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 occassion, 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

 

Food Intolerance and the Immune System

When Undigested Carbohydrates Wreak Havoc

With the popularity of probiotics hitting main stream media, I have to ask why food intolerance is not considered a serious risk to the immune system. I have heard more than one celebrity promoting yogurt or another food containing healthy bacteria state that 70-80% of our immune system is in our gut.

Search “food allergies” vs “food intolerance” and you will likely come across the difference being that food allergies effect the immune system and food intolerance does not. You will also find that the only type of food referenced as “intolerant” is that for lactose, or milk products.

I have not come across a single article or medical reference discussing the fact that people can also be intolerant to sugar and starch. How are people suppose to know that milk is not the only culprit?

Beyond Lactose Intolerance

My research indicates that undigested food—specifically undigested carbohydrates (lactose, sugar and starch)— promote the growth of harmful bacteria in the large intestine and can lead to other health problems.

The message I hear in general is a promotion of adding “good” but no talk of removing the “bad” and this confuses me.

There is no question that diets high in refined flours and sugars create other health problems such as obesity and diabetes. So why is it so difficult to find concrete data and articles regarding the harm these foods also cause in our digestive systems?

This post is more rhetorical than scientific. Aside from research associated with the Specific Carbohydrate Diet, I have not been able to locate additional evidence that omitting harmful carbohydrates in the light of digestive imbalance is also a benefit to the immune system.

I only have my personal experience and knowledge regarding CSID and the inability to break down sugars and starches. If you have a personal experience related to food intolerance and the immune system, I would love to learn about it.

Possible Allergic Reaction From Handling Offensive Foods

Last night, a thought occurred to me regarding Parker’s tendency to acquire a fever for a day without any other obvious symptoms. This has happened twice in the past few months.

Yesterday, he participated in holiday gingerbread making and homemade play dough at school. I instructed him not to eat anything, but his hands were in contact with the foods he is allergic to (milk, wheat, candy coated with food dye and full of sugar) for several hours. Although he did wake up with a headache, by the time he came home from school he was talkative and did not complain. However, at about 9pm, he spiked a fever of 101 degrees F, and was complaining of a headache again.

This morning, he had no fever, but was complaining of a headache and leg pain again.

I will note that the past couple of weeks have been tough on him. He has not had consistent sleep schedule and just finished as the star of the church Christmas Play. This is amazing given his history the past two years, and I didn’t want a few compromises to his diet to hold him back. After all, his skin looks amazing and he has been in good spirits. However, his intake of “fast food” (aka–canned beans and pre-packaged gluten-free breads) has also increased.

All of this could have slowly worn down his immune system, thus leading to a “reaction” of sorts to the handling of flour, sugar, and milk throughout the day.

This is all conjecture, of course, but I thought I would put the idea out there in case anyone else has experienced strange symptoms that may be related to handling (but not ingesting) offensive foods.

NOTE: To be safe, I did take Parker to the doctor to cancel out infection such as strep throat. The nurse practitioner diagnosed an ear infection, though his other symptoms of neck ache, sore throat, and leg pain do not seem to coincide.

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What My Son’s Eczema Has Taught Me About Parenting a Child with Unique Needs

(NOTE: This is a duplicate blog post originally published on http://www.SacramentoParent.com in October 2013. I am sharing it here to reach a broader audience.)

My nine-year old has faced many health challenges in his life, including failure-to-thrive as an infant, seizures through age 4, and food intolerance. However, more recently he has acquired chronic and severe eczema. The last flare-up lasted over six-months due to unknown environmental and food allergies.

My husband and I often ask ourselves why Parker–with the heart and attitude of an angel–must suffer so much. He just wants to be a normal kid and do the things normal kids do.

When his rash began to spread up his neck and onto his face, he also had to endure stares from his classmates and constant comments from strangers such as “Ooo…bad sunburn!” or “What’d he get into?” I even caught a grocery bagger coming up behind us to “sanitize the aisle” after a shopping trip where he was particularly irritated and scratching non-stop as we stood in line.

Thankfully, I was able to pinpoint a few major triggers and after a lot of research, discovered the perfect and individualized combination of natural and prescription remedies to help him heal both inside and out.

After making the difficult and challenging choice to homeschool him for the remainder of the school year, we began finally seeing his condition improve. Today, I am happy to announce my 9-year-old looks great and is back to his old goofy self. He sings and dances in the bathroom as I apply all his creams and ointments post-shower. He can’t wait to be Hawkeye for Halloween and told me earlier this week, “Mom, I do NOT want to be that house that doesn’t give out candy just because I can’t have any!” As soon as he is up for a break from his schoolwork, he is running around the house practicing shooting his arrows.

So what I have learned from all of this?

1. Maybe it’s obvious, but children are resilient. No matter how awful he felt or looked, Parker would still tag along with me on errands, and even to work when needed. Sure, there was a point where he watched a lot of T.V. and didn’t do much. But as soon as his energy returned he was up and ready to face the world. A day doesn’t pass without several hugs and smiles. He knows intuitively I have done all I have in my power to help him get better.

2. People will stare but we don’t have to care. Parker seemed completely oblivious to the looks he got when we were out in public. He didn’t try to “hide” himself and on his good days, actually drew attention singing along to the radio, or making sure I understood exactly which sports car he liked in the parking lot.

3. There is only so much we can do as parents; the rest we have to let go. There is a part of me that wants Parker to get better for good. I am tired of micro-managing every piece of food that touches his mouth and being concerned about his exposure to dust or hair or chemicals in the air. But stressing about all of it just puts everyone in a bad mood. I have my arsenal of remedies at hand, and have resolved to take action as soon as I see a problem arise–instead of going crazy trying to prevent a flare-up in the first place.

4. Normal is a state of mind. What is “normal” anyway? Normal isn’t always a good thing, or even a great thing. As parents of children with unique needs, our normal may look different, but it is still normal to us. So what if we can’t participate in gorging all the Halloween candy next week. At this point, Parker is too excited about trading in his candy for tickets to see Thor to care!

Paleo, Eczema and CSID Update

This past month has been overwhelming to say the least. A move, an ill grandparent, continued management of Parker’s symptoms and still working 40 hours per week is not easy!

But I have a few minutes before I am off to my day job to update everyone.

Parker is doing really well at the moment. As you can see, he is ready to take on on new neighborhood tonight–and perfectly fine with our deal that he exchanges all candy for tickets to see the movie Thor in November.

After finally getting in to see an allergist, a serious group prayer intervention (for God is in all of this no matter how I look at it), and completing our move into a healthier home, Parker appears to be on the mend.

One thing I have learned in all this, is I absolutely do not have all the answers and hope that nothing I have posted to this blog indicates as such. I am and have always simply shared what I learn, what works (or doesn’t) work for us, and what I feel could help others in understanding CSID.

This journey with CSID and associated health issues is a CONSTANT LEARNING PROCESS!

Each of us must approach our needs or that of our child’s on an individual basis. New research pops up every day… and honestly I am not in the position to be keeping the world apprised of it at this moment. For example (and if I had time I would site sources)—more research is coming out to discourage the excessive use of fructose in any form aside from its natural form in fruit. But even large amounts of fruit or honey could potentially cause problems for sensitive individuals. I posted a link a while back regarding a finding that I believed at the time was more related to the consumption of highly processed foods.

So please, please take what works for you and do—DO—more research to find what is best for you situation.

Right now, I have my hands full in caring for my son and attempting to complete my many other responsibilities. There are many other blogs and books out there written by experts and professionals that focus on dietary and digestive health for a living. I am not one of those people! In the time since I started this blog, there is much more information available. In a sense, I no longer feel obligated to share everything since much of it is becoming common knowledge. Some of my assumptions and interpretations from a few years ago have come to pass as truth. Others, not so much. For example, I have learned that dairy is probably best to be avoided in all forms. Every member of my family has experienced feeling better by not having milk, cheese, etc. When I have allowed dairy back in the house after we all went without for a while–boy did we all notice a difference!

Again–this is our personal experience I only share to offer a possibility and to encourage whoever reads this to look into the issue for themselves.

Anyway my time is up. I will continue to be available my email to answer specific questions. Please allow a week or so for me to respond. In the meantime, take care and I hope to continue to offer hope if nothing else, to those that come across our public journey of learning how to manage CSID through various means.

CSID and Symptoms of Food Intolerance

(exerpt from A Place To Start ebook)

Primary Symptoms of Food Intolerance

These symptoms can begin to occur minutes after eating, as with lactose intolerance, or can take from several minutes to several days as with CSID. Tracking even rare occurrences of these symptoms over time can help determine if they are related to food or another cause.

·       stomach pain
·       bloating or distention of the stomach
·       excessive gas
·       cramping in large intestine
·       diarrhea
·       constipation
·       diaper rash (fermented odor)
·       vomiting without a fever
·       body or facial rashes
·       irritability
·       restlessness
·       difficulty sleeping
·       eczema
·       frequent, smelling, acidic and/or oily bowel movements
·       frequent yeast infections or yeast rashes for infants or children
·       failure to thrive
·       irritable bowel syndrome
·       excessive fussing and whining