Hey all, As many of you know when I disappear from here that usually means that some not so great stuff has gone down. You would be right in your assumption. As many of you know I had some issues with my day job and whether or not this thing called, Celiac, that I’m graced with, was actually real. I’m not going to get into the whole story because it makes me too sad and angry every time I go over it. I’m sure many of you know anyway already and i believe this blog is about putting forward positive not negative.
There are many things I do need and want to share with you.
First, this Sunday at 9pm on Fox, a TV show called, Fox Files, did a piece on me and the day in the life of this Celiac. It also goes into the day job debacle for more clarity on that situation. I’m hoping you all will watch and encourage your friends and family to do the same. WE NEED PROPER EDUCATION ABOUT THIS DISEASE! As I’ve said from blog 1 that lack of correct information and education about Celiac disease and what that TRULY means is frightening. I’m hoping by opening up my life, people can see and learn that this disease has little do do with an allergy and merely changing your diet but is an AUTO IMMUNE DISEASE in its truest form. Which brings me to my second point-
Second, when the story about what was happening to me in my job broke there were a lot of different reactions. Many and I do mean most, were positive and supportive but I will get to that in a moment. The comments and stories by “journalists” speaking about a disease they didn’t have, a person they didn’t know, me, and a situation they clearly knew nothing about was astounding and quite frightening. Some of the comments I read were..
“I was a lazy actress”
“I was doing this for PR”
“If only I just ate gluten free I would be fine”
“I sound like i’m playing the poor victim”
and my all time favorite was that,“I was making it seem as though celiacs were disabled.”
I know I just said I would not spew negativity here but this needs to be addressed and I will tell you why. The fact that anyone, Celiac or otherwise, can make judgments on someone else and especially about their health is preposterous. The list I’ve stated above is the exact reason why we MUST move forward to help people understand about this disease and that is why I am mentioning this nasty display of ignorance. What’s scary is that some of those comments came from other Celiacs! I’m psyched for you if you are a Celiac who eats gluten free and feels fine. That is not my story though nor is it for many others. Again education comes into play here. A FACT, the longer you go undiagnosed with celiac disease the more havoc it does to ones body. My diagnosis took almost 20 years! Another fact I’ve been in the acting business for 20 years and can count on one hand the times I was ever in the press for anything other than my work. And lastly, a victim or disabled? Words I don’t even have in my vocabulary. I come from a very very modest upbringing, and worked hard, broke my ass to get everything I’ve accomplished. At this point in my life to discover this disease I chose not sit down and cry in my gluten free soup and instead bring hope and courage to lead the way for us ALL regarding this disease. So I beg of you all who are reading this, stop judging others until you walk in their shoes Celiac or not.
Last but most certainly not least:
I want to thank you all from the bottom of my heart for your outpouring of support. It has meant more to me than you can imagine. Its scary, as many of you know, when your body turns on you with this oh so sly disease. It makes you not only deal with all the fun physical aspects of it but the mental, feeling very alone. So to know so many of you feel the way I do was a gift. With this blog, my book (soon to come) my non profit organization, and many more things i have coming your way I will share that gift even further and hopefully get some positive change for all of us. So no celiac anywhere feels alone, scared, misunderstood, persecuted or left having to explain, AGAIN, what ails you.
I truly love you all for your loving support.
A special thanks to Gluten Dude and the other bloggers who went to there computers and intelligently said their peace. I thank you a million times over!
Another thank you is to CBS. Yes I said CBS, without their lack of education about this disease and not being very supportive of it or me for that matter, they freed me up and pushed me even harder to educate the community about Celiac. Also to get much needed HEALTHIER products out there for us. So what I’ve been trying to get off the ground for two years now, yes, wait for it……………. My Jennifer’s Way Bakery/Safe Haven for Celiacs is opening in the beginning of the year!!!!!!!!!!!!!
Ok so back to goodness, great recipes coming your way and education for all!
Much Love
Jennifer Esposito
Bravo! By choosing to be our most authentic & loving self, we leave a trail of magic everywhere we go. Keep smiling, your friends will have your back. The heck with the rest of them.
Bravo for you, Jennifer, for staying positive with all the fallout! As a mother of 2 Celiac young adults AND a mother with this condition AND with a husband who ‘suffers’ with this lifelong condition too, I sympathize with you 100%. When we were all diagnosed in 2005, thanks to God for our daughter, I didn’t just have to figure out to heal the sickest member of our family, I also had to make the change for all of us. At first it was easy—-but that honeymoon ended real fast after about one year. Those foods labeled or guaranteed GF —-the packaged replacement gf foods—-we’re making us horribly sick! We too had to deal with the doubters—yes, fellow Celiac friends who weren’t getting sick, along with doubting family—and it hurt terribly!
7 years later, I am older and wiser. Our kids are now young adults who know their condition, know their symptoms and won’t and don’t take crap from the doubters. To me, this is a life or death condition—if you try and please the doubters, you WILL get sick, and you could even get disabled for a while. Your recent events are maddening, but also an open door for the ability to educate more people. I will never lie to anyone ever again—this can be a hellish condition to live with—food companies lie, MDs don’t now about healing diets like SCD or GAPS and so we some times get the pleasure of getting sicker after diagnosis than ever before In our lives.
Good luck to you Jennifer! I am simply a stay at home mom who ended up homeschooling our 2 kids because regular school never would have been possible with the severity of our Celiac and subsequent leaky gut and my heart goes out to you as a mom for your pain and suffering due to something that should be a no-brainer—-eating GF.
I only recently found out you suffer like me with this horrible thing and have found it great to read your blogs and know Im not the only one! I was just 21 when I was diagnosed and 5 years later still find it very hard not just to find something to eat (although places in Ireland are starting to cop on and supply food) but also to deal with the other problems that even though I eat completly gluten free never actually healed. I have long lasting stomach problems and have to be very careful this will probably be there forever I have come to accept it but get the same line “just dont eat bread” from people all the time which tends to launch me into a class on Coeliacs haha! I wish you good look and a good recovery from your current health issues and hope you get a break in them as I tend to get every little while if just for a bit. Hopefully the stress of everything hasnt caused any more issues as stress tends to make me worse no matter how well you are eating. I think what has hindered out plight as coeliacs is that you have celebrities eating this way as a diet now. If they where really coeliac and eat the alternatives (bread, pasta) I have on offer here they would be putting on weight and it drives me mad for people to think this is a fad diet. Those people cut out gluten but eat nothing but fruit and veg they do not eat the alternatives! They are not coeliac they choose it. We have not!
Bravo to you for speaking up and educating about Celiac. I lost count of how long my misdiagnosis from my doctor took. What is worse is that my 9 year old sons blood work came back positive and are on to the next step. While relieved that we may have answers for him, it angers me that this poor child has aphid issues since birth that were ignored or discounted. I can be tough withh how miserable I have felt, but to put a child through that is disheartening.
Jennifer, you have been in my prayers the past few weeks after the new broke. I know all too well that ‘radio silence’ can mean a number of things, but when you’re going through trying times regardless of circumstance, I firmly believe that the greatest gift is the freedom and clarity of vision derived from the former experience. You’ve walked through the fire and come out brilliantly inspiring and clearly ready to do what you can to bring light and truth to those of us in the GF world.
I am incredibly excited for your upcoming endeavors and hope to lend a hand wherever I can to make your mission all that more powerful as people like you (and Gluten Dude and so many others) inspire me to keep on going.
And thank you for sharing your frustration! I too try to keep things positive, but I think something can be said for sharing some of what is hard or painful framed in an empowering way. And that’s what you’ve truly done. Looking forward to hearing more about your new safe haven and all your endeavors in the coming months!
Thank you so much for everything you do for the Celiac community! Your story has helped me so much as I have only been diagnosed since February.. I have felt so alone and had alot of negative “doubters”. Reading your story for the first time a few months ago, I was literally saying YES That’s EXACTLY how I feel!
I live in a small town in Georgia and there is DEFINITELY a lack of education here. If you say Gluten,people look at you like a crazy person. I am still trying to determine all of my cross-reacting foods such as Dairy, corn etc. so this has been a up and down journey for me as well. Keep posting, keep standing and keep educating!!
On a side note- I have “boycotted” Blue Bloods! Not the Same without you anyway!
Much Love
Nicole
I was so sorry to hear that you have such turmoil in your life. I speak for myself and a LOT of others when I say that we REALLY DO appreciate all that you do in “leading the charge” on educating the general public as well as those of us who read your blog. I know how difficult it is to hope people are understanding the situation you have to deal with everyday. I don’t have gluten problems, I have thyroid issues. It really bugs me when someone asks a question about it and then does the “eye roll” when you give them your answer. My son is the one who is gluten intolerant. I pass all of your wonderful recipes on to him. I usually make them for him and then give the recipe along with it! We really do appreciate them.
Thank you again for all of your hard work and heart felt care for all of us.
Happy Thanksgiving to you and yours,
Jennifer
P.S. The baby I wrote you about, is doing better. It turned out to be an allergy to dairy products….not wheat.
Good for you Jennifer for sticking in there and not giving up. I have celiac disease, along with my son and daughter and know full well the ongoing health issues associated with it, despite living a gluten free life. I am praying for you. I only wish I could watch your program tomorrow–I have checked Fox and can’t find it.
Can you please tell us more about the Sunday TV show at 9pm on Fox. I live in Pa. I have many friends in NY and NJ. What is the name of the show and who is the host.
Thanks,
Susu
I’ve been celiac for 21 years and know the feeling. I was happy to see the Blue Bloods episode that featured the “glutton free” pizza. I knew then that Jennifer was making headway.
I’m sorry you’ve had trouble, Jennifer. I am an RN; there are so many things out there that can happen to a celiac. I, like you, am trying to spread the word, especially when it comes to the know it alls…”If only you did……”, etc. They are clueless. Let us all work to clue people in – the firm yet gentle approach. We celiacs must stick together!
Jennifer, I am sorry for all you are going thru. I miss you on tv! I will be watching the fox show. Keep fighting the fight for celiac awareness. Your good karma is undoubtedly on the way. <3
Thank you Jennifer ! I also have CD and have other issues come up as well. Diagnosed 2 years ago after 41 years of living. Had my 6 year old tested just in case, and she has it too. But had no symptoms. People are unfortunately ignorant, but I do believe more and more people will begin to find out they have CD and I think it’s a much larger problem then the medical community knows about.
Thank you again for your courage and hard work in our community.
Roxanne
Thanks for the shout out Jennifer. As we have discussed, there is SO much work we need to do to continue to advocate and educate. I’m happy to be your partner in crime as we take our voices to the streets.
We sure as hell didn’t choose this journey but it’s all about moving forward.
I am brand new at this sort of…I have been sick for 12 years. Finally a diagnsis that was never conclusive …Mixed Connective Tissue Disease….and I have been taking prednisone for 8 years to function, and still feel so lousy. I was told at one time I had elevated gliadin and possible celilac disease…I went gluten free x month…but no one seem to follow up…a very long story of drs and pass the buck…recently I believe in this – gluten free…I would like another blood test, and one question I want to know, ’cause I do not feel I could trust the drs. to know…will prednisone affect the testing….will discuss with my rheumatologist 11/20 but will do gluten free on my own…it will be very HARD, I am already a vegetarian…all my life. I love this site and counting on it supporting me thru this battle. Thank you so much Judy
Jennifer……kuddos to you. Your the winner here and you have proved it already. You needed the time to get things going and God is with you all the way. I pray God continues to bless you with health, work and everything your heart desires. Have faith your doing your thing. Keep up the good work. I admire you and your work. Take care of yourself and keep you head up!!!
Hi Jennifer, thank you for the great update, although I do not have this disease I admire what you are doing to help those who do.
My biggest gripe is with CBS. I think what they did was not just cruel it was in-humane. It was like they just wrote you off without a 2nd thought. CBS to me is becoming more and more like the bad apple in the bunch, once again only thinking of themselves. You and Danny make such a great team on the show, you cannot and never will be replaced in my mind, no matter who they put in there. I’d prefer not to watch without you on it. I love the whole cast but if that’s what it takes, so be it.
I wish you nothing but the best with your health and I truly hope you will be back on the show before too long.
So glad to hear you are moving forward. What everyone needs to remember is that there is NO CURE for this disease. It is a lifelong struggle. I have been gluten free for over 15 years and still have occasional issues. We can only deal and try to stay positive.
Jennifer,
I really understand how it is to not have the realities of our disease be accepted by most people. I have celiac disease, gluten encephalopathy, and ataxia, and was diagnosed way too late in life. Even two years after diagnosis I was sick and tired of thinking about how I will tell people I am sick and tired of talking about how sick and tired I am of being sick and tired. I am one of the super sensitive, who has had every organ, tissue and system scarred by my immune system. After being gluten-free for 5 years, and not setting foot in a restaurant that is not 100% gluten-free for 4.5 years, my immune system is still set off by being downwind of a bakery or restaurant and breathing the air. I recently had to go on disability. I share the multiple sensitivities that you have.
I recently had dinner with Dr. Rodney Ford, and attended his lecture. I am of like mind with Dr. Ford, the author of the most books about gluten problems. He said that celiac disease is primarily a neurological disease. He is also of like mind in being opposed to the ideas some doctors (who are not GF), who specialize in celiac disease, have: that drugs or vaccines will help us. Dr. Ford says that gluten is bad for everyone, and that any symptom in anyone, at any time, should be suspected to be caused by gluten. He says that “gluten-free” has been defined as less than 20 ppm, so that food companies can carry on business as usual. He wants us to change the language to “gluten-zero”. He says that we should ban gluten from the planet, and thinks we can do it in a generation. I see the symptoms caused by gluten in almost everyone. All of the drugs advertised on tv are to cover up the symptoms of gluten, and cause many more. There will be a war between the two factions, he said. I knew the same before he pronounced it. I hope you will join Dr. Ford and I.
We are all brought up to be brain washed, ignorant and addicted to gluten. All addiction starts with wheat. The idea of the cultivation and culture of wheat is the prime example of human folly.
Thanks for sharing your story . Know you are MISSED very much on the tv show.
I certainly can understand your health issues. I too was diagnosed 20 yrs too late, and though that was over 9 years ago, I never know how I will feel when I wake up. Intolerances and allergies pile up each day, even when eating VERY LITTLE processed food . Compound that with mouth sores that come and go at their leisure , eating can be a challenge. You should see my suitcase when we travel , especially overseas. By the time I fill the bag with food and herbal remedies my hubby always wonders where the clothes will fit
But we must go on, make others aware of the disease, and support people like you that bring the disease into view to the rest of the world. Even if you are called ” weird” , eccentric, and picky.
Thanks for ALL your work, and success in the future endeavors. Wish your store was in Palm Beach
Jennifer, Thank you for becoming an advocate for all of us Celiacs, especially those of us who are still sick despite being as gluten free as possible. Like you, I am so tired of people assuming that having Celiac Disease is the same as having an allergy to wheat. I agree that the more we communicate and get the word out about what it truly means to have Celiac Disease, the better off we will all be. I will definitely watch your show on Fox tomorrow night. Good luck to you in this next stage of your journey, and peace! Jess
You have handled CBS far better than I would have. You are an inspiration for all of us that have this fun disease. I get tired of people saying a little wheat won’t hurt you. Well come into my world and find out!!
Thanks you for standing your ground and shouting from the highest mountain!!!
I’m sorry for what you’ve gone through with CBS but THANK YOU for your cotinued support and all the information that you bring to us. Looking forward to watching the show on Fox tonight.
Hi Jennifer, my heart goes out to you as I have Hashimotos thryroid disease which is a autoimmune disease also and people don’t want to understand. Gina Lee Nolin ( one the gals from the TV show Baywatch) is a great support and gets the word out there for all of us along with author Mary Shomon. Her FB or web is Thyroid Sexy. Take a look or maybe contact her on how she gets the word out. It helps her and all of thousands that follow her. That’s where our support is going to come from, from those who understand and are trying to feel good. Take care.
Après! (Bravo)
Being a newly dx celiac, I have learned so much from reading your blog. I have friends and family who think what I have is ” ALL IN MY HEAD” they don’t understand and the struggles of your daily life. Every decision you make of what your putting in your mouth has a direct effect of how your going to be feeling in a few hours. Or when the Brain Fog creeps up on you because you’ve been slipping up on your diet.
I have 3 children ( God Bless them) and a very large family and great friends. I’m also Armenian which means everything we do is always surrounded by food. And all the good stuff is made with wheat and barely and deserts have semolina and filo dough and etc. this is one of the hardest things we are all going through, and I applaud your ongoing effort to educate all the ignorant pple out there who don’t have to worry about what their going to eat when they go to a dinner party or lunch or spending the holidays and asking themselves ” IS THERE GOING TO BE SOMETHING FOR ME TO EAT THERE?”
Thank you for being so open and honest and REAL!
GOD BLESS!
Thank you for all that you do Jennifer! This is such a frustrating disease, and we badly need more people speaking out and educating the public. Please let me know if I can be of any help as you launch your new projects.
InspiredRD, I follow you and appreciate everything you continue to do for Celiacs and being GF!
Good luck, healing and health to you Jennifer!
Celiacs is such a crazy disease. I believe my daughter was born with Celiac and was only diagnosed at 16 when I heard someone else talking about her daughters diagnosis of this disease I had NEVER even heard of. She is 21 now and living mostly a normal life with Celiac.
My daughter, Brittany’s symptoms as a baby were “cholic”, stomach pains, projectile vomiting, unexplained rashes and hives over large parts of her tiny body. As well her teeth were unhealthy and she had many fillings when she was just 2 years old. Doctors were no help so we began our own diet adjustments. We had some success eliminating dairy so kept that out of her diet for years.
Fast forward – now that her body has healed she can tolerate dairy. I believe that there is a chance your allergies mentioned in the Fox special may go away after your body has had time to heal – so be well and have hope!
We’ve found a flour / baking mix that we really like at:
http://www.glutenfreecreations.com
We bake most everything with this using our regular recipes.
Praying for your healing!
Brittany’s Mom
Excellent interview on Fox
Can’t watch Blue Bloods without you.
It is the ONLY show I watch. Seriously.
My hUsband is retired law enforcement a few years in NYC We have asked many friends to watch. Let us know if you go back.
I think I might have the same problem.
Big weight loss and can’t figure out why. I think maybe……
I didn’t know your story before tonight. I had been away from the interwebs for a while and missed Gluten Free Dude’s post, bad Mel I know. Last night I got a text from my husband’s former boss, Mel tomorrow night Fox Files about Celiac. I didn’t know what it might be about but was going to watch. Shortly before the show started I read a brief article about the topic of the show and that you would be on. I was interested with the fad of gluten free in Hollywood and was leery of what you might bring to the table.
What I saw though was not a woman who was not just doing this diet as a fad but someone who is where all of the gluten free community have been at some point in their gluten free journey. I cried, realizing how lucky I am to still have my husband. I cried because I didn’t buy what the doctor was telling him and figured it out on my own. I cried because, unlike my husband’s former boss (the one who sent the text), CBS didn’t understand what you are truly dealing with in your life.Most importantly though, is I’m thankful for you. We have a face of Celiac now. One who is willing to scream it from the highest mountain. What worries me though is how many others are afraid to get tested or let others know that they have it because of what CBS did.
Great job on Fox tonight, Jennifer! My husband discovered it was coming on so I quickly texted my daughter-in-law since she, our three grandchildren, and I have celiac, and she and one of their children also have RA which also requires the GF diet. I will do our Christmas dishes and be in charge of seeing that there is no cross contamination going on as we share the holidays with the rest of our family. I look forward to using your recipes. Since our 15 year old grandson had the highest Celiac number, having gotten the gene from both our daughter-in-law and myself he is extremely regimented and has a super attitude although an occasional offender sometimes gets through his guard. God bless you with your celiac battle and employment concerns! Blue Bloods has been our favorite since it first aired, but it will not be the same without you. Sincerely, a Grammy in Texas
God bless you girl….saw your special on fox tonight..i never realized how debilitating this disease was.You are a strong and courageous girl…keep up the good fight …hope to see you on blue bloods soon…God bless…my prayers go out for you….
I’m an attorney who concentrates on employment law. Coincidentally, I also have Celiac, although luckily it appears to be less virulent than Jennifer’s . Anyway, it seems to me that what was done to her is a flat-out violation of the federal Americans with Disabilities Act (“ADA”) as well as similar state laws, such as California’s Fair Employment and Housing Act (“FEHA”). [It sounds to me like Jennifer lives in NY, but it's probable that NY has laws comparable to those in CA.] If she hasn’t already done so, she definitely should IMMEDIATELY pursue legal action against these folks!
Steven in CA
God bless you Jennifer!! I miss you not being on Blue Bloods!! Having a definitive diagnosis is a “start” in your journey to wellness! I will pray for that wellness and will follow your blog, so I can follow you on that journey!!
I watched the Fox Files and cried the entire time! I’m traveling tomorrow to another Doctor for back to back tests. On one hand I’m praying for an answer,, on the other hand, I’m afraid it’s Celiac! If so, it would be 34 years for me! My life has been “messed up” since I was a young child. I’m so glad I got to see your story on Fox Files, and I even recorded it!!! Thank you for giving me hope, it was ironic that show was on while I was sitting here prepping for the tests tomorrow. Thank you sweetie!
I, too have lived with undiagnosed Celiac for most of my life. Last year, I was told by yet another doctor that I was faking my illness. It took nine doctors and over 20 years to find the right diagnosis. It takes a doctor who will actually listen and who has the knowledge, ability and willingness to find out the types of devastation taking place in our bodies. I am hoping that your popularity can help bring knowledge and understanding about this disease…not only to employers and the general population but also to the DOCTORS who are supposed to be helping and healing. When doctors tell you that you are fine, when clearly you are not, they do a complete disservice to us as patients and to their profession!
I applaud you for you strength and determination to turn Celiac into a positive! Thank you for standing up for all of us. It is time for the spotlight to be shone on Celiac Disease!
Jennifer,
Loved you on Blue Bloods. I truly hope that something can be worked out where you can return. The show is not the same without you.
I am looking forward to trying some of your items. I have been GF for over two years now, but had been misdiagnosed since I was 15, which is dreadful for a high school student to deal with, I was 42 when I found out what had been wrong with me all those years. Lots of medicines and being told it was in my head left me feeling very depressed and frustrated. There is freedom in having a diagnosis that can allow you to adjust and move on with life.
You are an inspiration! The Fox Files story last night was really informative. Thanks for all you are doing!
Jennifer, i completely understand your frustration, my husband was diagnosed with coeliac disease around 3 years ago at the age of 32 having spent years in pain. From that point the realisation of the fact that Gluten is in almost everything you would have normally eaten is huge and that every label has to be checked thoroughly, eating out is almost impossible as if it doesn’t have gluten in it, it has probably been prepared around gluten. We are both serving police officers in London and asking the canteen staff if a dish contains gluten is like speaking a foreign language.
However we now have a little boy, unfortunately we won’t know if he has ceoliac disease for a few years as they will not test for it until a child is around 3/4 im the uk, but i have made it my mission to become a gluten free master baker! Awareness of coeliac disease is deinitely growing in the uk and with people going gluten free as a lifestyle choice the options are certainly improving!
I wish you luck and thank you for increasing awareness of the disease!
Thank you for speaking out for all of us celiacs who have experienced the doubt of others on our disease. As you said, the world needs to be educated and informed about CD and you are a wonderful advocate for us all.
Congratulations on the Bakery/book news! How exciting!!! I hope you are recovering well and feeling better each day.
Cheers!
Betsy
Jennifer,
We don’t follow entertainment news, so your absence from Blue Bloods took my wife and I by surprise. We missed your character and wondered what had happened.
Then on Sunday I decided to record FOX Files after seeing a promo of you during the day. I’d never even heard of the show before. I took a peek at it this morning and couldn’t stop watching. I was thunderstruck because your listing of the symptoms was describing my wife and her suffering all these years.
I just wanted to thank you for going public. Of course we’ll wait for a medical diagnosis, but will go gluten free immediately.
(I haven’t even been able to reach my wife to tell her what I’ve learned about celiac disease yet!)
You might want to check with a DR first. When I was being diagnosed, they did not want me to stop eating gluten so they could have an accurate test.
After one and a half years of what I thought was a really good GF diet, I became really ill and now fighting a sinus infection that is not allowing good sleep and right now afraid to even put antibiotics in my system. I saw your Fox Files Sunday and found your blog and now feel like I understand just a bit more. There are few doctors or nutritionists that understand it. I am lucky to have a client/friend who is trained in matters of the intestines and is helping me to health with a good diet. Thank you Jennifer
I happen to catch the Fox news segment that featured your monumental challenges in getting a correct diagnosis, as well as the collateral effects, like to loss of work, lack of compassion and understanding, etc.. Bravo! I applaud you for your incredible stamina, bravery, and your crusade to get a mainstream spotlight on this very real disease. I was recently diagnosed with Microscopic Colitis (which can only be detected via biopsy taken during colonoscopy) after debilitating symptoms left me exhausted and afraid to be too far from the privacy of my own bathroom. For the last five months it has been managed with medicine which I am now being weaned off since it isn’t intended for long term use. My GI told me I would not need to be on a gluten free diet, since it has not been shown that MC is induced by food or gluten allergy and, though MC is still barely understood, is likely to be an autoimmune disorder. Regardless, I opted to eliminate gluten and have been mostly gluten (and coincindentally symptom) free for the past five months.
I had a reception for an exhibition of my master’s thesis artwork last weekend. Since I hadn’t eaten all day, I ended up lightly snacking on the finger foods we served. I have no doubt those foods were loaded with gluten and I am suffering today with a major flare. I’m sure eating these things, coupled with weaning off my meds, have everything to do with this relapse.
I’m curious to know if anyone who has been positively diagnosed with Celiac also has a diagnosis of Microscopic Colitis, or vice versa. I don’t know if Celiac shows up during a visual inspection during colonoscopy or if it can only be detected microscopically, like MC. It may be I need to ask the GI if he has ruled out Celiac, in my case.
Thanks for what you’re doing, Jennifer. I’ll be keeping an eye out for ways to help your (and all of our) cause.
DO NOT LET THIS GO WITHOUT ANSWERS!!! The answer to your question is NO, just because you were tested for colitis and had a colonoscopy doesn’t mean a thing to being tested for celiac. Your dealing with two different intestines. Please know, and for EVERYONE READING THIS, A proper blood test for CELIAC specifically needs to be done and even then you can get a FALSE NEGATIVE. Meaning that the test comes back too low to call or inconclusive or even scarier, negative. I’ve known many people who didn’t show celiac in blood work and had an endoscopy to only find out they most definitely had celiac! I implore you if you really feel celiac is your problem demand an endoscopy. This is truly the only real way to see the villi, which gets damaged when one has Celiac, is to get a biopsy. Finding out the celiac is your problem sooner rather than later is KEY!
Pls keep me posted
Be Well
jennifer
Thanks for that clarification, Jennifer. The good news is I had an endo done during the same session as the colonoscopy. Biopsies were taken from my throat, stomach, and duodenum so it may be that he tested for Celiac. They came back negative. There were signs of inflamation in the stomach, erosive esophagus caused by GERD, and the meds he put me on for that are meant to heal the erosion and reduce the overactive stomach acid production. The endo also showed a hiatal hernia, but we don’t have plans to correct that. I will ask asbout the blood test for Celiac, though I should add that prior to the scopes, I had a plethora of cultures, and blood work ups done to rule out every other thing under the sun.
I’m a retired stunt woman and left motion picture work entirely in ’98 when I had my son, after working primarily in NYC for 15 or so years. There were times when I thought I wouldn’t make it through the day of a shoot, long before I had a diagnosis. I’m glad to be out of it – it’s a fickle and mostly unkind business and I’m sorry for what you’ve had to go through.
cheers!
Katherine
Katherine,
I don’t even know where to begin in my reply to you however I, too, have microscopic colitis. There is so very little known about this autoimmune disease and it is treated like a redheaded stepchild for some reason. I don’t know if you have found the microscopic colitis forum but it is located at http://www.perskyfarms.com/phpBB2/viewforum.php?f=2
In addition, I have had a negative endoscopy with regard to Celiac sprue but positive for gastritis. I was told that I did not need to remove gluten from my diet and was put on many different drugs to treat MC. Unfortunately none worked and Entocort and Lialda caused significant side effects. I continued to suffer in silence and needed to stay near a bathroom at all times and it greatly affected my home and work life. Finally after over 10 years of suffering, having my gallbladder removed due to gluten intolerance and eventually joint pain all over as well as thyroid disease (once you have one autoimmune disease you are prone to others), I started researching on my own and put the pieces together and decided to remove gluten from my diet and made an appt with a functional medicine doctor. Through lots of testing it was determined that I do have a very high intolerance to not only gluten but casein (dairy protein) and soy and from all the years of damage to my intestines have now developed leaky gut or intestinal permeability. Although I don’t test positive through the “gold standard” I’m very much intolerant to gluten and through much of the reading I have been doing, Celiac disease is just the tip of the gluten iceberg. There are many of us out there. The other concerning comment you made was with regard to your GERD diagnosis. Again, I’m not a doctor but from much that I have read physicians are very quick to write scripts for PPI’s to reduce gastric acid production when in fact, the problem is often low gastric acid that is causing the discomfort not too much gastric acid and taking these strong drugs have the opposite intended effect, compounding the problem. I’m not stating that this is specific to your issues however please be cautious if you have been prescribed a drug in the ppi family (Nexium etc). I really urge you to find a functional medicine doctor who can run further testing on you through Cyrex Labs or Genova Labs as an example. These facilities have tests which are much more advanced and sensitive with regard to gluten intolerance, leaky gut etc. I hope you are able to get some answers sooner than I did so that you don’t continue to suffer needlessly.
Kelly
Thanks, Kelly. I found the MC forum last week and also checked out the book.
Entocort worked well for me and I am currently down to my final week weaning off it. I’m on dexilant for the reflux disease/esophagus erosion. The primary goal with that med is to stop the acid damage and heal the esophagus. Even though my GI told me to “eat whatever you want” (huh?!!) I chose to eliminate gluten, sugar, dairy protein, caffeine, and soy from my diet, and have lost 25 lbs in the process, since my diagnosis. So, the weight loss has the added benefit of alleviating pressure on my gut, which was another factor contributing to reflux. Once a follow up endo shows my esophagus has healed, I think I’ll be able to get off the dexilant. It’s a difficult lifestyle change but there is no denying the benefits.
I’m not familiar with the term “functional medicine doctor”. I’ll look into that.
Thanks again.
Katherine
I have been gluten intolerant for many years and also have fixed food sensitivities along with other food sensitivities that flare up from time to time. After debilitating dehydration, a colonoscopy showed Microscopic Colitis. I immediately did my research and learned that means “an allergy to something”. On my next GI visit, I confirmed that with my doctor. He said “yes, it does mean an allergy to something you have ingested”. So I still feel that we have to do our own research and our bodies tell us when something is wrong. I think it’s a way of life for those of us with autoimmune issues. Because I am also soy, dairy, egg, corn, and yeast free, I realized I was eating a lot of goat milk cheese, thinking it was okay since it wasn’t from a cow!!! I am so grateful for Jennifer’s website because I realize I am not alone in this madness.
I just saw 5 minutes of the fox news show, that you were on.
I’m sorry that I didn’t see more
Where can I get more information about celiac and your journey?
I’ve had celiac, dianosed, for 1 and 1/2 years, I,m 74 years old, you can only imagine the damage. I’ve been gluten free for the entire 1 and 1/2, and am still having problems, with different foods.
Anything that I can learn to get along in this world, would be fantistic.
I pray every day for answers to this disease. Thank you and God bless you.
I can only imagine what you have had to endure going undiagnosed for so long. Well you have found a place here on Jennifers Way where you are heard and appreciated. Please take full advantage of this site for recipes, info and much needed support.
I wish you nothing but health and know you are in a community who gets it!
Much Love
Jennifer
Jennifer – I have been a celiac for 6 diagnosed years. Suffered with colitis and celiac for 40 years. Am finally getting help from Dr. who understands our problems. Still not 100% but working on it. CBS needs to be sued to the nth degree. Lets have one of their uppy-ups have an attack and then see what he says!!!!!!!!!! No one can tell what an attack is really like until they themselves have one. Am looking forward to your recepies.
THANK YOU for the difference you are making to SO MANY- (whether already diagnosed or seeking answers – and who are now more aware of celiac). As I have found with myself – the passion for promoting awareness and making a positive difference is the balance to a negative history behind it. For each ‘oh crap’, now what am I going to do – I have found another path that I was ‘supposed to’ be on. And when its right, it feels right! Thank you for using that ‘fuel’ you were given to impact others. Was so glad someone told me to record Fox Files last night
Hi, I have celiac. I have tons I cannot eat.I am basicaly down to whole food diet to aurvive…or no food at all. Very severe. No one outside of my home gets it no matter how many times I tell them why I cannot have banana bread they made me for christmas. People generaly do not care… And would rather not know…it is sad the voews they take, and opinions they have when they do not have a clue.sad.
Hi Samantha; I too have severe Celiac symptoms when I eat anything but whole foods. I also live with the repurcussions of not knowing that I had Celiac…I knew something was very wrong but didn’t know what…. I hear you. I eat to survive as well. Food is no longer appealing. It used to be that food was comforting and enjoyable. What I had to do was change my view of food and think of it only as nutrients ingested to live well.
One thing that has helped me so much is to get involved with my food…I grow everything I eat. We have a massive vegetable garden in the backyard. I share with my neighbours and feel really good about my contribution to our area.
The one thing that I have learned is that just because a label says gluten free does not mean it is safe for every person with Celiac. Symptoms and systems are very individual. For example, soy makes me extremely sick as does corn and a host of other foods.
I responded because I don’t want you to feel alone> I am walking the same walk:)
Cat, thank you. I found out years ago. I was bleeding out both ends. I could bately swallow. In the end it took every bit of 3 years to heal my intestines,skin…and I lost 85 lbs. I was so bloated from being so sick…from eating gluten and now know about 30 other things I should not have.I ate only hard boiled eggs,no sugar…only honey,and no canned food,and beans from crockpot,also took a B-complex. I discovered in order not to have problems with milk I needed the enzimes in meat to break down dairy protiens. It has been a long road,but I keep learning. I saw fox files, I have empathy for anyone suffering from celiac and allergies (true allergies,as my kids do) having celiac means more than just saying you have food allergies. It almost killed me.
I am so sorry for your suffering and general lack of compassion of those around you. I hope you have the strength to continue with your diet despite those around you because as you well know, the banana bread ain’t worth the flare!!!
I react to too much processed corn like chips and tortillas too. I was I was so sad to learn this because I felt like it was one of those only things I could eat to feel normal like tacos, etc.
Jennifer, I have been a huge fan for years and have loved you on Blue Bloods and was so disappointed when I found out what really happened. You will truly be missed on that show.
I did not know what you were going through until I watched you on Fox Files. I have to say that I have been fighting some issues myself and have had colonoscopy, mri’s, ct scans, etc. I have been diagnosed with divertiulosis, but feel that there is still something wrong. I talked to my Gastro doctor and they have also tested me for Lactose intolerence (I’m not, but highly sensitive) and a Lactulose test for bacterial growth (It came back negative). I have just had the bloodwork done for Celiac’s and am waiting for the results.
You are an inspiration to us and even if it ends up that I don’t have Celiac’s, I will continue to support you and be a voice for those that do have it.
I wish you all the blessings you deserve and will continue to be inspired by you.
God Bless you,
Mercedes
Jennifer,
Whoa! $100 for a few groceries – ah, the NY lifestyle
. I was diagnosed a year ago, but had few symptoms: a bit sluggish, no weight gain since way back in high school (128lb on a 5’10″ frame). I feel worse for my mom: she read 10 years ago to look at Celiac if the docs couldn’t pinpoint a problem otherwise with those few symptoms. She had forgotten about it until I was diagnosed and has major mom-guilt now. As for CBS: believe me, they likely have hundreds of Celiac sufferers between corporate and affiliates and I’m sure they’re getting an earful internally as well as from the general public. I felt bad for you when I watched FOX and heard your doc rattling off all those things you are sensitive to. What’s left – fish, water, and GF foods? I miss good stuffing at turkey day, and don’t want to spend the outrageous $ to buy a few GF loaves to dry out, so I’m enjoying mashed potatoes more than ever now. Have a wonderful holiday season, and use your reduced energy to focus on your positives – it sounds like you have a wonderfully supportive family. Be very well.
what would we do without potatoes
Bless your heart! I sure feel your pain as I’ve been battling the “side effects” of being Celiac since August. Loss of hair, quit sweating was the beginning to disaster – now I have to walk with a walker, my speech is slurred (not always, comes and goes), have sensory neuropathy (extensive nerve damage to hands, legs & feet) and Lord knows what else. After 8 doctors locally scratching their heads and saying, “Are you certain your sticking to a gluten free diet?” I have traveled many miles to find doctors who didn’t know but are researching to find what’s wrong. I continue to have more testing, including an upcoming MRI…
Big hugs to all whom have suffered for years undiagnosed. Along with those (I’m one – your are NOT alone) who deal with the lack of education others exude. My own husband (I’ve been diagnosed 5 yrs this coming March) still doesn’t “get it”. I so tire of explaining it to him and others as well.
This last gastroenterologist set him down and told him the following:
1. Your wife has gone so long undiagnosed (25yrs) that she has permanent damage to more than just her digestive system.
2. She’s going to have a lifelong battle with all sorts of other auto-immune diseases because of it.
3. It’s NOT her fault that what she ate yesterday may make her ill tomorrow.
and my favorite
4. Educate yourself, stop making her feel guilty for being ill – be supportive instead.
These are things that I believe all Celiac’s family, friends, co-workers, etc. need to understand. I am tickled for those who are diagnosed relatively quickly and do “just fine” on a gluten free diet, but please quit accusing the rest for “cheating on our diets”! It’s not a diet, it’s a life change and we’re smart enough to do our darnedest not to eat gluten or be cross-contaminated.
Hang in there, Ms Jennifer! There aren’t enough words to thank you for all you’re doing for us all.
As a child, moodiness, fatigue, bloat, lack of coordiation, stomach pain and weight gain were insidious symptoms, and called poor behaviour/attitude and laziness by my family. I struggled to learn and was called stupid and lazy by my teachers. I gained weight and was blamed for eating too much by my doctors.
My body eventually forced me into a vegan diet after experiencing such horrendous symptoms from eating everyday foods. Within a month I was thinking clearly and the weight was falling off me. I finished university with honors in 3 years…
Your body and mind will tell you that something is very wrong. Trust yourself and don’t accept what others say! It is not your fault. Blame can turn abusive. Be kind to yourself and be your best advocate.
About 4 years ago, one doctor told me that I no longer needed B12 and that because I was eating gluten free for so long that my stomach would now tolerate gluten. My mistake was in believing him! I was excited to eat normally again.
Well, it almost killed me. I had awful neurological symptoms, lost feeling on my right side, endured brain fog, my body swelled out of control, and had absolutely awful stomach pain, I suffered from an inability to speak properly and landed up in the hospital. For months, my GP kept telling me that it was not celiac..he said it was depression! The neuorologist in the hospital finally figured it out and sent me to the endocrinilogist
Moral to this story…be careful of the doctor you choose. So many don’t know much about Celiac disease and ignorance can cause horrible suffering! I am back on a vegan diet and after months of healing am now able to function. From now on, I will question everything a doctor says and trust my own body and mind to tell me what I need to feel good.
Must add to my posting that I am both a Vegan and gluten free….
I am still learning…for example, I.have been eating chick peas that I thought were safe for me but have learned that chick peas are grown beside wheat crops so there may be cross contamination. Ask your grower before you buy.
Also should amend what I wrote above… doctors did not cause my suffering but the lack of knowledge perpetuated my suffering…big difference.
I took a B-complex from healthfood store to help with my energy level and to try to help my body get the most out of the foods I could eat. I have found I cannot have gluten …period. ie; corn. No soy,corn,fish fresh or seafood,no cornish hens, also discovered I have to know what an animal was fed before I can.eat the meat…duh I never thought.of that. Basicaly nothing processed or with presservatives….none. There is so very much I could not have it dawned on me, start with blank slate only putting on it the things I know I can have. I refocused…cried,then cried some more. It all became easier as I began to feel so mich better.No more burning blistering skin,stomach pain gone, I could actualy leave my home and not fear leaving the bathroom. My breathing became easier no longer short of breath.Jennifer we walk the world find ourselves in the throws of thos thing,then we begin to see the ignorance in the world…for no matter how you try to inform people…among those who do not suffer it falls on deaf ears, my own mother did not believe in food allergies or celiac…still trying to get her to understand.
As you well know, any comment brings the crazies out of the wood work, whether it be on facebook, twitter, television and the fact that you are a celebrity makes it so much worse! I am thankful for your story because it is similar to mine and I am thankful to you for giving it a face and helping people to understand it is not just an allergy, but an actual disease that affects every aspect of your life if you do not keep it in check.
Oh my, reading through these posts I cannot believe the pain and suffering so many have endured! I am so thankful for a supportive nurse practitioner and support of a husband who encourages me to stick to my diet because he has seen first hand the damage it does when I do not. He also supports me when I just don’t feel good, without blaming me. I will say it took a while to convince him that I did not feel well and it was not my fault. I also believe that even if I do stick closely to a gluten free diet I still occasionally have episodes, I’m not sure if it’s cross contamination or my body simply reacting to something else like coffee. I have read a lot about auto immune diseases and they usually come in groups. I also have RA and I’m only 34. I feel like the goal of talking about Celiac Disease is not to judge and criticize one another but to give it a face and importance in society. Each of our stories is different and each of us suffer differently, but the only person who understands exactly how I feel is a fellow Celiac, so let’s be kind to one another.
Jennifer,
I’m so sorry you had to go through that.
I am Gluten Intolerant and that’s pretty much the comments I get “you’re not Celiac, so it can’t be that bad. Big deal, you have to give up gluten products”. Well, yeah, it’s not as bad as Celiac, but considering you’ve been eating gluten foods all your life and a LOT of them are your favorites, it IS a “big deal” to me.
It sounds like you went through the same thing I did at my last & only job in 2011. I had a nasty boss who didn’t believe I was ill, when I didn’t know yet I was a GI & many, many times had to go home after my lunch – or even cutting it short – because my stomach was VERY bloated which was causing my back to ache intensely and at the same time my neck was stiff & I had a massive headache. Fortunately, I turned 62 that November & was counting down the time I could leave that job. It was a temporary job, so since my temp agency felt the same way as my boss – I received NO help from them ( they allowed her to stop me from going to doctor’s appointments) – I gave myself a Christmas present and walked off the job Dec., 23rd, 2011.
I am retired now & dealing – or still not dealing very well – with my GI.
I’m very happy to hear they didn’t get you down, that you’re very upbeat.
I miss you on your show – it’s just not the same without you!!
I wish you the best of luck in all you do!!
With utmost regards,
Youre friend, Leslie
I, too, have to add that a doctor didn’t diagnose me. I went to them, had all the tests but they didn’t know what was wrong. SO, I researched all the things I was feeling – bloated stomach & backache, maily – & the results came up Gluten Intolerant. I am also Lactose Intolerant, so I’m having a lot of fun trying to eat things that do not include those items. Fortunately for the Lactose there IS a pill-chewable for it.
I, too, REALLY appreciate all that you do in “leading the charge” on educating the general public as well as those of us who read your blog.
I do try to educate people I come across who think it’s easy.
Take care, Jennifer. I’m behind you all the way!
Leslie
Thank you for being a positive spokesperson and source of support to our community.
I’m so excited to hear that you are channeling your energy into getting your bakery and safe haven going! Take care of yourself and keep us updated.
Jennifer
Will we ever be able to buy your products in the united kingdom???
I hope so, I love the website, my experience of coeliac is very similar to yours and I find your website inspiring, refreshing and so helpful, I hope I can purchase your products soon
Kathryn xxx
soon i hope
be well
jennifer
Jennifer, great post! I so agree with you regarding the “judging others” aspect. I am so glad we met you on TV. My husband and I always looked forward to Friday nights at 10…. then you were gone! We found you again when you had your interview and now I feel privileged to connect with you through your blog. I have a part time job handing out food samples at my local grocery store. It is amazing how many people tell me they can’t have gluten. My coworker has Celiac Disease and is constantly looking for recipes. I have become very interested in the subject due to my belief that we need to be good stewards of these bodies the Lord has given us. Thank you for speaking out and I pray that many lives are changed through your efforts for yourself and for others who are seeking answers. Bless you!
Jennifer, thank you so much for going on television and telling your story. I have had abdominal problems for years, some resulting from surgeries, but each year I was able to eat less and less, and have become weaker as a result. I’ve noticed when I eat certain foods with gluten my mouth breaks out on the inside. I went and looked at a blood test I had taken years ago for Celiac and I noticed I was one point under “borderline”. As you stated your body deteriorates as time goes on.
I was amazed that you also were told by doctors that it was “in your head” and they tried to give you medications. This happened to me also and it was so frustrating. One can tell when there is something is physically wrong with your body. I have always been so active and happy.
Thank you so much. I am going to try a gluten free diet.
I pray that your symptoms improve and you get stronger each day. I understand what it is like to suffer and you are never sure what your body will tolerate. Each year symptoms are added that don’t even seem to relate to your intestines. When you mentioned collapsing on the set, I could relate so well. Again, thank you for sharing your story and I wish you nothing but the best!
Loved the Fox Files interview. I have been diagnosed with Celiac disease since 2006. It did a lot of damage since I was not diagnosed until later. I noticed that on Fox Files that your doctor mentioned to you that you were allergic or intolerant to other things such as nuts, broccoli, chicken, steak and such. What was the entire list that he said you were allergic/intolerant to. What is usually on your grocery shopping list? I love to go grocery shopping and cook. I am sure everyone here would love to know your usual day to day shopping list. Thank you for bringing Celiac disease to the forefront! All the best, Victoria
I am just learning about gluten and such. I have been ill for so long at times and no one seems to know what it is. I think I am on to something here.It all makes sense. I am reading a book called ‘Wheat Belly’, wow what an eye opener. Then I saw the Fox news report with Jennifer…I am a believer. I too was told its all my head at one point.
Thank you so much Jennifer.
I found your log because of the Fox story!! I am so grateful to see someone put themselves out there and to have this blog. My sons have celiacs and it was a long journey. Its great to connect with others that understand. Thank you!
How sad that CBS is being that way. I do not have celiac but as a child I never got my teachers to understand migraine headaches. My friends did not know what they were. I often felt misunderstood.
I hope people can embrace you, learn about the issue and help you on your journey to be healthy. It can be very lonely when people think you are seeking attention.
It astounds me that CBS can suspend you without pay when you have a medical diagnosis. Can the Americans for Disabilities Act do anything for you on this? It angers me so that people still have to go through this garbage. I do not have your disease, I have fibromyalgia. That was no easy task to get diagnosed, as I was told it was all in my head, or just think happy thoughts and the pain will go away. So, I do understand some of what you are going through. Shame on the CBS executives that have made this very poor and uneducated decision. I would venture to say that you have multitudes of people in your corner. Not to mention the fact I love your character and miss having you on Blue Bloods. Take care!
Thank you for sharing not only information but the feelings associated with being unheard by family, friends, and doctors. While I don’t know yet if I have Celiac, I finally found a doctor to realize that SOMETHING is wrong and it needs to be investigated. It is such a relief to be believed. Since I have many food allergies as well as depression, doctors would just automatically assumed my complaints were from food allergies or that my depression was to blame. UGH! So thank you for sharing how people really can be sick even though their symptoms are not obvious or understood. I also had a hospital wonder if they could feed me. When my son was born, I brought my own food. I wasn’t taking any chances. BTW, I too am allergic to chicken…it is in EVERYTHING! And if you go out to eat, ASK. Because it is in every soup, sauce, meat, etc. It has been in beef, pork, turkey, and tuna dishes as well as rice at restaurants. I hope for better ingredient labeling so “natural flavors” is no longer allowed in our food labels! We shouldn’t be afraid to eat. But hang in there, you are not alone!
Oh, I also forgot to mention that I am allergic to everything that was mentioned (& more) in the FOX News segment except for broccoli. So I know it can be challenging! But I will say that you will crave chocolate less and less as time goes by without eating it, I promise. I can’t have carob or hazelnuts so I can’t suggest any recipes with those ingredients as a substitute.
And my doctor that suggested I see a specialist…? My psychiatrist who treats me for depression. He has a rare immune disease that was diagnosed in the past 3 years so it is nice to have someone who understands what it was like to always be sick as a child and how people thought you were making up your symptoms. His “cure” is an infusion every 4 weeks and eating G-free. I’m happy for his diagnosis and am looking forward for mine. But this time, I am NOT giving up until I find an answer. I deserve to feel the best my body can and so do you! 
Jennifer,
I loved watching you on Blue Bloods and am really sorry for everything you have been through. You are so right in that everyone has their own path to healing and the longer you go untreated, the longer healing can take . However, your experiences are opening some exciting avenues for you! Please keep advocating for yourself and those of us in the celiac community,
So excited there is a new resource for those trying to live the GF life. I have two adult kids, one with celiac and one with high auto immune numbers for gluten so the Gastro Doc said no more gluten for either one of them. They are both away at college and we are less then a year into diagnosis. Even though they are both working hard to stay GF, and expected to feel better upon starting to eat “clean”, both are suffering from chronic fatigue. Super tired even upon waking. I’ve done alot of reading trying to find out if this is common upon starting the GF diet. One doctor just says it may take time for a body to adjust to the new diet. They are so frustrated to feel exhausted constantly in order to be “healthy”. Is this chronic fatigue common? Desperate to know how to help my kids!!! PS love you on BB. Hope we see you back. Stay strong.
UGGGHHHHHHHHHHHH!!!!!!!!!!! Thats my frustration for you and for all who write with these stories. A gluten free diet is NOT the end all of this long journey with Celiac disease. Chronic fatigue is very common with this disease BUT you must have a full panel of blood test to check nutrient and vitamin levels!!! Vit D is a big culprit of zapping energy especially when you have celiac. Also pls READ all the gluten free labels out there. what I always say NOT ALL GLUTEN FREE PRODUCTS ARE CREATED EQUAL!!!!!!!!!!!!!! Most, and I mean almost ALL, contain loads of sugar, starches and preservatives. All those ingredients are not helpful to your body in any way. Your children need to eat CLEAN,ORGANIC Whole foods. I know its hard but vital to get your energy back. Please look at My 2 week Gluten Free Challenge for some great tips on how to start this new lifestyle.
I wish you and your children the very best
be Well
Jennifer
Jennifer,
I’m not sure where to start, so I’ll just plunge in. I’ve always admired your work. (I’ve followed you since your days on Judging Amy.) You are so gorgeous! Anyway, I want to thank you for being a spokesperson for celiacs. (I still have a lot of reading to do, but I’ve started wondering if I have issues with gluten. I suffer with numerous medical issues, including Fibromyalgia, osteoarthritis, chronic depression, and hypothyroidism. The list goes on, but those are a few of my major issues.) Because of my Fibromyalgia, I know what it’s like to feel that you aren’t being “heard”…for people (including the medical community) to treat you like you’re “crazy” or that you are imagining things. (I just spent three days in the hospital with diverticulitis…and was treated like I was a “drug seeker”…being questioned about whether I needed pain relief because of back pain or abdominal pain.)
I don’t know if a decision has been made about whether or not you’ll return to Blue Bloods. (I hope so. But, I hope that those who have treated you badly won’t continue to do so.) I don’t know if I’ll continue to watch the show without you or not. (I’ve watched the show with my elderly mother. It’s a wonderful pastime that we share.) We both love Tom Selleck, and I think Donnie Wahlberg is so handsome!
Keep up the great work, both in television and in your quest to inform others about Celiac Disease.
It is frustrating. Some people are very understanding & actually make me GF pies, when our park is having a buffet.
And, others, when there’s a women’s lunch to go to, they just don’t understand how it bothers me that I can’t order what I USED to be able to eat my whole life prior to last year. When I tell them that’s why I won’t come along, that I can only have GF food, they say “well, you can just have a coffee & enjoy the company.” No, I can’t. They’re ALL ordering Fried Breaded Shrimp – which was ALL I ever ordered when I was young & my family went to a fish place pre-GF, & the only thing I can order at this women’s outing is an expensive steak. Now, I know this sounds strange, but believe me, when it’s fried breaded shrimp you WANT and ALL you can get is steak (which I dearly love more than anything else, but not when I’d prefer the fried breaded shrimp – and they put it on top of the steak so I have to give it to someone else), the steak just doesn’t cut it. Or, they say, “well, have the salad bar”. No, I can’t have the salad bar for the dressings may have gluten or the vinegar may not be processed on a designated line. Also, I love hamburgers, & hot dogs, & people tell me “well, just remove the bun or tell them to keep it off your burger”…..no, that’s not what I want. I love hamburgers – the whole kit-n-kaboodle.
So, I just stay home & cook my own food – that way I can at least be pretty sure there’s nothing in my food to harm me.
What can I say, I was a bread-aholic, & Thanksgiving, & Christmas is the time of the year that it bothers me the most. The GF breads/rolls/buns/crackers companies our there leave a lot to be desired.
Sorry to be so down, but I think the reason it’s bothering me so much is my GI was self-diagnosed, even though I’d gone in for an endoscopy last year & my specialist showed me there was nothing wrong in my stomach, but didn’t even suggest it could be a gluten problem. He DID do a Celiac test on me – at my request – but by then I had been off of gluten for a few months & I found out later that you need to be eating gluten right then, for it to come back positive for CD. At my next visit when I learned this I told him I’d researched my symptoms & everything came up GI. He just said good. ($4,000 bucks down the drain – at least I know the inside of my stomach is fine – as long as I don’t eat Gluten!)
Even my partner JUST doesn’t understand. She thinks she can bring cookies, & cakes & chocolate, etc. into the house when I don’t have anything GF to eat. We were given a recipe for flowerless peanut butter cookies, which helps, a little, sigh, but they get boring, like the breads, etc.
I hope everything gets better for you Jennifer. I still miss you on Blueblood, a LOT!!
Well, Happy GF Holidays to all!
Leslie
Hi Jennifer
My mother hasn’t been tested for celiac disease the symptons that you mention
My mother has a few of them she doesn’t
Eat. Wheat anymore
She got sick four years ago
She got anemia which I found out you get it from celiac disease
She changed her diet to a vegan she feels
A lot better she still gets symptons
We love your website
Keep up the good work
I hope it gets better your health that is
We loved watching you on BlueBloods
Its not the same were hoping you will
Be back on the show
Good luck with your new venture
Thanks
Maryann
Jennifer, thanks for brining awareness to celiac disease. I am in a new job where the boss thinks I call in sick a lot and am not really sick. I’ve mentioned I have celiac disease but haven’t gone into detail because I’m use to people not taking it serious. After reading your blog, I realize it’s up to me to educate her. I’m two years out from a celiac diagnosis and going to cut out pre-prepared foods as you’ve suggested and make my food. Maybe that will really get the gluten out of my system & I won’t sick so often. Thanks for the blog”
Speaking of day job problems, this is a letter I just sent to Gluten dude…
Hi Dude
This is kind of a rant with a desperate plea for advice as well. I’m the one who wrote the post about trusting doctors…well this one is a whopper and it just keeps getting better!!!
I work for one of the big 4 cell phone providers in Denver and in their defense, they’ve been working with me quite well with all of my problems. The problem this time now is my so-called GI specialist. I’ve not had a good report with this GI specialist from the start. The GI doc had initially diagnosed me with IBS and of course that was totally wrong.
My original GP physician (who kept misdiagnosing me and refused to refer me to a specialist) had initially filled out short term disability paperwork requested by my employer which was accepted at the beginning of December until December 28th. I advised my GI specialist on the 31st of December that I was still really ill so she stated she would extend my short term leave until the end of the January, but, told me it had been 2 weeks since my diagnosis and I should have been feeling much better already. She chided me and said I wasn’t following my diet closely enough and needed to be more careful (I didn’t bother to tell her I only had 8 weeks of paid disability anyway).
I got another set of STD papers and took them to the GI on this Monday the 7th. The doc filled out the paperwork and then proceeded to insinuate I was deliberately gluten bombing myself for attention and for the disability (like I was going to get rich off of that LOL). I also asked her to do a letter on her office letterhead stating it would be beneficial for my health for me to work from home and my employer would gladly set me up to telecommute for my job…everyone thought that was a great idea; my boss, my family, even the doc’s PA thought it was a great idea. The doctor refused to do the letter for me and when I asked her why, she said it was because I didn’t need to work from home and refused to give any other explanation when I pressed her.
I left the doc’s office Monday late morning with paperwork in hand and wicked and vicious thoughts in my head about my doc. I faxed the paperwork in early Monday afternoon and almost immediately my employer’s main office called me and told me that the paperwork submitted was the wrong ones, I need a different extension form. Well my fault, I misunderstood which set of papers needed to be done…no big deal right? I faxed over the correct paper to the GI specialist office right after that phone call with very polite instructions on what was needed, and that I’d pick them up Thursday morning at her office. The doctor’s PA called me today and left a voice mail AFTER the office had already closed, saying that the doctor would release my medical file to me but was NOT going to do the paperwork because she had already filled out forms for me on Monday. Oh and had I mentioned that on the fax cover sheet I stated that my employer had to have the papers by 12 noon on Thursday. The form? Well it was a total of half of one (1) sheet asking for the doc’s signature, phone number, address, dea number and diagnosis and requested attachment was supposed to be my “official” diagnosis and SHE IS REFUSING TO DO THIS!!!! I’ve already had way too many absences from work now and without those papers being turned in by tomorrow noon, I am going to lose my job. I don’t have time to find another doctor to fill out the stupid form nor, will I even have enough time to get in to see my regular doctor to have them do it. Oh and did I mention, she also said I didn’t need FMLA papers because if I followed my diet correctly, I’d never get sick and there would be no need for intermittent leave.
Mind you I’ve never been snotty or smart with any of my doctors, I’ve always been contrite and polite to all of them and followed their instructions to the letter. I don’t understand why doctors are such a$$h***s and why this particular doctor can’t get her narcissistic a$$ off her high horse to do a half page form or a short letter for my employer. I won’t even go into what she’s already charged my insurance company. I thought about contacting an attorney but even that would be too little, too late. I’m going to try to explain to my boss what happened but at this point, since the paperwork WON’T be done, I’m not holding out much hope.
Hopefully I can find some way to wiggle myself out of this situation. If I keep my job and more importantly, my medical insurance; I’ll still need a new GI specialist and a new GP. I have looked on forums and websites, asked other people around here but NO ONE I know knows of any docs that are knowledgeable or at least sympathetic with celiac issues. Perhaps some of your followers know of any decent docs in the area. I’d even be willing to travel over 100 miles to find a good doc…please ask your peeps. Thanks for allowing me to rant.
Nancy in Denver
Just a short note to Dude: I understand totally!
12 years ago after having a colonoscopy & endoscopy my GI ( who had ROTTEN “bedside manor” ) found nothing, AND I HAD TO ASK HIM IF HE FOUND ANYTHING, and what he had the NURSE give me was written out on a small prescription paper was “slight small erosion”. ( I had been having diarrhea for a VERY long time that’s why I finally gave in to drinking that gallon of crappy salt water & had the C & E.) I then asked him is it IBS & he said “what’s that?”!!!!! After this stupidity I asked if I could change to the DO that was among the doctors in this office & was told “no”, so I waited 10 years until he retired ( he should have ALREADY retired BEFORE he did my C & E – he was that old ) and made an appointment with the DO, who was ALSO a “Fellow” & “best in Phoenix”.
Well, this time the visit was at least a pleasant visit, but, he forgot that I didn’t just want the “pill” & the “twilight sleep”, that I wanted to be totally out for the Endoscopy ( couldn’t afford both, & it was my stomach that I was having the problems with – massive bloating ). After the endoscopy I had a follow-up with him in which he told me & showed me my stomach was TOTALLY clean, no problems. Prior to this appointment I did a search on my symptoms & everything came back pointing to Gluten Intolerance, & Lactose Intolerance. HE never mentioned these at my first visit with him. I had to ask him at my follow-up appointment, in which he said “could be” & did the Celiac blood test, which came back negative. I found out later in my Gluten 101 book that you have to be OFF gluten for 4 weeks before getting the blood test!! HE should have known that!
So, as I said, I totally understand – there’s practically no good doctors out there. They’re only in it for the insurance money.
Leslie
Oops, sorry, my “reply” was to Nancy in Denver, not Dude.
Leslie
To Nancy in Denver. Sorry, I finally had the time to fully read your “rant” and the only suggestion I have at this time is to turn that GI “doctor” in to the AMA. I think you can do it via the internet, but I’m not sure, but they most likely will have an address to send complaints to.
That is SO totally disgustingly lazy of her & what she’s saying & doing to your life. She is sick, sick, sick! She is VERY unprofessional.
I hope you were able to work it out with your job. Please update this site with how you’re doing.
Leslie
(I apologize to all for these many replies.)
I know I’m not supposed to do this but if anyone knows of a good doc, please email me to newelch at hotmail dot com. Thanks all.
it seems to me that dr’. want to cover the symptoms but not try, i mean really try to take care of the desease itself. they also worry more about your insurance covering this before they even gibe a rat’s ass about you, the patient. choose a dr/. well. i’m still having a problem here in michigan finding a responsible doctor.