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!

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My 4th 21-Day Sugar Detox – 2019

As I geared up for my daughter, Tayler’s, wedding this past September, I knew I needed to be at my best, so I took on my third 21-day sugar detox. Every time I’ve done this, I’ve learned something new about how to simplify the process as well as how my body and mind respond to sugar (this includes all forms natural or processed such as fruit, honey, etc.) and grain-based carbohydrates such as rice or corn.

From my past two 21-day sugar detox experiences, the first few days were always the most difficult. But once I was sleeping better and had more energy, it was much easier to avoid temptation of taboo foods for the remaining of the detox or fasting period.

However, I always seem to start giving in once the holidays begin. It starts with indulging on a few pieces of Halloween candy and then evolves into a full meal at Carl’s Jr during a long day of Christmas shopping! By the time it’s actually December, I’m roughly eating 50/50 Paleo/SAD (Standard American Diet). I’m sleeping less, more irritable, and the brain-fog and forgetting things is out of control. And the end of 2018 was no exception.

I honestly don’t know how long I will succeed this time, but I’ve got to give it another try. I know I will feel better inside and out — for however long it lasts!


Past 21 Day Sugar Detox Challenges

As I prepared for my fourth 21-day-sugar detox, I reflected on some things that have made it challenging in the past. I’m really working on being realistic with my goals for 2019, so I needed to asses the struggles I’d had before, and perhaps pinpoint why I’ve found it hard to stick with the diet for the long-term.

Eating Often Enough

On any given week day, I tend to consume 2 to 3 cups of coffee over a couple of hours as I review my goals for the day and get to work. Our family business requires a lot of tasks and some days I get caught up in bookkeeping or project scheduling and before I know it, it’s 2pm and I haven’t eaten a thing!

Then I’m off to prepare a batch of Paleo pancakes with eggs (no matter the time of day, I usually prefer a breakfast food first!)

My second meal of the day is then dinner at around 7pm. This will include a large portion of animal-based protein, cooked vegetables and a starch (rice, corn, potatoes, or sweet potatoes).

I don’t drink enough water throughout the day either.

So my first hurdle to overcome is getting used to eating three meals with snacks in between to avoid getting hungry, which during the detox leads me to getting hangry!

Meal Planning Challenges

I’ve been known to get pretty ambitious once I decide to take on major dietary changes. I’m determined to follow the diet exactly and go head-long into ordering and shopping to stock my pantry and fridge with all the necessary items for a full week or more of recipes.

Then I end up with way too much fresh food on hand, and find myself scrambling to prepare all of it regardless of the recipes and menu. I have too many left overs or lack the time to use all the fresh produce, and inevitably end up throwing stuff out.

As of today, I’m on DAY 5, but started out using the food already in my fridge for the first few days. I had deli meat and cheese, eggs, salad ingredients and some fresh vegetables I needed to use up first.

I finally went shopping based on the Week 1 menu in the 21 Day Sugar Detox Daily guide on Friday and ordered the few pantry items from Thrive Market that I knew I couldn’t find at Whole Foods.

Online Updating

My other challenge in the past was planning on updating my progress regularly and failing to keep consistent. As part of my overall 2019 goals, I want to be realistic about the rate I post to my various social media outlets. (I posted to my Author Website last week on this if you’d like to read more click HERE)

For this blog/website, the most realistic effort I can make at this point is to tag my relevant Instagram (find me at rk3775)  posts with #csidrecipes #ketoforkids #21daysugardetox #paleo and other similar phrasing. Before I take on trying to add more posts, I really need to review and update all the current posts that are already here and note the date of the update for those who haven’t been following this blog for long.


Recommended Resources for CSID, Paleo, Sugar Detox and Keto

As always, I highly recommend the following recipe books and dietary guides, as both Diane Sanfilippo and Danielle Walker have become my go-to gals when it comes to amazing recipes and paleo/keto lifestyle education.

As always, please modify any recipe per your specific dietary needs and food sensitivities!

Diane Sanfillippo (BalancedBites)

PRACTICAL PALEO

21 DAY SUGAR DETOX DAILY GUIDE

KETO QUICK START


Danielle Walker (AgainstAllGrain)

Find the link to all these books HERE

  • Against All Grain
  • Against All Grain: Meals Made Simple
  • Celebrations
  • Eat What You Love

 

I pray peace and hope in 2019 to you all! Have an amazing year!

Managing CSID when time and money are limited

Challenges of CSID during life changes

Over the past 18 months or so, our family has endured many challenges. Sticking with the ideal food and supplement choices has not only been hard, but impossible at times. I’ve had to allow compromises, only to see my children or myself suffer as a result. And as much as I want to be that “perfect” example for all those parents or adults out there struggling with a recent CSID or GSID diagnosis – I also want them to know there will always be challenges.

Yet, because of all the knowledge and experience I have gained from trial and error, and understanding from resources that focus on providing our bodies with digestive support – I am hopeful that in time we will get back on track.

I am also learning how different each CSID case is – along with how close relatives may experience various levels of carbohydrate intolerance, autoimmune diseases, or mild digestive upset. As of today, 4 of my 5 children as well as my husband recognize associated symptoms when they choose to partake in food containing sugar, starch, or dairy products. In June, my 17 year-old son, Dawson, received a Celiac Disease diagnosis after several unexplained events related to inflamed joints. (See Our CSID Story and scroll down to 1999 to read how we’ve had warning signs since he was young). I will write a separate post about the challenges and blessings that have resulted from this diagnosis. Ultimately, we are learning that our entire family should avoid sugar (processed, artificial, or corn syrup based), starch (from wheat and most grains), or dairy (except grass-fed organic on occasion) as much as possible.

And this is really the purpose behind my blog and my book A Place to Start Without Sugar or Starch. It’s about knowing we are not alone in this daily battle. It’s about understanding we will fail at times, but that it is possible to gain ground again and seek out the resources and answers that can provide a lifestyle of true health and wellness again

Here are my most recent tips to providing CSID-friendly meals while on the go and on a tight budget!

Tips for quick and easy CSID Meals

For some of these meals, a digestive enzyme may be required to help the individual process any naturally occurring sugars or starches. Choose one options per bullet point and modify them as needed.

Breakfast

  • Nitrate-free bacon with a semi-ripe banana, one slice of gluten-free toast (Schar brand is also egg free!)
  • Sweet potato (we use the light ones with white flesh) hash browns with chopped tomatoes and egg prepared as desired
  • Gluten-free, non-GMO cold cereal with unsweetened almond milk (digestive enzymes recommended)
  • Bob’s Red Mill Rice Farina (super excited to have recently discovered this as Cream of Wheat used to be our favorite years ago!) NOTE: This contains approximately 32 grams of starch per 1/4 cup, yet for unknown reasons everyone in our family seems to tolerate any food derived from brown rice very well.

Lunch/Snack

  • Raw almonds
  • KIND bars granola bars (gluten-free and non-GMO)
  • Unsweetened applesauce or semi-sweet fruit such as strawberries, raspberries, blueberries, grapes, or red pears.
  • Nitrate-free, gluten-free lunch meat sandwich on gluten-free bread (we use smashed avocado in place of mayo due to Parker’s egg white allergy)
  • Tuna salad (albacore, wild-caught tuna blended with avocado, olive oil, sea salt and a dash of white vinegar on a bed of romaine lettuce with black olives and grape tomatoes)
  • Non-GMO peanut or almond butter sandwich or cup with celery. We use Simply Fruit jam or honey.
  • Non-GMO chips (moderation recommended if they contain corn ingredients)
  • Fresh bite-sized, non-starchy veggies such as sugar snap peas, celery, cucumber

Dinner

  • Brown rice pasta with organic spaghetti sauce (if buying jarred sauce, check ingredients carefully), with ground turkey or grass-fed ground beef
  • Sweet potato skillet (1 pound ground turkey, beef, or leftover chicken plus 2-3 white sweet potatoes shredded or sliced and cooked until crispy, and a steamed vegetable such as green beans or broccoli). On occasion, we use brown rice in place of sweet potatoes.
  • Crockpot chicken with fresh rosemary, sea salt, and pepper. Add carrots, red potatoes, or non-GMO brown rice. Add sliced oranges or fresh cranberries if desired.
  • Most Thai or Asian meals are easy to duplicate at home and many Thai Kitchen products and recipes are suitable.
  • White bean turkey chili

 

Fighting Eczema with Paleo and Aggressive Detox

I feel an obligation to keep everyone informed on Parker’s progress regarding his recent battle with eczema and newly diagnosed food allergies. I want to make it clear that my own error in judgement and allowing compromises to his diet are likely contributing factors. Although there is no way to know for certain, he displays many of the signs of leaky gut–a condition the mainstream medical community doesn’t necessarily recognize but is widely accepted by non-traditional medicine.

In my paleo search, I discovered the book Practical Paleo, by Diane Sanfilippo. The author is a Certified Nutrition Consultant and fully embraces paleo but also understands the many health conditions associated with poor dietary choices. Her book contains a 30-day meal plan for Autoimmune Conditions, including eczema. This is the plan I started feeding Parker this week.
I was surprised to learn about many gut-irritants that are considered “CSID-safe.” Not to say these foods are not okay when leaky gut is not present, but beyond the obvious grains, the lists includes large quantities of leafy greens, raspberries and strawberries—plus eggs, nuts, all dairy and seeds. Parker’s normal diet consisted of most of these foods at home, while away from home this past year he has consumed large quantities of processes, packaged foods (without Food Enzymes and Sucraid.)
This may clear up the mystery as to why some CSID children seem to be irritated by raspberries, strawberries, or dairy (regardless of lactase enzymes) when first transitioning to CSID foods using the Induction Diet I outlined in my own book.
All this said, I want to make it abundantly clear that the foods and recipes I list on this blog–with the exception of those that include dairy products–are not likely the cause of Parker’s present health issues. Although now many of these foods (as listed in bold above) are adding to the problem because he consumed large quantities of grains and GMOs this past year.
In that time, what started as a few eczema patches inside his elbow and behind his knees last December has now progressed into large patches spread across his arms, around his neck and face. The allergy test done in June revealed new food allergies (he had an allergy panel done around age 6 which came back negative for these foods/environmental factors.)
Since he is now allergic to wheat, egg whites, milk (Dr. didn’t clarify lactose or whey), shrimp, cockroaches, Timothy grass, penicillin, cedar, dog and cat dander and hair, not to mention heat and chlorine irritate as well— the summer has been quite a challenge but at least I have been able to control most of his diet.
Sad to say, just removing these foods has not been enough to clear up the rash. The gluten-free baking flour attempt in July didn’t change the situation either. All Parker wanted to eat was the bread, pancakes, etc., and I suspected the high-starch flour was hurting more than helping.
So two weeks ago, I removed all grains (again) and gluten-free baking items. Then Parker started mega doses of probiotics, omega 3s, Vitamin D with magnesium, chlorophyll and having Sucraid and Food Enzymes with every meal. I hoped things would clear up by the time school started this past week, but I think his body needs more time.
The 30-day menu for Autoimmune Conditions in Practical Paleo calls for very little sweet foods. In fact, left-over dinner foods are listed as breakfast for many days. The starchy-root vegetables I have tended to avoid feeding Parker over the years (sweet potato, beet, parsnip), cannot possibly be as harmful to him as the corn, potatoes and wheat flour I have allowed more recently. According to Diane, these root vegetables actually promote the growth of healthy gut bacteria, something I did not realize. Parker will still be taking Sucraid and Food Enzymes with every meal, regardless.
The plan is that after 30 days, if there still isn’t marked improvement, he will begin the 30-day plan again, but I will remove Sucraid as the only variable. My hunch (and this is only my opinion until science proves otherwise) considering Sucraid is yeast-based, is that this may be feeding the bacteria-growth contributing to his rash.
For now, this weekend (next 72 hours) I finally have time (work, writing, and back-to-school commitments have been brutal in the past few weeks) to aggressively attack this eczema from inside and out. Parker is stuck on the couch alternating 24-ounce cups of Chlorophyll Cocktail and organic Dandelion Root tea. With every meal, or 3-times per day (as I am not making him eat unless he is hungry), he will be taking the following supplements:
I will try to post again on Sunday evening to report on how Parker is doing. For now, I have lots of food prep and baking to do to make sure he has ample school lunch options for next week.
Oh, and here is a glimpse at one of his lunches from last week…
olives, dried organic apples, left-over mustard-glazed chicken from Practical Paleo book, raw almonds, and raw organic carrots. Lunch box from yumboxlunch.com.

Going Paleo {Paleo + CSID Part 1}

Sausage, Egg, and Sweet Potato Breakfast Skillet{EveryDayPaleo.com}
Within a few weeks of finalizing A Place to Start Without Sugar or Starch for printing, I started noticing the word “paleo” popping up on my favorite food blogs and on cookbook covers in the health food stores. After researching dozens of other diets that involved a low-carb approach, I honestly did not feel like looking into one more. In the long run I did want to refine my CSID approach, but time and other resources were lacking.
Knowing I was close to eating as healthy as possible with my CSID diet plan, I figured I needed to master the meal planning for my family first. Then I would look into this paleo thing in time and see if it would work in light of CSID.
In my last post I mentioned that I needed to focus on my own health and well-being, which I am still working on. However, with Parker’s eczema worse than ever and my migraines lasting more than 5 days, I was feeling desperate for a natural, long-term approach to our health. We had compromised our diet due to time and money constraints. But I was feeling so lousy, it made it hard to utilize what resources I did have in the best way possible. By this time I had made a note to take a closer look at the paleo diet. After all the compromising of processed foods into our diet, I figured we didn’t have much to lose. Something had to change.
First, though, I had to kick the migraines. I decided to see a chiropractor since the last thing I wanted was to add another medication to my nightstand. I had worked hard to remove most of them over the past 18 months. And I knew pills were not the answer to repairing the imbalance in my body. They were just giving me temporary relief.
I was fortunate enough to visit a chiropractor who uses a whole body approach to healing. From what I gather, he sees his care as just a part of the overall lifestyle change anyone needs to feel well. I had long believed in the theory of chiropractic care, but had not sought treatment since the onset of my Fibromyalgia symptoms back in 2011. I was in too much pain back then to consider getting adjusted.
After a week of treatment and a few tests, the Doctor concluded several things about my state of health.
1. My “normal” was so far from actually feeling well, I couldn’t comprehend what well felt like.
2. I have moderate scoliosis, and impairments in the top and bottom of my spine.
3. With an aggressive treatment plan, plus diet and exercise changes, I actually have a chance to feel great for probably the first time in over 20 years.
Parker was also assessed and the Doctor believes his eczema and his headaches are due to issues in his skeletal system. He doesn’t claim to be able to reverse the CSID, but does believe once Parker is aligned properly, it is possible his overall health will improve drastically.
The chiropractor also fully believes the paleo diet is part of the solution.
That was my tipping point. I needed to set aside my own theories and trust that someone with over 20 years of experience treating people successfully could have the answers I had been searching for.
My first step would be to look into paleo and see if it would work for us in light of CSID. It only took a few minutes for me to see how similar the diet is to CSID-friendly foods. Though Parker and I are in a state of distress, we are not presenting major digestive symptoms. Considering this confession, this is my plan for our family:
1. Since we have already been compromising with starches and grains, I am not going to be concerned with included higher-starch foods from the paleo menu such as cashews, pecans, and winter squashes.
2. I am going to wean us off of most of our digestive enzymes. The paleo diet includes mostly digestive friendly foods, so as long as we include a plentiful amount of raw fruits and vegetables, we should not need help digesting most of the foods. The exception will be to include Sucraid with the sweeter fruits allowed, such as papayas and melons, or dried fruits.
3. We will all be removing some of our most favorite foods over time. The idea is that if we eat 80-90% paleo most of the time, we can occasionally “cheat” with few ill affect. On the other hand, literature on paleo suggests the longer we comply with the permissible foods, the less we will want to eat the forbidden ones. For our family this will mean:
  • No more chips. Even organic corn which is a staple.
  • No more peanut butter. I don’t eat this as I prefer almond butter, but the hubby and kids are going to find this a hard one to completely eliminate.
  • Cutting back virtually all dairy products. Ouch! I really love my butter,cheese, and half&half!
  • No more sprouted grain bread. All grains, including corn are off the table.
Essentially Paleo includes all vegetables (except potatoes), all fruit, nuts and seeds, and animal protein such as eggs, chicken, turkey, pork, and beef raised in a healthy environment with a grain-free diet.
Paleo excludes grains (including corn), legumes (peanuts, peas, and green beans included), beans of all kinds, and dairy products. The books I reference below go into much more detail about why. Since I am a novice at this, I will not attempt to explain it myself.
4. The great thing, however, is we are already 80% there with my CSID diet approach. It will require planning and always having quick snacks on hand such as nuts, fruits, hard-boiled eggs and sliced-up veggies. My food dehydrator will probably be working overtime between drying fruit and making beef jerky.
5. By not purchasing organic dairy products, sprouted grain baked goods, gluten-free cereals, and organic peanut butter, I will save a lot of money that will go to purchasing grass-fed beef, and fresh fish and poultry.
Here are a few of the family-friendly Paleo resources I have found so far. I will be purchasing the electronic versions of the cookbooks soon and can’t wait to get started!
If, as a CSID family, you see the potential in applying the paleo diet to your household, please let me know! I will be posting recipe testimonies and linking to recipes or other resources as we find success.

If you are new to the CSID diet, or you or your child have been recently diagnosed with CSID, visit the brand new website www.CSIDcares.org for a complete description and direction for managing CSID.