Sensitivities, Allergies, and Celiac! Oh My!

“I don’t know how you manage.”
“I could never do it.”
“What do you feed them??” (asked incredulously not curiously)
“They will out grown it.”
“My cousin’s husband’s sister’s daughter…..”
“Oh poor thing will never know what (insert random food choice here) tastes like!”
“I could never live if I couldn’t eat (fill in the blank).”

 

Think before you speak

Think before you speak

 

 

Nearly every encounter with someone new results in at least one of these being said to us. I am so sick of it but at the same time I understand it. We aren’t normal. We can’t pretend to be. We are one of those families. We are the family that reads every singe label even on the foods that was “safe” last time we were at the store. You just never know when a company will change their ingredients and that could be deadly to us. We are the family who avoids restaurants like the plague. We are the family that asks you to wash your hands and face after you eat certain items when you are around us. We are the family that asks for certain foods to be restricted from whatever occasion is taking place, and at one time from the classroom our child was in. We are the family who eats mostly (90% of the time) organic, non-GMO certified, non-processed, foods. No, we are not elitist with our choices and opinions. We are a food allergy and Celiac Disease family.

In our case it is genetic. I have a severe seafood allergy that gets worse the older I get. It isn’t a shellfish allergy. It is all seafood. If I touch tuna fish I break out in hives. An accidental intake of Caesar dressing results in a mad scramble for the Benadryl. I do not want to think about what eating an actual fish would do to me. My dad and grandpa can’t eat certain fish without getting sick and my sweet niece is allergic to seafood also. Another niece is definitely sensitive to seafood if not actually allergic.

Some of our No-No Foods

Some of our No-No Foods

Bug was one year old when he had a severe allergic reaction to apricots. Interestingly this is indicative of a possible future latex allergy, or at least that is what we were told by the medical professionals. My grandma had a latex allergy and I am very sensitive to it. Connection? I think so. For numerous years he had to avoid all stone fruits (fruits that contain a pit). He has grown to the point where he can eat anything except apricots. We limit latex exposure just to be safe.

C-Dog. Poor C-Dog. It was Mark’s former supervisor who first suggested C-Dog may have Celiac Disease. He is a rare and fortunate individual to be diagnosed at the very early age of 3. This was way before gluten-free was a food trend and it was not easy to feed him. Even worse was he has Sensory Processing Disorder so textures were always a battle. Even now we still make mistakes and accidentally give him something that has cross-contamination. Β How do we know? Well, every time gluten passes those lips he develops a weird smell that doesn’t go away with a shower. Deodorant and cologne can’t compete with the “gluten smell.” His body has to heal itself from the contamination and then the smell eventually fads. As my mom’s family digs into our medical history past we are learning this is a genetic disease, in fact my lovely aunt has recently been diagnosed also.
C-Dog also has the inability to digest and metabolize simple carbohydrates properly. If you are familiar with gluten free then you know simple carbohydrates are a huge replacement in many recipes. We try to avoid simple carbs, but it isn’t easy. He has to take supplemental enzymes whenever he eats.

More No-No Foods

More No-No Foods

Elf has NINE, yes nine, food allergies. Each a different level of severity. Each one of her allergies can be traced back to my uncle who had all of them and then some. Sadly he passed away in the 50’s of Leukemia. My mom has all of his medical records and that is how I know my daughter shares his allergies. She is allergic to milk (no she is NOT lactose intolerant and NO she will not outgrow this allergy considering the severity of it). She is also allergic to soy, eggs, rice, white potato, wheat, oats (yes, even the gluten free ones), peanuts and treenuts. Yes, she can have coconut. Coconut is NOT a nut and is in fact a separate allergy. I am very thankful she can have coconut! She has outgrown several sensitivities. For awhile we had to limit citrus. She can now eat it to her heart’s content.

How Elf feels if she eats something bad

Princess is allergic to corn. Between her corn allergy and Elf’s soy allergy we cannot eat anything in a package, or so it seems. The culprit is the oils, usually cooked in but sometimes an ingredient (like in dressings). We even have to be careful which brands of olive oil we buy as it has been discovered many popular brands really aren’t 100% olive oil. :/
Princess also has a pretty significant sensitivity to gluten. She has not been diagnosed with Celiac Disease but her Dr encourages a gluten free diet for her. She is also sensitive to eggs and lactose. She can eat a bit of cheese or yogurt but we have to monitor her intake.

Princess feels "icky" and "crazy" when she eats gluten

Princess feels “icky” and “crazy” when she eats gluten

That leaves Zen. He just recently started eating foods other than breastmilk. I pray he doesn’t add to our list. I hold my breath, hoping and praying. Of course many foods he will never have. He will never have gluten or cow milk. He will drink coconut milk like the girls and I do. I will try him on cheese and yogurt though once he is a bit older.

Shopping is always a chore

Shopping is always a chore

What about those pesky comments and questions from above?
Well here are my replies.

“I don’t know how you manage.” I have no choice. If it was your child you would manage also. I read a lot and connect with others in similar situations and learn from them.

“I could never do it.” Yes you could. When the choice is do it or die (literally) you do it.

“What do you feed them??” (asked incredulously not curiously) I feed them food. Just because it isn’t what you eat doesn’t mean it isn’t food. Fruits, veggies, and meat are the main elements of our diet.

“They will out grown it.” Perhaps, but that is not likely. Please do not assume you understand our medical history based on *YOUR* experiences. Every situation is different. Your words do not offer me hope, only sadness because I know it just isn’t true.

“My cousin’s husband’s sister’s daughter…..” As much as I love to share stories with other people in the same boat I do not want you to think you understand what my life is like because you know someone who knows someone who has an allergy. However, if it is close to home (you, parents, sibling, etc) then please share! Solidarity!

“Oh poor thing will never know what (insert random food choice here) tastes like!” Well they do not know what they are missing and usually they aren’t missing on anything. Packaged junk food is merely fillers and chemicals. My kids still get treats and they are amazing because they are not full of the other stuff. For example, I use Enjoy Life chocolate chips (which is safe for all of them) and melt them to make candy!

“I could never live if I couldn’t eat (fill in the blank).” Actually you could never live if you ATE that food and were allergic to it so this statement frustrates me the most.

What CAN you say? Well, a simple “That sucks” works because it does suck. Living in fear that your child can die because someone offers them a candy (think lollipops at the bank which have corn syrup in them) sucks. It sucks knowing that cross contamination with gluten is invisibly damaging the insides of your young child. It sucks having to take 2 hours to grocery shop because every label MUST be read. It sucks. That is all.

**A very big thank you to my kiddos for drawing these lovely pictures for me. ❀

 

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82 thoughts on “Sensitivities, Allergies, and Celiac! Oh My!

  1. Gluten is evil, I am learning that more every day! My sweet little three year old will be tested next week for gluten allergy.

    • Just an FYI the blood test has a very high positive negative result. If it is negative the next step is an elimination diet. Biopsy is the last resort as it is so invasive. Love to you and Little Guy

  2. I love that your kids made the pictures to accompany this post. Very talented! We struggle with allergies and lactose intolerance, but luckily we don’t get too many stupid questions. I wish you great fortitude in dealing with yours ;).

  3. You hit the nail on the head. So many situations where these discussions come up and I find myself saying as little as possible on it, unless the person shows interest to know more. I just don’t want my kids to eat any “no-no” foods and the constant vigilance required at birthday parties or visiting friends or even the park are stressful.

  4. Almost 2 years ago, we found out my then 5 year old nephew was allergic/sensitive to chicken, corn, tuna, and strawberries along with other non-food items. I started being a label reader for my “kid-visit” foods so that everyone was eating the same thing; it was important to him that he wasn’t eating “special” foods. One of the most shocking things to me was the additives to meat (really, dextrose is added to a turkey?!?) What was really heart-warming was watching his brother and cousins (ages 3-5) without complaint give up treats he can’t have because “it wouldn’t be fair”

    • Yes, the ingredients in meats shocked me also when we switched over. We all eat the same with very few exceptions. Pasta, for example, is hard. We have to make a quinoa/corn blend for Elf (and the rest of us because we like it) and a rice one for Princess. Pasta is a treat here.
      I think kids are more compassionate to their peers with food allergies than the adults are.

    • I was shocked too when I first realized they added dextrose (or corn syrup, etc) to meat…after getting sick eating it! It has taken many years an lots of research, but I understand it more now. It all goes back to the corrupt food industry. Things that started out as good such as kick backs to farmers for growing food and companies using locally grown food like corn, are now outdated and bad. Yet farmers growing GMO corn and huge food industries buying it and manufacturers using it in products still get kick backs (or get it super cheap) even though it is now over produced and industry farmers are buying up the land. Watch the movie King Corn.

  5. Oh wow. My blood pressure started going up as I read the comments other people have so *thoughtfully* shared with you.
    I’ve had allergies from day one (except my mother was nothing like you and pretended to help, but couldn’t be bothered to actually try), so my childhood was…painful.
    Five years ago I figured out the source of all my problems and cut out soy – boom. First time in my life I was normal and healthy. Now I’m struggling again. I’ve been diagnosed with Celiac Disease, and have been on a (whole lot) of drugs (and eliminated gluten, obviously), but it’s not great. It hasn’t been a great year plus.

    And it’s so expensive. Your kids are lucky to have parents smart enough and loving enough to help them with this.

    • I’m from Central Europe, and here is so expensive to eat gluten and milk free (milk protein, not just lactoze…) We started the diet a week before my daughter’s b-day, and I had to figure out how to make a cream cake, and all the food for the guests free of milk and gluten (risk control). Mediteranean and east European traditional cooking is naturally gluten free, and can be made milk free too. Almost everything can be made from scrach, just imagine what would you like to exist and google it (like home made coconut milk:-) and price is one fifth of the ready made product. Oh, and I am flawor enhancers and colors intolerant, so my family eats none of industrial candy or meat because of me…

  6. Your post from March 19 brought me here (which seems to be circulating around social media). I hope that the people who say these things are coming from a well meaning, non-judgmental place such as the person that was behind you in that line at that grocery store. I can’t imagine what it’s like to walk in the shoes of someone who deals with food allergies of their own or especially in their children and being afraid just to eat and sustain myself or my children. I can’t even imagine how much it “sucks”, because I’ve never been there (at this point in my life, but my child is still very young). I hope maybe in their round about way; it was their way of telling you that “it does suck, but I don’t quite understand” or “it really sucks and I’m trying to understand”, but I’m also not oblivious to the fact that there are people out there who say what seems like well meaning things in a very judgmental way. I pray that you and your family find some peace and things get better for you.

    • Most people are very well meaning but there is a chunk (even some family if you can believe that) who are just mean. I am hoping that through this post people will learn to be a little more tactful in their words πŸ™‚

  7. Yup, that sucks.

    We understand about allergies, and intolerances as we have many friends with assorted variations. But we are grateful that we don’t have any in our household. And to have so many in one house? That are different? Yes, that *is* tough.

    When we have friends round with requirements, I always make sure that we meet them. There is a little girl in my son’s class who is intolerant to dairy. Just dairy, just intolerant. To me, that is NOT a big issue. That’s ‘easy’ in the grand scheme of things. So at son’s birthday party, I catered for her – sandwiches, cake, crisps, biscuits, sweets etc etc. All carefully checked and all dairy free. Noone else noticed, but the little girl (aged 5!) came up to me afterwards almost with tears in her eyes to say thank you for catering for her. She hadn’t had to bring her own food to the party. She knew what was safe for her to eat. And she had enjoyed it and felt ‘normal’ and part of the party.

    I am sorry that you meet with such stupid comments.

      • Wow. You really think so? I was raised in a way that that is seen as normal: you invite someone round? Then you feed them. And if they have dietary needs? You cater for them as best you can.

        I am certainly not having a little 5 year old feeling left out at a party!!

      • I am really sorry to hear that. I was thinking about it this last couple of days – I am vegetarian, and my friends cater for me, my mother-in-law drinks peppermint tea, so I always make sure we have some in, one little boy only drinks water so I watch out for him when we are at parties where they are dishing out cordial.

        I just see it as an extension of that, I guess. I never realised it was unusual – I am really sorry that it is. Popping in unexpectedly for lunch is one thing, but a pre-organised party? Well, you would always be welcome at ours – you’d just need to give me a list and some ideas…!

  8. Would you trust them to cater to your needs? When you have serious allergies, not intolerances, I would always take my own food. Well-meaning people don’t understand that even though Cracker Jacks were ok last year, they have changed their formula, or you may have developed a new allergy and you can’t eat them this year.

    I try and accommodate the best I can, but when it is truly a matter of life and death, I leave that in the hands of the professional – their mom.

  9. I have a large household of kids (12yr old niece/foster daughter, 9yr old niece/foster daughter, 8 year old daughter, almost 2 yr old son, and my nephew who is 17 and with us more often than not), so I can’t imagine how hard it is trying to juggle all of those allergies! It’s hard enough to feed that many kids, let alone being so careful about what they eat! I actually find this kind of inspiring, I’ve just started trying to eliminate certain products and food, just for healthier living.

  10. The challenge of multiple diets is not to be poo-pooed. My sister has had Celiac for over 40(!) years – diagnosed before the age of 2. My son is anaphylactic to dairy at extreme levels. I have a first cousin with a nut allergy, a mom with a cinnamon issue. Add a heart patient, a diabetic and a Crohn’s patient and family meals become experiences in and of themselves. πŸ™‚ We all eat great food – just perhaps different from the food other families eat. And it sounds like you are doing fabulously for your crew.

    While our situation is so much easier than yours (only one allergy to handle per person!) we have always tried to keep a short list of ‘safe’ foods that he can eat to share with folks who ask. Friends seem to WANT to serve foods that meet our special needs. So I do everything I can to make it easier for them to feel good about that while keeping us all safe.

    Best to you and yours..

  11. Your are feeding your children more healthily than most. it may be a horrible blessing in disguise that they have fruit, veggies and meat. The additives and preservatives in food nowadays is just horrible. It’s no wonder the average kid ‘craves’ the sugar high from the junk food that is served at school and home these days. I hope you are able to adapt to the changes that occur and that Zen can handle the allowable foods right now!

  12. yes, it sucks! I am the same with seafood (all seafood) only it messes with my heart… pretty fatal. I have had too many people distraught that I have never had shrimp or lobster or sea bass, etc. I have never missed it. But tasting them would most definitely be fatal for me. Kudos to you. You are a super mom among mom’s. God bless you and your family!

  13. I completely, totally, absolutely, 100% understand your struggle!

    I found out a year ago (at the age of 35) that I’m allergic to soy/legumes, dairy, nuts, and some eggs/meat if the grains the animals were fed happen to contain soy. I also cannot ingest anything with aspartame/artificial sweeteners or MSG.

    It makes grocery shopping a chore, instead of something I at one time enjoyed. But the allergies are the better “outcome”, as it was believed that I actually had colon cancer. SO.., I’ll take the allergies, thank you!

    My sister is allergic to gluten, so between her allergy and all of mine, it makes family/holiday dinners interesting… and sometimes hard to coordinate.

    And I agree, the questions about what you eat… they sometimes grow quite old to field. My day usually consist of the following answers:

    “Yes, I do eat regular food.”

    “Yes, I eat very healthy.”

    “Yes, my grocery bill is VERY expensive.”

    “Yes, I’m happy with the diet I have to follow.”

    “No, I don’t eat fast food.”

    “No, I don’t crave or miss those things I once used to be able to eat.”

    “Yes, I have ate some of the things I’m allergic to since completely weaning myself off of everything… and the texture or consistency actually makes me gag, or unable to swallow.”

    “No it’s not a mental reaction, it’s my bodies way of telling me I CANNOT ingest those things.”

    “No, I don’t have an eating disorder. The weight loss is a result of my body no longer being inflamed, and healing itself.”

    “No, it’s not an attempt for “attention” or join in on the new “fad”. It’s legitimate allergy, and I have sever health issues if I eat soy especially!”

    I’m right there with you my friend! There are times I wish dinner could just be a quick drive thru, but the repercussions are not worth the time “saved”.

  14. I am so sorry your family has these struggles. I myself have Celiac Disease and a toddler with some food allergies. It does suck and it is difficult. Hugs.

  15. I hear you. We have food allergies in this house too. Peanut, tree nut, red meat (all furred animals and their gelatin), dairy, wheat, and, and, and…plus severe intolerance to gluten (1 celiac, 1 assumed but not tested) and corn. Those questions and comments about diet is constant, not to mention the doubters and the “just one bite can’t hurt” or “I’m sure it is fine”. And it seems our entire culture revolves around food – those suckers at the bank or car wash, potlucks for every group activity, holidays, crafts, birthdays. One of the many reasons we homeschool! ❀️

  16. I too have struggled with food allergies in my children — however it was years ago (my youngest is now 38)! It is just a ton of work — no way around it. The fir time I went grocery shopping after the first diagnosis took me 3 hours for one bag of groceries. One thing I did was learn what “Kosher for Passover” actually meant because it allowed us to not have to worry about rereading all the labels. If it was Kosher for Passover, it was acceptable to their diet. I am not sure if this will help you but sure hope so. Blessings to you and your family! Cheri

  17. Hello! I just had to find the humor in this post .. because my son has Type 1 diabetes and we have heard pretty much every one of those insensitive remarks … blessings to you and your family.

  18. I have adult onset food allergies. People look at me like I am crazy when I tell them I am allergic to apples, strawberries, almonds, peaches, cherries and green pepper. That last one is totally random I know. I have an epi pen and have had to reach for the good ole benedryl from time to time. I have a friend with Celiac Disease and I am now seeing her struggles with finding gluten free items. Good for you for reading and rereading the labels on foods. Love the pictures the kids drew!

  19. I do not envy you and all you have to go through. Your first instinct as a mom is to provide for your children and protect them. But unfortunately it seems nearly everything you can provide for your children you have to protect them from it. It sounds like you are the expert at labels and food research. Fingers crossed for the littlest one not having food sensitivities or allergies, or at least not too many or nothing new that you don’t already manage. I have a close friend with a lactose allergy, not an intolerance, an allergy. Something about the lactose from cows. She can do goat cheese/milk so that is her only indulgence. But she also has a soy allergy and many nut allergies and more so the idea of “replacement” milk is out the window for her as well. You do your best for those babies and I’m sure they always feel taken care of and loved.

  20. You are an awesome mom! I suffer from food allergies and have been diagnosed as having oral allergy syndrome which means almost all raw fruit and veggies cause me to have allergic reactions (I have to cook everything). I also am allergic to all nuts, soy, and coconut. I can’t believe the things people say to me and try to trick me into eating to prove that I am really not allergic to fruits and veggies. At the last family party (and yes, I bring my own food), my MIL told me that she had baked a cake that I could actually eat. I ate a piece and within the space of time that I put down my fork, I had a full blown allergic reaction and almost died (had to be rushed to the hospital). Turns out that she powdered nuts and carrots (two huge allergies) into the cake AFTER it was cooked because she wanted to prove that I was making up my allergy. Thanks MIL for almost killing me to prove that yes, I do have extreme food allergies.

    • It is terrible that there are sooo many people out there that think that people are full of crap when they have severe allergies. And to pull stunts like that (intentionally) just blows me away. For it to be a family member is just unbelievable. You could have DIED. I’m glad you didn’t. I would NEVER eat anything she prepares again. WOW

  21. Just found your site from a newspaper article. My son has Peanut, Soy, Corn, Oats (yes even gluten free ones), and Wheat. My daughter has all of them plus tomatoes and citrus. I really can’t eat meat or dairy unless I want to bloat out and feel miserable. I dream of the days going to amusement parks and eating all the junk….even though it ended in me at the hospital during my son’s pregnancy. The food never agreed with me and almost killed me numerous times but there was something “wrong” with me for not being able to digest processes “franken” food. πŸ™‚

    We read every label, we struggle being invited to family events (last party on our ride home ended with EMT & fire department closing road to pick up my son at county line for tightening, hot throat can’t breath from cross contamination, thank goodness we made it to the hospital and the treatment worked in time), and I struggle keeping variety. I worry about my son & daughter as they get older. Let alone their pet allergies….I’m obsessed with my allergy friendly dogs too.

    Just so happy to see I’m not the only obsessed Mom….signnnnnnnnnn

  22. Found you through yahoo! I work in the food industry and I’d be more what would be politely curious. In school we had this advanced baking course and we studied and tested different kinds of what I guess I can only describe as “alternative” recipes. When I took that class (almost ten years ago) we studied G.F, Sugar Free, Dairy Free, Low Fat/Fat Free and Vegan recipes. I’m sure now it’s a lot, lot, lot more allergy based. It was so interesting and important to learn how to tweak recipes like that.
    If I sound like a butt-head right now, I beg your pardon. I don’t want to say anything unintentionally rude or insensitive.
    Well, anyway. don’t have any allergies, so I’m afraid I can’t relate to it, but I am sorry, it must really suck sometimes. I just wanted to pop into your blog and say hello! Looking forward to reading more of it!

    • Oh you are fine πŸ™‚ Thank you for taking the time to read and comment! If you ever have questions about that type of baking let me know. I am no expert, but I sure have experience!

  23. I also have celiac disease along with 22 other food allergies including eggs and dairy. I have also needed help (and received it) in my life and so relate to your difficulties. Please feel free to contact me if you need help. I will be happy to help you in any way I can. My husband and I are not wealthy but we are rich in friends and blessings and are always ready to help someone who asks. you have your hands full but I know you will be blessed and loved so much in your life.

  24. I am sorry for your families numerous allergies. I have all the same issues as your Princess but she is blessed to know at her age and to have your family to keep her safe. I’m 44 and no one could figure out what was wrong with me. The health problems I suffered. Missing a year or two of school. Yes shopping takes a while to read the labels and you are so correct that manufacturers will change their ingredients and suddenly something I could eat makes me sick now. The hospital bills I accumulated. Anyway Thank you for being a voice for your children to educate those who don’t understand we aren’t “picky eaters”. πŸ™‚

  25. While we do not have allergy restrictions we are sensitive to something in certain processed foods like hot dogs, spam, sausages, some Chinese foods ect. Some strange unknown unlisted ingredient or process technique.

    I have learned to make everything from scratch. And I mean everything, just about. Every six months I master a new old world skill. I sew stuff I might want and can’t find, build furniture and remodel houses mostly by myself ( hubby helps with learning new stuff), I bake bread, can foods, then learned candy making over Christmas, and now I’m soap making and everything else toiletry related. You really can make everything yourself. At first each new hobby is a huge investment but in less than a year it always pays for itself. We’ll maybe not soap, but that is because I’m obsessed with scents and oils and keep buying them by the six pack for the price break.

    Long story short, you can make everything as I’m sure you know. You are not alone put there trying to give your family the best you can. You don’t have dietary restrictions you choose to provide the foods that work for your family. You choose to make stuff from scratch because the crap in food will kill you. I’m lucky the crap won’t kill us and one day of eating is just uncomfortable for a few hours. But I get it.

    Good luck to you, if you ever need brainstorming ideas feel free to hit me up. I love following peoples blogs and learning from them and I’m pretty good at brainstorming.

    On Facebook I log my nutty projects at freethepig. I’m not advertising for followers just sharing with you in case you would like to chat.

    Best of luck. If you haven’t taken up soaping yet look into it. I’ve done most of the initial research on it and am happy to share.

    • My friend makes lotion bars and soap. I love that you make everything. I feel a kinship to you! I make everything, nearly, also. I make the baby’s wash for his cloth wipes πŸ™‚

  26. I have weird allergies / intolerances (anything with a modified corn starch base and dairy). It isn’t deadly, but I get diarrhea, sinus infection, asthma, little bumps all over, migraine, and bad cramping. I’ve heard just about every comment you have. I’m guilty myself of saying to someone years ago with a dairy allergy that I would just go ahead and eat ice cream and die because I would die if I couldn’t have my hagaan daas coffee ice cream. Ha! God showed me! I had no idea what was making me sick. I thought it was stress. Looking back, it was stupid / naive. Although, I don’t think mean. When people say that to me now, I just say, “That is what you think, but if you actually have an allergy, you will feel differently. Feeling good is way better than feeling sick and the ice cream (or whatever) isn’t worth it. eventually you won’t even want it because your brain will associate it with being sick.” Which is true. Yes, I miss my ice-cream, cheese and homemade whipped cream, but I just think about how sick I was and all the time I spent in the bathroom instead of with friends and family after holiday meals and I know its ok. I walk past the cheese isle in the grocery store and the smell turns my stomach now. I was grateful when that began happening. The comment I hear the most is the same as you, “what do you eat?!” Tat one makes me laugh. I say, “REAL food! I make my own stuff from scratch with organic ingredients. What do YOU eat is the question!” They really have no idea. And I didn’t either. I didn’t read labels until I figured out my allergies. The thing I hate the most is explaining how I know I am allergic, how I figured it out, etc because they usually look like they don’t believe me. That’s ok though. I know I feel so much better now. I no longer use my inhaler, no longer take benedryl, sudafed and motrin every day. Blessings to you. It has got to be lots of work with so many different allergies!

  27. I really resonated with your frustrations around people’s “thoughtful” comments.

    My son has autism. He’s going to be 28 this month, and is the most honest person I know, because his honesty is that of a 3 year old.

    One time we were in the grocery store, and he decided to throw a tantrum. As he fell down onto the floor, I moved close, put my foot under his head to keep him from banging it on the floor, and waited for him. An elderly woman, clearly with a vision of what I ought to be doing differently, asked me what was wrong.

    “Nothing” I replied, explaining that he has autism and sometimes expresses himself this way, and he’d be be okay in a couple of minutes after he had a chance to get it out.

    She said “Is that all? It could be much worse…”

    I remembered a seminar I had gone to instantly. A parent shared a very similar story, and I conscripted her response…”Yes, ma’am. It could have happened to you….”

    She realized instantly that her words were intended to make herself feel better, not me. She looked at me, apologized, and moved on.

    You’re right on….i admire how you define your place in the world the way you want it to be, rather than the way someone else wants to define it.

    I wish peace and health for your family.

    • Thank you for sharing that with me. You have no idea what your words mean to me and your story moved me. My son has Sensory Processing and Auditory Processing Disorders. We have experienced tantrums/meltdowns in the store. We all just do the best we can for our families. Blessings to you.

  28. Wow, your life is like ours. My only granddaughter Aimee Lorelei after having blood tests done several years ago after a near death incident with peanuts has 3 full pages of allergies. I only buy meat from our local butcher who gets it from local ranchers who grass feed exclusively. ( hard to do in New Mexico). Almond milk is also our best friend now. I feel your pain and am always looking for more foods and recipes to make for her.

  29. Hey, I read about you in the news and wanted to let you know we are right there with you! We only have three kids, but they have TONS of allergies, we homeschool, and are completely broke after surviving two years of unemployment – and we just found out our house has mold.

    Yes, your family is different and people judge; just know you have our support, at least. πŸ™‚

  30. i know it makes you upset when people(and I am sure some are well meaning) make comments to you and your family…but, then here you are making comments about your diets being better than others….it goes both ways. I know it is difficult to look at others eating foods without any cares because they don’t have allergies and can enjoy milk, nuts, bread, but just know that it will be ok. Yes, I do understand what you are talking about. All 4 of my kids have very severe food allergies and I am always worried about them and they bring lunch to school and to birthday parties.

    • Diets being better is a fact, not an opinion. I am not judging. I could care less what people choose to eat. The scientific fact though is what my kids eat is healthier than what most people eat. I have a friend who loves Mt Dew. You cannot claim that stuff has any value at all in the nutritional scheme of things. However, I would be the first to make sure I picked one up for her if she needed a treat. She likes them good for her. She will tell you it isn’t healthy also.

  31. Have you heard of the GAPS diet by Dr. Natasha Campbell-McBride? This diet can HEAL food allergies and my daughter is living proof of that. Several children in our group have had anaphalactic reactions and can now eat those foods. There is a FB group called Gaps Kids which is an excellent place to start asking other mommas questions. Hope you look into it and it helps you too!

  32. We’ve received diagnosis’ for food “allergies” for my daughter, chicken, gluten, whey, dairy, etc….about 15 of them. For me, I was very challenged by this being an “allergy” since my daughter’s issues were really found in her behavior and digestion. Never a rash, a hive, a swollen anything. I decided to address her issues digestively first. Rather than remove all the stuff and add all the supplements, I decided to just switch her from processed diary to raw diary purchased directly from a farm. We buy milk and cream, cheese, yogurt and eggs from this farm. Talk about a difference! Not only in flavor but in Hannah! Her tummy is better, she’s having regular bowel movements and her “light” is starting to shine.

    We also started NAET/Kineseology treatment with a trusted practitioner for “allergy elimination” treatment. We’ve only had 1 treatment but I can truly say I saw a major improvement in her immediately. She still has a long way to go and we are still doing regular, traditional medicine and therapies…but I am very certain that NAET will make a huge difference for her. Google it. If you are any where near Cincinnati, then you should consider coming here and trying it out. My son’s 3rd grade teacher told me about it. She had allergic reactions that were literally killing her last year that she got tremendous help with.

    • Although your advice on NAET is well meaning I do not have the resources to try that kind of treatment. I appreciate it though and will keep it in mind for the future. My children do take supplements to help, but there is no curing Celiac Disease. I very much appreciate you stopping by though. I will refer back to this as needed πŸ™‚

  33. I’m so sorry for the anger and resentment and pain that you feel (which comes out in your writing, which is great, for you to be able to get it out) as a result of these struggles. I hope for you, grace…for yourselves and for those unfortunate people who so offend you, they obviously need it most.

    • Not anger and resentment. More like frustration πŸ™‚

      I hope you do not think I am harsh toward anyone who comments to me. It just gets wearisome and so I hope that through his some people will reevaluate how they talk to people in a similar situation as me πŸ™‚

  34. My 4 year old daughter has celiac disease as well! I’m thankful she was diagnosed young so she doesn’t feel like she’s “missing out” on much. I feel your pain with the comments from just about everyone. I feel like I’m starting to lose my tact when responding haha. I should probably work on that! People act like her sitting and eating a big bowl of fruit as a snack instead of processed junk from a bag is bad… How do they get all the nutrients they need when they can’t eat A,B,C… Well I am not sure she is missing out on many “nutrients” from chicken nuggets and hamburger helper, I think her fruits, veggies, and free range meats have her pretty well covered but thanks for your concern! Haha. Insert eye roll here. Glad to see another parent who doesn’t look at it as much as a burden as it is just a part of life! Glad to have found your blog!

  35. We were told Kiwi Fruit is a the Latex allergy link not Apricots, not sure if you call that fruit the same as us in Australia, for myself I do have a Latex issue, not sure I would call it an allergy but I can gorge myself on Apricots no probs. My middle child has some milk intolerance which I have to say is harder to manage than my older child who only has anaphylaxis to nut, very seriously and massively high skin prick test readings but doesn’t come across as much exposure as the milk for the other child.

    • I am just relaying what we were told. I have no clue the science behind it. Someone else told me it was bananas that were the link. Ah, who really knows? We are all so connected anyway.

  36. Prayers to you! I am a mom of 7 that also homeschools a few of them and we have 2 that have pretty extensive food allergies! It is something that you just do and I will put you on my prayer list! I am sure you have everything else down to manage because that is what us moms do ha! But we all could use some extra prayers! I saw that you went on a Toyota field trip. Are you in Indiana? That is where I am! Amy mother of 7 in Indiana

  37. This reminds me of my daughter. She had several severe allergies. Milk, eggs, corn, peanuts, soy, banana. (Along with environmental things). I would most of the time have to bring her special things for parties at school or friends, and I would always get…. Oh she is lactose intolerant? Ummm NO! She is allergic. It was one that was so bad that there wiped the test of her back in 5 minutes rather than the normal 20. I do remember at firsts asking the dr. What am I going to feed her? How will I make her first bday cake? It’s amazing what you can and will do to make sure that your kids will feel like they are not being left out and are not deprived of anything. Applesauce sauce instead of eggs in a cake… Who would have ever thought that would work? Well it did and it tasted pretty darn good too.
    It was always nice though when peoe would seem concerned and they really wanted to try to feed her. It was jut new too them. I guess I couldn’t blame them, it was new to me once too.

  38. My sister is in the same situation. My niece suffered from horrid excema and it was determined that food was causing it. AND a peanut allergy. She has a limited diet as well but fortunately can eat coconut as well – which is a life saver. My sister suffers from psoriasis and she too tries to heal her gut with the right foods. I know she has spent hours at the store and hours cooking separate meals and spent $$ on specialty bread so my niece can have a “sandwich”

  39. Another one who can relate. My husband and I don’t have the severity of allergies that your family has, but I swear we have some odd ones. I have oral allergy syndrome. And thanks to my latex allergy, if I’m standing near someone peeling a banana, I run the risk of anaphylax shock. We’ve also learned to read labels even more closely after my husband got sick after having barbecue sauce that had anchovies in it.

    Oh, and I can trace my allergies back through my dad’s side of the family πŸ™‚

  40. Wow that really does suck. So, in short, you pretty much eat the Paleo Diet. Fruits, veggies, meat. I think (no, I KNOW) I could make do without certain foods if it was a medical issue. What would be the hardest thing, I think, is the fear. The constant, wear-you-down state of alertness to make sure nothing untoward crosses the kids’ lips, or your threshold. Take care of yourself (((hugs))).

  41. Allergies and diseases in my house are to a list to be made. My little sister is allergic to dairy (we don’t know if she’s allergic to it, lactose intolerant, or if she suffers from Chrone’s disease like our father but she’s only 13 and they won’t test her yet), beef (again not sure if she’s allergic or has Chrone’s), and shellfish (she stopped breathing when she tried shrimp so this is definite allergy). Lucky for us, she doesn’t really like beef or shellfish that much (the exception being hamburgers and shrimp), and the lactaid pill supplement thingie lets her eat ice cream and yogurt in moderation. My mother’s allergic to nuts and my father suffers from Chrone’s. Which is his small intestine believes there is a bacteria that isn’t actually there and so in basic it is eating away on it’s self. He can’t have a lot of foods so I would never imagine going to your family and saying “What do you feed them?” or “How do you manage?” because I walk through the grocery store with my mother watching her look at food labels and trying to figure if my sister, her and my father can eat it. I’m the only one who doesn’t suffer from food allergies although I do have hypoglycemia which adds to my mother’s shopping. We look at not only sugar content but protien content. So I don’t understand why people ask those things when they don’t want answers. Sorry this was so long, I just…. I understand where your coming from even though I am only 16. Best of luck to you and your family, Ms. Andrea. May god bless you and yours.

    ~Dylan ❀

    • Dylan,
      Thank you for sharing with me! Wow! That is a lot for one family to handle. y’all definitely have my empathy. I know too well that food is serious business. I pray that your sister doesn’t have Crohn’s Disease.
      Peace and blessings to your family

      • Aww. Truly it’s nothing compared to your families allergies! And thank you. We are all praying but once she turns 14 this summer she can be formally tested so yay and nay to this! Thank you for the prayers and I will be praying for your family as well!
        ~Dylan

  42. Why would you feed your kids gogert and string cheese from your popular shopping trip with all these said allergies? And then yourself drink peach tea when you have issues with stone fruit. Me thinks someone is a fibber about something.

    • Dear Pants on Fire,

      I am deeply sorry you must have been very tired reading this. I also tend to read things incorrectly when I am sleep deprived. You have my full empathy. Since you misread some information, and some information was not in this letter, I would very much like to clarify if you would humor me.

      I never once said I had a stone fruit issue. I, in fact, love stone fruits and eat them as much as I can when they are in season. I DID say my SON has a stone fruit issue. I also mentioned he has outgrown most of it (yay!) except his ability to consume apricots, not peaches but apricots. Of course that really doesn’t matter since he was NOT drinking peach tea anyway. I did mention, in the paragraph about him and stone fruits, that ” Interestingly this is indicative of a possible future latex allergy…. My grandma had a latex allergy and I am very sensitive to it,” meaning I am sensitive to LATEX, not stone fruits. Now let me clarify, I CAN be in contact with latex, I just can’t, for example, wear latex gloves etc for prolonged periods of time or I get hives. Thankfully that isn’t an issue in my every day life so it is quite easy to function.
      I do hope that I was able to clarify this pesky misunderstanding.

      Now onto the question about dairy. Do you really think I gave dairy to the child who would quite literally die from it? I am looking at her living being as I type this so I assure you she had a banana and NOT the dairy items mentioned. The sensitive one also had a a banana, but had she eaten the dairy she would not have died as she is only sensitive to it and “only” gets some diarrhea. I do hope that wasn’t too much information. I am merely clarifying for you since you so “kindly” inquired.
      My boys CAN have dairy, and so can I so *I* picked the 2 items. I picked the only brand string cheese they had in the store and the only to-go yogurt as this was a snack for in the car to tide us over until dinner.

      You see, this day was a full day of running errands for us. I had brought food for lunch and anticipated being able to stoop at home before a meeting that night, but time got away from us and my kids (and myself for that matter) were hungry and I could see we needed something to get us through the hour and a half meeting. Especially since it would then be another 20+ minutes home and then the actual time it would take me to cook the dinner I had on the menu plan.

      So all said, I am not a fibber. The children ate the foods they could eat and not the ones they could not eat. I do NOT have issues with stone fruit, but rather latex, as you misunderstood what I had written. As I mentioned, I have done that before (misunderstanding something I am reading) and I understand how it happens.
      Hoping there are no hard feeling, but I do suggest you get a fire extinguisher for those pants of yours πŸ˜‰

      Kindly,
      Andrea

  43. Thank you for sharing your story on dealing with your children’s food allergies. My almost 7-year old daughter has 10 food allergies, although we have been able to add cane sugar back in moderation. I think the most common thing I get is “Well, I’m sure she’ll grow out of it” and ” Well I have heard that peanuts can kill but the other ones she has aren’t that big of a deal if she has a little, right?”
    I think the one that is most confusing to me is when people say “I don’t remember any kids having food allergies when i was growing up and now it seems like every kid has them.” Not ever sure how to respond to that one…

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