Hi friends.
Just because my blog has been down recently doesn’t mean my journey to make people aware of this disease has stopped. Actually quite the contrary, but I will share all of that at a later time. It also hasn’t gone unnoticed by me all the backlash this community gets regarding this disease. In the past few months gluten free eaters have been called DICK WADS (Jimmy Kimmel); had a pie thrown in the face of someone stating he was allergic to gluten as a skit (Jimmy Fallon); and more recently have been slammed when Dr. Oz said gluten free is a big scam.
While I completely understand that the fad nonsense of it all is a big bad joke to many, to others like us celiacs, autistic and any autoimmune disease fighters it most certainly is not. I have met all three individuals and cannot imagine they meant to hurt a community but unfortunately it does. I speak about why this is so very harmful, especially from such influential people in my book due out this May, so I will not get into the full sermon as to save pages of explanation.
What I will say is, IT’S TERRIBLY HARD! Terribly hard to live in a world that believes you’re a joke. Terribly hard to be thought of as a DICK WAD or a pain in the ass or a complainer or picky or OVER EXAGGERATING (as I was called recently by someone who was staying in my home. Then realized all I actually have to deal with to live, retracted that statement.)
REALLY?? WHY? It saddens me to my core.
And then I get a letter like the one below and I realize that there are SO MANY hurting. So many that need guidance, a friend, an ear and a road map to their future. It’s these letters and interactions that I have at the Bakery every day that make me continue to SCREAM this message out to the world. I thank you you for your letters and I will continue to do my very best to help us all.
BTW – I contacted all three media outlets with a personal note, my book and treats from my bakery explaining why these statements are hurtful. I pleaded to bring me on as a guest for my upcoming book to at least have ANOTHER opinion from someone actually living with this disease – two responded NO Thanks, and the other NO REPLY AT ALL.
I would like to bring this letter and this little girl and the many children who suffer with this and have the media tell them they are DICK WADS and they don’t matter.
I can’t see that happening…can you?
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Dear Jennifer,
My daughter (Age 7) was recently diagnosed with Celiac Disease.
Above is the latest photo I took of her because I wanted to capture this moment of her life. The moment where her entire world changed. The road ahead will be at times rough, but I want her to know I am always here for her. Even if at a little distance, I will always be here for her.
Just wanted to say THANK GOD for your existence and your book. Cannot wait to have it in my hands and read it.
As a mother, it is scary and frustrating at the same time to face this disease in someone you love more than your own life. Our precious daughter.
So I passed the stage of asking WHY and now I am only interested in helping her. Now the question is HOW. Not only with her diet but with her self confidence. I want to be able to answer the question she has asked me several times: Why am I different than all the other kids? And with a big smile (hiding my shrinking heart) I say: Because you are strong and you are special. You are here to help other kids eat healthier and even maybe many kids with CD.
From Florida we are sending a grateful hug.
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When she is 9 send her out to California to our Celiac Camp (free of charge) 3nights/4days, we will take GREAT care of her – she will have too much fun and eat like Gluten Free Royalty!
Wow!! Very kind of you to offer this to her. I hope this makes her day.
WOW Elaine Taylor!!! I just mentioned your offer to our Sophia and her heart smiled and her eyes even got a little teary! I will definitely take you up for this one in 2016! THANK YOU for giving us hope. Hope that she can feel NORMAL and treated as royalty without having to worry all the time. This is tough, especially when people forgot to be compassionate and tolerant with people in need. Thank You again BeaByers (Sophie’s mom)
Sorry to hear about your daughter. I’m 65 years old and almost died because I was put on a “bland” diet that included toast, “cream-of-wheat” cereal, and milkshakes (lactose intolerant). I was told my bowel symptoms were due to a nervous stomach and my unrelenting fatigue was psychological. I finally figured it out on my own. There were no good tests back then. Every single time I have put celiac on a physician’s intake form, I’ve been told either “celiac doesn’t exist” or “you don’t have celiac”! Thirty years ago I was sitting next to a gal in a college class who “bolted” out of the room during a lecture. Later, I asked her if she was okay? She told me her symptoms, the treatments she had endured, etc. She had been told she couldn’t have children. I told her about celiac. She called me about a year and a half later, saying she had tried all of my suggestions, was “cured” unless she cheated, and delighted to be pregnant! She had a boy! You and your daughter are lucky to get the diagnosis while she is young. It is a lifestyle change, usually for the whole family, and takes a bit of getting used to but it’s worth it! I also wanted to tell you that my last name is also Byers. My father was probably celiac as well. Does it run in your “Byers” family? Wishing you and your family the best of health. D
Hello D Byers!
I had not read your post until now. Thank you for your words and, yes, I am really happy Sophia was diagnosed so early. It is a tough diet for a little one but at least she was diagnosed early enough to get used to only and only GF products! Yesterday she told me she would like to be a chef, and create recipes that celiacs and non celiacs would definitely enjoy. That gives my heart HOPE.
Surprising to me to find another Byers (My husband’s family name). Celiac does not run in his nor my family…it is really odd.
Be well and thank you again for your words!
xx
Bea
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JaimeI understand the arumegnt of your blog. However, I wonder this: do you use things like coconut oil? or any oil of any sort, or butter when you cook? Because if you do, by your definition, that would be non-paleo/primal and thus make you simply grain-free . I see the basic tenants of your arumegnt over and over again on many primal/paleo sites, but I find it odd and contradictory that most people who consider themselves primal/paleo use oils- which a caveman would not have used because they would have lacked the ability to figure out the extraction process. Not to mention, all oils/butters are, by technical definition, processed foods. Thoughts?
What a wonderful gesture! i am sure it will make her feel much better to know there are other kids like her. I wish there were celiac camps for us adults who are struggling!
You’re an inspiration, Jennifer! With your book coming out so the public is aware what CD is about. How awesome! You’re one of my hero’s! Keep the crusade up and many warm hugs to you!
My daughter was diagnosed in second grade, as we begin the final stages of seventh I no longer look at her as different- she eats EVERYTHING an average teenage girl would eat! sure it’s gluten free & she usually brings her own snack but that’s the extent of her being “different”, make-up well she buys her at Sephora because they have a line of GF makeup ( most people don’t check that)… The one thing she faces right now is her menstral cycle, most of her friends are getting it & she isn’t & most likey won’t for a few more years (I try telling her she’s lucky,but she doesn’t get it just yet). It breaks my heart to read moms say “why”… In a world were young children are leaving this planet at an alarming rate from cancer be thankful you only have to watch the ingredient list & deal with the occasional very painful stomach ache( not down playing that in the least) I cringe when I hear new clients say “it’s gonna be so hard” it’s NOT! Slow down, use your phone and your good to go…it really is that EZ…enjoy life & one of Jennifers GF cupcakes..
Hello Amy, I am happy to hear it is so “EZ” for your daughter. When you are first diagnosed and never heard the word Celiac ever before, it is scary and you do wonder WHY. Especially when nobody in your family (or anyone you know) suffers from it! Our Sophie is a trooper and is learning to live with it and, just like you, we are grateful to know it is treatable with diet. We are aware of the many children living plugged to machines, with life threatening illnesses and painful treatments and, believe me, we pray for them and their families every day. But learning to live with CD in a society that is not understanding about this disease, so intolerant with GF requests and not compassionate with celiacs is sometimes difficult. It is a learning process and we are learning little by little. Thank you for the info about Sephora! BB
I agree with your comment. I am an adult diagnosed (finally) 2 years ago. With all the other horrible misdiagnoses I received, Celiac was a relief. It was’t terminal. One of our daughters was chronically ill with kidney problems from the age of three. The best advice we received from one of her nurses (after nearly losing her) was to NOT treat her like she was different. It will cripple instead of letting a disease be a gift in making her stronger. Don’t feel sorry for her.
Well, I’d like to add that each person’s Celiac symptoms are different. While diet is the main component to treatment, this disease can be life threatening. It is an autoimmune disorder. I’ve met many Celiacs (myself included) who have almost died from complications due to this disease – including trips to the ER. Some of us have to carry epi pens… I’ve met several Celiacs who were diagnosed due to bladder cancer. My uncle died of esophageal cancer & had he had a proper diagnosis early on, he might be with us today. Something to think about…
Hi Erin, congratulations on your blog. I was amzaed to read and see all the things you share and it’s comforting to know that we have the resources to live a happy life being gluten free.I’m 25 years old, I live in Brazil (Belo Horizonte) and was diagnosed earlier this year. It didn’t came to me as a shock because my mother was diagnosed with CD in 2006 and we’ve been very cooperative to her struggle on seeking a healthier and happier life style ever since.In Brazil all product packages must contain information whether it has gluten or not, which helps me a lot at the supermarket. Literally any product you buy in Brazil will have information about gluten. But gluten free products such as cakes, bread, cookies, pizza etc aren’t tasteful at all!The only brands of Gluten Free beer we can find here are Estrella Damm Daura from Spain and Celia from Czech Republic. Both are very good but kinda expensive.Anyway, I just wanted to share a bit of my experiences here. Hopefully I’ll visit NY soon to check out those amazing places you’ve listed. Thank you so much for that.All the best!
A lot of people say to me I don’t know how you do it, live, fight, still stay positive (although I haven’t been lately ) struggle surgery after surgery, test after test, I have Crohn’s very severe. And I say because I know there is always someone going through something worse especially children! I know how hard I have it, but I couldn’t imagine a innocent beautiful child going through it! I thank The Lord my daughter and so far my granddaughter show no signs of any auto immune! Funny drs told me in 2005 the ONLY link to people with Crohn’s is some form of a traumatic-childhood??? Because I did I just assumed it was the truth! My heart breaks for any child going through this. The blessing is they will not go through as many years misdiagnosed and have some form of answer. A lot of damage has been done and it angers me so much that huge food companies and our government would rather make a dollar then just produce wholesome food for us. I swear I was ready to go buy from the Amish as early as this am until our beautiful advocate Jennifer tweeted with me! I know you’re a very busy woman, and as I lay on my couch with no energy, hurting, itching, nauseated, running back and forth to bathroom, barely eating anything because it hurts so much afterwards, taking my twice a month chemo and doses of prednisone and other drugs that make me feel toxic inside….I thank you for investigating because I don’t have it in me to. Ps I bet Rachel Ray, Ellen, Wendy, The Talk, The View and the food channel will have you on to help get the word out. I pray these powerful men will never have to go through what we go through! Sending you blessings and lifting you up in prayer that you keep your strength and energy! Big Hug
Thinking and praying for you!
Thank you for repeated picking up the bull horn and giving Celiacs a voice.
I thought of you this weekend. A friend hosted a crepe brunch and kindly offered to make a GF batter for me. It was delicious. I ate three. Then I went to the kitchen and saw her dipping regular batter into one pan, and then using the same ladle for the GF batter. I grimaced and knew it was too late. Then the conversation turned to various friends who were “trying to go gluten free”. I explain that I have a diagnosis, so I don’t have choice, gluten is poison for me. I don’t know if it sunk in or not. Later that night as I lived the consequences of cross contamination I reminded myself yet again that if I want clean food, I have to cook for myself.
Keep up the good work, and the clean, allergen-free kitchen. You’re voice and your food are very very much appreciated.
Thank to all who posted and are helping each other. That’s what we need to do, teach what we learn ! Brings tears to my eyes- this was my vision yrs ago in the depths of this disease. Alone and so very scared I hoped that one day I could have a space for people to help each other as those early blogs that helped me!
Love to you all
Jennifer
Godspeed your beloved soul and keep on keeping on Jennifer, god bless you.
You may want to introduce your daughter to Cilie Yack. If you’d like a complimentary copy of the book Cilie Yack is Under Attack I’d be happy to send you one. He’s a 9 year old boy from Ireland who has a lot of health issues until he’s finally diagnosed with celiac disease. It’s an empowering story for kids. Cilie (pronounced ‘silly’) turns into a hero in his home town not in spite of his celiac, but because of it.
Hello Caryn! Thank you for this info and for your kind offer to send one copy of this book. Actually, as soon as our daughter was diagnosed, my husband bought a good number of books that we could read with her and this was the first one we read! It is a GREAT one. Maybe our Sophia will write one of her own experience….one day. Be well, BeaByers
Three years ago I decided to go luegtn free after googling about gastro-intestinal issues and thinking that there was a link. Of course it was an interesting learning experience to avoid buying/eating anything with wheat, but not wasted learning. I also would not worry about any Celiac type medical issues from eating luegtn, I know I won’t get any allergic reaction.But I have noticed that my knees hurt less. I’ve always been triathlon training, I am running tremendously more miles than ever before (49 y.o.), and my lungs and breathing are clearer than before. One habit of GF diets I find strange is trying to re-create all those breads, cookies, cakes, and pies with GF materials. Sorry, but in most cases it’s impossible! Rice bread? yeah right. Find something else to eat like ice cream, or GF brownies (the general non-structure allows GF to work) or skip dessert. I may not need to go GF, but by doing so, it carves out donuts, cookies, cake, and other useless (yet so easily available!) foods so I have to think about getting rice, potatoes, oatmeal, vegetables, and other really nutritious items prepared. (i’m wondering what Donna H’s sister is eating to gain weight.) It restricts what I order at the restaurant, but it is my choice now. Did you know the proportion of luegtn in wheat grown in the U.S. today is significantly higher than a few decades ago? It’s part of our great agricultural revolution, but it raises questions in my mind about whether that is appropriate for us to eat. It’s one form of genetic engineering I choose to avoid.I guess I would not classify myself as Gluten Free, but rather as avoiding wheat-based products. The GF label is just easier for people to understand due to the growing fad. What annoys me is when people look at me with sad eyes: Oh, you can’t have any cake? and I’m like, No problem, I choose not to have some, it doesn’t mean you can’t enjoy it. Don’t worry about me!
Thank you for your insight and empathy for those who suffer from celiac disease and gluten intolerance! You are an amazing example and I actually used your testimony to convince my then 31year old daughter that she NEEDED to be gluten free because of “IBS”, “food allergies” and most recently,a diagnosis of MS in 2012. After a LOT of balking, fast forward 15 months and she is living gluten free, feels better than she has felt her entire life (HER WORDS!) and without symptoms of IBS. Her allergy symptoms have improved tremendously as well…… That is until she gets poisoned by the EVIL gluten! Her almost two year old son also has a gluten intolerance that was diagnosed genetically after a very colicky infancy and early toddlerhood. He is a much happier little boy without upset stomachs, gas and pain. Thank you for your blog and for your continuing war against non-believers in the gluten issue. This is a learning path that we will be on for the rest of our lives….
My sweet great nephew was just recently diagnosed with Crohns. It’s not Celiac but it’s in the same IBD family. He is only 6 years old and it is extensive and very aggressive. I loved Jennifer on Blue Bloods and after she left, I looked for the reason why and found out about her diagnosis. I am only trying to be positive and give my nephew and his wife comfort and things to look forward to, to show them that they are not alone. My nephew is Gluten intolerant and so I forwarded this site to them. I love that Jennifer made and is making such a difference. You are making a difference!
I got glutened Friday night at the sushi restaurant we eat at every Friday night!!
I wanted to stand up in front of the whole restaurant and tell them what happens to a celiac when they eat gluten, every disgusting and scary detail. People just don’t get that it isn’t a choice. I just canceled a road trip to Austin because I will need a toilet every couple of hours, I would have to bring all of my meals for two days on the road both directions. It just isn’t worth the stress.
I have so many food allergies and sensitivities that eating is a major aggravation even at home.
I’m just angry about it at this point.
I’m angry that it took so long to be diagnosed.
I’m angry that people don’t realize how serious it is.
I’m angry that our food is so over processed and contaminated by pesticides that more and more people are having problems.
We need food to stay alive , but the wrong food in the most tiny amount can make us really really sick.
If I was a billionaire I would open a chain of allergy free organic restaurants so we could go out without fear.
Oh yes, someone as angry as I am…. My issue now is I have Celiac right, we are suppose to cook for our selves right? Well had a tumor on my spinal cord that had to be removed, I haven’t come back from the surgery and it’s been two years.
As of this date I make myself a lot of sandwiches. I’m not able to handle standing for a length of time as well as handle the pots and pans on the stove… So, yes I’m angry because it took them a years to diagnose me as well. This is what needs to happen with more people involved do a march on D.C. and demand all this other foolishness these networks show to stop and use the time to put something useful. I’m 60 years old this is all bull shi*. It starts at the top and rolls down hill….
I get your anger believe me!!!!!!!!! If anyone does it is me. What I also understand is the damage it does to us. Try to channel it anyway you can. We WILL get there but we MUST have strength to do it.
I so thank you for your support
Jennifer
Wishing you the best. I too have many allergies and am diagnosed celiac. I find it hard to eat anywhere except at home. The fallout of eating out is just so horrible and you feel so bad trying to explain to someone that they cannot cross contaminate that it is just easier to eat what I have prepared myself. I find it really hard that all or at least most of the celiac and gluten free foods contain soy, rice, and corn. I read so many labels when shopping that what should only take an hour takes me 4 or 5 hours. I find there are no convenience foods and everything must be cooked from scratch. As I am struggling to deal with an autoimmune disease I find cooking from scratch some days to be very difficult. But I have no other choice. I definitely feel for all the others out there who have to eat a clean diet. I must say that even though it is so hard to eat clean, the food is so much better. It is only hard on days when I am sick. Which is pretty often. I started my own blog a few years ago to help keep myself positive. It gives me something to strive towards and has been a great benefit to my health. My Mom who I recently lost never really understood my diet until last year on my birthday, she cooked the most amazing gluten and allergy free dinner for myself and many of my friends. It was wonderful to have someone cook everything for everyone gluten free. To date that is the only time in many years I have been to dinner where I did not have to bring my own. I really hope that everyone has the opportunity to experience the gratitude of having someone go so far out of their norm for them. Please do not be angry, most other people just do not get it. How can we expect them to. I know sometimes I do not “get it” and I have it. Take care. http://www.cheriesforgetmenots.com You will find that most of my recipes are gluten and adaptable to allergies. Except the odd one that is about some of my husbands favorite foods. Every once in a while I find it nice to cook for him with gluten. He never complains that our diet has changed so much. He simply goes out for lunch once in a while and eats his gluten away from home. He is so sweet. Please know that you are definitely not the only one having a hard time with this. (((Hug)))
Cherie when I read your comment it sounded so much like me. I to have to read all the labels when buying groceries. And yes it takes me hours also. I have allergies also to corn, rice, and chlorine in our city water. plus celiac. plus arthritis. plus to all chemicals. Going outside is a riot for me haha. I understand completely how when you are sick how hard it is to cook a meal to eat. I have learned to cook a handful of burgers, several little steaks and a couple of chicken breasts or thighs on my grill. Then I wrap and bag them after they cool and plop them in the freezer. On the day I’m sick I just bring them down to thaw. A great help. I also cook my organic green beans,broccoli etc. cool and freeze them in bags. so that way no cooking when I’m sick. Maybe that will help you a little? I’m sorry to hear about your mom. I lost mine in 07 and my beautiful sister in 2012 who was only 48. My heart goes out to you. As it goes out to all who have CD. (and all these other illnesses and allergies related to it) God Bless you
About 6 weeks ago i was diagnosed with Celiac. In a way, it was a huge relief to finally know why I was so sick, living in the bathroom, lethargic, and in an immense brain fog. The fear of the not knowing what was wrong with me was difficult to handle. So what a relief to know that I didn’t have some “terrible” disease and I would be ok! Then the real reality would set in. All of the difficulties of eating to be well crashed around me. Trying to explain what was wrong. Why i have to eat a certain way. NO! I’m not picky. YES! I really do get very sick. Then trying to find the food I needed at the stores. So difficult to do in a rural area. Prices are very high. Our budget took a hard hit. Even worse when some of the food was very unpalatable! My husband decided the only way we could manage is if he just ate the same way I need to. Love him for that, but huge guilt feelings on my end feeling like I am depriving him. Missing work or going and embarrassed that i live in the bathroom. Beginning to feel better to only get poisoned by cross contamination at the restaurants. Sick again as if I hadn’t been getting better slowly. Finally eliminating socializing because of fears of eating something wrong. Sometimes I’m angry or weepy and i know it is because of these adjustments and changes, during the moment the knowledge doesnt help. Hopeful for life to be better as i start to improve. Grateful for those who have gone before me to provide insight, help, and compassion. Thanks for listening.s
Hi Margo,
I think we all probably know how you feel, and identify with the emotional and physical struggles.
I’m not trying to scare you only trying to provide information that may save you years of pain and damage.
My advice to you and everyone with celiac is to educate yourself and listen to your body. Just being gluten free may not alleviate your symptoms.
It hasn’t for me and I’ve been GF for 6 years. Every time I think I’ve got it under control I either get exposed or learn that one of the new foods I’ve decided to try is also a potential Gluten Associated-Cross-Reactive Food.
Celiac is an autoimmune disease.
Most people with celiac are also sensitive or allergic to a lot of other foods. When we continue to eat these foods we keep our immune systems working over time and further compromise our health.
Not to depress you, but if you are gluten free and not feeling better these foods could be the reason.
Here is one list from a test I just had:
http://www.cyrexlabs.com/CyrexTestsArrays
Gluten-Associated Cross-Reactive Foods and Foods Sensitivity
Rye, Barley, Spelt, Polish Wheat IgG + IgA Combined ( CPT CODE : 86256 )
Cow’s Milk IgG + IgA Combined ( CPT CODE : 86256-59
Alpha-Casein & Beta-Casein IgG + IgA Combined ( CPT CODE : 86256-59 )
Casomorphin IgG + IgA Combined ( CPT CODE : 86256-59 )
Milk Butyrophilin IgG + IgA Combined ( CPT CODE : 86256-59 )
Whey Protein IgG + IgA Combined ( CPT CODE : 86256-59 )
Chocolate (Milk) IgG + IgA Combined ( CPT CODE : 86256-59 )
Oats IgG + IgA Combined ( CPT CODE : 86256-59 )
Yeast IgG + IgA Combined ( CPT CODE : 86256-59 )
Coffee IgG + IgA Combined ( CPT CODE : 86256-59 )
Sesame IgG + IgA Combined ( CPT CODE : 86256-59 )
Buckwheat IgG + IgA Combined ( CPT CODE : 86256-59 )
Sorghum IgG + IgA Combined ( CPT CODE : 86256-59 )
Millet IgG + IgA Combined ( CPT CODE : 86256-59 )
Hemp IgG + IgA Combined ( CPT CODE : 86256-59 )
Amaranth IgG + IgA Combined ( CPT CODE : 86256-59 )
Quinoa IgG + IgA Combined ( CPT CODE : 86256-59 )
Tapioca IgG + IgA Combined ( CPT CODE : 86256-59 )
Teff IgG + IgA Combined ( CPT CODE : 86256-59 )
Soy IgG + IgA Combined ( CPT CODE : 86256-59 )
Egg IgG + IgA Combined ( CPT CODE : 86256-59 )
Corn IgG + IgA Combined ( CPT CODE : 86256-59 )
Rice IgG + IgA Combined ( CPT CODE : 86256-59 )
Potato IgG + IgA Combined ( CPT CODE : 86256-59 )
Specimen Requirement:
Collect: 5 mL red top or tiger top
Transport: 2 mL serum
Pediatric: Transport 0.5 mL serum
We are also more likely to be sensitive to::
Night Shades
http://www.whfoods.com/genpage.php?tname=george&dbid=62
Below is just an excerpt from the article. Go to the link for more information.
Overview – the basics about nightshade foods
Potatoes, tomatoes, sweet and hot peppers, eggplant, tomatillos, tamarios, pepinos, pimentos, paprika, and cayenne peppers are classified as nightshade foods. A particular group of substances in these foods, called alkaloids, can impact nerve-muscle function and digestive function in animals and humans, and may also be able to compromise joint function. Because the amount of alkaloids is very low in nightshade foods when compared with other nightshade plants, health problems from nightshade foods may only occur in individuals who are especially sensitive to these alkaloid substances. Since cooking only lowers alkaloid content of nightshade foods by about 40-50%, highly sensitive individuals may want to avoid this category of food altogether, while non-sensitive individuals may be able to eat these foods, especially in cooked form, without problem. Green and sprouted spots on potatoes usually reflect high alkaloid content, even though the green itself involves the presence of chlorophyll, not alkaloids. For this reason, sprouted areas should always be thoroughly removed before potato cooking, or the potatoes should be discarded altogether.
A second type of problem potentially related to the potato alkaloids involves damage to the joints caused by inflammation and altered mineral status. Whether alkaloids can contribute to joint damage of this kind is not clear from current levels of research. Some researchers have speculated that nightshade alkaloids can contribute to excessive loss of calcium from bone and excessive depositing of calcium in soft tissue. For this reason, these researchers have recommended elimination of nightshade foods from the meal plans of all individuals with osteoarthritis, rheumatoid arthritis, or other joint problems like gout.
Excellent info!!!! Just what I was searching for. A big thank you Jacqueline!!!
I just saw your comment. You are very welcome.
Be Well.
I wrote to Fox & Friends today, begging them to have you on their show to represent Celiacs and talk about your book. I just happened to mention that the three major networks shut you out!!! Hope it works! I think you are such an incredible inspiration. You just keep on going when, at times, you must have wanted to give up. Thank you!
hello I suffer from celiac disease as well. my doctor’s advice to me… when I returned for my follow up visit in tears over the reality of the diet change.. he said ” do it or die!” it was so severe I was bleeding from both ends. now my approach in reaction to those who treat us all like idiots, or think it’s in our head. I reach out to those as I’m in the food business and help them to shop and find gluten free everywhere. I believe my willingness to help all others understand this as best I can can help them to know this is real… and help those who need it breathe easier knowing there are options to eating well.
Thank you for your comment Samantha. In 2003, I was urged to get diagnosed by a co-worker who almost died of Celiac disease. By the time she was diagnosed, she too was “bleeding from both ends” and had to be rushed to the ER. Her doctor said that she had gone into “Celiac Arrest”. Thankfully she had a good doctor who told her that eating gluten was like eating rat poison for her. Sharing your story & reaching out to others truly does make a difference. I’m alive because someone like yourself shared their story with me…
Blessings to you, Jennifer, for your hard work. I know it is helping many. Did you know that Glenn Beck was recently told by his doctor that his food is poisoning him? He has suffered for years with a lot of pain. He is beginning to research the fact that our food has been compromised by many, not the least of which is Monsanto. I’m hoping you will try to get on his radio show and/or his webcast to tell your story and announce your new book. Thank you for all that you do.
Jacqueline:
Thanks for reaching out. I knew I had some food allergies before I knew about the celiac. Have considered being tested for more. That thought really seems even more overwhelming; however, I may have to take that step. I feel fortunate to have,so much information and people reaching out than if I had been diagnosed 5 or more years ago. Blessings to each of you.
You are very welcome.
Be Well.
And yes it is overwhelming. I’m not a person who has ever revolved around food. I eat to survive.
Now I’m revolving around what can I eat not just to survive, but what foods won’t do further harm.
My daughter is almost 8 and was diagnosed with Celiac Disease when she was 4. It was the hardest thing ever to accept and adjust to. Eating GF is now very easy and I don’t feel overwhelmed anymore. I do still feel extreme sadness and guilt which I think will never go away. It hurts my heart when people call gluten free a fad or a scam or use the term “dickwads”. You are talking about my little girl who needs to eat GF to stay healthy! Keep fighting Jennifer! We need you on our side! My little girl needs you!!
Wow this article is great! I’m so tired of having to order gluten free at restaurants under my death because I’m self conscious and think the waiter will think I’m on some diet! It’s sooo unfair! Those people are ignorant and hopefully
We don’t all have to feel that way for too long! Thanks for the great article!
Jennifer your courage in speaking out brings tears to my eyes.
We just finished a lovely Easter Sunday breakfast of pancakes made with the mix from your bakery. My husband took an hour off from a business trip to NYC recently to rush off and find your bakery. That was when he bought the delicious mix. He heard you talking in the bakery about your views and advocacy and said it made him feel like he was listening to me! I would love to meet you some day. Your bakery is top of the list along with empire state building next time we take the kids to NYC.
We often feel alone in trying to advocate awareness and find such comfort in the statements in your book. So maby statements in the book were things we too have said to ourselves. So nice to hear it voiced publicly!
We read parts of your book to each other and the kids at easter breakfast this morning.
Easter, a new beginning with more hope for celiac awareness due to your book!!!
Thanks for making a difference Jennifer. You have lots of fans!
Wow, I think you will be a great OB. It seems like you have a real love for children, faeliims, and people in general. Sad to say that those qualities are rare traits in todays world. I believe not just anyone should be in just any job because you could be in a job that you hate and end up making everyone who comes in contact with you at work miserable. You have the joy and care to be great at your job and effect those you will be working around not only by your knowledge , but by your love for what you do.
I have a friend who is a paleo-anthropologist. She suetids what cavemen actually did eat. She hates the paleo diet because it bears no resemblance to what was actually eaten in the Paleolithic era. I can’t really argue with her. I drive to Whole Foods and Trader Joe’s to buy grassfed beef, organic chicken, and vegetables that were grown on a farm, that I cook on my charcoal grill or electric stove in my air-conditioned house. Quite frankly, I like indoor plumbing too much to want to actually live like a caveman.I find that eating baked goods made with coconut flour or paleo pancakes is such a horrible substitute for the real thing, that it’s best for me to avoid them altogether.
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I went gluten free without being diagnosed with celiac. I was diagnosed with ibs,add, pmdd and depresion. I eliminated gluten and all of my symptoms subsided. My six year old seemed to have no physical symptoms until I limited gluten in his diet and then when he ate it he had symptoms similar to a stomach virus. After three episodes wuthin about six weeks we had celiac bloodwork done and it was postive. Because his symptoms were so severe, I eliminated gluten from his diet as we are waiting for an appointment with the gastrointerologist. Before this he d been diagnosed with adhd,odd,separation anxiety and showed signs of depression. His behavoir changed drastically at home. The problem is, though i have explained everything to his teacher and nurse at school, his teacher tells me everyday about his bad behavior. Im convinced that he’s being exposed to something at school that causes this. When i try to tell the teacher this, it seems as though she doesnt even hear me. It seems as though she is trying to tell me I need to put him back on adhd meds. Which tells me she has no understanding of this disease. The fact that she would suggest this for a child who is possibly malnurished due to celiac. I should put him on meds that make him not want to eat? Its frustrating. I really believe she thinks of me as the crazy mom that is trying to explain away her child’s behavior. People have no idea what celiac does to people and how it affects you mentally and physically, and the media makes it even worse for making gluten free seem like a fad. Im angry that she doesnt have a little sympathy for a child who has gone through so much and im really tired of having to explain this. I even thought about pulling him out of school.
Check out the celiac and ROCK SUPPORT groups for templates for a medical plan of care/504 plan for his school.
We know lots of parents who were blown off by school staff too until we did this.
Have them follow anti-gluten cross-contamination procedures as if it were a nut allergic kid. The schools all know how to wipe down tables in case of nut crumbs and how to check that craft supplies dont have nuts so once we explained to them (with doctors letters and legal 504 plan support) that anti-allergy wipe down and prevention procedures need to be followed and got school PRINCIPal and nurse on board it was fine.
We refuse, on doctors advice, to let our child eat anything at school unless it came from our house and we vet all craft supplies and even provide GF replacements for the whole class per advice of several moms who had dealt with their kids getting sick from school. Many of us found our kids were sick despite sending in gf food to school and refusing classroom party food or snacks….. turns out play dough and elmers finger paints stuck under kids fingernails after craft time isn’t easy for little kids to wash off… papier mache, certain glues and other crafts, wheat germ oil in classroom soap and using reusable cloths carrying a million gluten crumbs were some of the reasons for ongoing celiac sickness, not food as such.
Read Jennifers book about toughening up. It is hard to do it but you have to be a bulldog at school sometimes or your kid will keep getting sick.
Thank goodness some teachers are a blessing, absolutely amazing and are willing to help and learn. We cant expect them to know everything or pay for the substitute stuff… parents can expect to step up and also have extra expense. It is better than a sick kid. Join FaaN too for more ideas.
Many FAAN and ROCK parents suggest the parents of kids with celiac or allergies volunteer as room moms or teachers helpers in the early years of school til the kids become old enough to self advocate. It is an easy non contentious way to partner with and help the school and others learn to help your kid.
Host a celiac fundraiser or donate or read celiac books to the class. The most amazing GF advocates for our celiac kids are their peers even in preschool and younger ages. Raise awareness from day 1. Make celiac treats or coloring pages for celiac awareness month or do other things to get folks aware and on your team:)
Make sure PE Art and Music and other teachers are trained too, dont expect the homeroom teacher to handle transfer of knowledge.
Good luck. I know it is hard, but worth it.
My daughter and 2 year old grandson are at the very least, gluten sensitive. Per my request, my daughter eliminated gluten AFTER being diagnosed with MS in 2012. Her chronic IBS and extensive lifetime allergies were almost 100% improved and she feels better than she has her whole life….she is now 33 and didn’t lnow that she could feel so good! She has not been medically tested; only tested by elimination, but knows she cannot eat gluten if she wants to feel good. Her son has been genetically tested positive for the celiac gene after having intestinal issues and colic as an infant. He is also on a gluten free diet and only has issues when he gets “glutened”. Cross-contamination can be a vey real problem. Please be sure that your son is not being exposed to gluten via other children’s food and/or crumbs at school. Even a tiny amount can have a HUGE impact on celiac/gluten sensitive people. Commercial Play-do is another source of exposure at school….as are many other commonly used items. You have to be diligent in reading labels….always…..and be aware of food prep both at home, in restaurants and other people’s homes. Best of luck! Be thankful that a diagnosis was made early in your son’s life. It will make a big difference in the quality of his life and possibly prevent major health issues later on.
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It is frustrating when people cannot accept that people can have food intolerances. They generally understand things like peanut allergies and lactose intolerance, but can’t accept that people can get sick because of wheat, soy or nightshade vegetables. I’ve practically gone underground because of people’s ignorance and lack of understanding. BUT, at least I am finally healthy.
I know that Celiac Disease is a horrible disease, but I am glad that many of your kids found out so early. I have been sick all of my life, am about to turn 21 and was just now diagnosed. I had to take a semester off from college because of how sick I was. I wish I had known when I was younger then I could be used to it now and not trying to adjust to college and to a new diet. I was just so happy that one doctor finally believed me and figured it out. I had been gluten free for a month and a half and was feeling so much better. I started working at a bakery, not eating any of it, and all of my symptoms came back. I didn’t realized that I could be so sensitive to gluten that I can’t even work in an environment where there is gluten. I love baking and am so glad that I can find recipes to use at home that are gluten free and still so delicious! There aren’t many gluten free bakeries or restaurants in Greenville SC, but I am still looking!