It is likely safe to assume that the main goal for those diagnosed with celiac disease is to heal their gut. They want to feel healthy again. They want to feel like themselves again. Most have been sick and suffering for years and don’t want to wait any longer to feel better. They want to heal fast.
I wanted to heal fast too. I wanted relief from all my ailments. At first, I tried to heal myself on my own by doing what the doctor ordered – which was following a strict “Gluten-Free” diet. Easy peasy lemon squeezy – right?! No. Completely Wrong.
Some symptoms improved, but overall, I still did not feel dramatically better like those other recovering celiacs of whom I read resentfully over and over about. I was still dog tired, I had reflux, my joints ached, my skin was a mess, my stomach would still bloat, yeast infections kept occurring, blah, blah, blah. The list goes on and on.
A little over a year after being diagnosed, I found a functional medicine doctor. You know, the superhero doctors that connect all the dots with what is wrong with you. Anyway, I discovered a lot more about what was going on with my body – from a long list of food sensitivities, yeast overgrowth, and hypothyroidism.
That simple recipe of following a strict “Gluten-Free” diet was certainly not going to be enough to heal me.
After a year with my functional medicine doctor, I completed follow up testing. I was super excited to get my tests back. I expected nothing but great results. I followed my diet perfectly. I took my supplements religiously. I did everything the doctor recommended.
Wrong AGAIN! WTF?!
My food sensitivities increased. Even to foods I wasn’t even eating. My level of gut diversity had decreased. I was not absorbing fats and proteins well. I had inflammation markers in my gut.
I was completely and utterly deflated. I wanted to scream SCREW THIS SHIT – I QUIT!
For 2 full years, I followed not only a strict gluten-free diet, but I also eliminated all food sensitive foods, followed a 4-day rotation diet, and took over 22 different supplements totaling 40 pills per day. I drank bone broth. I took collagen. I ate fermented food. I drank Kombucha.
To have things get worse, after all the hard work and money spent, left me feeling completely crushed.
But quitting was not an option that I could honestly entertain. The only person on that end who was going to get hurt was me. This was not a diet I was following for the cosmetic purposes of losing a few pounds. I had to follow the diet or my symptoms and health would worsen. My risk of developing more health problem would only increase.
I guess I should not have been completely surprised. Many of my symptoms had not gone away. Some had been greatly reduced since changing my diet, but overall, many of my symptoms remain in full force.
So, What Now?
What Could Be Holding Me Back?
Almost always, when researching how to heal your gut, the first step to healing your gut involves removing all sources of inflammation and/ or infection. Based on my testing, something wasn’t adding up. Some form of inflammation or infection had not been identified. If it had, I should have gotten better.
So straight to the internet I went, typing in “What causes celiac disease to worsen?”, “Why am I not getting better from celiac disease?”, “What causes someone with celiac disease not to heal?”. It was then that I came across Small Intestinal Bowel Overgrowth, a.k.a. SIBO. It made sense. I got tested – the results came back positive.
SIBO was stopping my recovery from Celiac Disease.
What is SIBO?
According to WebMD, Small Intestinal Bowel Overgrowth (SIBO) is defined as “a condition in which abnormally large numbers of bacteria are present in the small intestine, while the types of bacteria found in the small intestine are more like the bacteria found in the colon”. This is a big problem because the small intestine is where the body’s nutrients are absorbed. Meaning, unless you get SIBO under control, there is no shot of you healing your gut or your body.
- Abdominal Bloating
- Diarrhea (more common)
- Abdominal Pain or cramping
- Vitamin Deficiencies
- Weight Loss
- Body Aches
- Gas/ Excess Wind
- Food Intolerances (gluten, casein, lactose, fructose, and histamine intolerances)
- Fat Malabsorption
- Rosacea and other skin rashes
- Autoimmune diseases
- Leaky Gut
How Did My Doctor and I Miss SIBO?
You would think with a list of symptoms this long that I would have recognized that something was wrong and that I would have been tested for SIBO sooner. But when you have celiac disease, it is not like you started with a normal gut. Remember, the average diagnosis for a person with celiac disease is 6-10 years.
3 Reasons Why I (and maybe you too) Missed SIBO:
1) You Are Told It Will Take a Long Time to Heal
My doctor told me that it would take anywhere from 2 to 5 years to heal the damage of celiac disease. So, initially, I didn’t even bother to look for any other cause. I just assumed that celiac disease caused a lot of damage and that I would need a significant amount of time to heal.
2) Tunnel Vision on Celiac Disease
Sometimes you are so hyper focused on resolving celiac disease; you lose sight of other possibilities. The symptoms for SIBO closely resemble the symptoms for gluten exposure. It’s difficult to know the difference.
Every symptom I had, I blamed celiac disease. My body must not be able to handle this food yet. Maybe I’ve been “glutened”. I am not absorbing my vitamins because of celiac disease. Never did I think that it could have been something else.
3) The Symptoms of SIBO are Also Symptoms of Celiac Disease
The symptoms I had before being diagnosed with celiac disease were only slightly reduced when I started a “Gluten-Free” diet. So to think that any of my symptoms could have been related to another condition didn’t seem likely. To me, it was all related to celiac disease.
Plus, every symptom of SIBO is also a symptom of celiac disease. It’s just impossible to decipher between the two conditions.
So You Find Out You Have SIBO – Now What?
There are a couple ways to treat SIBO, you can take either a round of antibiotics (typically 2 weeks) or follow an herbal protocol (6-8 weeks). And, yes, I am not kidding about the antibiotics. While we are instructed to avoid them at all costs, Rifaximin (Xifaxan) and Neomycin are the antibiotics of choice. They are “completely non-absorbable which means they stay in the intestines, having a local action and don’t cause systemic side effects, such as urinary tract infections.” Siboinfo.com
The herbal protocol, or herbal antimicrobials, contains specifically chosen herbs such as wormwood, oil of oregano, thyme, berberine extracts, etc. to eradicate the bacteria most commonly involved in SIBO. According to Chris Kresser, author of The Paleo Cure and Unconventional Medicine,
“Herbal antimicrobials have been shown to be at least as effective as rifaximin, and about 57% of those who fail on rifaximin will succeed on herbal antimicrobials.” ChrisKresser.com
I personally did both treatments. I started with the antibiotics because I had strong food sensitivities to many of the ingredients used in the herbal protocol. However, after two weeks of completing the Rifaximin and Neomycin, I did not feel any different and my stomach was still very noisy (lots of gurgling). So my doctor and I decided to follow through with the herbal protocol.
I responded very well to the herbal protocol. For the first time, I could eat food and my stomach would NOT bloat. Talk about amazing. I honestly could not remember a time when eating did not cause me to bloat. Plus, I felt more satiated after eating. Like everything my body needed was being quenched. Which brings me to food.
What food or diet should you be following during treatment? Again, this is another blurry area in SIBO treatment and seems to be very controversial. More research is needed, but it mainly comes down to FODMAPs.
FODMAP stands for Fermentable Oligosaccharides Disaccharides Monosaccharides and Polyols. They are defined by Wikipedia, as “short chain carbohydrates that are poorly absorbed in the small intestines”. Foods that are high in FODMAPs can ferment in the gut and feed a bacterial overgrowth.
Some believe that you should follow a Low FODMAP diet, while others believe you should eat as many FODMAPs as possible, or tolerated. The idea behind following a Low FODMAP diet is that you avoid feeding the bacteria overgrowth that is present. While others believe that you should feed the bacteria as much as possible with high FODMAP foods (during treatment) so that the bacteria does not hide and become more difficult to eradicate.
You will have to consult with your doctor on this one.
In my situation, my doctor recommended I follow a Low FODMAP diet by Dr. Siebecker called the SIBO Specific Diet. In addition to this diet I had to also eliminate my food sensitive foods, no fruit, and no alcohol. This was by far the most restrictive diet I had ever been on. I’m going to be honest – I cried every day for the first 6 weeks and then after that every other day.
I had no choice. I was desperate to get better.
Much of your success in ridding SIBO depends on if you have truly identified the underlying cause. For instance, if celiac disease is not the true underlying cause for your case of SIBO then you will likely have a recurrence. But, let’s stay positive and assume that celiac disease is the main reason SIBO has occurred. If you are able to remove SIBO, your health will likely improve and get back on track.
Today I Got Great News – FINALLY!!!!
I started treatment for SIBO at the end of January. I originally had over 85 different food sensitivities. After completing my treatment for SIBO, I now have only 35 different food sensitivities. Finally, my gut is starting to heal!!!
Check it out! Here are my test results over the past two years. The first chart is where I started in April of 2016, then March of 2017, and the most recent, May of 2018, after going through treatment for SIBO. My most recent results are better than when I started in April of 2016.
April 2016 – First Food Sensitivity Test Results
March 2017 – Food Sensitivities Increased – Despite Strict Gluten-Free Diet
May 2018 – After Completing SIBO Treatment
My most recent test results show that I have less food sensitivities now (total of 22 food sensitivities) than I did two years ago in April of 2016 (total of 28 food sensitivities). SIBO was stopping my recovery from celiac disease and worsening the health of my gut.
If your symptoms and health are not improving despite following a strict “Gluten-Free” diet, make sure to get tested for SIBO. It may be what’s stopping you from getting your health and life back.