It’s interesting how this blog has evolved over the years. Since by whatever combination of methods and miracles, my youngest child with CSID is pretty much able to eat whatever eat wants within reason (often at my disapproval – but how many of you parents would deny your children waffles and peanut butter if they could tolerate them after years of extreme diet limitations?!)
Both of my CSID offspring have learned their limits, and occasionally over do it. But they recover quickly and go on living normal lives for the most part.
I’m going to be honest here for a couple of reasons.
- I don’t want to give some false sense that we all make perfect dietary choices or that our refrigerator and pantry are somehow void of packaged or processed food. In an ideal world, I wish it was! But that’s not realistic and I’ve had to learn to choose my battles and focus on those of us who require the most specified dietary needs at the present time.
- I want to give hope to those struggles, whether for themselves or on behalf of their children. There were many years when I did have to spend hours in the kitchen each day, carefully monitoring every bit of food Parker ingested. (Eczema and Food Allergies ) For two years of that time, I was also working full time! Every extra dollar we had went to supplements and specialty ingredients. I don’t deny his “healing” process started with prayer, but that doesn’t mean God didn’t direct me on how to care for him so I could share my experience here, in a public and global platform, and that my methods could also bring relief and success to others.
My CSID children’s tolerance update 2019
Parker, age 14
Parker will experience digestive complaints when he over does starches (such as the week he ate several McDonald s breakfast sandwiches). Though I’m more convinced the oils used to cook fast food also irritates his digestion, since he can eat similar food at home without issue. When he does experience digestion upset, he takes my home tummy remedy of peppermint tea, lemon, honey, and about 1/2 teaspoon marshmallow root powder. Generally after a BM, he’s back to normal!
Within the last year, Parker has also been assessed for learning issues. He’s struggled with school as far as attention, turning in work, keeping track of assignments, etc. When he got a concussion in September of 2017, these problems got much worse and his doctor referred him to a specialist who conducted a variety of tests. The conclusion is that he has ADHD combined type. I’m not 100% convinced that his increasing his carbohydrates intake of typical American foods isn’t making the symptoms worse, but he’s almost fifteen years old now.
He doesn’t have a lot of time to experiment with diet changes and see if that helps. He was prescribed medication, but I’m not quite on board with that yet. One side-effect is reduced appetite and since he’s still not gaining and keeping on weight consistently, I’m not sure that would be a good idea. Not to mention the other slew of long-term effects on his brain. For now, he’s got a 504 plan. I mention this in case other children, teens, or adults with CSID also have ADHD or learning issues. Maybe doctors will take the brain-gut connection more seriously if these connections are mentioned more often.
Elora, age 25
My daughter, Elora, with CSID is now a 25 year old mother ready to give birth to her second baby in a matter of weeks. She mostly avoids juices and any drink containing sugar, including apple juice and soda pop containing corn syrup or cane sugar. She uses fructose in her coffee, however. She also knows she can only take a couple of bites of cake! More than that, and she’s running to the restroom.
I don’t hear of any other digestive complaints from her aside from irregularity. But she is 9 months pregnant! Also a reminder that with her first pregnancy, she felt her tolerance to sugar increased for whatever reason. However, it declined again after she quit breastfeeding. Not sure the connection to CSID here, but again, I mention details in the case anyone else out there has a similar experience.
I’m super excited about gaining a granddaughter! And will obviously be distracted even more than normal once she arrives!
My Son with Celiac Update
Dawson, age 19
Back in August, I took my son, Dawson, to a dietitian I met at a networking meeting I go to every week for our hardwood flooring business. Her and her husband, a chiropractor, run a Apex Chiropractic and Wellness in Boise, Idaho.
Aside from gluten intolerance, Dawson has suffered from ADHD, social anxiety, mild depression, insomnia, and chronic ankle issues for several years. He also gets hives or headaches for unknown reasons.
So Erin recommended a blood test that would determine which foods, chemicals, etc. could be causing inflammation in his body, followed by a protocol of 14-day menu plans that started with eliminating anything that was causing the slightest amount of inflammation.
If you have the resources to do so and can get a dietitian or physician to order the test, I strongly recommend you do so! It may help you to discover the mystery component that is contributing to ongoing symptoms regardless of your attempts to curb major dietary culprits.
MEDIATOR RELEASE TEST and LEAP REPORT
The test is named MRT (Mediator Release Test) and it was done by Oxford Biomedical Technologies in Riviera Beach, FL. The results were included in a report and protocol called LEAP ImmunoCalm (R) Dietary Management Program. My son had his blood done at a local lab and they mailed it in. I imagine any dietetic or physician can have it ordered. I’ve linked the test and program to their names above to the lab website that conducted the tests.
The results were a bit of a blow. Since I’m summarizing here, I won’t go into details, but they did reveal he was still getting traces of wheat somehow, and that he is having major inflammation response to corn, rice, soy, chicken, and turkey! Other foods causing slight, yet significant inflammation are sugar, onion, tomato, dairy, black pepper, and vanilla. You see how the most random food can be revealed?!
Dawson is doing better as of today, but still working on learning how to prepare his meals, gaining weights, and eating often enough to maintain his energy levels. He has not added the major inflammatory foods back into his diet as of yet.
Of course, this has made it very challenging in our house as I am also avoiding very specific foods in order to get back on track with a Paleo-base diet by starting with another 21-day sugar detox, then transitioning into Keto for however long it takes for me to maintain self-control and indefinitely avoid processed sugar, gluten and most grains.
More on that in my next post, coming soon!