Rex has now been on the GFDF diet for over six weeks. We're learning as we go. I have been reading a lot and am just blown away by the information I am finding and how it seems to fit with Rex. I have always known about this diet, but didn't think it was necessary for our little guy. Now I regret not starting it earlier. Let me share a little bit of what I've learned and how things are going.
Allergy & Addiction
The complex thing about gluten and a dairy protein called casein, as I understand it, is that they seem to be connected to a food allergy/intolerance while at the same time being addictive.
As far as the GI tract is concerned, gluten and casein allergies/sensitivities/intolerances are frequently tied to erosion in the lining of the intestines, making them too permeable. Sometimes this is called leaky gut. No one knows for sure why or how the intestines in some people become too permeable, but theories include genetic predisposition, viral infection, excessive yeast/bacteria, and enzyme deficiency. When the openings in a person's gut become too large, it gets increasingly difficult for the body to absorb important nutrients from food. At the same time, toxic substances, incompletely digested food, and polypeptides are released into the bloodstream. Peptides from gluten and casein which have not been completely broken down are among them. Once in the bloodstream, they are absorbed by the body in excess which brings us to the addiction.
As far as the brain and nervous system go, gluten and casein are processed and used by the body like opioids (think heroin and morphine - I have seen the words opioids and opiates used interchangeably). In people with a healthy GI tract, this is not a problem as they can digest these substances properly, but those who have imbalances and deficiencies as well as too much permeability in their gut often end up with an excess of peptides derived from gluten/casein because they cannot break them down. In turn, this leads to excess absorption of these opioid substances through a leaky gut, causing an addiction. A sign of such an addiction is if people self-limit their intake primarily to gluten and casein-rich foods. In the last several months before we started the diet, Rex was only happy to eat when he was offered a sandwich or other wheat carbs (waffles, pancakes, crackers) or whole milk yogurt. He had honed in on the foods that made him feel good (addiction).
Symptoms of Food Allergy/Intolerance and/or Vitamin Deficiency
I didn't know at the time, but these are some symptoms of a gluten allergy/intolerance Rex showed: red ears (for as long as we've known him his ears sometimes turned bright red suddenly - I just thought he was hot), abnormal bowel patterns (super duper constipated kid even with Miralax), bouts of screaming, slow growth (Rex has been able to gain weight, but not much height), irritability and changes in mood (Rex has always been able to go from completely happy to immensely sad or angry at the drop of a hat). There are also symptoms like headaches, cramps, and achy joints that he might have been experiencing, but we don't know because he cannot tell us. Since we adopted him, Rex has never accepted milk. Before his palate surgery, I was advised to get him to drink milk, so he would have a caloric beverage while his mouth healed. I bought a lot of different milk options with various amounts of fat and flavors to try and Rex did drink the strawberry and chocolate milks. The problem was that after he drank them, he would spit up all day and not want to eat anything else. These are symptoms of a dairy sensitivity, but I only half way made that connection in my head because yogurt did not seem to affect him negatively. Needless to say though, I stopped giving him milk after just a few days.
Symptoms of Gluten/Casein Withdrawal
We have definitely seen symptoms of gluten/casein withdrawal with Rex. They say it takes at least three months to clear these substances completely out of our bodies, so we will likely continue to see them for a while longer. Fatigue: there was one week where Rex was incredibly tired and even fell asleep during therapy in school. Since we were all sick with flu, we figured he had the same illness, but in retrospect I think this was a gluten withdrawal response during the second week of the diet. He must have been crashing hard. Runny nose/cough: Rex has had two bouts of this since starting the diet. Anger/Agitation: Rex has been more aggressive in recent weeks than he had been since last spring. He is pinching, scratching, biting, pulling hair, pushing and swiping stuff off surfaces. Just in case this is not a function of withdrawal, we are addressing it behaviorally at school and at home. It's also possible that there's another food sensitivity coming to the surface through these behaviors now, so we may soon be experimenting with removing ingredients like soy or corn. I am also thinking about getting some labs run to uncover potential additional food intolerances and look into some related issues like possible heavy metal poisoning etc.
Vitamins and Supplements
Many people who have a too permeable gut (leaky gut) are not able to absorb enough vitamins and minerals from their diet. Therefore, I think it's safe to assume that Rex is deficient in these nutrients. I have been wanting to add a multi-vitamin for him for a long time, but knew he would not swallow a pill or take a chew. I tried a liquid but he could smell the "Fruity Splash" flavor from a mile away in his juice and would not accept it. Finally I have found
a powdered vitamin/mineral supplement that I can stir into cold foods for him. He's taken it now for eight days in a row. Yippeee! I have also added a powdered probiotic which I can stir into his juice and he still drinks it. The probiotic should help grow new, healthy flora in his GI tract and cut down on any excess yeast he may have. Proponents of the diet also strongly suggest that the person going GFDF take digestive enzymes, but I haven't had time to look into that yet.
Lessons Learned
Well, I, for one, didn't know that soy sauce contains gluten. I thought it was just soy beans fermented in brine. So, when I made meatballs for the kids, I used some soy sauce for flavoring which led to the now famous red ear incident. Right after eating these meatballs, Rex's ears went crazy red and when I saw it, I knew for the first time that this is a symptom of a food allergy/intolerance, so I double-checked the ingredients I used and learned about gluten in soy sauce. The red ears were caused by Rex's body's response to the accidental dose of gluten. I definitely felt bad, but in a way this was a confirmation that we are on the right track with this diet.
Dinner Menu
Over the last week or so Rex has eaten probably a more varied dinner menu than I can ever remember. All of these dishes were homemade and GFDF (not counting that darn soy sauce and the Sunshine Burger): Saturday - meatballs, Sunday - chicken with a cheesy sauce, Monday - mashed banana/avocado, Tuesday - corn chowder with corn tortilla strips, Wednesday - shepherd's pie, Thursday - baked sweet potato, Friday - mashed banana/avocado, Saturday -
Sunshine Burger (we all really love these), Sunday - German potato cakes.
Improvements in Rex
Rex has been having regular, almost daily BMs without Miralax since January 27. He is enjoying food again and accepting a much greater variety. Rex also seems to have an increased sensitivity to pain which is a very good thing. Many times when he gets hurt, he doesn't even flinch, but lately I have seen him rub his boo-boos a little bit after they happen. His teachers tell us he is more socially aware at school. It also seems like Rex is in a noticeable growth spurt. It takes anywhere from three to eight months for all gluten and casein peptides to disappear from the body and allow the diet's full effect to take place. This means we have a long way to go, but I can't wait to see what this diet brings for Rex. There will likely be more trial and error as we try to tweak Rex's intake until we hopefully get it right.
