- 1000mg Vitamin C (Doctor’s Best)
- 2000 mg Fish Oil from Wild Caught, non-GMO Alaska Salmon (NewChapter)
- Food Enzymes (2 Nature Sunshine capsules)
- Calcium Plus Vitamin D (Nature’s Sunshine)
- Probiotic Eleven (Nature’s Sunshine)
- Marshmallow Root powder (2 capsules in warm organic peppermint or ginger tea)
- Plus external treatment of all open, oozing eczema patches with Colloidal Silver.
How to Bring a Healthy Balance Back to Your Gut
This past week, my daughter without CSID got strep throat. For most families, this would not be a concern. Simply go to the doctor, get antibiotics and within a few days all should be back to normal. However, in our home, using antibiotics can result in weeks or months of digestive problems. My biggest concern was that Parker would catch strep from his sister and require antibiotics. This would put him in a highly sensitive state, and reverse much of the progress he has made in recent months. Worse, his diet would become highly limited on the cusp of school starting again, and he could potentially lose weight.
So far, he is not showing any signs of illness. Upon his sister’s diagnosis, I had him on a preventative dose of 1000mg Vitamin C (Emergen-C packs sweetened with fructose), plus gargling with Echinacea and salt water three times per day. Salt water may wash away bacteria, while vitamin C and Echinacea build immune-system strength.
However, with this current threat to Parker’s digestive health, I thought I would also list the additional steps to take if antibiotics are needed in the future.
For a normal, healthy person without digestive issues, it can take up to 5 years for good bacteria to rebuild in the digestive tract! You can imagine how difficult it is for someone with digestive problems to recover.
However, I have good news. If you are prepared and take precautions, a course of antibiotics does not have to take months or years to get over.
First, it is important to have plenty of digestive-friendly foods on hand. These include eggs, green vegetables, homemade chicken broth, plain yogurt, liquid chlorophyll, lemons and berries. Fruit and yogurt smoothies and scrambled eggs with mixed and softened non-starchy vegetables are among the easiest, nutritional options while recovering from an illness.
Removing dairy products except for plain yogurt may also be needed. Avoid the normal “B.R.A.T.” diet if antibiotic use results in diarrhea. For those of us with carbohydrate intolerance, Bananas, Rice, Applesauce, and Toast can exacerbate symptoms. Ideally, implement the Induction Diet I describe for the first phase of controlling CSID symptoms. It may take three weeks or longer to recover from a course of antibiotics, but it is important to avoid sugars and starches until normal bowel movements occur. In addition, probiotic supplements and digestive support supplements are crucial.
Finally, if starches are normally tolerated, reducing or eliminating starchy foods for ten days or longer may be needed. Antibiotics kill all the good and bad bacteria in your gut. Unfortunately, harmful bacteria grow quickly and thrive on sugars and starches. Your goal is to increase good bacteria first, which will result in a healthier balance and few digestive problems.
Although I am an advocate for natural remedies, our family has had too many serious strains of strep to consider avoiding antibiotics. However, I believe we have avoided spreading strep throat by taking precautions once we are exposed and before symptoms occur. In addition, being aware of the steps to take to bring our bellies back into balance after illness helps us to recover quickly with little long-term consequences.
I am collecting information regarding breastfeeding, digestive health in general and the CSID connection. To date, there is no documented research indicating that children with CSID present any symptoms prior to beginning solid foods. However, my son Parker DID show signs of failure to thrive, suffered from seizures and presented other symptoms related to CSID long before he had anything but breast milk.
Breastfeeding to strengthen digestive health
According to some studies on breast milk in general, the oligosaccharides found in human breast milk can reduce or prevent diarrhea. This information got me to thinking how my son, Parker, never had full-blown diarrhea, though his BMs were always oily, very smelly, and bulky compared to my other breastfed children. As many of you mothers out there know, breastfed infants rarely produce smelly BMs. Usually the “stink starts” when other food is introduced!
As a result, I would like to gather some more information in order to write a detailed article which touches on CSID, but reaches a broader audience of mothers who may not recognize this additional benefit to breastfeeding their child. Though CSID cannot be prevented by breastfeeding, my hunch is that it can definitely protect your child from developing other digestive diseases or infections due to an imbalanced gut. There is already proof that breastfeeding can have a “protective affect”on children susceptible to Celiac Disease.
Breastfeeding may have prevented my son from becoming severely dehydrated
When I think back to just before Parker was diagnosed with CSID, I recall the week before seeing his GI, he was very sick and lethargic. He was having several BMs, several in an hour at times, but nothing that appeared to be diarrhea. After receiving his diagnosis, I discovered that many children with CSID are hospitalized due to dehydration. Though Parker was hospitalized several times, the reason was always due to his seizures, not his digestive woes. Since I breastfed Parker until he was about 14 months old, adding only some solid food at nine months (most of which I removed from his diet since nearly everything seemed to exacerbate or increase his symptoms), I fully credit the benefits of breast milk as the sole reason he was never hospitalized for dehydration. However, breastfeeding may also have been the reason for his delayed diagnosis given it may have prevented the severe diarrhea that would have demanded the doctors attention!
Share your CSID and breastfeeding story connections
Of course, this theory cannot be proven for our particular circumstance. However, if we can band together and share our stories related to breastfeeding (or not) and try to find a connection, we may be able to help that child and mother facing undiagnosed digestive issues.
You will see two surveys posted on the left side of this blog. If you have a child with CSID or you suspect CSID or another digestive issue is the cause of your child’s health problems, please select the survey answers that best represent your situation. If you are interested in sharing your story in more detail, please respond by commenting on this post or by sending me an email.
Thank you so much for your support on this important topic!
Today marks the beginning of Parker’s revised (lower starch) diet plus 2ml of Sucraid with EVERY meal and snack for the next 2 months. He has an appointment with his new gastroenterologist at UCDavis on February 9th, and I want to have a consistent report of Parker’s diet, presentation of CSID symptoms(if any) and differences in his weight compared to his primary care physician appointment from November.
Aside from the rash (which is clearing up nicely after reducing starches, adding Sucraid to school meals, and adding a cup of dandelion root tea at bedtime) Parker has also had noticeable issues with BMs (traces on his underwear), and increased gas.
A brief overview to fill-in gaps in blog posts since 2009—
As previously posted, my son has experienced irritating red and scaly rashes around his mouth and on his cheeks since he was an infant. This is now recognized as one of many symptoms for CSID (see Symptoms for a complete list ). When Parker started kindergarten, he began to seem to tolerate small amounts of starch, beginning with sprouted grain bread.
IMPORTANT NOTE: At this point in Parker’s history, he had been consistently gaining 1 pound per month, and I had consulted his dietitian regarding the “risk” involved in attempting to add starches to his diet. It was extremely vital that he could “afford” to lose a few pounds if the added starches produced ill effects such as diarrhea. Please do not attempt to include foods aside from Group A with Sucraid as recommended until your child is symptom free AND gaining weight consistently, and that his or her diet is being monitored by their doctor and a dietitian. Parker was on Group A foods and Sucraid for 2 full years before I attempted to include grains or high-starch content foods.
Eventually, I added corn, potatoes, rice and an occasional flour-based food such as tortillas or hamburger buns. However, since I recognized most bread and grain products also contained added sugars, Parker began taking Sucraid (an enzyme designed specifically to assist in the digestion of sugars for those with CSID) more regularly.
I tend to avoid gluten-free foods as they are usually made with alternative flours that still contain high levels of starch. The occasional exception are single-grain cereals made with corn or rice and zero or few added sweeteners. We (myself and two children with CSID) also noticed a marked difference if we have gluten. As a result, our “grain” substitute of choice is almond flour. We also find that sprouted grain breads, even those containing wheat, do not aggravate. The theory on this is that once the grain sprouts, it realeses enzymes that in a sense “pre-digest” the starch.
Just as the baby plant finds these enzyme-activated simple molecules easier to digest, so too may some people. Proponents of sprouted grains claim that grains that have just begun sprouting – those that are straddling the line between a seed and a new plant, as shown here — offer all the goodness of whole grains, while being more readily digested…See Whole Grains Council for more on this topic.
By the time he started first grade, I was comfortable enough with his new starch-inclusive diet to allow him to eat school lunches. There were just a few “rules”– he would only choose ONE food containing starch, he was not allowed cookies or cakes (since Sucraid did not seem to be enough to prevent him having an upset stomach after eating these foods); no chocolate milk and if the menu only offered high starch content (such as a bean burrito, corn and a cinnamon roll)- he was to take a cold lunch to school. Outside of school and whenever I had access to the nutrition facts, I tried to make sure Parker’s total carbohydrate intake stayed under 25 grams per meal. This told me “in general” that he was not eating more than 25 grams of starch, though I realized carbohydrates according to the nutrition facts also included milk and fruit sugars.
In summary Parker was taking Sucraid with all processed foods and starches, most meals stayed around the 25 grams of carbs with the occasional exception of his favorite breakfast: Eggo waffles with peanut butter and syrup- which I estimated at closer to 50 grams carbs. This was his dad’s creation which in my opinion is no more nutritious than a jelly donut, but I allowed it so that Parker could eat alongside his brothers. Important to document nonetheless! Also, he wasn’t allowed additional starchy foods that day as he had “reached his limit” by my standards.
All this said, over the past two years, Parker HAS NOT had a single instance of developing a rash around his mouth until recently. The missing variable: Sucraid. For the first six weeks following our move to California, Parker ate most of the foods he had been eating without added Sucraid, including school lunches. Yes, this is my confession! Lack of resources did not allow me to provide Parker his own food, and since he had been without major symptoms for so long, I made an exception until we could work out getting his Sucraid at school and I was stocked up on ingredients so that I could start baking foods from my CSID recipes once again.
However, when Parker started showing signs of irritation around his mouth, I realized I could not make exceptions any longer. I knew this rash was a sign his digestive system was getting pushed to its limits– and one thing I learned long ago– I needed to listen to this non-verbal indication that whatever Parker had been eating was taxing him. I also noted that he seemed less focused and tired, and had a few instances of wetting the bed. It had been so long since I felt the need to document Parker’s symptoms, I failed to recognize these earlier warning signs.
Obviously, I only have my own experience with my own children as a reference point, but this is my conclusion: Sucraid is a vital part of Parker’s diet regimen. Though it only breaks down sugars, my hunch is that it possibly alleviates digestive stress which also allows Parker to tolerate maximum starch intake for his levels of available enzymes. Or perhaps, keeping his symptoms at bay for a long enough period of time simply allows his body to process more nutrients/eliminate more toxins than it could when he was sick and everything was irritated and inflamed from undigested carbohydrates and the harmful bacteria it produced.
Stay tuned for additional “Journaling Parker’s Progress” entries as we take on the new frontier of including an adequate Sucraid dosage plus a reduction in high-starch and processed foods.
January 22, 2010
PJ had a check up with his GI yesterday. He has gained 1 1/2 pounds and grown 1/2 inch since his last visit. This is great news since he has been eating starchy foods for the past few months! Apparently some Group B kids are able to take in more starchy foods and transition into Group C later in life. There is still a lot of research going on to fully understand this, but it may explain why there are so few kids who fall into Group B. I am thinking it may have something to do with the sensitivity in the digestive system, and perhaps after eating the correct foods, those enzymes are able to work more effectively. I also think that using Sucraid regularly may play a part.
Beyond provable theories, I must also share that in August, our church prayed for Parker’s healing and for a breakthrough for me as I was getting to a point of frustration and exhaustion when it came to the time and money spent on feeding our whole family. It was only after that prayer session that Parker was able to eat starchy foods without breaking out in a rash. So in part, I must credit his progess with Divine healing or at minimum, giving me the faith to feed Parker foods I would never, ever try to feed him! However, just as my son is a unique creation, and so many parts of his life involve miracles, each of your children are unique. There is no telling why some of them fare better than others, why there are so many different mutations and why all this makes it nearly impossible to set a standard for all those with CSID.
Wow! After getting frustrated about Parker’s reoccurring rash– I just came across a snippet from a book about detoxification that might explain what is going on. (The Detox Book, by Bruce Fife) Since Parker has always been one to develop rashes as an indication of something going wrong, this book says that this rash may be a sign his body is detoxing– which makes perfect sense considering the fact I have eliminating all that excess protein! This book also says not to increase medications or vitamins, but to let the body to its job and let the rash run its course.
I was going to cut out the Sucraid for a week anyhow, to see if that was causing the problem. But now I am going to cut it out to help his body continue to heal without having to process the Sucraid. I have actually increased his Sucraid during the past month, so this may be hindering him more than helping him.
Other “symptoms” of the body detoxing include cold symptoms, constipation, discharge from eyes, nose, or ears, moodiness, tiredness and more.
I know personally I panic whenever Parker shows signs of stress. But I need to remember if I am doing everything right, or mostly right and feeding him the best I can, nothing in excess and making sure he gets plenty of fluids and rest, that I can trust his body is doing what it needs to do to make him healthy.
After going all day yesterday without Sucraid, a lot of water, almond cookies and fruits and veggies, the hive-looking rash on his legs and arm have faded considerably and are now light pink and dry looking.
I plan to make sure he has plenty of vegetables today, his chlorophyll and distilled water. He will still take his Papaya Mint with his eggs, and his Magnesium Aspartate as recommended by his naturopath.
One thing we all need to remember as well is that when we use natural methods to help our children, it often takes more time to see improvement that it would with strong medications. But we need to trust that God designed our bodies to heal themselves if given proper time and not hindered by toxins. We need not rush the process to make ourselves feel better.
I have been trying to figure out what was causing Parker such high protein levels and through doing some research for another mom– I discovered that Parker was getting about 3TIMES TOO MUCH PROTEIN!!! Instead of getting 30 grams per day, he was getting closer to 100 grams with the chicken and hamburger patties.
Wow! This explains so much. His poor little body just couldn’t keep up with processing all of it.
He is now going on Magnesium Aspartate until his Urea levels drop. In the meantime, his protein will be coming from eggs and almond flour– in much smaller amounts. The magnesium will help his body eliminate the excess protein much faster. Once his level return to normal, I plan to add small portions of chicken, fish, and cottage cheese into his diet once or twice per week. But he will still need lemon on his meat to assist in the digestive process.
This is one of those Mommy Moments– where we think we are doing good or making up for the areas that are lacking and instead end up doing what is worst for our child! But I don’t feel bad– I am grateful that I was able to discover what I did wrong, learn from it and move on. I trust God is leading me and only allowing Parker’s body to suffer enough to speak to me until I change what needs changing for his good and the good of every child I am suppose to be helping through this experience.
AND I am very grateful that I found this out BEFORE publishing my book! I will take more caution in the recipes containing meat and other protein portions and label recipes so that you will know how much protein your child needs and won’t over do it like I did.
1) Right off, Parker is suffering from an itchy and irritated rash around his mouth. This happens on occasion, and I usually treat it with Aquaphor. Most of the time I trace back this skin irritation to a few dietary compromises the previous day. Though I am aware that skin conditions are a sign the internal organs of the body are stressed—I admit I made light of his face rashes as a temporary set back and a quick fix.
2) The plan for now—NO MEATS, POULTRY, FISH or CHEESE until is urea levels decrease significantly. This is going to present a challenge, but thankfully he can eat all the eggs he wants. In addition to eliminating these proteins, we are also adding the following supplements to help him recover as quickly as possible. The stress of his appendix are a concern for problems later in life and since he is just shy of 5 years old, we need to determine safe levels of protein so he doesn’t keep getting to these high levels of toxicity.
Addition of Slippery Elm Bark Powder.
I have purchased a large bag of powder and will be making capsules for him to swallow with his other supplements. I will start with 2 capsules per meal.
According to the Prescription for Nutritional Healing by Phyllis a. Balch, CNC , slippery elm “soothes inflamed mucous membranes of the bowel, stomach and urinary tract…Beneficial for Crohn’s disease, ulcerative colitis, diverticulosis, diverticulitis, and gastritis.”
Addition of Magnesium Phosphorics 6X (Hylands)
He has already taken 2 doses of 6 tablets each. His doctor ensures me he can have as many of these as he wants to. I plan at the least giving him 6 per meal for the next several weeks.
Increase in his amounts of Leafy Greens in soups and eggs.
His doctor reminded me that because he lacks enzymes and has a higher risk for stress in his digestive tract, that most if not all of his vegetables should be steamed. This keeps his body from working so hard to break down the food and retrieve vital nutrients such as calcium and magnesium.
Activation of Both Chlorophyll and Calcium Gluconate Using the Frequency Device
In an effort to target harmful substances in his body and reduce stress on organs. He will continue to take 2 teaspoons of chlorophyll in water with lemon after each meal. I will capsule the calcium gluconate powder and give him 3 with each meal as well.
Definitions of testing terms:
*THERMOGRAPHY-(Computerized Regulation Thermography) This particular device evaluates your body functions by a direct temperature measurement probe instead of measuring thermal radiation. The result is a scanning method that is much more precise than any other thermographic system. It maps out the complete autonomic nervous system as it projects to and from each organ or tissue. With this form of thermography, we can finally see what the body is doing long before it becomes dysfunctional enough to create an irreversible problem. This is not diagnosing disease, but rather identifying the patterns that lead to disease, so that these patterns can be successfully treated. For more information click HERE.
*CHEMISTRY TEST– Through samples of urine and saliva taken 2 hours after eating, this combination of tests determine levels of sugar, urine pH, saliva pH, body salts, albumin, and ureas. For more detail on this test click HERE.
Back in 2003, I was in the children’s hospital ward, shortly after my fourth child had kidney surgery. At the time, I was pregnant with Parker, and had no clue as to the trials and triumphs his life would bring to our family and countless strangers. As I watched my one-year-old cry out in pain from the slightest movement, unable to touch him and comfort him in his time of need, I heard God’s voice say, “I’m preparing you for something else.”
Though at the time, I didn’t understand the implication of those words, I held onto them as a promise in the months to come.
Rather than frustrate more mothers like myself, I want to give hope. I want to encourage each parent, doctor or dietician to use what I post here as a starting point: A Place to Start (my current book project based on this blog). For me, having some sense of the possibilities, and understanding what was happening inside my little boy’s body as a result of undigested food, made it far easier to persevere into the unknown.
Today, Parker is a pure blessing to everyone he encounters! He is loving, kind and smarter than a whip! I have no doubt his suffering early in life was always meant to help others. I encounter people on a daily basis who want to know more about Parker’s diet (now my daughter’s and mine as well), and how what I have learned can help others facing digestive problems.
I pray that between all the science, recipes, and stories that those who read this will also read between the lines and be inspired by the power my faith has played in the compilation of my on going CSID project.
May God bless every mother with a peace beyond understanding as she attempts to do all she can to bring her child to a state of complete health and wellness!