Big boy - can he still be coeliac?

[NicJ]

My 5 year old has always been big,  height and weight (over 100% percentile in both). He has a distended belly and is hungry all the time.  His belly is the worse at the end of the day.  His stools have always been runny and a mustard colour.  His paediatrician has never been concerned and over the years put it down to toddlers diarrhoea. He is obsessed with food. At parties while kids are off playing,  he hangs around the food table and eats non stop. We have to watch him all the time.  

Any milk goes straight through him but he tolerates a bit of cheese.  

His behaviour is really bad.  He's defiant and refuses to listen to us and at school he is aggressive with other kids and won't participate in any school work.  He refuses to sit with others and join in. Sometimes he has this edge to him like he's not in his own body. 

About a month ago we decided to do strict gluten free. Everything changed.  He is pleasant,  sweet, no aggression etc... and he has normal solid bowel movements. 

It sounds like coeliac (although we have not path tested). Is it unusual given that he is overweight?

Love to hear others thoughts,  experience. 

 

Nicole x

[trents]

Welcome to the forum, @NicJ!

With regard to the growth curve, it is more common for celiac disease to put children behind. With adults, there is this common misconception that celiac disease will necessarily result in being underweight. While that is more often the case, overweight adult celiacs are certainly not a rarity. And it is for the very reason you describe: overeating to compensate for nutritional deficiencies. I see no reason it can't work that way for children. Having said that, there may also be other factors at play here such as genetics or other metabolic problems.

Unfortunately, since you have already put your son on a gluten free diet, any testing for celiac disease would now be invalidated. The only thing in that regard you might look into would be a genetic test to look for celiac gene markers. But even if he has one or more genes that have been tied to developing celiac disease that falls very short of a diagnosis since 40% of the general population carries one or more of those genes. It takes both the genetic potential and some kind of triggering stress event in the body in order to develop active celiac disease.

The other distinct possibility is that your son has NCGS (Non Celiac Gluten Sensitivity) which shares many of he same symptoms with celiac disease and is 10x more common. There is no test for NCGS, however. Both celiac disease and NCGS require strict abstinence from gluten. The difference between the two is that celiac disease damages the villous lining of the small bowel but NCGS does not. By the way, other food intolerances are often found in conjunction with celiac disease. Dairy, oats, soy, corn and eggs are common ones.

[janeen McConniel]

On 1/28/2024 at 6:09 AM, NicJ said:

My 5 year old has always been big,  height and weight (over 100% percentile in both). He has a distended belly and is hungry all the time.  His belly is the worse at the end of the day.  His stools have always been runny and a mustard colour.  His paediatrician has never been concerned and over the years put it down to toddlers diarrhoea. He is obsessed with food. At parties while kids are off playing,  he hangs around the food table and eats non stop. We have to watch him all the time.  

Any milk goes straight through him but he tolerates a bit of cheese.  

His behaviour is really bad.  He's defiant and refuses to listen to us and at school he is aggressive with other kids and won't participate in any school work.  He refuses to sit with others and join in. Sometimes he has this edge to him like he's not in his own body. 

About a month ago we decided to do strict gluten free. Everything changed.  He is pleasant,  sweet, no aggression etc... and he has normal solid bowel movements. 

It sounds like coeliac (although we have not path tested). Is it unusual given that he is overweight?

Love to hear others thoughts,  experience. 

 

Nicole x

Nicole,

Absolutely YES! I had pins and needles in my legs and feet, trouble sleeping, and I could barely walk, so I went to a Neurologist who tested me thoroughly, including running a Celiac blood test. They would not tell me anything about that blood test but said go see your doctor. I finally got a copy of my work-up, and at the same time, my husband was googling why I had uncontrollable gas. I was googling the blood test. we both came up with Celiac. I scheduled an appointment with a gastroenterologist and requested an endoscopy to verify Celiac. That doctor took one look at me (185 LBS) and told me a gluten-free diet was just a fad for overweight people and was not going to schedule the endoscopy for me until I gave her another reason: I had been on reflux medicine for 15 years, so she agreed but only for that. My blood work marker was 158 (very positive for celiac), and she discounted it because I was not immaculate.  Your Primary care doctor can do the blood test, but you have to have been eating gluten for it to give you the result. I doubt you want to put the child or yourself through the experience again. 

Also, as soon as I went gluten-free the pins and needles subsided and have never returned. There are over 300 symptoms of Celiac/gluten intolerance including the things you have mentioned. The bloating and gas ended up being an autoimmune response to dairy. Anytime I have dairy, the gas, and bloating come back.

2 other things you might want to look at:

Food coloring is a food item that causes bad behavior as well, not just red dye #40. Yellow is even worse. My granddaughter had to stop eating all foods with food dye/color, and her behavior has changed dramatically.

Sugar drives your brain to crave food. It can easily be corrected with supplements. Ask your doctor about it. If you stop having sugar for a couple of weeks, you don't even want it, but all it takes is indulging for a short time for the cravings to return.

If your doctor does not support looking into this for you, I suggest you get a new doctor or an additional one that will help you.

 

Bless you and your baby!

[knitty kitty]

@NicJ,

Your son may be used as an example of High Calorie Malnutrition.  

High Calorie Malnutrition occurs in people who eat a diet high in carbohydrates without sufficient Thiamine Vitamin B1 necessary for our body to turn the carbohydrates into energy fuel for the body to utilize in normal functioning.  

When there's insufficient Thiamine necessary to turn carbohydrates into energy, the body uses a short cut.  The carbohydrates are partially broken down and stored as fat.  It takes much less Thiamine to turn carbs into fat than into energy fuel for the body to utilize.  The Thiamine saved in this process is utilized for mandatory body functions like heart, lung, and brain activity.  

The brain uses as much Thiamine just thinking at a desk job (or in school) as the muscles use in running a marathon.  Low thiamine in the brain is associated with aggression and Attention Deficit Hyperactivity Disorder (ADHD).  

Diets high in simple carbohydrates (sugars, starches, potatoes, dairy, etc.) require increasing amounts of Thiamine.  If this requirement for additional Thiamine is not met, the brain tells the body to keep eating in an effort to find some source of Thiamine.  

Excessive carbohydrates and poorly digested carbohydrates move through the digestive tract and feed intestinal bacteria which can lead to gas, bloating and diarrhea.  The sugar in dairy, lactose, can feed these bacteria in people with lactose intolerance and Celiac Disease.  In people with a sensitivity to Casein, the protein in dairy, can cause inflammation.  

Thiamine insufficiency and high calorie malnutrition can occur at any age.  I had high calorie malnutrition as a child and later as an adult.  My doctor laughed at me, saying I was too fat to be Celiac when I requested testing.  High Calorie Malnutrition can occur whether or not one has Celiac Disease.  Because celiac disease causes malabsorption of essential nutrients like Thiamine, obesity due to High Calorie Malnutrition in newly diagnosed Celiacs is changing the stereotype that Celiacs look like they're starving, all skin and bones.   

Do consider getting your son checked for Celiac Disease.  A genetic test would not require reintroduction of gluten into his diet.  Keep in mind that celiac disease is inherited from the parents, so the parents and other siblings should be tested as well.  

Hope this helps!

References:

The Role of Thiamin in High Calorie Malnutrition

https://austinpublishinggroup.com/nutrition-food-sciences/fulltext/ajnfs-v3-id1061.php

....Malnutrition in Obesity: Is It Possible?

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8820192/

.....Thiamine Insufficiency Relative to Carbohydrate Consumption

https://www.hormonesmatter.com/thiamine-insufficiency-carbohydrate-consumption/

.....Health Requires Energy. Energy Requires Nutrients.

https://www.hormonesmatter.com/health-requires-energy-energy-requires-nutrients/