There has been lots of news recently about people not really having gluten sensitivity. Maybe its FODMAPS that are the issue and people with non celiac gluten sensitivity's problems are "all in their head." For many struggling with this condition, this type of press can cause major frustrations for the sufferer. I frequently have people posting these studies that "debunk the mystery" on my facebook wall or send me a link to the "latest scientific study"
FODMAPS are, "short-chain carbohydrates, named FODMAPs (Fermentable Oligo-saccharides, Di-saccharides, Mono-saccharides And Polyols) these short-chain carbohydrates are poorly absorbed in the small intestine and rapidly fermented by bacteria in the gut. The production of gas by these bacteria is a major contributor to symptoms." For the sake of time, these include a lot of high sugar fruits, vegetables like onion and garlic, and legumes. Kid X was doing well with his gluten free lifestyle until after a terrible sinus infection. All of a sudden after being treated with very strong antibiotics, Kid X began to show GI symptoms again. His abdomen would get tight and swollen, vomiting, diarrhea and malaise set in. It seemed any fruit, vegetable or bean would cause this reaction. Immediately I cut out beans, this was one of his favorite vegetables. I figured, this might be contributing to his swollen tummy. But even with several once tolerable fruits like bananas and apples, the same reaction would occur. After doing more research I found that suffers with IBS and other GI issues sometimes had improvement by getting rid of foods that were high in FODMAPS. Couldn't hurt right? So by trial and error, I eliminated foods that caused Kid X to have increased GI symptoms. I kept a log of what fruits and veggies were tolerated and which were to be avoided. There was a pretty clear pattern of foods high in FODMAPS causing his symptoms. Foods with low FODMAPS seemed to be tolerated very well.Could his issue just be leaky gut or a depleted good bacteria in his gut from antibiotic therapy? Maybe, but as time as gone on, even trying these foods again has not been successful. With all the confusing research and studies out there, who knows what is right and what is wrong. As time progresses we find out things that are bad for us were really good all along, and things that we considered good for us are once again labeled bad. Speaking to others with similar conditions, are a good start. I've learned some other signs to look out for just by listening to what other celiac and gluten sensitive people are able to eat or not eat. I cook gluten free and FODMAP free for the most part for the entire family. I do make exceptions with some of the FODMAPS for the rest of us that don't seem to be bothered by it. I want my garlic and onions sometimes! Kid X does very well with the fruits and veggies he can eat and doesn't seem to complain. He loves strawberries, blueberries, raspberries. Even limes and lemons! I can easily occupy him at restaurants with a lime or a lemon. The other day he ate 5 slices of lemon at his grandmother's house! Being 3 years old, he is finding his voice, able to tell teachers and friends that he can't eat that banana, apple or enjoy those baked beans. Having substitutes while everyone else indulges doesn't even phase him. His children's day out has been wonderfully accommodating. When snacks or food related projects come up, we bring a substitute. During the last week of school this year, the class was doing a project with sugar cookies. We brought sugar cookie mix for the entire class to use instead of just bringing Kid X a gf version. He got to mix up his "special" cookies with the class! For my family, we will continue to cook gluten free, FODMAP free just as we have been doing since finding out about Kid X's diagnosis. I will continue to read all the latest studies and newest trends, but continue to do what works for my little man. So friends, continue to post studies, even post all those things that you think will debunk this so called fad. I do not wish for you ever to have to go through what my child has gone through. Food allergies and sensitivities are real and the best thing to do is be compassionate for those families that are affected whether you thing it is real or not. I am thankful that this is diet controlled for my little one! Just as I have to abstain from seafood so I won't have an anaphylactic reaction, those that suffer with gluten issues have to abstain as well. Though the immediate reaction might not be as "severe" as other food allergies, they are just as life threatening. Plus there are a lot more things in life to be concerned with and thankful for than trying to prove someones diet as wrong. Whatever future studies will or won't prove, I don't think eating real fresh foods, cooking more and eating less processed, sugary, carbohydrate rich foods ever hurt anyone.
Saturday, May 24, 2014
Sunday, May 4, 2014
Kid X Diagnosis
I talked last week with someone from a project I hope to be soon involved with. As we were talking, I told my story of how my little man was diagnosed. I'm grateful this was not years of struggling to figure out what was wrong with him since so many others are misdiagnosed. It was still an ordeal and a process, one which will continue to have it's ups and downs, but hopeful he will grow up happy and healthy with few bad times.
When Kid X was born he weighed 7 pounds. Great and healthy weight. However the first week he went down to about 5 pounds 11 oz. The pediatrician thought I must either not be feeding him correctly or there was something wrong with my breast milk. So I was referred to a lactation consultant. My breast milk analysis was perfect, my feeding times and log were spot on. I left with a, "You're doing everything right." But no answers. Kid X continued to be severely underweight and new symptoms started at age 1 month. Projectile vomiting. I didn't worry, he was eating so much and the pediatrician said it was just GERD, he prescribed prilosec. Although I was very reluctant to start something like this, I decided to try. There was no relief in vomiting and very loose stools started.
Around 3 months, Kid X broke out in a strange, blistering rash on his face. I attributed it to something I was eating, so I backed off all dairy and breads. I ate basic veggies, fruits and little spices to my meals. The rash cleared up. Meanwhile the vomiting continued. Kid X slept a lot. By three months he was sleeping all night with only one feeding. It worried me but he was up during the day with naps and eating well. This was when his first ear infection happened and I noticed that his eyes were turning in. He focused intensely on his hand for hours at a time.
The next 7 months were nothing but more ear infections, stronger antibiotics, more GERD medications, constant vomiting, diarrhea and frequent doctors visits. X was still below the tenth percentile in weight. The staring at the hand worried me at first but then the pediatric ophthalmologist assured me this was just due to poor vision and lazy eye. The problem could be corrected with eye patching to train the weak muscles in the eye. Kid X was eating solid food, many didn't seem to agree with him, anytime he was put down on his back, coughing and projectile vomiting would occur. By one year, X was still not walking but trying his hardest to balance and stand. He was very clumsy and uncoordinated. The year ended with ear tube surgery as the constant infections were becoming harder to treat. I hoped this would help his balance and maybe stop some of the other undesirable problems. I was tired of being embarrassed when out at others homes when a "super diaper blow out" would occur or have to apologize for a massive vomiting accident.
Despite the surgery, it still took another round of antibiotics to clear the infection in his ears. Finally Kid X stated walking at about 14 months. Very clumsily, but it was a relief since this skill seemed a little late to come compared with the other kids developmental progress. Constant vomiting and lose stools, trips to the eye doctor continued until about 15 months. X had eye surgery to help his lazy eye. It was successful. My pediatrician left the practice and I was forced to find a new one. Kid X was still low in weight but eating tons of food, bread seemed to be the only thing that he would eat. I think it calmed his tummy. My new pediatrician suggested something might be wrong since GERD symptoms should be gone by now. She suggested trying no dairy for 2 weeks. This slightly improved the vomiting but not much. Next she said try no wheat for two weeks, but before we started, she did a blood test for gluten sensitivity. One week in this trial and I had an entire day of no vomiting. By two weeks, only one episode at bedtime. During this time I got a call saying that 2 labs came back off the charts and one was normal. We finally had an answer. My pediatrician gave a diagnosis of gluten sensitivity and gluten ataxia because of his poor balance. She encouraged me to get a biopsy for an actual celiac disease diagnosis. I politely declined. 2 surgeries in a year was enough. Plus he would have to eat gluten for up to a month. The diet was working, I wasn't going back to having a sick child. He was also starting to know what made his tummy hurt. My pediatrician also thought his lazy eye may have been a symptom of the neurological damage gluten can do, but couldn't say this was entirely the case. X was doing great, thriving. He still had some vomiting mainly at night when put down to rest for the night. I attribute this to weak gag reflex, it runs on my husband side of the family. In a few short months after diagnosis, he gained weight back to the normal range. Right before age two, Kid X had a horrible sinus infection. Afterwards, the disease took a different turn and vomiting, loose stools and horrible bloating returned.
So that's how a mom found out that her son was gluten sensitive and more than likely, celiac. May is Celiac Awareness Month. I want to share my story so that if you are struggling with strange symptoms, maybe you will be inspired to continue your search for a diagnosis and also try the gluten free lifestyle. In my next post, I'll continue the story of the new and unusual symptom that Kid X displayed and how I figured out what was wrong.
When Kid X was born he weighed 7 pounds. Great and healthy weight. However the first week he went down to about 5 pounds 11 oz. The pediatrician thought I must either not be feeding him correctly or there was something wrong with my breast milk. So I was referred to a lactation consultant. My breast milk analysis was perfect, my feeding times and log were spot on. I left with a, "You're doing everything right." But no answers. Kid X continued to be severely underweight and new symptoms started at age 1 month. Projectile vomiting. I didn't worry, he was eating so much and the pediatrician said it was just GERD, he prescribed prilosec. Although I was very reluctant to start something like this, I decided to try. There was no relief in vomiting and very loose stools started.
Around 3 months, Kid X broke out in a strange, blistering rash on his face. I attributed it to something I was eating, so I backed off all dairy and breads. I ate basic veggies, fruits and little spices to my meals. The rash cleared up. Meanwhile the vomiting continued. Kid X slept a lot. By three months he was sleeping all night with only one feeding. It worried me but he was up during the day with naps and eating well. This was when his first ear infection happened and I noticed that his eyes were turning in. He focused intensely on his hand for hours at a time.
The next 7 months were nothing but more ear infections, stronger antibiotics, more GERD medications, constant vomiting, diarrhea and frequent doctors visits. X was still below the tenth percentile in weight. The staring at the hand worried me at first but then the pediatric ophthalmologist assured me this was just due to poor vision and lazy eye. The problem could be corrected with eye patching to train the weak muscles in the eye. Kid X was eating solid food, many didn't seem to agree with him, anytime he was put down on his back, coughing and projectile vomiting would occur. By one year, X was still not walking but trying his hardest to balance and stand. He was very clumsy and uncoordinated. The year ended with ear tube surgery as the constant infections were becoming harder to treat. I hoped this would help his balance and maybe stop some of the other undesirable problems. I was tired of being embarrassed when out at others homes when a "super diaper blow out" would occur or have to apologize for a massive vomiting accident.
Despite the surgery, it still took another round of antibiotics to clear the infection in his ears. Finally Kid X stated walking at about 14 months. Very clumsily, but it was a relief since this skill seemed a little late to come compared with the other kids developmental progress. Constant vomiting and lose stools, trips to the eye doctor continued until about 15 months. X had eye surgery to help his lazy eye. It was successful. My pediatrician left the practice and I was forced to find a new one. Kid X was still low in weight but eating tons of food, bread seemed to be the only thing that he would eat. I think it calmed his tummy. My new pediatrician suggested something might be wrong since GERD symptoms should be gone by now. She suggested trying no dairy for 2 weeks. This slightly improved the vomiting but not much. Next she said try no wheat for two weeks, but before we started, she did a blood test for gluten sensitivity. One week in this trial and I had an entire day of no vomiting. By two weeks, only one episode at bedtime. During this time I got a call saying that 2 labs came back off the charts and one was normal. We finally had an answer. My pediatrician gave a diagnosis of gluten sensitivity and gluten ataxia because of his poor balance. She encouraged me to get a biopsy for an actual celiac disease diagnosis. I politely declined. 2 surgeries in a year was enough. Plus he would have to eat gluten for up to a month. The diet was working, I wasn't going back to having a sick child. He was also starting to know what made his tummy hurt. My pediatrician also thought his lazy eye may have been a symptom of the neurological damage gluten can do, but couldn't say this was entirely the case. X was doing great, thriving. He still had some vomiting mainly at night when put down to rest for the night. I attribute this to weak gag reflex, it runs on my husband side of the family. In a few short months after diagnosis, he gained weight back to the normal range. Right before age two, Kid X had a horrible sinus infection. Afterwards, the disease took a different turn and vomiting, loose stools and horrible bloating returned.
So that's how a mom found out that her son was gluten sensitive and more than likely, celiac. May is Celiac Awareness Month. I want to share my story so that if you are struggling with strange symptoms, maybe you will be inspired to continue your search for a diagnosis and also try the gluten free lifestyle. In my next post, I'll continue the story of the new and unusual symptom that Kid X displayed and how I figured out what was wrong.
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