Starting from scratch

30 Jun

I had already started a post for the day (all about the fun and games of Jade touching the hot just-turned-off front element of the stove) but another topic has invaded my life and has left me reeling just a little.

About a month ago, we took Jade to see a doctor of internal medicine and hematology who specializes in allergies.  For various reasons, I suspected that she might have some food sensitivities, and figuring there is a possible link between these and her seizures (at the very least, they would a stress on her body) we decided allergy testing was a good idea.

Long story short, it turns out that Jade is allergic to all dairy products (including goat’s milk, which is often less allergenic for those who are allergic to cow’s milk), as well as egg white and beef.  Dr. Kaegi recommended that we eliminate these foods from her diet for at least a year.

Although I suspected a sensitivity to milk, the eggs and beef surprised me.  And I am reeling (just a little) because every single one of Jade’s keto recipes contains either dairy or eggs.  Every single one.

It’s going to take me a few days to rewrite all Jade’s recipes; I’d built up a repertoire of almost a hundred.  I’m also going to have to do some research into soy products available here.

I know there have been other keto families who have successfully dealt with food allergies, so I know it can be done, but, man, I have so much other stuff to do right now, too.  I’m fighting the urge to just lie down and whimper for a while.

Hold my hand?

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34 Responses to “Starting from scratch”

  1. Captain Momma June 30, 2009 at 7:40 pm #

    Oh Fawn, I am so sorry 😦 I’ll lie down and whimper with you! Is there egg substitute? Someone needs to invent a keto calculator that does all the work for you :S

    Will be praying that it would be easy and go well and you would have the help you need while you are doing it.

    Hugs,

    Kelli

  2. Kara June 30, 2009 at 9:40 pm #

    My brain is reeling from this! Are you finding lots of resources to help you make up the new meals?

    And I am trying to stretch my hand the 370km to reach you!

    • fawnahareo July 1, 2009 at 7:27 pm #

      I can feel it!

      I haven’t really gone looking for resources yet. I know I can get some suggestions from the online support group, but I think I can come up with some things myself, and I’m focussing on that first, since there’s a time crunch. We’re in-between dieticians at the moment; the previous awesome dietician went on mat leave. The one who is filling in at the moment is just part-time and I have to get meals recaculated tonight so she can verify them tomorrow.

  3. allmycke June 30, 2009 at 10:07 pm #

    Oh my! I really don’t know what to say, except that I – like everyone else, wish there was a way to lighten the load you are carrying.

    • fawnahareo July 1, 2009 at 7:29 pm #

      Just having you all here is a help, truly.

  4. Nai-Nai July 1, 2009 at 4:34 am #

    I am sorry Fawn, Her allergies came from me. If I put something in the milk I drink – doctor’s suggestion or I cook it, I have no problem. it is better contact the doctor in Vancouver or dietician. The fat is Jade need it for her diet. It is very strange Jade is allergic to beef and Nunug is allergic to pork. I’ll give you all a big hug.. Love you

    • fawnahareo July 1, 2009 at 7:30 pm #

      Nah, I think Michael has food sensitivities, too. And as Marian points out below, there are plenty of allergies on that side of the family, too. Besides, how far back are we going to go, blaming ancestors? 🙂

  5. Jenny July 1, 2009 at 5:06 am #

    I wouldn’t even know where to start!
    There are parents on the yahoo support group who do it and have no problem, I’m sure they’ll be of some help to you!
    I can’t believe she’s allergic to beef! UGH!

    • fawnahareo July 1, 2009 at 7:31 pm #

      Beef is actually the least of my worries, since she wasn’t getting a whole lot of it, anyway. And there are plenty of other protein sources that are fine for her. I already made a start this afternoon using a coconut milk base for a smoothie, and she loved it! (So did I — I made one for myself to try!)

      • Jenny July 2, 2009 at 7:41 am #

        Yeah, beef would be the easiest, I’ve just never known anyone to have a beef allergy.
        A woman from Texas contacted me through Facebook after we were on TV and she posts a lot of Keto recipes. I sent her a message to see if she had any with out egg, dairy or beef.
        I would think in some ways no cream would be better because they may get more actual food. A bigger volume of food.
        I saw the man who won the job in Australia on TV today and thought to myself that I was glad you weren’t on Hamilton Island trying to calculate dairy, egg and beef free meals!

  6. Marian July 1, 2009 at 5:20 am #

    Never mind holding your hand…..big hugs from here.

    It sounds as though there are allergies both sides of Jade’s family. Tim was allergic to milk when he was little…also Gavin, and Caity had a sensitivity too. Granny and Alex were allergic to eggs. Alex is fine now. I don’t know anyone allergic to beef.

    I hope you get some recipes sorted out before you head off to Germany….and that you have less trouble finding things there than you did here. At least you won’t be looking for whipping cream!
    Lots of love.

    • fawnahareo July 1, 2009 at 7:32 pm #

      Whew, good thing we’re leaving Jade here with Michael. I would probably completely lose it if I had to do all that editing and then worry about what we could find in Germany!

  7. taibhsearachd July 1, 2009 at 6:37 am #

    Wimper away Fawn…you’ve earned it. I feel so badly for you and your family.

    • fawnahareo July 1, 2009 at 7:32 pm #

      I’m feeling better today, Janet. Thanks for your support!

  8. Scientific Chick July 1, 2009 at 9:47 am #

    Wow, Fawn, that’s tough. How easily can you get to a keto-savvy dietitian to at least do some of the work for you?

    • fawnahareo July 1, 2009 at 7:33 pm #

      Well, we’re in-between dieticians at the moment, so I’ll have to do most of it myself, but that’s okay. I’m ready to face it now that I’ve had a night to sleep on it.

  9. marianne II July 1, 2009 at 1:19 pm #

    Liebe Fawny, ich habe eben gelesen dass Jade auch noch allergisch reagiert auf Milch und Eier! Gibt es eventuell einen Zusammenhang zwischen ihren epileptischen Anfällen UND der Allergie Bereitschaft? Wenn ich Euch nur helfen könnte! Ich glaube, diese vielen Allergien sind auch ein produkt unserer – ach so zivilisierten Welt. Jetzt warnt man vor Asbest! Vor 15 Jahren, als ich im Kreistag deswegen gekämpft habe, hat man mich als “Spinnerin” deklariert. Und unser Haus ist auch nicht ganz Asbest frei. Zum Heulen, in der Tat! Ich freue mich auf Euch. Die Betten sind schon bezogen. Drücke Euch
    Omi

    • fawnahareo July 1, 2009 at 7:25 pm #

      Hallo, Omi!

      Ich freue mich auch an unsere Besuch! Es geht heute viel besser — ich fuehlte gestern ein bisschen ueberwaeltigt, aber es ist gut, dass wir jetzt wissen dass sie Allergien hast. Ich denke es konnte sehr sicher ein Zusammenhang sein zwischen die Anfaellen und die Allergien.

      Sei nicht ungluecklich — ich denke die neue Rezepte werden sie sehr viel hilfen. Sie hat jetzt keine Anfaellen wenn sie wach ist. Mit die neue Essen, wir werden eventuell sehen, dass die Anfaellen waehrend ihre Schlafzeit werden auch verschwinden. Und der Arzt denkt dass nach einem Jahr, sie kann eventuell Eier und Milchprodukte wieder haben.

  10. Asheya July 1, 2009 at 5:13 pm #

    So sorry to hear about this added complication to your already complicated lives. I hope you are able to find good support from other families who have a child on a keto diet with allergies. I imagine this would just feel soooo overwhelming.

    Is there some sort of software you can use to do calculations, or do you have to do it all manually?

    • fawnahareo July 1, 2009 at 7:34 pm #

      It’s an online application we use to calculate Jade’s meals. It would be MUCH more complicated to do manually, so thank God for the Internet!

  11. MommyTime July 1, 2009 at 7:32 pm #

    Oh, I’m so sorry you have to deal with this on top of everything else. Is there any possibility that if you take her off the things she’s allergic to that you might be able to relax the ketogenic diet too? I wish I could help. (((hugs)))

    • fawnahareo July 1, 2009 at 7:37 pm #

      I wonder about that myself: if we might be able to successfully take her ratio of fats to carb/protein back down after elminating the allergens for a while. First we’ll see if taking away these foods (along with the already-planned ratio increase) will get rid of her sleep seizures, and then we can think about easing up a bit. But I do feel so hopeful right now!

  12. Barbara July 2, 2009 at 8:56 am #

    Here, take both of my hands! I’d whimper, too.

    The milk allergy gets my attention because I am lactose intolerant (at least). A fall off the non-dairy wagon gives me a noticable histamine response. I think it affects my mood, too.

    On the positive side, I live pretty well without dairy – but I do eat eggs and butter. ‘Dairy’ as not defined by a part of the grocery store.

    So, I’m wondering – with the many parts of milk – fat, sugar (lactose), and protein (sodium caseinate?) – can the allergist isolate those parts? In case she can actually have the fat, but not the rest. Just asking.

    If the eggs go away, can she have nuts? Are all nuts the same? Shellfish and fish and chicken and pork? You don’t have to answer my questions – I’m just rambling hoping to trigger a helping thought for you. I’ll stop now. You have my cyber-support-love!

    • fawnahareo July 2, 2009 at 10:41 pm #

      The tests show that she’s allergic to casein and lactalbumin, but doesnt’ break things down any further. It will probably be easiest and safest to simply use a dairy-free margarine as a substitute.

      Jade *can* have nuts. AND shellfish, fish, chicken, and pork. I’m definitely using all of these protein sources in my new recipes. I just need to find some kind of protein that I can put in sweet recipes (like the “cheesecake” I used to make for her… not that I’ll be making cheesecake anymore).

      Thanks Barbara — you’re always so constructive!

      • Andrea July 3, 2009 at 7:38 am #

        The subtitle of the book I told you about is “The Ultimate Guide to the Gluten-Free, Casein-Free Diet”. I picked up a bottle of fake Parmesan cheese in a grocery store yesterday, saw that casein was the first ingredient, and put it down.

  13. Gen July 2, 2009 at 9:10 am #

    In a study I did on childhood food allergies, I once interviewed a 5 year old boy who was allergic to pretty much everything: grains, meat, dairy, eggs, and many fruits. He survived on a diet of chicken and rice, even though he was allergic to rice too. He would break out in hives. His arms and legs were covered in scabs for scratching. His feet were so scabbed that he often couldn’t go to school because shoes hurt so much.
    However, he was the brightest, most imaginative boy I had ever met. His mother was obviously distraught about feeding her son allergenic foods but what else could she do, he had to eat something! I still think about them often, and my heart goes out to you. It’s a frustrating condition to say the least.

    • fawnahareo July 2, 2009 at 10:42 pm #

      Wow, that’s so extreme. I guess I should feel pretty lucky by contrast! 😀

  14. Andrea July 2, 2009 at 12:04 pm #

    Have you thought about turning those recipes into a published cookbook? You can find a keto specialist and maybe team up to do a book about the diet.

    It would help many others.

    (Maybe the fact that I was reading through The Kid-Friendly ADHD & Autism Cookbook yesterday that made me think of it.)

    Best of luck.

    • fawnahareo July 2, 2009 at 10:45 pm #

      There is actually a keto cookbook out there, and I know someone (a dietician) who is working on another. I’ve contributed my recipes to that effort… but who knows, maybe another one would be in the works down the road!

      That’s interesting that there is an ADHD and Autism cookbook. A friend was just telling us that she knows a child who was diagnosed with autism. Following treatment in a hyperbaric chamber and a change in diet, it took him barely a few weeks to go from non-verbal to eight-word sentences.

      Crazy.

  15. Marie July 4, 2009 at 6:05 pm #

    Hi Fawn,

    I’m sorry if this is late but it may still help…We tried some of the soy noodles – a protein that Grace thought was a carb! They worked but only if they are cooked fresh – she will not eat them re-heated. The soy noodles are sold in the refrigerated section of our grocery store. I have seen a few different shapes of noodles – spaghetti and fettucine are the most common. We boil them up and serve them to Grace with butter. Obviously, you would not give them to Jade with butter on them but maybe the butter substitute or another fat – olive oil or something to help add to the flavor.

    We have added various proteins/meats to the noodles to give variety. Grace is partial to shrimp and scallops so we have added from time to time. Also, we are allowed to use marinara sauce as a carb for Grace. Since she gets only a small amount, I add it in with the oil or melted butter to help the little bit go a bit further.

    Grace will no longer take heavy cream but it was great in keto recipies for some things. The heavy cream we were using was different from milk in some way. One of the kids in our program is allergic to milk and coulod have the heavy cream – it may be a lactose allergy and the heavy cream does not have the same lactose as straight milk.

    If I think of some other non-dairy items that have worked for us, I will send them to you. Good luck to all of you as you make another adjustment.

    Marie

  16. Yeah! July 7, 2009 at 5:56 pm #

    **holding your hand****

  17. asbestos surveys August 26, 2010 at 11:01 pm #

    Hello there, it’s a good post!

  18. James August 19, 2011 at 12:32 pm #

    There’s a hand and a hug for you and your family…

    You mention, that you suspected that she might have some food sensitivities…

    First, I am not doubting your physician’s diagnosis at all.
    What form or type of “reaction” to the stated “allergens” is Jade having? That is how does the body “react” by topical/outward physiological changes… OR are the reactions more of an irritant to the digestive system, where diarhea or upset stomach occurs?

    Second, how long has Jade been on a specialized diet?
    The difference being is MANY people are sensitive to specific foods from subtle irritance to the point of being total intolerant.

    I was raised on fresh goat & cow milk [milked them myself] during my adolescence, to my chagrin, was told I became ‘lactose intolerant’… years later I began drinking fresh milk again and the intolerance was negligible to non-existent. At the current age of 52, I still enjoy fresh milk with absolutely NO ill effects. Check out http://www.realmilk.com

    We have been so “conditioned’ over countless generations to believe certain things from the established medical field, yet we lose sight of the true foundations of where our long ago forefathers lived for the most part a very healthy life. [they died in wars or were sick due to man-made environmental changes]

    Best of luck to you!
    James

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