Our Family’s CSID Evolution – 2019 Update

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.

  1. 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.
  2. 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!

Advertisements
Paleo Cookbooks

Modified CSID Induction Diet Using Paleo Sugar Detox

Combining CSID and Paleo

In response to a mom who recently contacted me about adjusting her toddler’s diet while waiting for testing and results to confirm CSID, I provided the below information via email. Then I realized other parents might find this helpful. So with a few revisions to apply to a general audience, here is my summarized list of foods to start with while trying to determine a CSID diagnosis or to use after confirmation as an Induction Diet modified from my original.

If you can get the books below as well, I am sure you will find them as helpful as I have. The authors do not mention CSID specifically, so some modifications are needed, but they have far more credibility than I do and Diane speaks on many things I did not feel qualified to mention in my book, though felt strongly about!

Her recipes are not exactly “kid-friendly” but between this book, Danielle Walker’s Against All Grain books and cross-referencing the information I have regarding CSID, I think you will feel some control and direction.

Suggested PALEO Recipe Books

As a disclaimer, I have no connection nor do I receive any compensation for these recommendations — they are simply books and food philosophies that have helped me to feed my family.

Against All Grain

Practical Paleo

21-Day Sugar Detox

Modified 21-Day Sugar Detox Food List for CSID-based Induction Diet

Modified SMOOTHIE RECIPE: amounts of each will vary depending on how many servings, so experiment until you find the right combination. In general: 1 can of coconut milk or 1 cup of almond milk, 1 cup frozen strawberries or blueberries, a handful of greens (kale or spinach), 1/4 cup soaked and drained almonds, 2 tablespoons coconut oil.

Meats, Seafood, Eggs

all okay with minimal processing and no added “flavors” etc. which may contain hidden ingredients.

Vegetables

broccoli, cauliflower (makes a good mashed potato or pasta substitute), celery (cooked in soup for toddlers), cucumber, kale, green beans, bell peppers, sugar-snap peas, spinach, tomato, zucchini or yellow summer squash, spaghetti squash, mushrooms, collard greens, lettuce, artichoke, asparagus.

Fruit

from my best understanding, the sugars in these are fructose only, CSID is a disaccharide deficiency for digesting sucrose and maltose. Fructose is a monosaccharide or single-chain sugar. However, some fruits may irritate until the gut heals, especially those with seeds like strawberries. But you could boil strawberries and strain the seeds out to use the juice for smoothies if you want.

Lemon, lime, and not included in the 21-day sugar detox but should be okay for CSID you can also include: blueberries, raspberries, strawberries, green or red grapes, cherries and add ripe banana(with brown spots) 1/3 per day after the first 10 days if doing okay with the other fruits. I have also heard that granny smith apples and Asian pears are tolerable as a part of the initial diet. Again, wait to see if berries and grapes are tolerable first, and keep in mind serving sizes. A small portion may be tolerable, but too much over a short period of time may not be. This also goes for some allowable starch-based foods.

Nuts/Seeds

Allowing almonds is debatable among CSID philosophies. What I have found is that when no signs of inflammation are present, almonds provide a great source of nutrients, fat, calcium and even iron. To start, soak raw almonds in distilled water overnight.

I make a “porridge” with them — 1 cup soaked and rinsed almonds, 1 cup full-fat coconut milk from a can (Thai Kitchen is the best), 1 ripe banana, 2 tablespoons cinnamon, 1 tsp pure vanilla (no sugar added). Blend and then cook in a pot on the stove on low heat. Add a little almond milk or water if it is too thick. This is not an exact recipe, so you may need to modify amounts.

You may also try the Fake Granola “Almond Cereal Recipe” for children who can chew the ground nuts.

Other nuts, seeds, legumes

that should be okay if they are soaked and added to a smoothie or baked goods: Unsweetened Coconut (MANY health and digestive benefits to coconut if child will/can eat it, so include all forms of coconut whenever you can), pecans, walnuts. Soaked chia or flax seeds may be tolerable after a couple of months and are very beneficial if they can be included once signs are inflammation are gone.

NOTE: NO Peanuts in any shape or form! Peanuts cause inflammation and promote acidity, and if they are not organic, also contain high levels of pesticides and fungus.

Fats and Oils

avocado (1 whole per day if possible, add to smoothies, sliced with a dash of sea salt, layer on lunch meat or over grilled chicken breast or hamburger patties, use in place of mayonnaise and blend with tuna, etc.), coconut oil, olives and olive oil, fats from animal meats like bacon, chicken broth, etc.

Dairy

hold off for now. Once you get the CSID test to determine Lactase levels, you can begin adding some milk-based products. (organic, full-fat, grass-fed dairy if possible)

Beverages

unsweetened, homemade almond milk, coconut milk and coconut cream (full-fat), distilled water (will help to flush out toxins and excess salts) ABSOLUTELY NO JUICE!

Starchy Vegetables or Fruits

These may contain low-levels of natural amounts of sucrose. Add after three weeks success on the above foods: (start with one at a time in small servings once per day over three days, then add another, etc.)

acorn squash, butternut squash, light sweet potatoes (white flesh, creamy skin), pumpkin, green peas, green-tipped banana, grapefruit, apples, carrots, garlic, ginger

Beans

not included in Paleo diet, but are okay for CSID. To start, use dried white Lima or northern beans, soak in distilled water overnight. After cooking, they can be used for soups or blended with onion, garlic, salt and pepper for a white sauce. I’ve used them as pasta substitute too.

Other

homemade broth containing fat, gluten-free mustard, all spices and herbs as long as they are not purchased in a mixed version (some have added fillers or starches), black pepper, sea salt, apple cider vinegar

Digestive Enzyme Links

Print and provide to your doctor and dietitian: Klaire Labs Vital-Zymes

Order from Amazon for best price:Order Vital-Zymes (various distributors, this is just one link)

Although I have done many things to help Parker recover from his eczema and the problems from his food allergies, I believe the regular use of these enzymes over the past year have allowed him to be nearly symptom free as well as to tolerate additional foods. Keep in mind he is 11 years old now and has had several stages of healing and dietary adjustments over the years, but perhaps your daughter will experience better results and not have the addition of food allergies with regular use. Each person is so different, so it is hard to know for sure.

Starch Tolerance Test

So how do you know if your child can tolerate starches at all? The enzyme test results will be an indicator as to whether any starch will be tolerated. Once your child is symptom free and at a healthy weight, then the following “starch tolerance test” can be conducted under the supervision of a dietitian.

1. The child (or individual) must go 3 weeks without any starches at all. Even trace amounts can skew the results. Stick with Group A foods– primarily berries, non-starchy vegetables, meat, poultry, fish, eggs, and dairy. No almonds or peanuts allowed.

2. The child must not be underweight, or have had any diarrhea or vomiting for 3 weeks as well..

3. You will need a box of saltine crackers and a notebook.

DAY 1– note child’s weight and the date. Start with 1 saltine cracker in the morning and write down the time you gave it to your child. Aside from a few sips of water, do not allow child to drink excess fluids when they eat the cracker.

Each square cracker contains approximately 2 grams of starch. Note any symptoms such as bloating, gas, complaints of stomach pain along with the time they occurred. If none, write this down as well and continue with DAY 2 below..

If symptoms do occur, be sure to write down additional liquids and food the child had throughout the day.

Repeat Day 1 again, adjusting other foods and liquids to determine if symptoms were due to a food-combination issue or a starch-tolerance issue. Do not continue to Day 2 if after several tries, a single cracker creates digestive distress. Your child is not ready for starch at this time. If no symptoms occur, move to DAY 2.

DAY 2— repeat Day 1 and add another single cracker at lunch time. Again, if symptoms present themselves, notate additional food and liquids and try to give the child 1 cracker in the morning and at lunch time again. If no symptoms occur, move on to DAY 3.

DAY 3— Add a third single saltine cracker to dinner. Note symptoms if any. If none, move to DAY 4.

DAY 4 — Beginning on this day, you will increase crackers to 2 per serving, 3 times per day. If no symptoms present themselves, you will continue to increase the number of crackers per meal, per day until your child presents symptoms. Once symptoms present, the total number of crackers tolerated on the previous day is the total starch tolerance level.

EXAMPLES INCLUDE:

Day 4 (2 crackers per meal, 3 times per day) symptom free = Total Starch Tolerance Level of 4 grams per meal.

Day 5 (3 crackers per meal, 3 times per day) symptom free = Total Starch Tolerance Level of 6 grams per meal.

Day 6 (4 crackers per meal, 3 times per day) symptom free = Total Starch Tolerance Level of 8 grams per meal.

Day 7 (5 crackers per meal, 3 times per day) symptom free = Total Starch Tolerance Level of 10 grams per meal.

This may seem daunting, but it is the best method to determine exactly how much starch your child can tolerate.

You may add non-starchy toppings that do not require Sucraid to add flavor and keep your child interested in eating the amount of crackers needed. Toppings may include cream cheese, pure fruit raspberry jam, plain yogurt with sliced blueberries, avocado slices with sea salt, peeled cucumbers with tuna (if canned, make sure there is no broth or soy flakes added).