I’ve been meaning to write a post about this for quite so me time. But just haven’t known which direction to take or if I should even be talking about this. But, this is my blog and these are my thoughts so I decided to let go of worrying about ‘if’ I should chat about this.
So here it is.
It seems everywhere I turn, people say, “O you’re so lucky you can’t eat dairy or gluten or packaged foods”…”No wonder you’re so skinny”…”I wish I had your food intolerance’s”…
What?
Seriously?
Yes. Seriously. These are some of the common words out of people’s mouths when I tell them that I’m intolerant to sulfates, most dairy, soy, grains, oils and gluten.
It really struck me last week when I was out to dinner ordering chicken with a side of vegetables and told the server the usual: no oil, no dairy, no marinades, no dressings, no sugar, no gluten. She turned to me and said very sarcastically, “Don’t worry, there won’t be any FAT in your dinner.” Wow. I was shocked. Was she serious? I looked back at her and said actually I am intolerant to these foods and I’d like a sliced avocado with my meal. She then apologized as she realized she spoke too soon and was being quite rude.
This isn’t the first time a waiter or waitress has commented on my order.
To be honest, it happens all the time.
It once bothered me.
Not any more.
And that’s why I’m writing this today. To let you know that you’re not alone. When your body rejects a food or an ingredient in a food and you have a bad reaction- You are allowed to say NO to that food and stay away from it. Don’t feel bad or let other people make you feel out of place or odd.
I often have to meet friends after dinner if they are dining at a restaurant that doesn’t have something I can eat such as Italian, Chinese, Thai, etc.
There’s nothing wrong with this. I’d rather feel good eating my food and then meet friends rather than suffer through a meal only to get so sick I can barely move and leave the restaurant.
I was recently out to dinner with a group of people whom I had just met. I ordered my fish and asked that the dish be served atop vegetables instead of pasta. I explained to the waiter that I am gluten-intolerant and cannot eat pasta, therefore I’d greatly appreciate if they could accommodate me with vegetables. Not a problem. But, when it came to the woman across from me to order, she ordered the same thing and said to our server, “Actually, I don’t want pasta either, I’m going to be good like Amie and not have the pasta because I don’t want the carbs.” I was Shocked. Shocked. And honestly, a bit taken back. It was shocking to hear someone say I was being ‘good’ for not ordering the pasta. What was I supposed to do? Order the pasta and get so ill that I can’t leave the restaurant? Moreover, since when is pasta ‘bad’ and since when are carbs ‘bad’? I was so upset by this and the way that our society views foods as good and bad.
We all eat what we want and what makes us and our bodies feel good. If feeling good means having a bite of dark chocolate or a scoop of ice cream or a piece of cake or a juicy steak, then go for it. Just eat it in moderation. And then simply stick to your clean eating.
Many people think my way of eating is too strict. But it’s not me that’s putting these rules onto what my body can eat and can’t it. It’s the reactions that are caused by all these foods that create my way of eating. I dabble with nut butters and nuts and seeds but have to be careful because if I eat too much of these foods, my body reacts.
Last week, for instance I tried to have two rice cakes with nut butter and cinnamon. Bad reaction.
I also recently tried having a snack of a banana with dark chocolate chips. Bad reaction.
Arg.
Frustration.
And are there days when I don’t care anymore and all I want is a bowl of cereal and crackers and ice cream?
Yes.
And about 3 times a year I do.
And I regret every second of it. Because I’m in pain and swollen for the next 48 hours after I indulge in these foods.
But for some reason, my body wants it and so for these few times a year, I cheat.
Why? Because I want to know what it feels like to be able to eat those foods. I think, ahhh it must be great to be able to just sit and grab a snack and eat these fun foods…
And then I seriously regret it when I’m in bed in pain unable to move. Yuck.
I’ve been teased and made fun of because I cannot drink alcohol and because I have a difficult time eating out (most restaurants use many canned items for meals along with marinades, oils, etc.) but I just shrug it off because my life is about ME.
It’s about feeling good.
And ya know what? Tease me all you want. Go ahead.
It doesn’t bother me.
Why?
Because I’m confident that I am healing.
I have my body to thank for telling me what foods I can and cannot eat.
The gut inflammation was and still is so bad when I eat the foods that I react to. These foods simply are not worth the pain.
But do I miss them?
Heck ya.
Do I wish I could sit outside at the outdoor cafes and eat a cheeseburger and have a beer? Yes.
Do I wish I could simply leave my apartment for the day not having to pack snacks and food to eat when I get hungry?
Do I wish I didn’t have to pack a lunch every day for the 6 years I was in corporate America?
Do I wish I could go on a date with a cute guy and have a slice of organic pizza and then stop by a cute little ice cream shop for a scoop of chocolate on a wafer cone?
Do I wish the person sitting next to me on airplanes didn’t tease me for eating a whole avocado with a spoon in mid-air during my flight?
Do I wish people would understand what it’s like when you can’t simply just stop on a road trip, vacation, walk around town, etc. for a bit to eat anywhere?
Do I wish I could come home to my apartment after an exhausting day and just pop a (healthy) frozen meal in the microwave or stop by the million take-out spots in Manhattan to pick up a bit and get on with my night?
Do I wish I could sit and eat cute little crackers with cheese cubes and enjoy a glass of wine for a pre-dinner appetizer?
Do I wish I could not have to call ahead to hotels to be sure I have a microwave and fridge in my room?
Do I wish I didn’t have to tell white lies to get out of eating at swanky restaurants because I’m not spending $50 on steamed broccoli while everyone else boozes and eats a 5 course meal?
Yes.
I do.
I do wish for all these things.
But I also know that I am special. Therefore, I can make my own burgers. I bring my little cooler on the airplane. I eat at home before meeting friends out on the town. I get cozy in my hotel room making eggs for breakfast and chopping up veggies in Ziploc bags for snacks when traveling. I love packing a brown bag lunch. Why do I love all these things? Because I’ve never known it any other way.
So I just don’t know what it’s like to pop into a restaurant and order anything or go for a road trip without food on hand, or fly without a 3 course homemade meal or walk around Manhattan on a Saturday afternoon without a bag of snacks on me.
I know some day I’ll be able to eat more foods as my body changes.
I always enjoy a bit of dark chocolate and a few almonds for dessert.
The worst part is that there are so many healthy foods that I can no longer eat.
Nothing out of a can, nothing containing sulfates (which is in everything, pretty much), very little nuts, seeds, nut butters, no oils, very little dairy (I can digest Greek yogurt and a few cheeses –very exciting for me), no gluten, no grains, no beans, no sugar, no soy (which is in everything as I just learned there is soy in a Lipton tea that I’ve been drinking).
Crazy, isn’t it?
But what has kept me alive and strong and positive is that I know my intolerance’s will hopefully one day vanish.
Did I get excited to buy ricotta cheese last week and enjoy a few spoonfuls hoping I would not get sick? Yes.
Did I get sick? Yes.
So sad.
But I have to focus on what I can eat and what my body can digest. And I’ve grown to love these foods.
What do I love?
My veggies, my avocado, my eggs, organic turkey and chicken, my homemade salsas, guacamole’s, dressings and marinades. My Greek yogurt, my ricotta cheese and a few other sharp cheeses (Yeaa), my sea vegetables such as Dulse and Nori.
And some others…
As many of you know, on December 3rd of this past year I ate kale from a farmer’s market, I became very ill- suffered from many, many parasites, pathogens, bacteria overgrowth cases, C-Diff colitis, dysbiosis, leaky gut, mercury accumulation and so munch more. I was on disability from my job, on pain killers and steroids for 3 months.
Then, I woke up and realized I don’t want to live my life this way and I switched from Western medicine (Steroids and pain killers and doctors who wouldn’t listen to me) to Eastern medicine working with an M.D. specializing in toxicity and stomach issues. It was then I relieved myself of steroids and pain killers and have been healing myself the natural way ever since.
I’m telling you this story because you are not alone. I woke up every morning from December thru August in chronic pain. Chronic.
What hurt the most during these past few months, you ask?
The fact that my corporate job and western medical doctors thought it was all ‘In Your Head’.
That’s what they told me.
And honestly, that hurt more than the pain in my belly.
So much more.
My pains were real. They are real. There is nothing in my head.
But this caused me so much pain. I could barely sleep at night thinking that my co-workers thought I was out having a blast on disability when I was in the hospital in chronic pain.
Why did they cause me so much pain? Because it made me feel Alone.
I recall waking up thinking … No one is helping me right now. No one.
I exhausted all doctors in Manhattan, New York State, New Jersey and Philadelphia.
No one had an answer.
Until I found my medical doctor whom I am now working with. Who found the key to the lock.
He discovered I am missing a gene. I was born without a gene to absorb Folate.
And, I was suffering from mercury accumulation in my body.
Now, Western medicine tested my heavy metals many, many times but Western medicine only looks at the heavy metal levels in your blood.
Eastern medicine, however tests the mercury in your Body, your Tissues through a urine test.
And that is how I discovered that nothing was in my head.
My instincts were right.
Dead on, to be exact.
So now, I just had all of my mercury fillings removed—long process to say the least.
And, I’m waiting on the results of my mercury levels now that they’ve been removed.
Then, we will take a look at my chelation schedule.
It’s been quite a road and a crazy journey.
But I stayed strong. Stayed positive.
Why?
Because I wanted to fight it to help people like you and me fight it, too.
And all this time…all those days of pain…what’s kept my head up high?
My blog.
My passion for helping people like you.
Knowing there is a light at the end of the tunnel.
And you’re almost there.
xo
It’s hard to say
I’m in a big hole at the moment. Having been fighting ‘CFS’ for 13 years – finding out I had adrenal gland issues/ hormones – being treated and going up then down again – so the ‘CFS’ type symptoms are still there, but also this bad gut that I have had for years and years, 24/7, I never get a break…. I have tried so many diets, intolerance tests for foods, eastern medicines, supplements, heavy metal tests… I cant figure out what is affecting me since I never notice any difference in the chronic pain and symptoms. Are you able to tell us who your doctor is? I am always looking for new paths…
Yes of course; my book Eating Clean tells you of every doctor!xxx
You’re wonderful! I’ve been though (all alone) a very similar experience and yes, I’m going to say across the board that it’s an overload of toxins. It’s a rabbit hole. Some choose to go down it.
Thank YOU Stephanie!!!
Ya know, Amie, I just stumbled into your blog. And you blew me away. I read a few of your posts and its as if I was led to you. I know the distance from others that food issues can cause; I understand the isolation, and the strange looks, people rolling their eyes, “There she goes again, looking for attention” type of comments, the impatience from other diners with me, and from the waiters as I ask them questions, trying to find something on the menu that is edible for me. I understand trying to travel with this issue, always ordering (and many times paying extra) for the little fridge in the room, and then not being able to go down to the breakfast buffet because its loaded with soy filler in the sausage, and gluten-filled waffles, toast, and pancakes. Then you see someone take a couple of pancakes and then they use that same spoon or fork to dip up their scrambled eggs, and you realize they have just contaminated the eggs with gluten.
I have gluten intolerance that has led to wide-spread, system-damage for me, causing such goodies as Atrial Fibrillation (eating gluten causes me to have heart palpitations, which can lead to an AFib attack, which can lead to strokes). Macular Degeneration appears to be developing in one eye, and I am losing my hearing (which a regular ear doctor simply blamed on my age (66) without even doing any tests . Gluten has damaged my thyroid (leading to the AFib). It also can cause cancers because of the damage it does to one’s body, which leads to a damaged immune (lymph) system (I had a lumpectomy for DCIS breast cancer last October). I can’t tolerate many foods: dairy, legumes, cruciferous vegetables, certain grains, soy; the list goes on. And even tho I am greatly changing what I eat, it seems there are more and more foods I cannot tolerate, perhaps because giving up the gluten has made other intolerances that I’ve always had, become more identifiable as being from something other than gluten.
But, your blog has helped me see a light that was glimmering somewhere in the back of my mind. After reading about your “dad issues”, I was able to let the issues with MY dad go. He’s been dead since 1990, and I’ve been furious with him since way before that. Tonight, I was able to see that he, also, did not “get me”. He couldn’t; he just couldn’t because he was so wrapped up in himself.
You were right in that day’s blog: its not worth me wasting tears (and all these years) living in pain for someone else’s issues. THEN, I saw that its also not worth it when I use my anger and pain (at whatever issue, not just my dad) to take out MY issues on others. Like you said, “Life is simply just too short” for that. My answer? Forgive them all. Just forgive them all…and forgive myself. You have helped me see this; one of the biggest stumbling blocks in my life. Now, finally, I can begin loving myself. Now, finally, I can see where all the health issues are a bass-ackwards blessing, and I can let go of the anger over those, as well. Finally, I can appreciate myself for what I truly am: a spiritual, caring person who has simply been confused about how to find that road less taken.
Hubby and I are in a smallish Midwestern town, but I am going to try to find the type of specialist you are going to. The regular doctors here have also told me its in my head, its my age, its because of menopause, etc….any excuse they can think of to cover up the fact that they have NO clue what the medical issues really are; they do not “get it.” They have laughed at me, accusing me of getting all my information off the internet, totally looking down their noses at me because I dare to educate myself against their stupidity and ignorance. They treat me as if I am stupid, totally not understanding that I, too, attended college; I really do know how to look up reliable information. One of the gut doctors even told me in a very snarky way that my symptoms were NOT related to gluten and that I had “obviously” gotten my info off of an herbal website (I’ve never in my life looked at an herbal website for info on gluten sensitivity); if my multiple symptoms are not related to gluten intolerance, then why did the AFib symptoms go away when I went totally off of gluten?
But, I see now that it doesn’t matter what those (so-called) doctors thought. I’ve known all along that I needed another type of doctor, but had no clue who to look for. Now I know where to aim my search.
I just wanted to thank you so very much for your efforts. You ARE making a difference, a HUGE difference. I am finally figuring out love over fear (and anger). You have let me know that its OK to be just exactly who I am.
Thank YOU so much; you just made my entire WEEK! Thank you for everything!!! I am so happy to hear from you and people like you make me smile. Thank you for your kind words and your support. Sending you a HUGE hug from NYC. Have a fabulous weekend, Cheryl! xoxx
Just found this post today. Beautifully put! I also frequently get the comment, “I wish I had your food issues/stomach so I could lose weight!”
I usually answer, “And I wish I had your stomach”.
Its usually shocking enough to change the subject. My health problems caused me to loose weight, and it is so socially unacceptable for a woman to want to gain weight. You really find out who your supportive friends are when illness strikes!
Hi, I just found your blog today and this is the first entry I read. Your post is truly inspiring and really hit close to my heart. I also suffer from multiple severe allergies and intolerances. I wish I had had your grace and knack to speak up for myself in MANY situations and not let such ignorant comments affect me so easily. You give me the courage to start trying to do that now.
Thank you.
You just MADE my day Julie; thank you darling. You are so kind. Sending you hugs from NYC. Thank you for your kind words. So happy you found my site and I can’t wait to hear from you again. Stay Positive!!!! Keep believing and remember, in every situation choose LOVE over fear. You can do it. oxoxx
Wow – you can eat avocado, asparagus, and brocolli! How did you figure out the sulfites? I’m getting ready to start a rotation diet, because am still sick after eliminating 25 foods. Might make a deal with the devil to be able to eat more fruits and veggies safely. I do believe it’s in my head, and blood, and bones, and skin…and that the foods were making me mental…crazy, and depressed. For years, was told to go on a anti-depressant, in my heart didn’t believe it was right. Started eliminating foods at 25, and now am 50. This year, eliminated soy lecithin (all lecithins in food actually) and yeast extract (before I knew what they REALLY were) and most processed foods. And after a couple months, I could tell my brain and body were changing. Now I found you- thank you for sharing everything.
Thank you Dawn; so great to hear from you! Hope you are feeling better!!!!
I wish I could convey what a blessing discovering your blog was for me tonight. I saw a link on Pinterest to your Cinnamon Bread recipe and went to check it out aka scour the ingredients list to determine whether it was something that would actually fit into my food restrictions. I have all the same as you, and recently I’ve tried to reintroduce nuts… Big mistake as I’ve had killer abdominal pain all over again. The fact that you have been there (the pain, the medical maze, all of it) meant so much to me and even more as I am having an especially “bad” day. At 25 I have been diagnosed with fibromyalgia and have had to go on disability at work as well- something people just don’t understand. My parents are amazingly supportive but my friends and family just don’t understand what it’s like to be sick all the time and how hard it is. All the countless doctors appointments, trying different meds, nutritional supplements, alternative therapies- that alone is exhausting. But reading your words felt like reading my own and it comforted me to know that I am not alone. I took a break from my blog because I’ve been too sick and I didn’t know how to address all of it but you are such an inspiration. Can’t wait to read more about your journey and how you are doing now- very well I hope. Thank you again for your words- it truly was exactly what I needed to hear.
Awe; thank you Emily. Sending you the BIGGEST hug. xoox
This was one of the most beautiful and possibly life changing blog posts I have ever read. I commend you for your strength and persistence in being an advocate for your own health. You are truly a role model and someone I highly respect. Bravo!
Awe thank you Mallory!!!!
Amie, Thank you for this beautifully honest blog on living with food intolerances. I recently found out I am missing the same gene you mentioned and have been gluten sensitive for about 8 years, and now avoiding sugar, all grains, gluten, and trying to avoid potatoes. And legumes. Found a great Naturopath who lives in Nyack, NY. I think I had a TIA in December, which led to a hospital visit, lots of tests but no answers, and now myND and chiropractor have been helping so much. I am 52, but want to start a new career in something related to holistic health after my experiences! Keep up the good work!
Awe; thank YOU Susi! So nice to hear from you; thank you for your comment and for taking the time to write. You are amazing and I do this for people like YOU! So great to hear from you; thank you again.
Have a wonderful night!
What a great post. Our infant daughter has a genetic defect called Glutaric Acidemia Type 1 (GA-1), and she is unable to eat proteins. Now she’s on a special formula, but as she gets older, she’ll have to be on a strict diet as well. It’s encouraging to see someone who has a lot of dietary restrictions thrive. And while what you have and what she has are completely different, I have come to realize a lot of folks have dietary issues and they can be fine. She’s actually doing quite well on her current mixture of formula and tolerating proteins so much that they are increasing them. Her strict way of eating, even at this young age, has made me look into healthy eating for myself and so I stumbled upon your blog. Thanks for your encouraging attitude!! Best to you 🙂
Thank you Anne-Marie; so great to hear from you! So glad to hear your daughter is doing well and I wish you all the best. Have a wonderful weekend and thank you again so much for your comment! Hope to hear from you again soon!
xoox
Hi Amie,
I have suffered with “intestinal issues” for years. My internist said I have Crohn’s disease and/or gastrointernitis?? How would I find out if I may be allergic to gluten, soy, dairy etc.? I do not take any meds but simply make it through my “incidents”. I would greatly appreciate any advice you may offer to me. Have a blessed Day!
Thanks Laurie; I would recommend seeing an Integrative MD who can run tests on you for those foods and also do an ALCAT food sensitivity test on you. Integrative Medicine focuses on healing the body without using drugs so it may be a good option for you. Wishing you good health and sending you lots of hugs. oxoxx
Have you read JJVirgin’s diet book? She recommends that you give up the 7 foods that cause most problems for 3 weeks to determine which ones affect you. They are soy, peanut, corn, dairy, sugar & all artificial sweeteners, gluten, and eggs. After that you introduce each back one a week, keep a food journal and determine what you are intolerant to. Hope it helps.
Thanks so much Carole; great to hear from you!I haven’t read this book but I’ve heard of JJ Virgin’s work and I already avoid all of those foods but thank you so much for your comment! Have a great night!
So nice to hear someone who sounds like myself. I had migraines for 35 years until a wonderful Dr convinced me to eliminate a ton of foods. And it works. I can tie any migraine now to eating out someplace new. I thought I was a healthy eater all my life. Even a vegan in my 20s. But, for me, it was a lot more. I can’t eat any nuts, yogurt, soy, mushrooms, onions, almost all cheeses, many fruits, caffeine, anything artificial, preserved, yeast, sweets. I CAN have gluten. So I eat a lot of salads with a fresh, plain protein. I eat dinner for breakfast most the time. But I am migraine free. Yeah!
So glad you are feeling great Dorie; it’s all about feeling good and eating what makes you feel great. Thank you so much for your comment! oxox
Oh girl, THANK YOU! It’s so good to know there are others out there… though I guess not for your sake 😉 I’ve been suffering this way for years, and unfortunately am also deathly allergic to a lot of fruits, veggies and most spices as well. Within the next year we should be moving to Europe from the southern US (Where they can’t find anything “really” wrong with me) and can’t wait to be able to eat a bit easier. It is a great frustration when people try and help by giving you “healthy” options thinking that’s the point and you still can’t have it. I even had a lady at the deli the other day tell me that I really shouldn’t be using a deli after asking her to wipe the blades down because of spices from previous cheeses. She told me to get packaged. Really? I had to go into the whole explanation about starches and such.
Thanks for venting 😉
Tiffany, so great to hear from you! Keep your head up. I’m happy to help you anytime I can. I agree completely with what you are saying and just stay positive and keep your head up. Everything will work out and you will heal. I struggle from time to time still with my health and sometimes it seems no one understands. I feel your pain. xoox
Have a great week and remember I’m here anytime!!