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.

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10 thoughts on “Collecting Parent and Child CSID Information

  1. Roanne King says:

    Andra,

    Thank you for posting. I am not sure how much background you have on CSID, but Group A does not tolerate starch. If your daughter can have starch, she is probably Group B or C. Sucraid does not assist with starch digestion. It is only for sugar. This is a common misunderstanding. My son had to eat Group A foods for about two years before he was able to tolerate some starches.

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  2. andtob says:

    Andra, California
    Lily, age 12 months when diagnosed, today 2 years old. Birthday 11/9/2009.
    Group A
    Uses Sucraid when she consumes anything with sugar or starch or if I didn't personally make it and know what is in it.
    No other dietary limitations
    Lily loves spaghetti, which she had just recently been able to tolerate with Sucraid!

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  3. Heather C says:

    Heather, New York
    My son Cameron – age 10 months – just diagnosed 2/17/12- symptoms started at two days old.
    DOB 4/12/11
    Even though his enzyme levels came back with regular Lactase, he cannot tolerate it. We are pretty sure he is a mutation “D”. He can currently only eat scrambled egg mixed with fructose and broiled chicken breast also mixed with fructose and Elecare formula. We have just applied to the Sucraid website so hopefully he will have access soon. He takes two probiatics in his first bottle of the day.

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  4. Roanne King says:

    Thanks Kelli and Paula. I find it interesting that very few parents know what Group their child falls under. I will look into this more to see if we can't figure out a way to team with doctors and dieticians to develop an easy way to determine this factor. It makes a huge difference as to how much (if any) starch can be tolerable as well as indicates how great the need is for Sucraid.

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  5. SugarFreeHogans says:

    Paula Hogan Melbourne Australia.
    My eldest daughter Lauryn was diagnosed at age 6yrs 8mths and her current age is 11 (18 May 2000).
    Group she falls under is unknown (however re-tested Jan 2011 and sucrase & isomaltase enzymes were worse). Lauryn's lactase enzyme is perfectly normal which was the only good news.
    Sucraid is not available so its restricted diet only.
    No other dietary limitations other than CSID
    Favourite foods are milk, vita brits (weetbix) pancakes, soup, lasagna and others but these were originally non existent to start with. Lauryn initially lived on protein until we could work out foods that she could ingest as no medication was available.

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  6. kelli says:

    Ashtyn at 7mo age 3 now her birthday is 4/18/08 we use Sucraid with every meal or snack. She is very limited with starch and we are almost always sucrose free. We have just switched her from elacare to lactase free milk whole cows milk seems to give her a rash have not figured that one out yet since she can Handel other dairy. Also have found that dextrose and fruitose seem to upset her tummy as well. Her group is unknown

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  7. Roanne King says:

    Thanks Kim! I am working on more eggless recipes. I did not realize how many of my recipes included eggs until I started trying to locate the ones that did not! Hang in there 🙂 What else was in the bread?

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  8. Kim Schultz says:

    Kim, Ohio
    Gavin, at 16 months, age 17 months today. Birthday 8/25/10.
    Unknown group – new to diagnosis. In process of being referred to another children's hospital for 2nd opinion.
    No access – doctor never prescribed or mentioned.
    Lactose intolerant, soy intolerant, gluten free and as of today, no egg (vomited twice in last two days after eating eggs – cooked in bread)
    Right now, he isn't eating much of anything. Elecare formula is his meal of choice. He refuses most food at this point.

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