Second Edition of A Place to Start Without Sugar or Starch

A Place to Start Without Sugar or StarchI’ve finally published the second edition of my CSID Journey and Diet Guide on Amazon!

For those of you who purchased a copy of the first book, please know very little is changed besides the cover, a few minor wording details, and an update on our family’s progress. It’s also a lot less expensive than the First Edition, since I was able to use Create Space on Amazon and self-publishing has come a long way in a few short years.

I’d love to hear your comments and suggestions on this revised edition and look forward to your Reviews so that parents looking for a resource like this can trust it is what they need and want!

Read more on my BOOK INFO page.

I’m sorry that I wasn’t able to do a more thorough revamp, but I know it’s important to offer something tangible at this point. If you are looking for recipes after you’ve determined appropriate and tolerable foods, I highly recommend (and have several times in other posts), Practical Paleo and Against All Grain books. I envision you using A Place to Start Without Sugar or Starch alongside these cookbooks to tailor recipes and meal plans to your family’s individual needs.

I wish you wellness and happiness in the upcoming Holiday Season!

The Summer Slide – When Managing Celiac, CSID, and Allergies Goes Awry

With resources running low in recent months, it’s been difficult to feed my family the ideal diet. Summertime makes it all that much harder with teens coming and going and making their own choices regarding what to eat and drink when they are not home.

One thing that has made it difficult to keep taboo foods out of the house is that my oldest son, Dawson, is scheduled for a small bowel biopsy next week, and has doctor’s orders to eat gluten every day in order to confirm his Celiac diagnosis.

On the other hand, Parker (my youngest son and the reason I started this blog in the first place) had repeated food allergy tests done at the start of summer and is no longer “allergic” to wheat, eggs, or milk. Of course at 12 years old, he took that as a green light to eat all the wheat and milk he wants. When his GI Dr. said he didn’t see a problem with it due to the fact Parker has gained 10 pounds in the last year, I didn’t have a lot of ground to stand on to insist on continuing his modified diet.

So, this summer I’ve allowed our family to consume many of the foods I’d normally avoid and never allow in my home.

For those that don’t live with food allergies or sensitivities, this may seem like a blessing. But when as a whole, I begin to see signs and symptoms that may indicate distress among myself and my kids, I know it’s due to the over-consumption of processed foods.

Parker’s eczema has returned and although I’d hoped he’d be rash free on his first day of 7th grade, we haven’t been able to rid him of a few patches. Now, granted, he’s been swimming a lot and spending time outside in public areas with tons of grass, trees, and dogs around (all of which he is still allergic to). But he’s also been eating a lot of refined carbohydrates and drinking beverages with high-fructose corn syrup.

I could avoid sharing these details with the world, but the struggle is real. It’s not easy sticking to the ideal diet of select carbohydrates, clean meats, and plenty of fresh vegetables. Especially when my older teenage boys both end up with their first jobs at fast-food restaurants!

Back-to-School Means Back to Healthy!

So what is a mom to do? First, getting my husband to support the transition back to a Paleo-based diet at home is crucial. Since he experienced feeling better on a gluten-free diet last winter, this shouldn’t be too hard.

Second, between my own gluten sensitivity and our oldest son most likely having Celiac, we really need to remove gluten from the house to avoid cross-contamination.

This only leaves our middle son a “victim” due to his ability to eat anything. Yet, I believe he will also feel better, have more control over his hyperactive personality and do better in school.

However, to avoid burn out on my part, this is going to be a transition. School starts tomorrow so my plan is for the month of September, to focus on breakfast and dinner at home and allow the two boys without Celiac to eat school lunches. As fall approaches, I will assess the results and go from there.

Time to dust off my Paleo cook books and make a meal plan for the week.

Questions for you …

How hard is it for you to stick with a strict diet for yourself or your child(children) with dietary restrictions?

Do you find the medical community in support of extreme diet adjustments or are they indifferent to anything not backed by extensive research?

If you have a larger family or teens, I’d love to know of the ways you’ve been successful in feeding your family and encouraging healthy choices when not at home.

QOL Responds to Sucraid Shortage – Time Sensitive!

*Please note this is time sensitive information. Updates will be posted as they are available.

Sucraid Shortage and QOL Response Summary

SUCRAID® SHORTAGE UPDATE

Conference Call with QOL Medical CEO Derick Cooper on April 13, 2016 at 2 p.m. (EST)

For current information on Sucraid and QOL updates, visit the following websites:

The following are highlights and follow-up on Q&A from the Conference Call

The listed questions were provided to Mr. Cooper in advance. Some were answered in conjunction with others during the conference call so not every question is answered precisely, but is addressed at one point or another. I’ve noted a reference to the answer for another question when it applies.

(Note: I’ve done my best to present this information in an objective manner and to state the information provided by Mr. Cooper as accurately as possible for informational purposes only.)

  1. Could QOL Medical clarify the reason for the shortage? Is it related to a combination of factors or primarily one?
    Information known prior to the conference:
    a) Ingredient related: The FDA website statement mentions “shortage related to unavailable approved active pharmaceutical ingredient (API) from a supplier due to requirements related to complying with good manufacturing process.”
    b) New facility and production related: Letter by QOL Medical CEO March 2016 mentions the construction of an entire new facility and transfer of production to entirely new building.
    ANSWER: Mr. Cooper further explained the change in facilities was to transfer the production of the primary ingredient in Sucraid – sacrosidase – from a food-grade manufacturing facility to a pharmaceutical-grade facility per FDA request.
  2. Reason behind the decision to change production which resulted in the shortage: Sucraid has been produced for years and used by patients for 17+ years. If the formulation hasn’t changed at all, what happened now, to get us to where we are now?
    ANSWER: Sacrosidase originally made in a food-grade facility that no longer met pharmaceutical standards. QOL has rebuilt a new facility to meet all current standards. They are working on details for final approval to begin manufacturing with FDA. Although the production of the ingredient met FDA requirements prior to this change, QOL is now  “migrating manufacturing to meet modern standards”. Mr. Cooper mentioned that there are “items” to finalize with FDA within the week,  but did not mention what those details were.
    According to Mr. Cooper, the  requirements to manufacture pharmaceutical-grade products involve two steps: 1) Tests of ingredient itself after processing to ensure that the product still effective, and no contaminants were introduced  during the process. 2) Manufacturing process itself is very complicated. Mr. Cooper did his best to describe the general steps involved as an example to demonstrate the details and steps involved in the migration. They start with a lot of yeast, then extract the sacrosidase from the yeast and filter multiple times to ensure only sacrosidase is left in a pure form. The filter must be checked by outside vendor who has valid methods for checking filter. Each part of this process needs to be documented and submitted to the FDA. QOL has made valiant efforts to follow these procedures and paperwork requirements the entire time. FDA regulations are ever-changing and do not always apply to each specific product produced. These guidelines are subject to interpretation, and QOL has done their best to interpret the guidelines according to the specific process and manufacturing of sacrosidase (Sucraid). The FDA and QOL are working together to expedite the process as much as possible.
  3. What does QOL Medical see as the current status of the shortage? Can you expand on the below information?
    Information known prior to the conference:
    a) Letter by QOL Medical CEO March 2016 mentions “we have built this new facility, transferred the manufacturing process, begun production, and filed the necessary regulatory application with the FDA for approval. We have produced Sucraid® in the new facility and are awaiting final regulatory approvals for distribution.”
    b) Calls to Sucraid Assist / One Patient Services mentioned new facility has already produced Sucraid but that those lots have not been FDA approved.
    c) Accredo representative has stated the shortage prolongation is due to the FDA not approving an ingredient in Sucraid.
    To clarify, it was the production of the main ingredient, sacrosidase within a food-grade facility the FDA decided needed to take place in a pharmaceutical-grade facility which promoted the changes. QOL did not anticipate the building and transfer to new facilities taking so long, which is the assumed reason they did not manufacture enough Sucraid prior to the transfer to meet the demand. This is my interpretation of what seemed to be implied by Mr. Cooper.
  4. FDA states they are awaiting information from QOL in order to approve Sucraid lots. What are they waiting for? As of today, all paperwork has been turned in and inspection of facility is complete. There are a few minor details (not specified by Derek) that will be address tomorrow (April 14, 2016)  in a meeting between QOL and FDA for final resolution.
    ANSWER: At the time of the phone conference, FDA had completed a full inspection of the new facility and QOL had completed and submitted all required paperwork.
  5. Does QOL anticipate a foreseeable end date to shortage?
    ANSWER: Though this could not be answered precisely, Mr. Cooper said it could take up to 2-3 months before Sucraid is available again, but he was hopeful it would be sooner.
  6. Can QOL Medical provide an estimated timeline for a resolution of the shortage in terms of weeks, months or longer? Patients would like to know if they should plan to be without Sucraid for a short, medium or long period of time. They are cognizant any specific timeline is unlikely as it will invariably change.
    See ANSWER TO #5.
  7. How can the most vulnerable patients be prioritized to receive any available, or first available, Sucraid? For the families who have quit using Sucraid to make it more available to more at risk patients, how will it be communicated to us that there is enough to begin using it again?
    There are some units left they are saving for these patients according to dire need, however they will not use this supply if they are able to begin manufacturing a new batch soon.
  8. Does QOL have any data about other medications that experienced a similar facility approval related shortage situation? If so, what was the timeframe for those similar cases to be resolved? When it is released, it will be available within a week of FDA approval. NA
  9. Can QOL confirm that all Sucraid that has been currently released is only done with full FDA approval?
    Information known prior to the conference:
    a) That there are NO unapproved lots in circulation.
    b) That Sucraid lots requiring an informed consent listed additional possible risks but were still approved as safe to be released by the FDA.
    c) That current Sucraid is safe to use and that all possible risks have been fully disclosed in writing to patients. That neither QOL nor the FDA has hidden any important information from them.
    d) FDA stated this clearly in the teleconference, but the point seems to have still been confused by other external statements on the call and noise distraction.
    Details related to this question were not addressed specifically enough for me to confirm or deny the details.
  10. Even though it was FDA approved as safe to use with informed consent, What were the specific contaminants that were identified or posed as possible risks?
    ANSWER: I asked Mr. Cooper to clarify this once the call was opened to questions. If I understood him correctly, it was the “manufacturing of sacrosidase” that no longer met FDA requirements. There was NOT any contamination of the ingredient.

It’s possible the FDA was concerned the food-grade facility could lead to a risk which is why they prompted the move to new pharmaceutical grade facilities, but this inference was not made by Mr. Cooper himself.

ADDITIONAL DETAILS SHARED DURING THE CALL

To clarify the frustration of one parent on why they were not informed of the possible shortage in advance, Mr. Cooper explained that QOL doesn’t have the ability to directly contact patients due to HIPPA.

Possible Solutions to Communicating with Parents and Patients in the future  Not Explored during the call: Communicating in general with pharmacies, doctors, or insurance companies OR placing a notice in the packaging of Sucraid when this process started, letting patients know that a shortage was possible.

In answer to another caller’s question, Mr. Cooper clarified that this transfer to new facilities would not impact the cost of Sucraid or change any current programs designed to assist families in need.

Mr. Cooper ended the call by stating that QOL would love to hear stories about how Sucraid has made a difference. Again, they are doing all they can to expedite this approval process as soon as possible, and they are deeply sorry for the issues this shortage has caused to families.

2nd Edition of A Place to Start Without Sugar or Starch in Progress

2nd Edition of CSID Book as a Resource not a Cookbook

I also understand many of those who come across this site are looking for a resource that they can literally put their hands on. Those who had the opportunity to purchase my first edition while it was still in print appreciated the option to bring the book with them to doctor’s appointments or to the grocery store and to be able to mark pages and make their own notes.

Due to the constant changes and research regarding CSID (now called GSID in some circles), creating a 2nd Edition that meets the needs of a variety of tolerance levels is important to me. I will no longer be categorizing it as a “cookbook” but as a resource guide, where I share my journey in storytelling fashion and then offer resources at the end. Yes, it will include some basic recipes (or recipe concepts), food lists, and even menus – but all with the understanding that they are a starting point and should be adjusted according to individual needs, resources, and tolerance levels.

More CSID Posts to Come!

As I am still working on revising and reviewing all the current posts with this new blog format (I also transferred from Blogger to WordPress) – I have a goal of publishing at least 1 new post per week until the 2nd Edition is complete. I welcome your comments and questions as we create a community here of parents and others facing the challenges of managing CSID whether you have sufficient resources or not.

In addition, I want you to be able to find what you are looking for when you come here. If you had visited the old site and are unable to locate a specific page or post, please let me know. If you are a first-time visitor, try exploring the tabs at the top and their sub-categories to see if you can find answers there first.

In the meantime, hang in there and do the best you can one day at a time! If I’ve learned one thing in this CSID journey the past 10 years it is that the limitations actually point us toward consuming some of the healthiest foods on the planet. We are not deprived, but devoid of taking in an excess of those foods that science has proven are not really healthy for anyone.

CSID Cookie Recipe for Nursing Moms

I just had to share this recipe that came through my work in-box. I have not tried it myself, so please post comments regarding any adjustments or opinions for how this works for your family. My comments are shown between { … }

Gluten Free Lactation Cookie
Created by Jennifer at HybridRastaMama.com

{This recipe if for nursing mothers to consume, not for toddlers or children with CSID, unless you have tested individual ingredients and understand your child’s tolerance levels.}

Ingredients
·         1 tablespoons fenugreek to make 4 T brewed fenugreek tea
·         2 tablespoons flaxseed meal
·         1 cup Kelapo Coconut Oil, melted
·         3/4 cup raw honey
·         2 eggs
·         3 teaspoons vanilla
·         3/4 cup peanut butter or other nut/seed butter (I really like sunflower seed butter in these) {unsweetened almond butter}
·         1/2 cup coconut flour, sifted OR 2 cups gluten free all-purpose flour
·         4 tablespoons nutritional yeast
·         2 teaspoons aluminum free baking powder
·         1 teaspoon sea salt
·         3 1/2 cups gluten free oats {if starch is an issue, try 3 cups almond flour}
·         1/2 – 3/4 cup raisins or dried cranberries (optional)
·         1/2 – 3/4 cup chocolate chips (optional) {omit with first batch to test tolerance without}

Directions
1.      Preheat oven to 325 degrees

2.      Brew fenugreek in 8 ounces of hot water until grains are soft.

3.      Mix flaxseed and 4 tablespoons fenugreek tea and let sit for 3-5 minutes. DO NOT DISCARD THE GRAINS!

4.      Beat coconut oil and honey.

5.      Add eggs and vanilla and mix well.

6.      Fold in the peanut butter/nut or seed butter until well combined.

7.      Add flaxseed mix and fenugreek grains and mix well.

8.      Add flour, nutritional yeast, baking powder, and salt. Mix and if using coconut flour see ingredient notes below.*

9.      Mix in oats until well combined.

10.    If using raisins or cranberries and/or chocolate chips, slowly fold these in.

11.    Round off a large tablespoon of dough and place on cookie sheet. Press it down slightly.

12.    Bake for 15 minutes then check cookies. Continue baking (checking every 3 minutes) until the outside is a bit brown with crispy edges. The inside should still be slightly moist and soft.

13.    Let cool on cookie sheet for a few minutes and transfer to a cooling rack.

Ingredient Notes
1. Coconut flour has the tendency to soak up a ton of liquid. Every brand varies. If your batter seems dry at this point, add in a tablespoon at a time of coconut milk or your other favorite milk until the consistency is more doughy and moist. If you overdo it, add in sifted coconut flour in 2 teaspoon increments.

2. This batter is really sticky! Do not try to form dough balls with your hands. It will be a mess. A yummy mess at least! I like to grease my spoon with a little coconut oil. It helps the dough slide right off!

3. This recipe is not incredibly sweet although if you use the dried fruit or chocolate chips it does sweeten up! If you prefer a really sweet cookie, add some additional honey and/or vanilla. For every 1/4 cup of honey you add, you will need to increase the coconut flour by 2 tablespoons and the oats by 2 tablespoons.

4. The reason that honey is used and not sugar is because honey has tremendous health properties which a mother can pass on to her breastfeeding infant. Unless you are allergic to honey, please do not substitute the honey with sugar.

School Healthcare Plan Worksheets

A few months ago I posted a picture of the school health care plan my son’s nurse provided to manage his diet and Sucraid intake at school. I have finally created a fill-in worksheet for you to download and print for use at your child’s school.

Below you will see links to each of 4 worksheets.

The heading for Group A is LIGHT RED. The worksheets for Group A should be used for children not able to tolerate starch at this time.

The heading for Group C is TEAL. The worksheets for Group C should be used for children who are able to tolerate some starch at this time.

If you are able to store and have your child take Sucraid at school, choose the worksheet labeled WITH SUCRAID.

If you are unable to store or have your child use Sucraid at school, choose the worksheet labeled
NO SUCRAID.

School Healthcare Plan Group A WITH SUCRAID

School Healthcare Plan Group A NO SUCRAID

School Healthcare Plan Group C NO SUCRAID

School Healthcare Plan Group C WITH SUCRAID

For more information about Sucraid, dosing and its benefits for those with CSID, click HERE.

All of these worksheets will be included in the print version of my CSID book, A Place to Start once it is published.

If there is anything you would like me to change on any of these worksheets, please let me know right away. This includes any spelling or grammatical errors you may notice.

Thanks!

Breastfeeding and CSID Research and Surveys

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!

Recipe Tips, Tricks and Substitutes

“Mom, do you like cooking?” My daughter Tayler asked one afternoon as I began pulling out ingredients for a new recipe back in 2008.

“Not really. It’s frustrating to spend time and energy cooking something everyone just complains about.”

Less than two weeks later, my older daughter, Elora’s test results came back. She also had CSID in addition her five-year-old brother.

I took a deep breath, pushing back tears as my mind swarmed with the many struggles I would surely face. Then I had to laugh, recalling Tayler’s question. Whether I liked cooking or not, my family needed to learn to eat differently. I needed to learn to cook the foods that were best for all of us. Elora would be going off to college before I could blink. And all of our kids could potentially have children with CSID one day. Creating good cooking and eating habits would be essential to their future health and the future health of my grandchildren.

I decided creating a cookbook that my daughter could bring with her to college would also become valuable to every family facing the many challenges involved in the CSID diet. During the past several years, that effort to share my successes as well as my failures has had many ups and downs.

No, I don’t like cooking or baking. With the exception of  doing so with my sisters and mother during the holidays, cooking does not bring me much joy. However, when my little Parker comes up to me and reaches up to wrap his tiny arms around my waist after finishing off a whole plate filled with my latest sugarless, starch-less meal, I know every bit of my efforts have been worth it!

Here is a quick reference list to some things I have found helpful while adjusting to cooking the CSID way. Hopefully these tips will give you needed motivation or help you get through one more day of experimental cooking. Maybe you will also reap a harvest of smiles around the table and requests for a second helping…

1) Take a deep breath and focus on what you can do today. With five children, a self-employed husband and my over-achieving personality, I have had to face the very real fact that I cannot do it all. Sometimes I have more money than time. Other days I have more time than money. I don’t always plan ahead and often I make compromises as a result. However, I take comfort in each day as a new beginning.

2) Make small goals and plan when you can. If you are just getting started cooking CSID-friendly foods, decide which meals and recipes are most important. If your child is suffering from major symptoms, take it one day at a time. Replace one meal at a time. Begin with ingredient substitutes (see below), then move onto entire meals. Remove “problem” foods from your child’s reach or from your house completely.

3) Get the whole family involved. Talk to your spouse, grandparents, and siblings about how important diet changes are to your child. Find the recipes that more closely resemble what your family normally eats. Perhaps you can try desserts first. Recruit older children to help you make a salad, push the button on the blender when making smoothies, or scoop the muffin batter into the muffin tins. Share recipes with extended family or bring enough to share at the next family gathering.

4) Batch bake to save both time and money. Some ingredients, such as almond flour, can be very expensive if purchased in small quantities. Now that I have my list of “best recipes” (those I know my kids will eat and that are great for on the go) I know that ordering 5 or even 10 pounds of almond flour will ensure I have plenty on hand to batch bake. Other ingredients that are best to buy in bulk include eggs, butter, honey, fructose and unsweetened coconut. Usually I set aside one morning during the week and plan to batch bake several recipes at once. This saves time since many of the ingredients are similar. The amount you bake will depend on how much storage space you have in your refrigerator or freezer. The recipes I typically batch bake are coconut macaroons, almond flour muffins or cookies, coconut flour crepes, knox blox and lima bean soup. It is wonderful to have so many CSID-friendly foods on hand. I use them for a quick breakfast, school lunches, after-school snacks or as dessert leverage (yes, bribery!) when experimenting with a new dinner recipe.

5) Recipe tricks and tips. Every time I use a recipe, I discover something new. Sometimes I do not have all the ingredients I need. Other times I realize my directions needs tweaking. Some recent examples include…

  •  Omitting the paper cups for muffin or macaroon recipes. Almond flour sticks worse than any other flour! The last few times I have made muffins, I have generously greased the muffin tins with butter or coconut oil, and left out the muffin cups. A silicone or rubber spatula works great to remove the muffins as well. Cool for just a few minutes, then remove muffins to finish cooling on a rack.
  • Medium-High heat and less batter for coconut flour crepes. Make sure the pan is hot, butter is melted and that you use just enough batter to cover the pan. The original recipe calls for 1/4 cup of batter per crepe, when in reality 2 tablespoons is more accurate. Make sure the crepe cooks to the point of browning, and flip by lifting up just the edge of the crepe. Don’t try to get the spatula under the entire crepe (as you would with a pancake) or the crepe can break.
  • Cook extra chicken, turkey breast or vegetables. Cube, crumble and store for the next day’s meals. Cubed chicken can be added to salads for lunch. Cooked ground turkey and chopped veggies such as broccoli can be added to scrambled eggs for breakfast.

6) Ingredient Substitutes. Do you ever come across a recipe in a magazine that looks great, but your not sure how to substitute ingredients to make the recipe acceptable for the CSID diet? Most of my recipes were inspired by traditional recipes. Some of these exchanges are basic, while others may not be so obvious.

  • Use sea salt instead of regular salt. Even though salt of any kind can be digested, the benefits of sea salt are becoming so mainstream, that many packaged foods now boast it as their salt of choice. After using only sea salt for the past five or more years, I can now tell a huge difference in taste. Sea salt adds an authentic flavor and is void of the chemical side affects processed salt can create.
  • Exchange equal amounts of crystalline fructose for sugar.
  • White cooked lima beans replace other beans, pasta or rice. I usually purchase several cans of lima beans called “butter beans”. Be careful to read ingredient lists so that you know no sugar or starches are added. To remove added salt, drain beans and place in a small bowl with enough distilled water to cover beans. Soak for 15 minutes, and rinse in a collander. Then add sea salt to taste after warming. These beans also make a great thickening substitute for cream sauces or soups that normally call for white flour or cornstarch. Simply blend until smooth.
  • Almond flour for white flour. Since almond flour has a very different composition than white flour, a direct exchange for a traditional recipe will not work. Generally, almond flour bakes like quick bread. The best alternative I have found is to take one of my almond flour recipes, such as the banana-nut muffins and swap out the “flavor” ingredients. Exchange mashed banana and walnuts for shredded carrots (carrot cake), shredded apples (apple muffins), shredded zucchini, blueberries or strawberries, or grated cheese for a variety of flavors. Almond flour mixed with melted butter is also a great crust substitute for either pizzas or pies.
  • Spaghetti squash or cauliflower as a starch substitute. Spaghetti squash can be used for a pasta, as a dessert with honey and butter, added to muffins, soups and more. I use cauliflower as a crust substitute (see Hawaiian Pizza), fake mashed potatoes, instead of pasta, flaked with butter instead of rice and more.

Do you have recipe tips, tricks and substitutes to share? Have you come up with any of your own recipe ideas using these ideas or others? I would love your comments!

Collecting Parent and Child CSID Information

In recent weeks, I have been contacted by several parents regarding diet suggestions for their specific child. Some of you I have been corresponding with for some time. Others are new to our CSID conversation. I am writing this post in hopes you will all respond for two purposes.

     To help me out in remembering specifics about you and your child.

    To help other parents see they are not alone in their CSID journey.

What I need is for you to respond as a comment to this post and leave the following information:

1) Your first name, the state or country where you live.

2) Your child’s first name, their age when diagnosed, their current age and birthday.

3) The Group your child falls under. If unknown, just type “group unknown”

4) If your child uses or has access to Sucraid.(Yes, uses Sucraid or No access to Sucraid). If no access, please specify why (no insurance, doctor has not prescribed, etc.)

5) Any other dietary limitations your child currently has (no eggs, dairy, etc.)

6) Finally, you and your child’s favorite recipe and why.

Here is mine to get you started:

Roanne, California
Parker, age 18 months at diagnosis, age 7 today. Birthday 03/04/04.
Elora, age 15 at diagnosis, age 18 today. Birthday 011/23/93.
Both children Group B/C (Parker was on Group A foods only for first  2 years after diagnosis)
Both children use Sucraid with every meal and snack when possible.
No other dietary limitations. (Although Parker went of dairy during peak malabsorption periods.)
Parker loves coconut flour crepes and knox blox because they taste like dessert.
I love smoothies since they are easy and filling!

I would also like to remind you that all parents who assist me with this information and other feedback will qualify for a discount once A Place to Start: CSID Recipes and More is published in paperback form. I am looking into ways to provide the ebook copy at little or no charge as well, but at this time I am unable to do so.

New Year Goals, Book Update, Sharing Your Story

I just wanted to drop a quick note to everyone to let you know I plan to continue posting and revising recipes beginning January 3rd. The publishing of the CSID ebook is just the beginning of perfecting this project in order to make it suitable for traditional publication. In the meantime, I have plans to do further research on the nutritional benefits of the CSID diet, as the more I learn, the more I realize that as limited as the CSID diet is, it still allows for some of the healthiest foods on the planet!

On this note, I am in search of a certified nutritionist who is willing to donate his or her time to assisting me in developing a menu which offers balanced nutritional benefits in addition to easy digestion. All I have gleaned so far has been the result of reading many books on general digestive health, or second hand knowledge that I try my best to translate into simple terms. My ultimate goal is to create a comprehensive, yet easy to understand and accurate guide for managing CSID through diet, enzyme therapy and digestive support supplementation.

In addition, I am going to rework the many topics I reference in the ebook as articles I am planning on pitching to various health magazines. Perhaps one article will spark the interest of a professional in the field of digestive health as well as help in spreading awareness about CSID. I would also love to profile several CSID stories in a separate article, similar to a “mystery diagnosis” anthology of sorts. As many of you know, writing is my forte and I wish to use it to tell your stories as well! Digestive health aside, I know there are many courageous parents out there who have pressed on in order to discover the answer to their child’s health woes. In turn, your story has the potential to encourage other parents. I am simply the vessel offering to connect your story with theirs!

With that, I send blessings and encouragement to all of you in the New Year! May we all set goals of health, peace and patience!