I would also recommend two books for you to read: A New IBS Solution by Dr. Mark Pimentel (I like everything except his diet plan) & Digestive Health with Real Food by Aglaee Jacobs
I completely understand how hopeless living with this illness can be, but doctors have told me that they have seen patients who can return to eating more foods again. Take a look at Alisa’s story. I do not think “normal” is ever going to be an option, but in reality, I don’t believe anyone should be eating the “normal” American diet- it is killing us! Luckily, I think the American diet is going to slowly adapt to this way of eating as more and more people realize that their symptoms are caused by SIBO and make the connection about how their diet contributes to health. So, in short, it will get easier & there is hope!!
Thank you so much! I’m still waiting for the hydrogen test results and until then I’ll be doing my homework. I’m so thankful for all the information you’ve given. I’ll be in touch if you would like to know what progresses.
Yes, please keep me informed! Crossing my fingers that you can figure this out for your daughter 🙂