Patience is the word I choose. Patience is what we MUST have when dealing with this ever changing disease. Patience is what we need when dealing with OTHERS regarding this disease. If I said it once, I’ve said it a thousand times, the ignorance regarding this disease is astounding. Don’t know if many of you saw or heard about the recent display of the blatant lack of respect for the disease by an actual intelligent person, but I refuse to get into it here. It was too hurtful the first time to rehash and I refuse to give ignorance any more time. All I will say is WE CELIACS HAVE A LOT OF WORK TO DO! AND I will keep up the good fight to educate about what Celiac truly means.
On to a more positive subject. Your stories are read by me, each and every one of them. Know that you are heard here and will continue to be. I have been so moved by the outpouring of people wanting to share their journey, their remedies, and just offer up their thoughts. I take everything you recommend into consideration as well. To clear up a few things regarding me and my diet here is a list of things I don’t eat and incorporate in my diet.
I’m 100% gluten, dairy, soy, egg, corn, and refined sugar free.
I only go for organic, non GMO foods and mostly local farmers.
I eat mostly vegetables and lean meats.
As for processed foods, I don’t do it.
I bake everything myself and still don’t LIVE on gluten free substitutes.
Its my belief that NATURALLY gluten Free foods are best for ALL
I’ve tried eating raw and the paleo diet. Problem is because of leaky gut I have MANY other food allergies that change often. Because of this I stick to a strict rotation diet that I’ve mentioned in a previous blog.
I’ve started baking breads and muffins completely grain free and have incorporated that much more than ever.
As always what works for me may not work for you. At least here you will get some options! As I’ve said before we Celiacs have a long way to go before this disease is REAL to others, so for the time being stay strong TOGETHER! Support each other, offer up your advice, more importantly tell YOUR story!!! Our words are all we have sometimes, but words are powerful and can move mountains. Patience, my friends, patience.
(SIDE NOTE) Patience is something I’ve had to learn. I’m a feisty Italian from Brooklyn NY and have fought for everything I have. Believe me, I’d like to scream and loose it on many ignorant, ignorant, people. Especially those who we are trained to trust, such as doctors. Screaming, yelling, and loosing it will make you out to be exactly what they labeled, many of us, celiacs before actual diagnosis – crazy, emotional, and stressed. Don’t let them win. Educate yourself and then, others with a smile on your face and calm in your voice. We will go farther that way, trust me.
Much Love,
Jennifer Esposito
In the 15 years I have been gluten free I’m afraid I am very short on patience. I have been seen and trrated by too many ignorant doctors and hoped by now, (15 years later) that at least the medical profession would be more aware. I guess we will have to continue the fight.
Thanks for all you are doing.
Thank you Jennifer! Yes, Patience is so important right now. Change in this case will not be overnight. Someday we will have stories to tell about how it used to be, when most people did not understand Celiac disease. I feel confident that the future holds better days where Celiac disease will be more researched and widely understood. In the mean time, we can only continue to be strong, take care of ourselves and spread the truth. Thank you for your tireless work to educate and help our cause!
Hi Jennifer,
I am also trying to patiently get the word out to increase awareness and educate others about celiac disease. I recently started a blog called, “The Patient Celiac, ” in an effort to get the word out. I work in the health care profession and am astounded by the lack of knowledge and confusion regarding this disease and other gluten related disorders.
Thank you for being a spokesperson for all of us and standing up for what you believe in. I am with you 100% in this journey.
Jess
Thank you for your continued patience and persistence in getting the education out there. Hopefully more people (and doctors) will have the sense to listen.
As I’ve tweeted previously I do not suffer your disease but I feel for each and every one of you. My 18 yr old daughter however is having and has been having gastrointestinal problems that the doctor still can’t seem to figure out. We are only at the beginning so I don’t want to jump to conclusions about her condition but I’m definitely keeping an open mind and a close watch on the doctor. Thank you for your help and loving nature.
You have held yourself, again, with such grace and calmness in this interview that really takes a remarkable person to stay so within your own energy and shoes and not let yourself stoop to someone else behavior.
i am in awe.
much respect to you miss. Esposito…you stood your ground with grace.
you are right..with a smile and calmness you will reach your personal goal, and fulfill so many other persons add that at once too.
I wish you all the best with love, light and respect.
Susan
PS. i do not have this auto immune disease however feel strongly about your journey in this matter and support you and all others whom ”fight” every day in silent for a voice, understanding, recognition and help.
your journey to find foods you can eat sounds much like mine…I’m currently paleo-esque in my diet but I’m thinking that a rotation diet is something I should probably try and then maybe some of the seed-like grains could be carefully re-introduced…though because of metabolic issues I have I’m not sure I would tolerate them…
oh my…so exhausting…BUT! I was bed-ridden for two years and I am no longer…have a long way to go still…
thanks for your work Jennifer.
Can I still yell and scream? I’m at my best when I rant
You are SO right: patience. Every time I face a new round of allergies and the symptoms, pain and fatigue come flooding back, patience and perseverance are my only choices, because giving up is not an option. Stay strong!
Thanks Jennifer!! Your Support is very important to all of us!!
My story is just becoming clear to me. I’ve been in the process for the last 11 months trying to understand and becoming gluten free.
I have a question about your diet Jennifer. Why is it beneficial for you to omit dairy, soy and corn from your diet? Is this part of the celiac disease?
Thanks for your site and education and for your patience in answering my dumb questions!
Well for me Dairy and soy is also a problem for me. Most serious Celiacs have a problem with dairy as well as many other things. As far as corn that is by choice. Unfortunately corn is so genetically modified and nothing but sugar that I choose to not give my system any more problems than it already has.
no question is dumb my friend
Be well
Jennifer
The same as Jennifer said, but would like to add about corn with a little history. Note: Corn is not a vegetable, but is actually a grain. People who want to be healthy should not eat grains. I’ll explain as I go and in the next comment.
Corn was developed in Mexico around 7000 years ago. One of the first early corn foods was tortillas or little cakes. The important thing that the early people of Mexico learned was to break down the outer skin of the corn for it to be ‘healthy’ as a food. The way this was done was with water and ash from the fire pit and soaked for a few days. Today Lime, as use in pickling, seems to work as well. This process is known as nixtamalization.
I have to back up here for a moment to build a foundation for my comment.
Plants like anything else want to live. To protect themselves, some plants and trees grow thorns all over. Some plants like grains grow toxins to ward off predators. The thing about grains is that they don’t care about you. Though they have no teeth, claws or legs to kick you, or run away, they are anything but defenseless. They have an array of chemical defenses, including various lectins, gluten, and phytic acid that disrupt digestion, cause inflammation, and prevent you or an insect from absorbing vital nutrients and minerals, hence slow starvation in humans. The non pollinated petri dish wheat of today have way more gluten than just 100 years ago.
Corn arrived in the US and Africa around the same time, but the nixtamalization process was not brought along with the corn. People in Africa who depended mainly on this unprocessed corn for food got very malnutricious and came down with diseases like pellagra, before reasoning was descovered. Corn should not be used as food for humans, pets and even cows. Cows may have four stomachs, and chew their cuds to help with diigestion, but even their stomachs are not designed to eat corn and is detrimental to their health too. In reality, corn is detrimental to anyone’s health unless it has been through the nixtamalization process.
Even soy beans needs fermenting first because in their natural form, soybeans contain phytochemicals with toxic effects on the human body, animals too. The three major anti-nutrients are phytates, enzyme inhibitors and goitrogens. The Chinese raise soy for over a 1000 years before using as a food, which can about by fermentation.
Over 91% of soy and 86% of corn has been GMOooed in the US. GMO crops are heavily sprayed with herbicides and pesticides, which gets into the soil and in the plants through the roots.
On another note; soy has too much estrogen and men do not need estrogen. Just one 8oz. glass of soy milk SILK, has the equivalent of estrogen with 5 to 6 birth control pills, per the book MediSin.
If guys drink SILK, when they get out on the dance floor, they won’t know whether to lead or to follow!
GMO foods in Europe have been labeled as such for the past 12 years. The US needs to catch up.
It should be knowned that independent studies in Europe, Russia, China, Canada and medical universities in the US have come to the same conclusions; animals fed with GMO crops have greater percentage of offspring that are stillborn, and by the third generation many if not all are sterile. In a very recent study in Russia and France, both have found that rats fed the new GMO corn are coming down with lots of cancerous tumors. Search the web with, France rat GMO study, etc.
If GMO foods are so wonderful, then why are companies like Monsanto afraid to label their GMO foods at the market, and spend over $41 million to defeat prop. #37 in California last Novenber, but only by a narrow margine?
People have the right to knew what they feed their families.
Why stay away from grains?
From the 2002 book Dangerous Grains, by James Braly, M.D. and Ron Hoggan, M.A., they reported that the cultivation of grains by humans began around 9000-10000 BC. While incorporating grains into the daily diet, it fundamentally altered the nature of human society, it also permanently shifted the physical evolution of humans. They write, “with the inclusion of grains in the diet, our ancestors became smaller, their bones became weaker and more diseased, and the size of their brains diminished. Human brain size, based on head circumference, has diminished approximately 11 percent since the advent of agricultural societies.” They also note that pre-grain humans were an average of 5 to 7 inches taller than their grain eating descendents.
Using the effects of Celiac Disease on modern humans as a model, Braly and Hoggan conclude that it was not just the ingesting of any grains that caused the diminishment in physical stature, but grains that contain gluten. Modern children who suffer from Celiac Disease, an autoimmune disorder triggered by the presence of gluten in the body, are physically smaller and more diminished than their peers. The natural progression of their development is stunted by the nutrient deficiencies their disease causes, causing many to stop growing well before late adolescence. Furthermore, adults with Celiac Disease display a marked reduction in bone density. Early civilizations didn’t seemed to notice, because they no longer needed to follow their food. They could simply grow it where they lived.
Assuming Braly and Hoggan’s theory is correct, can we help but wonder how different the human story would have been had our stature never been compromised?
So now we know to avoid these so called foods, and be healthier.
Thank you Jennifer for the “patience”reminder.My patience,as well as those around me,are challenged everyday with this disease.Mostly,it is the frustration of the lack of knowledge/compassionthat the “medical”field and general public have.Moreover,limited income compounds the battle.The positive is there are others that can help,esp.people like you.
Guess fresh,although not always easy is the best way to go.
j.r.
I love how passionate you are about celiac disease and getting the word out there. The hardest thing for me is that eating healthy is expensive enough but add gluten free on top of healthy eating then your pocket book suffers. I wished that I had a business background because I would love to open a gluten free bakery like you have in NYC. I live in Sioux Falls SD and would have to drive more than two hours to enjoy a gluten free bakery. So I experiment with almond flour recipes so turn out some don’t. So thank you for all that you do for all of us with celiac disease.
Phyllis Varing
Patience is something I learned the hard way. Not only with ignorant doctors, but within my own family members. After all these years, and with people going public like you have Jennifer, I think they are finally, ” getting it”. I thank you from the bottom of my heart for your voice.
Been there, done that.
It saddens me to read that you are also egg free. I say this because organic free range eggs are the best source of choline, inositol; basicly lecithin, and so many other nutrients to help the brain avoid dimentia and alzheimer’s.
Patience is fine, but diet is key.
A poet once wrote, ‘Patience is not passive, on the contrary it is active; it is concentrated strength.
You write that you are ’100% gluten, dairy, soy, egg, corn, and refined sugar free.’ This is good but what needs to be added is; processed foods since most have gluten and GMO foods and High Fructose Corn Syrup in them. GMO foods have been shown in studies world wide, they cause cancer tumors in lab rats, still borns by the second generation, and sterility by the third generation. HFCS will also destroy the liver over a short time.
You can also say soda free, since soda have many toxic and carcinogenic ingredients, especially aspartame in diet soda, which is a neurotoxin and may lead to dimentia.
Patience is something my family had to learn once finding out our 11 year old has Celiac Disease, she was diagnosed March of this year. It was very hard at first but what got me most angry was finding out wrong information from the dietition. I had to do alot of research because I just didn’t know what Celiac was. The hardest for me was watching her health decline, she was getting sick almost every week to the point where I took her to the natural food store to get her a probiotic. She is doing better now thank goodness with the right gluten free foods and vitamins.
But your right Jennifer we have to fight, fight the ignorance and educate! I didn’t tell her soccer coach of her disease for fear he wouldn’t put her in but when she started to miss practice I told him, he was very receptive. She is very good and plays hard. Thanks to you we will continue to fight !!
Thank you, Jennufee, for being our voice. Be strong…ever onward!
Just want to share with all folks reading this, Gluten free is not the answer to a lot of symptoms as Jennifer has described. I have discovered that I have SIBO, a small intestine bacterial overgrowth which has caused serious leaky gut, fatigue, depression, anxiety, skin rashes, malnutrition and other ailments. It’s never really tested for by most docs. My GI doc did the test and discovered it. It is treated by antibiotics, but the abx do not cross the blood brain barrier, they go right into small instestine, yes, one has to do probiotics once done with abx. GAPS diet has helped me also. Home made bone broths and home made fermented foods, traditional cooking. No dairy, wheat, grains, soy, sugar, etc. Veggies, organic meats and some fruit…TAKE CARE FOLKS…
Anyone who is interested in learning more about Small Intestinal Bacterial Overgrowth:
http://www.gidoctor.net/small-intestinal-bacterial-overgrowth.php
I think I may be celiacs–my sister is, and i got sick last night from a frozen stoufefers lasagna dinner
I dont know where to begin, and have no time to learn all this stuff–ive watched videos on what gluten intoklerance is, and i have cooked many gluten free things, but not having health insurance to confirm if i am or not SUCKS!!!!!! :’(
Christina in Colorado, Nov., 29, 2012
Regarding not having health insurance to verify if you are Celiac or Gluten Intolerant:
After discovering via the internet that I was GI I had my return appointment with my Gastroenterologist after having an endoscopy to see WHY I was having stomach bloating, back aching, achiness all around my waist, headaches, & neckaches – all of which kept me from sleeping at night also – I had to tell him that I discovered I was GI. He never brought up the possibility!
Since my stomach (picture) was clean: no ulcers or anything else that should be causing the problem, I asked about the blood test & he did the blood test that shows if you are Celiac (fortunately my insurance, I had at the time, paid for it completely) and it came back negative. Ok, so at least I’m not “Celiac”. However, I was reading my Celiac/Gluten Intolerant books and it stated in them that a blood test will ONLY confirm you’re a Celiac IF you’ve been eating gluten for 4 weeks or more. Well, by that time, because of the internet & the pain’s I was having, I had STOPPED eating gluten many, many weeks prior so maybe that’s why it was negative, except I don’t have the symptoms I’ve been reading in here, so I’m thinking I’m “only” (& I used that term very loosely) GI.
I do know that I am also Lactose intolerant – but at least there’s chewables or pills for it, however it does not seem to handle cheeses, & also can’t have Soy because of kidney stones 12 years ago.
As long as I eat gluten free – or at least try to – sometimes it’s hidden in things – I feel ok.
I’m bringing this up, Christina, for if the info in the book is correct, I wouldn’t want you to waste your money on a Celiac test if you’ve been gluten free for 4 weeks or longer. The special breads & foods we have to buy are expensive enough!
I hope this info helps.
Leslie
P.s. sorry for the typo’s–when typing in this box the print is so little and faint i can barely see it!!! its tiny and grey so faint!!!??? Lolzzzz
A P.S. to Christina: I know. The first time it was frustrating, however, if you have Word, I type what I want to say into Word first & TRY to remember to check for errors, then copy it into here. That way I can see what I’m saying & as I said, try to check for errors ( & that it makes “sense” – although I’m a wordy bugger by nature, so it’s usually discombobulated (thoughts go in all directions?) ). ( Most times I forget to spell-check, but, I try.)
Hope this helps.
Leslie
Patience is oh-so important, but not always easy knowing so many others are going through health issues needlessly (or not understanding our own health issues – or our diet.) When I was first diagnosed (just over 12 years ago, after a lifetime of health problems) and experiencing such amazing results, I was also working in a classroom with early childhood children with a variety of special needs. Of course I ‘saw’ possible connections with many others (at school, family, etc). But who wanted to hear this…?? No one. Diet? Who wants to believe diet will make a difference? It wasn’t an easy sell – And still isn’t. Knowing the impact (physically and emotionally) a gluten free diet had on me made it SO difficult and extremely frustrating knowing so many others were having issues needlessly. This is SO BIG. Developmental issues. Behavior issues. Depression. No one (and I’m partial to our youngest population) should be complaining of stomach aches and told ‘nothing is wrong’, or suffer from lack energy at 6 years of age, or ability to concentrate or have any of the multitude of issues that could be avoided just being gluten free. I so clearly remember talking with a speaker (G.I. physician) after one of our support group meetings when he told me this very thing – that it will take time. I’m not a patient woman. But – OH MY! so many changes have taken place over this last dozen years – and that snowball only continues to grow.
(I would love to send you a copy of ‘Adam’. Writing this book was my way of trying to reach teachers and family members to educate them about just how strict this diet is – and of the importance of including!)
Thanks for all you continue to do!
A huge area of neglect (and one that it is difficult – impossible – to be patient with, is the extreme lack of education in hospitals.) My son was in a very serious car accident this past February. ICU for 6 days, head injury – It was bad. And I was a crazed woman. We all witnessed a miracle this year – without a doubt. We were blessed (and I mean completely blessed). He is amazing. Recovered. Amazing. But the process. He is gluten intolerant (not diagnosed celiac as I am – but gluten intolerant for sure.) When he could finally eat (when his jaw was repaired 10 days after the accident!) – Guess what?! chicken broth with gluten – which was taken away because it had gluten (but not replaced with anything.) I could go on and on – but it was not a good experience with the food issue. Then – in rehab, wow! It was horrible. They only removed what he couldn’t have without replacing with something he could eat. He was on a soft food diet. Lunch: cooked carrots, cooked apples, milk and ice cream. Same for dinner. Thank goodness I was able to go home to cook for him. (gluten free, tasty, and nutritious – 3 things that were missing.) Regular Rice Krispies (a morning I wasn’t there). Seriously?!! I hit the roof on a few occasions. I let them know that if he happened to be one who vomited with gluten as some do (with the jaw that was so severely broken and still had so much healing to do) they would have had to peel me off someone. Conversations (in person and on the phone) as well as a letter did actually result in a change in their software and the way they run their kitchen and handle food allergies and special diets. One facility down – how many more to go. It is one thing to know a change needs to happen – But going through the nightmare we were faced with – and experiencing such lack of concern when it comes to FOOD and diet! – Its nuts!
So – What you are doing – It is SO needed. Please, as frustrating and as painful as it is to have such ignorant interviewers and negative press, there is certainly many more positive changes and education that will come from it.
Thank you
Thank you for writing all you go through. i don’t get out there much and talk about celiac like i should.
three years ago my symptoms hit me fast and in 6 months i lost 30 pounds and weighed as little as 85 pounds. even with positive blood tests for celiac, my doctors (yes, many many doctors) still denied that i had any real problems. by that time, i could barely stay awake all day, let alone get through work, do my single-mom duties and keep a house together. i had never known such exhaustion and depression and sickness.
so i went gluten free sans doctors but loaded down with books and websites. after two weeks i remember the moment my lungs could take a full breath for what felt like the first time ever. i remember after three weeks how my thought process was less fuzzy and my short term memory was coming back.
and realized along the way that i need to be iodized salt-free, soy free and now processed sugar free and who knows what next. this year, it took 6 doctors and 9 months to find one that agreed with me that my ongoing pain was real and helped me pinpoint the sugar issues. i’d never even heard of ataxia before but that’s what sugar was doing to me.
i’ve had to learn patience not only in recreating my passion for cooking, baking and eating. my first attempt almost two years ago back in the kitchen was a simple rice stir fry and i was so sick and unable to think clearly it took three hours. now i can make a Thanksgiving feast in the same amount of time!
but patience in renovating my daily activities. i used to be a whirlwind – tackling a list of things nonstop every day. now i consider myself lucky that i can get through the day without a nap.
and there is patience in education. my mother still asks me if i am in remission from celiac. my coworkers still ask me when i will be able to eat bread again.
and the patience in educating myself and being on-guard for my daughter and watching, wondering how closely her path will follow mine. and knowing that if she does have celiac, that i will be rewarded with the knowledge to teach her a better way of life for her body.
and the patience in maintaining peace within myself, teaching myself to understand that i am ok with this. that the reason i have celiac is so my body can be healthier by eating more wholly nutritious foods instead of gas station brownies and streetside bagels.
i can’t say i had much patience for myself before celiac. but celiac definitely stopped me dead in my tracks and forced me to live a completely different lifestyle during my recovery and now for my future. and in doing that, i’ve been able to simplify my life in a positive way. slow down and enjoy being in the moment.
because every day today is better than any moment 3 years ago.
One thing to understand about doctor’s is that with all their years of medical school training, they only get about 2 to 4 hours training on nutrition. It was not until 1995 that Harvard medical school went to a 5 days course on nutrition. There is a cooking school in NYC, name escapes me, that teaches a 7 day nutrition course as part of their curriculum. Is their course better than Harvard’s? I do not know, but what I find interesting is that they teach 2 more days of nutrition than probably the most prestigious medical school in the country.
I see some are concerned about soy. There are several things to think about. One, is that no one should eat unfermented soy, for it is detrimental to health. The Chinese, who learned to forment around 1450 BC, would not eat it as food before that. They only used it for fertilizer for the spring crops. They had plenty of slaves, prisoners and pi’ons to experiment on back in those days so they knew not to eat unfermented soy due to health concerns.
Two, over 91 percent of the soy grown in the US is Genetically modified and for health reasons related to the gut, and studies from many country’s, no one should eat unfermented and GMO products.
86 % of the body’s immune system is in the gut, so it is important to avoid grains, especially petri dish designed wheat.
Jennifer, there aren’t enough words to describe how much compassion and respect I have for you – and everyone who is coping with this disease (and the variety symptoms that come with it)…
Stay strong Jennifer. I know how difficult it is to speak out – especially when you’re not feeling all that great. You are not alone. It’s actually taking me a lot of energy to write this
I hope it’s ok to state this opinion: It is not acceptable for a well known doctor to berate or interrogate anyone with a medical condition on a television show – especially when this doctor accepted $275,000 in underhanded payments from Glaxo-Smith Cline. This shows questionable ethics. You are a courageous woman. Thank you for sharing your story so publicly.
I recently shared this experience with “Gluten Dude” – and I’m sure many of you can relate…
I was diagnosed with Celiac Disease in April of 2003 and it still boggles my mind when doctors display arrogance or ignorance towards a legitimate medical condition. Three months ago, I had a severe autoimmune reaction and went to see a new Gastroenterologist, I brought along copies of my Celiac bloodwork, my latest labs, and pictures of my biopsies. She took one look at my paperwork, slammed them down on a chair, and said, “We do not diagnose Celiac disease with blood tests and biopsies anymore. This an an outdated approach – we now use a genetic test to make a legitimate diagnosis.” She then proceeded to talk down to me like I was retarded.
I was so stunned & traumatized by her behavior, that I forgot to share with her that my parents have both taken the genetic test – and tested positive. Anyway, this experience still gives me nightmares… Needless to say I went to a different gastroenterologist. .
Jennifer, on the plus side, I’d like to thank you and Arthel Neville for the wonderful foxfiles report on Celiac disease. She’s such a wonderful journalist. It was so thoughtful and well done. Hang in there. We do have to stay strong & patient. Big hugs to all of you.
Jennifer, you had mentioned, ‘Problem is because of leaky gut’ . Leaky gut syndrome can be easily corrected by taking colostrum aka first milk. It can be obtained in liquid or pill form. Best taken on an empty stomach, first thing in the morning.
I also was told by my doctor I was the most positive Celiac results he’d ever seen. I kind of wondered if he’d ever seen ANY positive Celiac results before! I read some of your stories, it also took me about 4 months to figure out the diet, it’s a lot of work – which is why others don’t really understand it at all. And yes, I’d never eat food from a hospital! I had the skin issues pretty bad before I was diagnosed. Twenty years of misdiagnoses, and two years of severe skin issues before I finally got diagnosed. I’m also very allergic to wheat, I used to get severe breathing issues when I’d go to a pizza place. I never could figure that out – but who knew it was the flour in the air!
We always liked you on the Blue Bloods show, I hope somehow that works out for you.
If anyone is interested, there is a petition asking Dr. Drew to apologize to the Celiac community. The letter attached was written by an 11 year old girl.
http://www.change.org/petitions/dr-drew-show-on-headline-news-we-would-like-a-public-apology-to-the-celiac-disease-community
Patience is critical, but vigilance is my other keyword with CD and GS. I recently slipped up reading a label on some peanuts – and thought I would end up in the emergency room I was so sick. They were manufactured in a facility that also handles wheat. A few weeks before that, I said to my husband, I am still having some mild breakthrough symptoms – alleviated after throwing about my toothpaste that had carrageenan in it – any seaweed or product derived from it or MSG causes me issues.
Jennifer, thank you so much for sharing your story. My story is very similar. I was diagnosed with anemia at age 10 . I felt tired my whole life but pushed through. As I got older things got much worse. I started having seizures, I was tested for epilepsy and put on anti seizure medication even though my test came back negative. My license was taken away for 6 weeks because of the medications. On the medications I slept anywhere from 15-20 hours a day. I complained enough, that the doctors finally took me off. I have had multiple blood transfusions and blood infusions through out the years, nothing ever helped. I was always told it was my anemia. I was tested for MS when I was 37 which thank God was negative. I started getting migraines, severe leg cramping and gallbladder pain. I honestly thought I was crazy, how could I never feel good? I am now 39 and was diagnosed with celiacs last week. I have lived my whole life feeling sick and tired. I am happy to know that I will feel better with time but I am scared about the change in my life style. Reading your story has given me such comfort . I know I can do this. Thank you for sharing all this information, it comes in handy for a newly diagnosed celiacs patient!
I can relate to the patience. Usually when I tell people I can’t eat something, I get that sigh. You know the one. The “Here we go again” sigh. One thing I have to say is find a doctor who understands and you can trust. It is a hard thing to find but it makes 100% difference. I got lucky, my doctor’s father is a Celiac. When I tell her something going on she tells me right away if it is a symptom caused by gluten or if there is something else that may be going on.
Jennifer,
I, too, thank you very much for all you’re doing.
I wanted to see the show, but we only have the low end of satellite TV (retired), & it wasn’t one of the channels we get.
I wish it was out on the net so I could see it.
Good luck with all you do!! You are one really great lady!!!
I, too, will continue to educate whenever I can, but it is frustrating – so I will try my best to be patient with all, although it will be an “uphill battle”, for I am Irish, Jewish, & Scottish, but I’ll try.
Leslie
Gluten-Free Organic Blueberry Coconut Superfood Muffins.
Preheat your over to 350 degrees (F) while you gather the following items:
Hint: Always choose organic where possible, as organic foods are grown without the use of toxic chemical pesticides and herbicides.
1 cup of coconut flour
1/2 tsp of baking soda
1/2 tsp of baking powder
1/4 tsp of sea salt
5 free-range eggs
1/2 cup coconut butter (or oil)
1 cup coconut sugar
1 tsp vanilla
1/4 cup chia seeds
1 cup almond milk
1 cup blueberries (fresh or frozen)
Directions:
1. Mix 1/2 cup of almond milk with chia seeds and set it aside for 30 minutes.
2. Combine coconut flour, baking soda, baking powder, sea salt, vanilla, and coconut sugar and mix well.
3. Add eggs, coconut butter, chia seeds (the texture should be thick) and the rest of almond milk.
4. Blend in the frozen blueberries by hand, being careful not to crush the blueberries.
5. Pour this batter into paper muffin liners that you’ve placed in a muffin baking pan. Fill them completely.
6. Bake the muffins at 350 degrees (F) for 35 – 40 minutes, or until they are golden brown on the outside and completely cooked on the inside. Toothpick time!
Enjoy!
Jennifer,
Thank you so much for this blog, sharing your story, recipes and tips! I went through similar experiences to you throughout my life…only to be given a diagnosis of depression and/or IBS, knowing there was more to it than that. At age 35 a nutritionist finally did a test and my results were the highest she had ever seen for gluten intolerance or Celiac. My endoscopy later also showed flattened duodenum indicative of Celiac. I also found I have to be dairy free, soy free, sugar free in addition to the gluten free. After really sticking to a diet of veggies, protein and quinoa or brown rice, things are starting to improve. I also went through a phase of “hot flashes”/ sweating, neuropathy, headaches and such and didn’t know what was happening. I didn’t realize there was a “detox” stage after going gluten free until I read your story. Very interesting!! Now I understand!! I just ignored the symptoms but also wondered what was going on, why am I not feeling better if I’m gluten-free?? Finally, after 2 years of serious stuggle (thinking I was going to die at one point) I feel I’m truly healing and can function more normally each day. I found I had to be patient with the entire process, and still have to be…..but there are days when I have to scream and release the frustration! Thank you again for everything!
My Celiac story bears a strong resemblance to yours Jennifer. I spent 15 years with a wide array of doctors who continually misdiagnosed my illness. With each visit, I found myself ripping up prescriptions for toxic meds as I left their office. I do my homework and I knew the consequences of these drugs. I also felt in my heart that they were wrong. Early this year, I found an amazing doctor who specializes in functional medicine (root causes and the immune system). The timing was perfect since I felt I had bottomed out in Dec. 2011. Cancer was mentioned by my 2011 doctors as a nearby reality. I was always sick and the pain and inflammation which repeatedly attacked me felt like a parasite. In March 2012, I tested positive for Celiac and have been gluten-free. I’m just starting my journey, since I lack the nutrition, which create other problems. I still react from a GF controlled diet and am also a vegan now in hopes of reaching a point of stabilization. I am disgusted with the lack of knowledge out there by people close to me and in general. It is a lonely battle that most can’t ever understand. I am glad I found your site and would gladly join you in an effort to change the way this disease is treated. Please let me know how I can help. Best wishes…
I admire your devotion, the energy and the support you put in for us fellow celiacs. It’s great to know that there is more and more recognition all over the world about our disease. I live in Switzerland and there is not much choice nutrition wise and its a life struggle. But to know that there are blogs and celebrities that speak openly about it, just keeps us going! So i have two simple words for you and all the other bloggers, THANK YOU!
As much as I thought I would hate turning healthy, it’s actually something I like. I share all your food eliminations. This started recently and I feel a bunch better.It’s great you’re famous and getting the word out three about gluten free health.
Jennifer, your story is just like mine. Everything you say you avoid are things I know affect me but have yet to be able to completely avoid them thinking I was going a little overboard. Having confirmed with blood tests of over thirty food sensitivities it was difficult to remove all grains and try to work out a rotating diet. And you are the first I have seen to recognize that these food sensitivities can change or be added to. I also have leaky gut. I have been unable to locate your previous blog on your rotating diet. If you could repost or send me the link I would greatly appreciate it. Thank you so much for all you are doing.
Hi. Jennifer- Your celiacs sounds so much like mine- reading your blog makes me feel like we are old friends walking the same road.. I went Gluten free- felt great for few weeks,then dairy started making me sick, then all grains, then soy and all legumes, then sunflowers i.e. oil/seeds/ stevia.. then most nightshades, and nuts- I gravitated towards the Paleo diet- it was a good fit- I lost weight .had energy , was feeling good- all was well- Until Leaky gut decided to crash my party!.. So now I am doing GAPS to heal my gut-the closer I stay to the GAPS plan the better I feel..it is a hard plan to stick too all the time but I am doing my best. I am very interesed in how you do your rotation diet-I have been on this celiac journey for 2 years now..and I tend to eat the same things over and over..I want to avoid developing more food issues if I can.. and what herbs and supplements do you take? Do you know of any that help with hair loss and gum erosion? Thanks so much Your bog has been such a blessing to me..
Jennifer:
Someone with your star power might get through their ignorance on the show. Have you seen the latest on Kathie Lee and Hoda? OMG…..Help!