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Managing multiple food allergies

Hi there,

I have allergy induced asthma, environmental, medicine, animal and many food allergies. My diet has had to radically change in the past year and I am struggling with sticking to my elimination diet. Mostly, I eat dairy when I should not and get gastrointestinal side effects. I could really use your help with tips or encouragement. Thank you!

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  • K8sMom2002

    Hi, Mollie! Welcome, and I know all too well about food allergies. My DD has an allergy to corn. Are these ? Do you carry an epinephrine auto-injector?

    Our sister online community, , isn't JUST for kids since many of the parents also have food allergies. It's got a , and we have a great forum for cooking and support. 

    What sort of foods do you have to avoid?

  • Allison

    Hi – my son is allergic to dairy.

    Are you eating dairy because as an adult, you don't want to give it up yet?

    Or because you haven't found new ways to cook or found acceptable substitutes?

    Even though I am not allergic to dairy I eat far less than I used to and have sometimes avoided it for months or years at a time (because of his allergies).

    A dairy-free life is definitely doable!

  • Allison

    Here are some ways to substitute milk and dairy:

    (My two favorite brands are So Delicious and Daiya. My son likes the Silk Very Vanilla soy milk the best; he will also drink hemp and flaxseed milk.)

  • Mollie

    Hi K8SMOM2002,

    Thanks for your welcome and response to my post!

    Currently, I have allergies to peanuts, peas, tree nuts, oranges, green beans, coconut, wheat, cow's milk and soy. Some of the reactions (nuts, soy etc) cause hives, so I do carry an Epi Pen. Other reactions are gastrointestinal (wheat, cow's milk). I am a forty-five year old who only developed these allergies in recent years. I have been to Mayo twice but am still trying to figure out what is causing all this.

    Thanks so much for the link to the Kids with Food Allergies site. There are other members of my family with allergies–some younger cousins, some adult. I will definitely check out the recipe database.

    Best wishes,

    Mollie

  • Mollie

    Hi Allison,

    Thanks so much for your response to my post!

    I have been struggling with giving up dairy because I just love certain foods like cream in my coffee etc. Unfortunately, I am also allergic to nuts, soy and coconut so a lot of the dairy substitutes won't work for me. It has gotten to the point though where  the symptoms when I eat dairy are interfering with daily life so I just have to make the plunge to dairy free living.

    Thanks for your encouragement. I really admire your ability to stay dairy free for such long periods of time. It gives me hope that I can do it too. Thanks also for the link to the other site. I will check it out!

    Best wishes to you and your son,

    Mollie

  • K8sMom2002

    Mollie, you're right — going dairy free with that "allergy set" is tough, since many dairy free subs are nut or pea-based. But it is definitely doable! 

    Have you tried rice milk? Here's a list of from Kids With Food Allergies.

  • K8sMom2002

    Oops, I see that Allison had already shared the same link. I will say that So Delicious probably won't work for you as it is coconut based. But there's rice milk and there's hemp milk. I'll ask some moms who are also members on this forum if they have suggestions for your particular "allergy set." 

  • Allison

    I hear you on the cream in the coffee issue. (Some days I just drink it black, but then it needs sugar!)

    I'll keep an eye out next time I am in Whole Foods to see if anyone has come out with anything interesting that is not soy or nut based.

    Were some of the allergies discovered through tests alone (either blood or skin) and you have had no reactions at all?

    I'm only asking because once in a while we run across people who have had a lot of tests done, but never showed any signs. Of course if you are having hives, GI issues or other symptoms that is different.

  • Jen

    Hi Mollie,

    Welcome to AAFA's community.  Besides coffee creamer, what else are you missing that you would like to find a safe substitute for?

  • K8sMom2002

    Mollie, I asked some folks with that allergy set about hemp milk or rice milk in coffee, and they said that neither did really well. They did say that they had seen a DIY non-dairy creamer made with coconut oil and they thought perhaps you might be able to swap out the coconut oil with palm shortening (like Spectrum shortening).

    Another possibility — but you'll have to check the labels and probably call the manufacturer is this suggestion from one of the KFA members:

    Okay, with the caveat that I really am not sure these qualify as a food  :Kineret Coffee Whitener. It's kosher for passover, so the starch shouldnot be from wheat, but as always, call and confirm. This one is frozen.Depending on where she lives, it may be available year-round. Link justfor info purposes:Taam-Tov Non-Dairy Instant Creamer. This one is powdered.

    Hope this helps!

  • Mollie

    Hi Jen,

    Thanks for your post. I also love all different kinds of cheese. That and cream are my favorite dairy items.

    Best,

    Mollie

  • Mollie

    Hi again Allison,

    I have had positive blood work for the allergies listed but all have also caused actual reactions. Most cause hives and numbness in my face while some cause stomach issues. Lately, I have had a lot of nausea from dairy. Thanks for offering to look at Whole Foods. I really appreciate it.

    Best,

    Mollie

  • Mollie

    Hi K8SMOM2002,

    Thanks for the suggestions! I will investigate further. I also take meds that I need to check for gluten. This is a whole new world for me. I really appreciate your support. I live in a small town in a fairly small state, so it has been hard to find others with similar issues.

    Thank you,

    Mollie

  • Kathy P

    It's hard to have to give up favorite foods – I have the same struggles! I'm OK w/ wheat/gluten and can avoid that 100%, but there is something about dairy! For me, it's cheese. I never liked milk or cream, so that was no big deal.

    As mentioned there are Kosher for Passover versions of coffee whitener – but I'm not sure you'll be able to find them this time of year. They are in the frozen Kosher section of the grocery store. There are some online stores too, but you have to check to see if they have the Passover version. There are a couple different brands – Kineret, Gefen, and another I'm blanking on. Passover is in the spring. will (generally) not have wheat or soy. There is no restriction on milk/dairy aside from the usual Kosher restrictions. I used to find lots of treats at Passover when my kids were little and we had to avoid dairy/soy/corn/wheat.

    I have trouble avoiding cheese – and none of the alternatives really measure up for me. I try to make things that are naturally dairy (and wheat and egg) free. I do have many safe-for-me recipes that I've taken a lot of time to perfect. In moments of weakness, I remind myself that "nothing tastes as good as I feel".

  • K8sMom2002

    One other suggestion that someone made was if you had safe marshmallows, you could try melting them into your coffee. 

  • Mollie

    Hi KathyP,

    Thank you for the info and for sharing your experience with me. I think in time I can get used to giving up most dairy items but cheese is definitely a toughie. I admire you for taking the time to create special recipes. I need to invest some time in that.

    Thanks,

    Mollie

  • Kathy P

    Check out the . There are lots of great recipes there. But I'll warn you, gluten-free baking is different! I've tried many recipes where I've followed the directions and it was a flop – either taste, texture, or just a complete fail. But I do have some texture issues, so I can't stand anything gummy or mealy when it comes to baked goods.

    If you are looking for bread, this is . That blog has some tips on how to get it to come out well every time. Bread is another one of those deal breakers for me. There are so many out there, and I've tried lots. What works often depends on what you are used to. I was used to good quality sourdough and artisan breads. We never even had sandwich type bread in the house. I know I've got a good recipe when my husband and son will eat something without complaining! 

  • Mollie

    Hi K8SMOM2002,

    The marshmallow idea sounds delicious. I will have to look into that. Thanks again for all your help!

    Best,

    Mollie

  • Mollie

    Hi KathyP,

    The bread recipe looks delicious. I will try making it as bread is something where I feel many of the commercially available gluten-free products fail miserably. 

    Thanks for the help.

    Best wishes,

    Mollie

  • Shea

    Rice milk works great on cereal. 

    Organic milk and creamer are less bothersome digestively to me, that or Lactaid, but I guess it depends on what in the milk is causing the issue, and how severe the issue is. Some types of creamer have a bunch of stuff in it that I steer clear from. I cannot give up coffee or creamer right now I have decided, so I limit limit limit dairy instead, and get organic coffee and creamer. 

    As for the nut/soy allergy, Sunbutter has been a blessing to my son and I (sunflower seed butter, the brand we like is Sunbutter). I make him sunbutter jelly sandwiches, and substitute it in recipes.

    They also make sunbutter cups (like Rease's but with sunbutter and dark chocolate instead.. my son can eat things with soy lechithen, but not soy oil or soy flour, so you'd have to check on that in the sunbutter cups if soy lechithen gives you a reaction). 

    I work better by reducing most things, BUT some things are better just cut ove, especially if hives or breathing problems are involved. I have had to cut out completely peanuts, apples, grapes, peaches, plums, dried fruits.. I am severely allergic to animal dander, so no more living/visiting homes with dogs or cats.

    It takes time but it is worth it to keep working at it. We have two leopard geckos now that we find more rewarding to care for than any dog, cat, or rabbit… and that we are better able to care and provide a good life for. They just laid eggs. So easy, and tame and nice of pets (and inexpensive to care for too).

    Eating foods that both taste good AND make you feel good is the BEST. And usually I find grand meaning in my allergies, like: we as a country are milking the poor mama cow too much.. there are bad farming practices behind it, and bad things in the milk often, like growth hormones, so our bodies are communicating information to us through allergies to protect us and our children. I have found meaning behind each one of my allergies so far. I am starting to trust my allergies and develop a positive relationship with them now, and that is helping me make progress and stick to my testrictions more than anything else.

     

     

  • Mollie

    Shea,

    I really got a lot from your post. Thank you. Your idea about making positive relationships with your allergies is very wise and creative. I appreciate your perspective very much. I will have to look into sun butter. It sounds delicious!

    Thank you so much!

    Mollie

  • Jen

    Mollie – another vote for sunbutter.  We love it!  Let us know what you end up trying.

  • K8sMom2002

    Shea, good thinking on the SunButter — lots of folks who manage peanut allergies love it. And great positive attitude there!

    Mollie, hope some of our suggestions help!

  • Jen

    @Mollie - checking in to see how you're doing. Update when you get a chance.

  • Mollie

    Oh @Jen, I just saw your post asking for an update. Sorry it took me so long to write back. I am doing ok. Still struggling with some dairy but find that caffeinated tea in the morning has been pretty tasty. I usually drink herbal tea but have been drinking Twinings' Lady Grey most days. Thanks so much for checking in.

  • Jen

    No worries.  Thanks for stopping in.  So…how are you struggling with the dairy?  Do you need help with dairy substitutes?

  • Mollie

    Hey Jen,  it's more an issue of self discipline than needing substitutes. My family has dairy in the house and sometimes I cave in to cravings. I have started having sweats with nausea again– something I struggled with before giving up wheat. I think it is possible I have developed an allergy to sugar and am going to the allergist Friday. These allergies are snowballing on me. I really just need to find tasty alternatives. I use flavored olive oil on popcorn and it's pretty yummy. 

  • Mollie

    Hey K8SMOM2002,

    I ended up switching to caff tea in the morning so didn't try the marshmallow idea. I still think it has great promise especially with gourmet or homemade flavored marshmallows. My brother once got some peppermint marshmallows from Trader Joe's at holiday time that were silky in texture and I think would have been perfect.

  • K8sMom2002

    Oooh, peppermint marshmallows! Yum! 

    And I love tea, so I'm right there with you. 

    As for popcorn, there's a that we've used. 

    Will your appointment on Friday be just the initial consult or will you be doing allergy testing?

  • Mollie

    Hi again,

    I have had a consult with this allergist before and am hoping we can get the testing done that day. I have been to Mayo twice and while they confirmed that I have many allergies they couldn't explain why. So I am back with a local allergist hoping they will help and that this test comes back negative. I may ask for a referral to UIowa Hospitals and Clinics Allergy and Immunology to get their take on things as well.

    How are you and your family getting along?

    Best wishes,

    Mollie

  • K8sMom2002

    Mollie, what sort of testing have you had done? One thing to remember about is that it does have a high rate of false positives. A can really help your doctor figure out what the source of the problem is.

    And from what I understand, it's still a mystery why the immune system gets tricked into thinking harmless things are dangerous. But there's lots of , so hopefully in the future, we can know what causes it and better ways of treating it. 

  • Mollie

    Thanks, K8SMoM. Friday they repeated RAST testing on all foods I have test positive for before and added corn, rice and tapioca. I hope to know results Monday. I tested positive for increased prostaglandins at Mayo and was put on two aspirin a day. This led to a catastrophically heavy menstrual cycle which put me in the ER so I stopped the aspirin. Has anyone else here had elevated prostaglandins? 

  • Kathy P

    What were they looking for when they found the elevated prostaglandins?Hopefully the new testing will give you some answers. But remember, food allergy testing has a high level of false positives.

  • K8sMom2002

    I'm curious, too, about the elevated prostaglandins. Did you follow up with the Mayo doctors after the trip to the ER? 

    Ditto on the false positives … is the doctor you're seeing equipped to do oral challenges?

  • Mollie

    I am ashamed to admit it but I put off following up with the Mayo doctors about the ER incident. I felt I had to have an elective hysterectomy and I was very depressed for a long time after. The prostaglandins can indicate inflammation related to mast cell disease and aspirin helps the inflammation.  I just spoke to another doctor re restarting the two aspirin but she was concerned I could bleed in my gut which has been irritated or infected on and off since last year. 

    I have never heard of oral challenges and am not sure what that means. Most of the foods I have tested positive for I have had hives and or facial numbness from. The two exceptions are wheat and milk which have caused gastrointestinal symptoms.

    Thank you for caring and offering such knowledgeable help. I really appreciate it.

     

  • K8sMom2002

    A hysterectomy and depression can derail a lot of good intentions even in folks who aren't battling other stuff, so no judgment here! 

    I would recommend that you follow up with Mayo especially if you have mast cell disease — if they don't know something went wrong, they can't tweak it to fix it, and mast cell disorders are tricky to manage and treat.

    are just what they sound like: in a supervised setting, a doctor gives a patient a small "dose" of food to try, and then waits to see if there's any reaction. A double-blind oral food challenge (where neither the person handing the food to the patient nor the patient know whether it contains an allergen) is the gold standard in diagnosing a food allergy. 

    My DD had to do several oral challenges, and the first one was to peanuts. They started out with brushing a peanut against her lips, and moved up in 20 minute increments with increasing doses. 

    The doctor stops if there's any sort of reaction, and you have an IV in place if you do start a reaction. 

  • Kathy P

    Mollie – have you been diagnosed with as mast cells disorder or is that suspected? There are different variations of mast cell disorders. Our Kids With Food Allergies division has a on their community forums. There are some resources linked in that thread and several very active members/volunteers who manage MCAS and related conditions.

  • Mollie

    They looked at a mast cell disorder but felt they couldn't prove it at the time. I just wrote to my doctor at Mayo to tell him what happened. Thanks for giving me the gentle nudge to do that. I will go look at the link provided for MCAS support.

    Thank you!

  • Ann Marie

    Dear Mollie,

    I can emphasize. If you were here right now, I'd suggest we go out to a cafe for coffee or tea so we could chat about our food allergies.

    I have multiple food allergies and my list of what I can't eat is over three pages long. I've consulted with several nutritionists who specialize in food allergies (very helpful, if you haven't done it) and was always frustrated when they recommended a cookbook and it turned out to have only one recipe that I could eat.

    I finally came to realize that no one in the world has my exact combination of food allergies and I can't expect to find a cookbook just for me. If I want a cookbook, I'll have to write it myself. Whenever I experiment with a recipe and it tastes good, I note it in a file. So I'm collecting recipes that work for me. Later I might print them out along with photographs of the food so I have a handy resource when the inspiration runs low.

    Germany, where I live, has a cross-allergy cookbook that gives four different alternatives for each recipe depending on which cross allergies you have. It offers great ideas on adjusting recipes. Does the US have something like that?

    Good luck to you in finding combinations you can eat. It is frustrating to give certain foods up, but you might find that your improved health more than compensates.

  • K8sMom2002

    Ann Marie, I've had that experience, too, about finding cookbooks that only have one or two items that will work. What's the name of the German cookbook you mentioned, and is it available in English?

    A great resource that helped us manage our DD's food allergies was the on the Kids With Food Allergies website. It's run by the same foundation, Asthma and Allergy Foundation of America, that runs this website, and the database is searchable based on lots of different allergens. 

    But you're right about "writing" your own cookbook – finding a recipe and making it your own is the way to go! I use the Mealboard app, and I store all my adjusted and modified recipes there, so that I have them with me always and can share them easily by email with other family members.

  • Ann Marie

    That's what I love about this forum — I never knew about the safe eats page. Could you please double check the link, because it didn't work for me.

    The name of the German cookbook is by Christiane Schäfer and Anne Kamp. For each basic recipe, it shows how to adjust it for birch, mugwort, grass, and latex cross sensitivities. It's the most helpful cookbook for allergies I've seen yet. I have no idea if it's been translated into English, and a quick google search for cookbook, allergy, and cross-sensitivities didn't turn up anything. If no one has written a cookbook like that in English, then someone should!

  • Kathy P

    Anna Marie – there seems to be a website error on the KFA site at the moment. I've got our tech folks looking into it. I'll let you know when it's fixed.

    I've had issues with cookbooks too – I find they aren't quite tailored to my needs. I use a lot of ethnic cookbooks and web resources. When my son was little and we had to avoid major food groups plus corn and some other non-top 8 thing, I started looking at ethnic foods that were naturally free from what we needed to avoid. A lot of Indian dishes worked for us – they were wheat and soy free, I just needed to avoid the yogurt and paneer and replace the ghee with oil. Chinese food worked if I swapped out the soy sauce with an alternative. My biggest struggle has been finding wheat/gluten-free baking cookbooks.

  • K8sMom2002

    There are lots of good cookbooks out there, but I guess everyone is just a little different. Some folks are like our family and really depend on wheat, egg and dairy to stay corn and apple free. And others use apples and corn to stay wheat and egg free!

    I'm dimly recalling that Germany is big on apples — how hard is it for you to adjust to that in your day-to-day living? 

    I hope the link works now … it's a fabulous resource!

  • Mollie

    Dear @Jen , @Ann Marie and @K8sMom2002

    I wanted to write to apologize for falling off the grid for a while. Thank you for your posts while I was away. I had a complex ovarian cyst and some lesions on my liver that have to be tested  by MRI in December. All signs point to them being benign, but it has been nervewarcking. The ovarian cyst went away on its own.

    Ann Marie–I wish we could have that coffee! The cross ingredient cookbook you have sounds wonderful. I also think your practice of recording recipes is really smart too. I am going to try that. 

    K8SMom2002–I did hear back from my doctor at Mayo. He suggested staying off the aspirin for now in a very kind email. I have an appointment at UIowa allergy in three weeks so we will see what they have to say.

    Last but not least, my internist diagnosed me today with probable celiac disease. She doesn't want me to go back on gluten to do testing so we are going to proceed without 100% definitive diagnosis. However, overall I am feeling better and am eating a much healthier diet overall which is bringing about improvement on a daily basis. 

    Thanks to all of you for your patience with me. I hope you are all well and would love to hear updates on how things are going with each of you.

    Thanks and hugs,

    Mollie

  • K8sMom2002

    Mollie, it sounds like you've had a rough time of it, but I'm so glad you checked in and let us know what was going on!

    And I'm glad that you've got a definitive diagnosis and are feeling better with the changes in your diet.

    Will you have the MRI for your liver at the same time that you see the allergists? It's awesome that your Mayo doctor wrote you back and gave you some guidance, and I'm hoping the doctors you'll see in a few weeks will give you a good plan to move forward. 

    Do you need any help moving to gluten free? I believe @Kathy P is GF and has been for several years, so just ask! Also, if you want an awesome sugar cookie that is gluten free, you can try this recipe:

    You can swap out the butter the recipe calls for with a DF margarine spread like Earth Balance. Or if your allergy "set" allows, you could use butter-flavored Crisco, I'd think.