I feel like I have experienced a miracle for a second time. And I need to tell the world. As you can read here, a blenderized diet was life changing for Bradley. That was our first miracle. He has thrived on a blenderized diet for 2 1/2 years now, and the majority of the problems he was experiencing on formula disappeared as soon as the formula disappeared. But, one problem had remained in spite of changing from enteral formula to a blenderized diet: excessive air in his tummy. And it had been gradually getting worse for quite some time.
I have asked so many doctors what to do. Nothing that was tried helped. Bradley has a nissen fundoplication, which complicates this problem all the more because he cannot burp. Air was building up again and again and again and again every day. It had increased to the point that I was pulling 40-50 ounces of air per day out of his tummy via his G-tube and that was on a good day. Some days, it was substantially more.
This air would cause terrible nausea for Bradley. Thankfully, after pulling the air out, he would feel better right away. A couple doctors told me this really wasn’t a problem, then, since pulling the air out relieved the nausea. Just vent as needed, they said. No problem. Um, no. No one wants their child to deal with this 10 times every day and experience this disruption in life. And it was most definitely disruptive to life. Sometimes, for all their medical knowledge, doctors do not grasp the practical application of their advice and how problematic it can sometimes be in daily life. Bradley has to be laying down to successfully get this air out of his tummy. I remember sitting on a very crowded bus last summer, and the air had built up. Bradley was gagging, retching, and crying. There was no where to lay him down. So, we just had to wait. Eventually, he was vomiting as his body tried to get the air out. I have had so many times I had to pull over to the side of the road in the snow or rain, get Bradley out of the car, lay him down in the front passenger seat as I’m getting soaked in the rain, and vent his tummy. I could tell many stories like this where it was not as simple as “Just vent as needed. No big deal.”
I continued searching for answers. I searched. And searched. And searched. I tried so many things. Nothing helped. And finally, some fellow BD moms helped me find the answer I had been searching for. They talked to me about symptoms of a bacterial overgrowth in the bowels. It sounded like there was a strong chance this could be the problem. One major risk factor for an overgrowth is a history of bowel surgeries, and Bradley has had two major bowel surgeries.
What are the symptoms of a bacterial overgrowth? Excessive gas, diarrhea or constipation (or bouncing back and forth between both), nausea, vomiting, or bloating…just feeling yucky. Bradley has mild constipation issues that are managed with a daily serving of prunes. But, I just knew this excessive air could not be accepted as our “normal.”
Bacteria in our guts produce gas when they eat. For most people, this isn’t a problem because the body can manage the normal level of gas produced by a normal level of bacteria. But, if a person has too much bacteria in his/her gut, this means there is more bacteria producing gas, which means there will be a lot more gas. Worse, if this bacteria makes its way up into the small intestine, as bacterial overgrowths do, bacteria is eating and producing gas in an area of the body that it isn’t supposed to. And guess where this gas goes. It pushes right up into the tummy.
And so, what are we to do? We stop giving so much food to the bacteria. In other words, we reduce foods known to feed the bacteria really, really well. We avoid foods that easily ferment in the bowel. This approach is quite the opposite of what most of us should be doing. Feeding our gut microbiome is extremely important. But, for those with a bacterial overgrowth, doing so can be a disaster.
I started with giving Bradley a broad spectrum digestive enzyme with every single meal to see what happened. This breaks down the food very quickly, leaving less for the bacteria to feast upon. The results were both immediate and extreme. The very first day, Bradley went from needing 40-50 ounces or more of air pulled from his tummy to needing only 4 ounces pulled. After 4 days of this, he was not needing any air pulled from his tummy at all. It stopped completely. This went very well for several weeks, but the air began building up again little by little. So, not wanting to wait until things were out of control, I decided to try plan B: a low FODMAPS diet.
Some of my fellow BD moms mentioned this diet to me. I began to do some reading about it. What stood out to me was the fact that nearly every food I’d already identified as a food that makes this excessive gas far, far worse (and had to stop feeding them to Bradley as a result) were on the high FODMAPS list. There were all these random foods that resulted in extremely excessive gas, and I could not figure out what could possibly be connecting them all. When I began reading about high and low FODMAPS foods, I discovered their connection.
Bradley’s oral intake had increased over the summer, but as it did, the air in his tummy increased substantially as well. I thought perhaps he was swallowing air as he ate. As it turned out, because I changed Bradley’s diet quite a bit when he began eating pureed food orally, I had inadvertently increased multiple foods that were on the high FODMAPS list, such as cashews. It occurred to me that maybe he wasn’t swallowing air at all. The final pieces of Bradley’s GI puzzle were coming together.
FODMAPS is an acronym for different components in various foods that easily ferment in the bowel and feed gut bacteria (Fermentable, Oligosaccharides, Disaccarides, Monosaccharides, And Polyols). Many foods containing high amounts of FODMAPS are quite healthful for most people. But, they are not for those with a bacteria overgrowth. By reducing the FODMAPS in the diet, the bacteria are fed less. For Bradley, this would translate into less excessive gas if this were indeed the problem. And that is exactly what a low FODMAPS diet did. His very first day on a low FODMAPS diet, he did not require any venting at all, and I was able to stop the digestive enzymes. He has been doing great and venting is no longer a part of our lives. What a difference! Life changing!!
So, how do you go about discovering if a low FODMAPS diet will help your child’s tummy troubles? The only way to determine this is to try a low FODMAPS diet. If a low FODMAPS diet will help, it will help rather quickly. Thus, if you try and don’t see any improvements within a few days, this likely means that the problem is not one that will be helped by a low FODMAPS diet. Because feeding a low FODMAPS diet reduces how much gut bacteria are fed, and because most people need to feed their gut bacteria with these foods, it should only be used by those who experience a reduction in GI symptoms with this diet. If you try this diet and there is no reduction of symptoms within 4 days, you should stop the low FODMAPS diet and pursue answers elsewhere. In some cases when there is a bacteria overgrowth, an antibiotic may be needed to get the bacteria population in the gut better managed. Discuss this option with your child’s medical team if you believe your child may have a bacteria overgrowth, and diet is not managing it completely.
If your child will benefit from a low FODMAPS diet, it is important to go all the way onto a low FODMAPS diet initially. Once GI stability has been gained for a period of time, you can begin adding in one food at a time to test for tolerance. Your child may tolerate specific high or medium FODMAPS foods. The only way to find out is to first remove them all and then begin adding in one food at a time after the child is feeling better.
Doing this the opposite way, such as in an elimination diet, will not work in this particular situation. If your child is being fed 6 foods, for example, that are causing the symptoms, removing one at a time will not result in a visible reduction in symptoms because the other 5 foods are still producing symptoms. This is why I could not identify every food intolerance in Bradley’s food. I had tried an elimination diet by removing one ingredient at a time from his diet. While I had identified some foods that made his symptoms dramatically worse, I could not find them all. An elimination diet works great if there are only a very small number of foods that are causing symptoms. But, if lots of foods are causing symptoms, an elimination diet will lead to an eternity of removing one food at a time and seeing little to no improvement even if the food is an offender because you’re still feeding so many other offending foods. So, if you are going to try a low FODMAPS diet, you have to go all the way. At least at first.
Once you do, when GI stability has been reached, leave well enough alone for a while. Give it a few weeks. Maybe even more. Then, start to reintroduce one food at a time and see if GI symptoms worsen again. If they do not, that food is a safe food.
The good news is that you can begin to see patterns that will help you identify which foods are most likely safe and which foods are not. For example, if you notice that foods high in polyols are not causing symptoms, this is a good indicator that other foods high in polyols that you haven’t trialed yet will be safe.
Some people experience dramatic improvement after several weeks on a low FODMAPS diet and can return to a more normal diet. This is because the low FODMAPS starved off the excessive bacteria, so eating the foods that feed them well no longer causes symptoms. If you are one of these lucky people, you can simply return to a low FODMAPS diet down the road if symptoms flare up again.
Yes, it is a tedious process. But the end result can be a child alleviated of GI discomfort. Bradley is still in the waiting phase. I plan on reintroducing foods after the new year to find his safe foods.
A team at Monash University has tested a large number of foods for FODMAPS. They have an app that you can use to search for foods and see whether they are high, medium, or low in FODMAPS. It will also tell you which of the FODMAPS the food is high in. You can also find a lot of helpful information on their website.
I began the process by purchasing their app and reviewing every single food they tested. I had 3 lists: low, medium, and high FODMAPS. As I reviewed the list, I looked at every food on it that we use in our household and added that food to the corresponding list. For now, I am only selecting foods on the low FODMAPS list. After the new year, I’ll be trying foods from the other 2 lists, one at a time, to see how things go.
In the meantime, I am basking in the glory of venting-free days. I am loving seeing Bradley completely comfortable from morning until night. He used to wake up every morning with so much air in his tummy. He’d wake up every morning and immediately gag and retch until I pulled the air out. Now, he wakes up every day and smiles instead. And, since his tummy is feeling so much better, Bradley is now taking all of his food orally most days. We are far from the day that his feeding tube is removed, but it finally feels like a reachable goal. I have searched for an answer to his excessive gas for a full year. I began to wonder at times if I would ever figure it out.
And so, most importantly, even if a low FODMAPS diet isn’t the answer for your child, keeping trying, mama. Keep searching. Keep asking. The solution may be just around the corner.