There has been some back and forth from some of you about my recent blog – about my disgust with the lack of care for what goes into our gluten free food and major manufactures.  Some wrote that Dunkin Donuts new gluten free products are being made in a clean environment and that I should have researched that.  I did, and stated that in my blog.  Other comments were about your children being able to feel normal and being able to grab a donut with friends.  Yet another said it looked bad that I’m calling out Dunkin Donuts maybe because they will be my competition for my up coming bakery.

First let me start by saying that anything I write is MY OPINION, that’s why its called Jennifer’s Way.  I’m just bringing you what I believe, and learn, while navigating through this ever-changing and tricky disease.   Second,  as I’ve said before, MY CELIAC IS NOT YOUR CELIAC.  For ME, eating sugar, starches and highly processed foods make me only feel worse.  So that one minute of “normality” brings ME a week+ of illness, bloating, pain, brain fog and painful headaches. And as far as the comment that I may fear Dunkin Donuts being competition for my 400 sq ft., strictly gluten free, dairy free bakery packed with organic hand-made products is just silly.

I’m not going to try and convince you about the necessity of eating clean, healthy gluten free foods.  I’m also not going to say that a treat once and awhile is wrong.  I especially cannot tell a mother who sees their child hurt not only from this disease but because they feel different to not let them be a kid once and while.  All I want to get across is simply this, I have suffered from this disease going undiagnosed and was told to eat gluten free and I would  live a healthy life.  That was WRONG!  Its 1/8th of a tsp of gluten that damages our villi, (yes i’ve researched that) so my complaint about manufactures not taking this disease seriously does anger me.  The food we get that says gluten free needs to be 100% gluten free. Most do not understand that giving your child or yourself that one bite of “normality” could be hurting them in the long hall – and OVER TIME can leave you were I am, still healing my messed-up gut.

The number of people that write to me saying they have been gluten free for years and still don’t feel well is scary.  Is it because what they THOUGHT was gluten free wasn’t? And they were poisoning themselves overtime?  Or is it the lack of nutrients in most of the products they were consuming?  Maybe both?  I happen to think so.  All this information is for you to take and do what you will with it.  My wish is for all of us who deal with this disease, either personally or as a witness for someone else, is to feel well and be well.  Unfortunately sometimes that isn’t the easiest road.

~ Jennifer

This Post Has 98 Comments

  1. Kevin

    Good post and rebuttal to those ignorant of the disease, Jennifer. Many people mistakenly think those of us who are gluten free do it as part of a fad and not part of a treatment for a debilitating disease. Keep spreading the truth!
    @kevin_mackie (twitter)

  2. Veronica

    Hi Jennifer,

    No matter what people are always going to comment whether negative or positive. All I get from your blog is nothing but positive and all i want is for my daughter to eat right and feel better because I know what’s it’s like when she starts feeling bad even a little crumb will make her sick. I guess some people just don’t understand and it’s true, her celiac isn’t your celiac, everyone I’m sure has different symptoms but I totally get your blog everything I buy for my daughter has to be 100% Gluten Free and yet it may say gluten free but I still check ingredients because you just never know.. So thank you Jennifer for your blog and we just can’t wait for your bakery to open.. God Bless!

  3. Eden

    Hang in there. My mom has the same level of sensitivity that you do, and it’s awful to see her suffer for days when she accidentally gets cross contaminated foods. I’m sorry to hear you’ve been criticized for taking a strong stand for real 100% gluten free products. Your passion for education might offend some, but it will also be of great help to others. Again… hang in there.

  4. Carol

    Amen to that Jennifer! My husband, 4 children and myself all have different levels of gluten intolerance. Each is effected so differently from the other. We cannot compare one person’s celiac to another…not at all. Hoping because my children started out gluten free much younger than their parents that they’ll have a healthier adult life than we are faced with. Best of luck to you and your bakery! Can’t wait to hear all about it.

  5. Elaine

    Jennifer,

    I have never understood people wanting their child to be normal. I want my child to be exceptional! A normal American child these days is Obese, lethargic, and has vitamin deficiencies.

    My daughter doesn’t have celiac, she doesn’t have the gene. She has no food intolerances. I still wouldn’t like her to have Dunkin’ Donuts every Saturday, or McDonalds 3 nights a week. Does she have junk more often than I would like? Absolutely, she is a teenager. But to say “Finally my child gets to be normal” because a sugary treat is available to them stuns me.

    I don’t think these people are bad parents, not at all. However, I think we get so caught up in being just like everyone else, we forget to be ourselves. We have to have the same clothes, the same car, the same food etc in order to be normal. Don’t strive to be normal, strive to be exceptional!

  6. Charlene Hayden

    Thanks for the useful information you provide. My son does not have celiac disease-he has an auto-immune disorder called Eosinophilic Esophagitis, and one of the many things he cannot eat is wheat (other items are milk, egg, fish, nuts, and soy). Because of this, I tend to go gluten-free for him. Most people do not understand the minute amount of food that can make someone with these types of disorders ill, and cross contamination is a huge issue. Again, thanks for all you do!

  7. Sandra

    I so agree Jennifer! Everyone’s celiac is their own! I went undiagnosed for 50 years. First symptom was at 2 weeks (lactose intolerant and failure to thrive – lucky my parent’s double feed me each feeding!) Because I went undiagnosed for so long I suffer from leaky gut. One of my food sensitivities is rice, the prime ingredient in most processed gluten free foods. I made a promise to myself last year I would reduce my processed foods. So far so good. Making my own yogurt, ricotta cheese, and baked goods.I tend to eat mostly fresh fruits and vegetables. Because of my new found ability to adapt recipes and it is an outlet for my creativity I have been writing, photographing, and illustrating a cookbook, mostly grain-free. Hopefully we will move into the mainstream of eating rather than just for celiacs.
    I must say here in Boston people are so excited about DD’s gluten free selections. They are disagreeing with me as well. I say a donut is never good for you and we have an excuse not to eat them! I worry about the gluten that is in the air so I never even walk in for a coffee so what about the gluten residue on the packaging? No, I will not try it. Lucky for me I never really liked donuts! :-)
    Good luck with your bakery.

    1. Sammi

      Good on u making so much yourself,that isn’t easy! I feel for u on not being able to have rice when that’s in most, I can’t have the oats or lactose.. Unfortunately because I’m still very ill I won’t be able to tell yet if there’s other things I need to avoid whilst being coeliac. Jst wanted to sympathise on what lengths u have to go . It’s really nice and refreshing that ur looking at doing or currently doing a cooking book helping others with the same issues.

  8. nantucketdaffodil

    jennifer,

    Thanks so much for fighting the fight for us.

    Our daughter, Callie, is 9 and has Celiac Disease. She was diagnosed a year and a half ago because she hadn’t grown, and had belly aches.
    The diet has changed her life. She feels better, she has grown! But it is, as you know, difficult!

    We heard someone say recently that Celiac is one of the only “diseases” that can be managed. Most diseases have no cures, no hope. We loved hearing this, as HOPE is so important.

    I agree with what you said, My celiac is Not Your celiac. Every case is different. Callie doesn’t experience the bloating or headaches. And perhaps on occasion, if we stop at a DD, I will pick her up a donut to make her feel ‘normal”….but only if it is truly gluten free, and is made in a dedicated area, with dedicated machinery and no cross-contamination.
    We will do our homework…something we have become accustomed to doing. We won’t do it every day….just now and then. To me, it’s like me allowing myself a sweet treat in the midst of dieting.

    Wishing your bakery was closer….I have an amazing blueberry buttermilk coffee cake recipe if you need it ;)

    Thanks again for fighting the fight. And keep this as a place to express yourself. I have a blog, and it’s a wonderful way to share, to vent, and to make new acquaintances.

    Looking forward to your next post.

    Monica

    1. nantucketdaffodil

      To defend my ‘normal” comment….No, a sweet sugary treat isn’t what I was really deeming “normal”….for C it’s more about the normalcy of doing something she used to, or that others do…we dont have gluten free bakeries around here, we cook every meal at home, I make homemade baked goods….an occasional sweet treat is not the devil for Cal even though it may be for others….remember, everyone is different!

  9. Chelsea Turrone

    I also have Celiac disease and despite going on a very strict gluten free diet for over two years I had very little improvement. It wasn’t until I stopped eating all grains, legumes, dairy and cane sugar that I actually felt better. The difference in how I feel is staggering, and I felt better after just one meal without the aforementioned foods. I eat almost no processed foods now and I feel much better for it.

    I also have a three year old son who is a very sensitive Celiac and I struggle to create a sense of normalcy for him when it comes to food. Luckily, he is very picky and suspicious of unknown foods so it’s pretty easy to control his diet. Whenever we go out to a function where there will be treats I always make sure to bring one for us and if I can I bring enough to share. That way my son has the experience of sharing a treat with other kids and its an opportunity to educate others about Celiac disease and clean eating.

    I am lucky in that I get to stay home with my son and have the time to cook from scratch for my family every day. I realize that most other people have other responsibilities that can make cooking and baking a challenge, but I have found that the more my family eats the good food I cook at home, the better we feel and the more time we have to do other things that are fun!

    Thank you, Jennifer for your opinions and your posts. I find them inspiring!

    Chelsea

  10. arnold zimmerman

    I am glad that you stated that gluten free does not always mean gluten free. The government has set levels for the amount of gluten that can be in a food labeled as gluten free (scary) and that is 20 parts per million but that is still not gluten free. In addition, I have previously stated that one of the biggest and most egregious pieces of misinformation is this idea of “gluten free” when what is really meant is gliadin free, which is the offending protein in wheat and then barley, rye, etc. If one is truly sensitive then all grains can be trouble and the gut will never heal and that means no quinoa, no rice, etc. Sometimes when one achieves total GI healing, some grains can be reintroduced but not always. We need to move away from this dangerous notion of deprivation and this never ending need for comfort food. There are many foods that are good for all, without having to deal with this cloud of guilty pleasure hovering overhead.

  11. Linda Germanetti

    Jennifer, you have helped so many of us! For all those who take your advice lightly and think you over-react….we can only hope they get involved in their own research and well being. I have learned…the more I learn, the more I still have to learn. This is a life long project. I have forwarded your website to friends who are hurting and they are so appreciative. You really have no idea how far your words travel! So for those people who hurt and offend you, I apologize. We applaud your efforts and truly understand how time consuming fighting celiac disease and educating the public has become for you. Thank you! Can’t wait to go to your bakery!

  12. Karen Mahoney

    As a wife of a husband who is disabled, a celiac and a mother of two celiacs, I understand and appreciate everything you said. Like you, I am sick and tired of people passing judgement when they do not walk in our shoes. I am also quite weary of the gluten-free fad that has most food packed full of crap that I wouldn’t feed my dog. I appreciate your products, your vision and your courage more than you know. Keep on keepin on! God love you!

  13. Rita

    Hi Jennifer,

    Thank you for this informative blog. I am just amazed at the level of care that is put into gluten free food i am being sarcastic.
    It’s amazing how they companies claim their food is gluten-free but yeah right if you read the back of the box said it says its made in a facility that has makes wheat products. How gluten-free is that? How regulated are Gluten-free products I’m sure not very. Many nights I have stayed awake because i am in pain i am extremely sensitive to glutens. I have suffered for many years not knowing I am celiac until one day I decided to go to take the blood test for Celia and it turned out that i am celiac. it’s just amazing how much better I feel not eating Glutens. I was in pain for 20 to 30 years. It was horrible. Thank you Jennifer for this informative site.

  14. Georgia

    Don’t apologize. Dunkin Donuts serves crap. If you’re there to buy anything other than coffee, then you need to take a serious look at your diet and that of your children., because you are leading them directly to type II diabetes which in case someone has their head in the sand is an EPIDEMIC in the US. That disease is quickly becoming the new ‘normal’ in this country.

    As to gluten free – I also spent 20 years being told that I have chronic fatigue and who knows what, going from doctor to doctor. And while I do not have celiac, I was told by a MD in Sept 2012 that I am likely gluten sensitive. After 4 months the head fog and supposed migraines are gone, as are the digestive issues. If I screw up and eat the tiniest bit of gluten I now recognize what it is doing to me, and I pay for it for a couple days.

    I only wish your bakery was in Westchester because going to NY to buy bakery is just too far for me!! Why don’t you open one in Northern Westchester next and I even had a trained pastry chef that I could suggest to you to run it.

  15. Georgia

    BTW, many people are clueless. I remember dropping my child off at daycare when she was two. And the child next to her was eating a chocolate covered donut from DD with sprinkles and drinking soda for breakfast. Really! Don’t both trying to explain to the ignorant. Your message is important.

  16. A. Orr

    Thank you so very much, again and again, for the heartfelt blog and the tedious amount of research information…you are much appreciated! I myself seem to be on this crazy and beyond frustrating roller coaster of feeling well and feeling “glutenized” despite nearly pathological concentrated efforts to live gluten-dairy-egg-soy-sugar free. I can 100% feel your pain and am not hopeful for a healthy future of my own at this particular moment which frightens me to actually write down today. I am embarking on my second colon cleanse to attempt to flush my colon and start “fresh” again. Sigh. Thank you for allowing this post. It is easy to feel very, very much alone in this some days. Blessings

    1. Saurabh

      Thank you for developing this surevy, I hope it will be an annual effort! In the future, it would be great to provide a quick 5-question evaluation form following completion of the surevy, e.g., how easy or useful was the surevy, what additional topic areas would you like to see in future surevys, etc. The GF community likely has great suggestions that will help focus future efforts and enhance the broad value of these findings. Congrats on a job well-done!

  17. Mary Anne

    Jennifer, thank you so much for the positive information you share with us. I do not suffer from Celiac’s. Everyone is different. What one person can get away wth another may not be able to. Keep up with the good work. I think you have single handly brought so much attention to this disease!

      1. Cookie's Mom

        It’s so hard as the mom of a kid with celiac disease to see him struggle even though we feed him as well as we can.

        Hang in there Jennifer. It’s easy for others to criticize, but not so easy to be as brave and outspoken as you. You’re doing a lot of good for a lot of people by speaking the truth about your experience.

  18. casey delo santos

    Aloha Jennifer,
    I just wanted to write and thank you again for your inspiration that has changed my life. I have been told for 20 years I have fibro and told to take anti-depressions (which I have refused) and pain killers. I saw you on TV and everything you said hit home. I knew I had a wheat and gluten intolerance but was not taking it very serious. Now I am, I wake up in the morning and jump out of bed, when I use to lay there and analysis how much pain I was in. You are my new hero and I feel in some ways you have saved my life. I feel my energy, joy and love of life returning. God bless you!
    Casey Delo Santos

    1. Montana

      Maybe I somehow misesd this question, but I didn’t see any question about the best overall gluten-free flour mix. For us, it’s Jules Gluten Free flour that comes in a 5 lb. bag the way flour is supposed to. I use the Pamela’s pancake mix for pie crusts and a few other things. I didn’t see Gluten Free Naturals listed anywhere for the choices for best brownie, pancake and cookie mixes either. Green’s beer wasn’t listed and neither were our favorite gluten-free pastas. I have two packs of the cards and don’t need more, but I’ll be interested to see the results of the survey,

  19. Shirley

    What have we done that “being normal” is eating a sugar filled donut> Argh I think I want to move to Japan or somewhere in the amazon where sugar does not rule our world. Normal is not eating donuts and pizza people, This normal has given us a society of overweight adults and children with diabetes, heart disease and other inflammatory conditions. Wow we really need to get our heads on straight and leave Jennifer alone she is just trying to help those out there who actually want thelp!

  20. toni

    Jen, people just don’t get it. All of these gastro autoimmune diseases affect people differently. I’ve been sick since childhood and often misdiagnosed. I don’t have celiac. I have ulcerative colitis and crohns. My symptoms, pains and triggers are different than someone else. Because we look fine on the outside, people don’t understand how sick we really are and how we suffer. You just keep doing all you are doing. Awareness is needed for all these gastro autoimmune diseases. Be well…..God bless

    1. Sammi

      Agree totally… Too right. This is what makes it so difficult for people like us,because we look okay on the outside , they don’t realise how sick we are , u don’t dare talk about ones coeliac disease or how sick we can be because people jst think ur exaggerating and they don’t take u seriously . What I find so difficult is, being compared to other coeliacs that these people know… ‘Well they are really well and can eat this and that” and then think ur stupid and being dramatic… When will society realise that coeliac disease is so very very different for every single coeliac disease sufferer .
      I do hope one day they do

  21. Makenzie

    I was diagnosed with a wheat, yeast, egg and dairy allergy when I was in fourth grade. (After having had years of chronic bronchial illness, and morning after morning being late for class because I was in the bathroom at school – unwell. Behavioral issues and learning issues also set in due to brain fog, headaches and irritability).

    I commend you parents who dig in and try to make dietary changes for your kids. Mine did the best they could in a small town with few options. Yes, I felt different as a child, but it shaped who I became as an adult. After changing my diet I felt SO much better, had better relationships with friends and teachers, and EXCELLED in school. I felt so much better that even as a young person, I was happy to make the right choices for myself – even when my parents weren’t present.

    Those changes helped me think clearly and feel well. As a result I graduated top of my class as Valedictorian, Class President, etc. etc… (A big change from where I was headed as a fourth grader.)

    I wanted to mention this because as parents I know you may fear that it’s difficult for your child to be different. But it’s so much MORE difficult for them to struggle just to function, focus and thrive when they are not getting the right foods.

    I have a friend who has a daughter that reminds me so much of myself when I was young. She’s a talented young girl, but has trouble in school, and has several food allergies. Her mom is the sweetest person and said to me recently, “I kind of just let go of the rest of the allergy restrictions – because she already has to sit at the nut-free table at school and I feel so bad for her.” I couldn’t help but speak up for the young girl who doesn’t know it now, but just needs someone to look out for her so she, too, can think clearly, feel well and connect with other kids at school and excel.

    So, parents – I know it’s hard. Not only to change your shopping, cooking, baking and social habits. But it’s also hard to help your child navigate school, birthday parties, travel and other daily functions with severe restrictions to their diet. Yes, they will feel different. But “different” makes for some really strong & unique personalities and that’s what we need for the future of our world. I fully believe your children will succeed and have a certain strength of character from having to be mindful of what they eat.

    And that’s my ‘two cents’ to say, “Hoorah!” for you parents who are helping your children see clearly into their future ahead.

    xo

  22. Rose Casey

    I couldn’t agree with you more, Jennifer. We’ve learned repeatedly that a food listed as gluten-free on a menu does NOT mean they are and that you won’t have any repercussions from eating it. We’ve found in our household that the only true gluten-free food you can trust and that “sets really well” is what we prepare at home. I, for one, value what you’re doing. Thanks for being out spoken about the issues. Much appreciated and refreshing!

  23. Michael

    I am grateful to have you as a spokesperson who has access to the media, for your celiac is closer to mine than the others who are in front of the television cameras. I am intolerant of cane sugar, dairy, soy, and much more, including all grains, legumes, nightshades, cruciferous vegetables, etc. – around 80 foods in all. At the age of 45, working 100 hours a week at night as the main render farmer of digital visual effects for a feature film that was behind schedule, I collapsed, slept on the floor for two hours, and got back up and went to work. I was alone. I did not get to the point where celiac disease was killing me until 10 years later, when I finally found a doctor who specializes in gluten sensitivity, 36 years after I went to a gastroenterologist about the extreme abdominal pain and got a clueless misdiagnosis. My doctor who diagnosed me told me I might be one of those people who can get sick just driving by a bakery. That turned out to be true. My limit is 2 lungfuls when I am strongly smelling bread or some other gluten source.

    I get encephalopathy and ataxia from even such little exposure. On October 1st, I had dinner with Dr. Rodney Ford. He said he thinks celiac is primarily a neurological disease, and he is also aware of people who are as sensitive as I am. He wants to change the language to “Gluten Zero”, and says that gluten is bad for everyone, and gluten needs to be a suspect behind any symptom in anyone. He said that everyone in the household of a celiac needs to go gluten zero for the sake of the celiac.That is certainly the case for me. I get completely sick if someone in the house heats any gluten, whether it be toasting wheat bread or boiling pasta. An 1/8th of a teaspoon does not just damage, it completely destroys villi. Not only that, gluten in a celiac can cause their immune system to destroy cells in any or all organs, tissues and systems in their body, scarring organs throughout, compromising the function of such organs as liver, kidneys, heart, lungs, and so on. This is another reason why we collapse on the job, as well as various types of anemia. This is one reason why we need organic, natural, nutrient-dense foods.

    Dr. Drew’s simple assumption that we just get temporarily weak from dehydration, and total ignorance abut leaky gut, as well as the fact that wheat is the beginning of all addiction, in which he claims to be an expert, shows that he needs to be schooled by celiacs, rather than the other way around. You showed more patience and grace under fire than I could usually muster. I thank you for keeping up the good fight.

  24. Concetta

    While sometimes I think your language could use a little polish in the posts, I never think your thoughts are wrong, Jennifer. I follow your blog for the same reason as Gluten Dude – your blogs are much more about the issues surrounding celiac than yet another blog about recipes, more products to use, and ways we can get hypnosis to stop being gf or something.

    I haven’t had a donut in at least 10 years (even pre-celiac) because I saw how they were made and was so grossed out I removed them from my diet immediately.

    But I disagree with the person who said we can’t have pizza too. Pizza doesn’t need to be filled with calorie laden crap, and it most certainly doesn’t need to be made with flour of any kind. Cauliflower makes a great crust, as does pounded chicken. Make it the way pizza was intended in Italy with a thin crust and a light amount of toppings, and its not only tasty, but its good for you. My favorite recipe is cauliflower crust with a bit of parmesan on top with shredded ham, egg, and mushroom with a small amount of sauce I make myself. Its very good and I make it often!

    Jennifer, I wish I could go to your bakery someday. I have a local bakery that’s wonderful about using higher protein and better nutritional flours than the usual rice flour with little to nothing in it that’s good for you that goes into most commercially baked goods. I don’t often make cookies or cakes, but its nice to have a good place to help with the normal needs of societal events such as birthdays and holidays. I hope your bakery will embrace the same idea – as an occasional treat, snacks can be made better (though they’re still NOT healthy).

    In my case, I resonate with the people that are celiac but not better yet – my habits slid over the holidays to include more processed gluten free products and restaurant foods, and I’m still suffering. My friends and I are doing a “health reboot” in February and I’ve committed to doing the whole 30 idea – no more processed food, no grains, no soy, and no dairy. I don’t think it will be a permanent diet for me but I do think it will help my body recover so that I can have the occasional grain (sorghum, amaranth, etc) product and not be sick like I’ve been glutenated for weeks.

  25. Laura

    I am one of several Celiac’s in my family. Each of us reacts differently when ‘glutenized’. My sister has to be quite diligent with her nutrition and the amount of rest she gets. I seem to get away with all sorts of stuff, BUT any amount of gluten ingested, inhaled, or put on my skin and I am ill for a solid week. I fight viruses and need to keep my immune system boosted with supplements.

    My children are blessed to not have Celiac Disease, but cookies and cakes etc were all boosted with whole grains so they could eat the fun stuff and get the best nutrition.

    Though I can get away with eating poorly and remain gluten free, I do my best to eat nutritionally dense food. I am certain if I cut out processed foods I would be even more healthy.

    Jennifer, I agree with you that many people don’t get it. Any gluten is bad gluten. 20 parts per million is still gluten and it will damage more slowly. If the people who make these rules did the same for, say, peanuts, the people with nut allergies would be freaking out. Why is it acceptable for gluten free or even organic food to have any other food mixed with it?

    Recently we saw on the menu of Boston Pizza that the Gluten Free Pizza and Penne could no longer be counted on being uncontaminated! I’ll stick to the the salad.

    I appreciate your insight and willingness to put your thoughts and experiences on ‘paper’.

  26. Ingrid

    Your right Jennifer, it is silly to think your competing with dunkin donuts. I think some people eat gluten free products because they think its healthier, unfortunately there is a big difference between gluten free and truly gluten free.
    I heard once that ( it’s none of your business what people think of you) I know your just promoting the good stuff about truly gluten free information and your not here to argue opinions nor should you have to. Keep up the good work.

  27. Frank

    Very few people have a handle on how small a molecule is. There was a mathematician a few years ago that wrote a book and he was on various TV talk shows.

    I don’t remember what his name was but the math behind what he was saying is universal. He has a number of brain teasers and the one I remember was this: “What are the odds that you are beathing the same air that comprised the last breath of Julius Caesar” ?

    Most people guessed that the odds were impossibly high that they were breathing that air (which might be pretty stinky – you know those Italians and their garlic).

    If you guessed along with the majority you also would be wrong! There are so many molecules of the various gases that comprise air in the average breath that the odds are over 50% that anyone at any given time is breathing at least one molecule from the general’s last breath!

    So now you have an idea of the size of gluten molecules and it is only common sense that even a teaspoon of wheat flour is about a million times more than what it takes to make a true Celiac sick!

  28. DaNette

    Jennifer
    I cannot thank you enough for caring so much! Our illnesses are so similar. It does get so frustrating when places say something is GF and it most definitely is not (then you are in bed for a week).
    My diet is so restricted, I cannot wait until your bakery opens. I hope like others, that you will be shipping orders to other states. Not having to worry about ingredients is a dream come true. Thank you for your hard work!!

  29. Sondra

    I completely agree that gluten free needs to be 100% gluten free. I will partake in a sugary snack every so often, thankfully that does not bother me, but I research the things I plan to eat or try. I make sure it is a dedicated facility and if I get the “its processed in a facility that also has wheat etc, I respond back that in my opinion, their product is not gluten free.
    I also get furious when companies all of a sudden add the declaration that they have wheat in their facility. I just came across this with a company that I have used for years for cereal and rice bars. I have 2 packages. One that states uses, soy, tree nuts and the other box that I just bought but had not opened that states, dairy, wheat and one other item. I emailed them and told them how furious I was that this has happened. I was 100% positive that a few years ago they had 2 facilities from their information and now, that is not the case. Needless to say, I won’t be eating their cereal or their bars and my daughter will not either.

  30. Frank

    I almost forgot to mention this: It has been my experience that Celiac destoys the ability to digest carbs. Most carbohydrates are aborbed and enzymatiaclly broken down into carbon and hydogen compounds in the small intestine (by the villi).

    We all know that some kind of battle ensues when we consume gluten and the Villi are damged. Some of this damage may be permanent for some people and it may take a long time for others to recover after years of abuse (54 in my case). It is possible that some of us will never fully recover.

    What this means is: Eating carbohydrate rich foods may make a Celaic sick, even if we completely eliminate all gluten from our diet. If you are still having problems and you are sure you are getting true gluten free foods, you may want to try reducing the amount of carbs you take in.

    I know everyone is different but this works for me. Sometimes I go on what could be thought of as the atkins diet. I stay on it for about 30 days or so and then I give myself a break. This strategy works for me.

    As I said everyone is different but if you are at the end of your rope (I hope not literally) what do you have to lose?

  31. Wendy Lavender

    Jennifer, I’d just like to add my thx to the excellent posts ahead of me. You’re putting it out there that a ‘gluten free diet’ is not the new LA fad but an extremely essential way of life for coeliacs and should be taken seriously and given the respect it needs.

    @ Michael, GLUTEN ZERO….. I like that.

  32. Kayla

    Hi Jennifer, thanks for this post and for everything you’re doing for us coeliacs. I think the problem is in people not taking the term “gluten free” seriously anymore because of everyone jumping on the GF “bandwagon” for other reasons. Many people without coeliac disease are cutting out wheat / gluten as they please to “lose weight” or because they think it’s “bad for you”. Consequently they’ll go into a restaurant and order a hamburger with a gluten-free bun, with a beer on the side, and then order a slice of cake. I can’t count how many times I’ve gone into a restaurant / cafe and asked, “Is this gluten free?” and they say, “yes” and when I say, “because if there is even a trace… I will end up in hospital” (the “hospital” word makes them sit up and notice) and suddenly they’re scuttling away to the kitchen saying, “Um, wait, let me just check”.

    Almost every time I’m served something sworn to be “gluten free” by chefs, family members and friends, I sneak off to the kitchen or check the ingredients and – lo and behold – it’s not. People don’t take it seriously. That’s why my #1 rule of coeliac disease is “Trust no one” and my #2 rule is “If you’re not 100% sure, don’t eat it”.

  33. Meg

    Hi Jennifer!!!
    Thanks so much for your blog nd sharing your symptoms and feelings with us. I got diagnosised with Celiac a year ago and have been gluten free since. I have been feeling better since going gluten free but not 100% like people have stated. My family doesn’t understand this disease and thinks that it is no big deal to cheat. They have also heard from this celebrity how she has felt better after going g-free over a weekend, so they don’t understand why after a year I am not feeling better. Your blog has helped not feel like there is something wrong with me.

    I too feel your frustration with these companies offering so called gluten free food but are either crap and offer no nutritional value or is contaminated. I got a call from a well-meaning friend telling me that I could now enjoy pizza since Domino’s offers a gluten free crust…..of course when I mentioned that it is still made in a gluten environment, I against got the “it’s okay if you cheat a little”.

    So long story short….thanks for putting it all out there….you have been my support and my rock. By the way….I loved you on Blue Bloods….and you cracked me up on Samatha Who. Good lipuck with your bakery….hopefully you will offer shipping

    1. Muhammad

      I agree with a lot of others I have not tried any ckieoos, donuts, waffles, etc, because I do not eat those foods. I entered NONE as instructed. But it was great to see some brands I want to try!For the person asking about Gluten Free Cider it’s all yummy! Definitely try it!Thanks for putting this together it should help all of us in the Gluten Free community!

  34. Marilyn

    I value your opinion. I was recently diagnosed and after finding your website was so happy to find someone that feels the way I do. It is amazing how ignorant the world is about this disease. You are in a position to be heard so please keep it up – you are making a difference. Thank you for being my voice.

  35. Linda

    Thank you for understanding and caring that we eat CLEAN, NON=GMO food!!! I have found that the less processed the food I eat, the better! Many of my meals (and my husband’s) are a protein of fish, chicken, beef, or quinoa, and fresh vegetables! I usually bake the meat/fish, and steam the veggies. I used some herbs to season the food. It is healthy, has few if any additives, and is healthy! And by the way, I LOVED you on Blue Bloods!!! Wish you were still on, but I applaud you taking care of your health. If you don’t have your health, what is the purpose of living? We are so fortunate in the gluten free community to have another person like you to champion the cause!! Also, have you checked out Gluten-Free Gigi, and Clean Eating magazine? I find them to be great resources. Thank you for caring! I care about you too, and send you love and prayers.

  36. Michele

    I certainly feel your frustration, especially as the mother of gluten sensitive, wheat, egg, dairy, peanut, melon, and shell fish allergic children as well as celiac children. ( and I ate so healthy when I was pregnant with them!!!). So, healthy is my MAJOR CONCERN in what they are eating. But, I must say that Dunkin’ Donuts is in the donut business. I get frustrated with gluten sensitivity being “cool” and the shelves are bare when we NEED an item that not everyone purchases because they “need” it! However, if it is not prepared with the same care that we MUST use, it shouldn’t be allowed to be labeled “gluten free”.

  37. Marine

    Jennifer, thank you for your ongoing effort! It’s not easy being a public figure and doing what you do! Keep going strong and know that a lot of us here look forward to your blogs and info! Your appreciated :)

    1. Kristy

      We have a bakery such as you are starting in Fountain Valley, CA, titled, ‘Sensitive Sweets’. You may wish to contact the women running it if you need advice. The food is wonderful and they address most allergies including gluten. I treated myself for my B-Day to $20.00 worth of treats. Don’t worry, I did not eat them all at once.

      I really liked your post. You are so right that we are not the same and do not have the same allergies or symptoms as most gf intolerant or celiac people also have other issues.

  38. CathyJo

    I just want to say Thank You. I was tested for this disease and found I don’t have it, you would think that that would make me feel better, but it didn’t. So if I can feel so sick when eating gluten, sugar and dairy; I can’t even imagine what it must be like to have such a small amount of gluten and become so ill. My heart goes out to all those out there with this disease. Thank you again for the information, and keep the good fight going.

  39. Tracey (TJ_FCTees)

    Unfortunately the only way for people to understand is to experience. I wish Celiac on not a single person, but as I said until something happens to those people their opinions are coming from a place of just not being fully informed. Cross contamination is another factor most people are unaware of with Gluten Free products even in restaurants that have Gluten Free menus. I can only hope MORE people come to this site and read as I have said before all your invaluable information and experiences. Celiac is the direct cause of my father’s cancer EATL T-Cell Lymphoma as I have said before and is VERY REAL. You are very appreciated, as is this site. As for the Celiac Road I couldn’t agree more….I tell people this whole experience with my Dad and other Celiac members of my family has been like being on a roller coaster with out a harness! THANK YOU for sharing your experience. All the Best.

    Tracey

  40. Janine

    Since finding your website, I’ve learned I need to be more careful with what I’m eating. My iron count is low again, although I “think” I’m eating gluten free, so I’m getting gluten somewhere. I also appreciate your diligent research. Some days I don’t feel well & you’ve helped me see that is normal when you’re battling Celiac. Thank you so much !

  41. Dave

    I am sure you have heard a number of times, that you are what you eat. We can talk about GMO, Organic, Natural, Fluoride, Healthcare, etc; all we want, but until we start doing something about improving the soil that produces our food, we will not have the strength and immunity to fight these problems.
    It was back in 1936, where the US Senate presented Document 264 of the 74th Congress, 2nd Session, which stated; 99 percent of the American people are deficient in minerals, and a marked deficiency in any one of the more important minerals actually results in disease. It went on to say that; most of us today are suffering from certain dangerous diet deficiencies which cannot be remedied until the depleted soils from which our foods come are brought into proper mineral balance. The alarming fact is that foods, fruits and vegetables and grains are now being raised on millions of acres of land that no longer contains enough of certain needed minerals, are starving us, no matter how much of them we eat!
    This was in 1936, now just think about the farming practices we employ today. Now we use herbacides, pesticides, fungacides, insecticides, and any other cides we can think of. Cide means, “being killed” by the way, other examples include genocide, fratricide, homicide. We need to decide where we go from here, or we may go the way of the Roman Empire, and in less time they did.

  42. Dave

    High fructose corn syrup consumed in the Western Diet is one of the highest dietary sources of mercury exposure and not amalgams or fish.
    “High fructose corn syrup samples were collected from three different manufacturers and analyzed for total mercury. The samples were found to contain levels of mercury ranging from below a detection limit of 0.005 to 0.570 micrograms mercury per gram of high fructose corn syrup. Average daily consumption of high fructose corn syrup is about 50 grams per person in the United States. With respect to total mercury exposure, it may be necessary to account for this source of mercury in the diet of children and sensitive populations.” http://www.ncbi.nlm.nih.gov/…/19171026

    Wheat is also another source of mercury in the Western diet as seen in this study: “”Analyses of 80 samples of wheat showed a mean mercury content of 8 ng/g, with a range of 4 to 18 ng/g (ng = 10−9 g). Wheat flour contained the same amount of mercury as wheat. Other cereals and oilseeds contained 4 to 29 ng/g of mercury. Levels of mercury varied for other organic materials analysed.

  43. Kathryn

    Hi Jennifer
    I totally understand and agree with you. My celiac is not your celiac. Here in the uk I am a member of coeliac uk(yes that’s how us Brits spell it) and have visited restaurants that they have reccomended. I was severely ill for such a long time resulting in 8 weeks absence from work, when I started to heal my best friend said she would treat me to a Spanish meal at a restaurant recommended by the coeliac society. An hour after eating the meal I became ill this lasted for 3 weeks, I felt awful, fit for nothing, the restaurant didn’t want to even acknowledge my complaint so j certainly didn’t receive an apology. Since being diagnosed I have had similar experiences at various establishments, I’m now thinking will I ever eat out again? My gluten free is not somebody elses gluten free. JWF is so inspiring so thank you Jennifer for sharing your experience and advice it really is appreciated.
    Kathryn

  44. Stephanie

    Hi Jennifer,

    I’d like to throw in another thank you for all that you’re doing. Like Linda said, “Thank you for understanding and caring that we need to eat CLEAN, NON=GMO food!!! ” I’m one of those severe Celiacs that has to eat an extremely clean, organic, unprocessed diet – or pay the price. Sigh…I can’t even remember the last time I ate out. One of the main challenges for me with this disease is the constant modification of my diet due to food allergies, leaky gut, GERD, and gastroparesis. When I was first diagnosed in 2003, I ate a ton of frozen “organic” meals with “non-gluten” ingredients, I still drank soy milk, ate lots of corn (yikes), and lots of packaged gluten free cookies, etc… There was a learning curve for me – and I’m still tweaking my diet. It took me two years after diagnosis to finally heal my DH rash (until I eliminated some of the other problem foods & certain packaged foods)). So while I am grateful to have a diagnosis, and grateful for the gluten free diet – there have still been challenges. I definitely share your frustrations about finding clean, healthy gluten free food. I’m also chemically sensitive (have been since birth) – and have to watch every little thing I put on my body.

    Over the past few years, it’s been important for me to acknowledge to myself that this is an autoimmune condition. Initially (ten years ago), I acted like this was just a dietary inconvenience. However, in spite of my freakishly clean diet, I started to develop symptoms of Sjogren’s a few years ago. What was doubly scary – was I also developed a painful butterfly rash on my face (co-workers thought I had Shingles). Fortunately, it wasn’t Lupus. There have been strange, extremely painful rashes on my hands over the past few years, and Last summer, I suddenly developed severe Plaque psoriasis on my neck. WTH??? The dermatologists, and doctors that I saw were baffled (that’s another story). There are a few issues that have cropped up as well (anyone else have gum inflammation??) – but I’m going to start sounding like the Elephant man if I continue…
    The past few years have been Outrageously stressful (major understatement)- and I believe that this stress took a toll on my hair-trigger immune system.
    My point in sharing this – is truly not to scare anyone, but to encourage people to take really good care of themselves. Stress can take a toll on anyone – but if you have an autoimmune disease, please take extra good care of yourself. I wish someone had told me this years ago – and really hammered it into my head. I would have incorporated more sleep, more meditation, more green juices, massage – Anything to prevent some of my symptoms. Staying well with Celiac is still a learning process for me – not to mention the fact that our bodies are always changing. You’re right Jennifer, Your Celiac isn’t my Celiac – but we are all learning so much from each other. And we all need clean, healthy food.

    Lots of love to all of you. Good luck with the bakery & keep us posted.

  45. Debi

    Bravo! I think so many people always miss the spirit of the messages we try to convey as bloggers…and forget that many times we are expressing opinions. I wish that simply going gf was the end to our worries, but like you, after being undiagnosed for so long, the little things started popping up here and there. I am still on the mend. Still healing. Still moving forward and not letting anyone tell me how to manage my Celiac or my diet.

  46. Linda

    I was diagnosed with celiac disease only after finding out I had severe osteoporosis due to celiac. I was 47 at the time when my endocrinologist said “Linda, it’s not IF you break a hip, it’s WHEN.” So people need to pay attention to not just the “gut” feelings, but to follow up with every system in the body, because it’s all been affected. You stick to your guns, Jen!

  47. Yvonne

    Jen,
    Totally agree with you. A speckle of gluten destroys my intestines. Besides, like you, other severe and life threating alleges make me EXTRA careful about what goes into my mouth.
    So please, continue with your opinions. You can’t please everyone all the time.
    Besides, we should really avoid empty starches :)
    Stay well

  48. Betty

    I have to start off with ” YOU GO GIRL” you keep doing what you are doing and I agree with you 100% … I know that I have alot to learn about this DUMB disease and I am paying for it with my body but I have not yet found the right doctor nor have I found the right clean healthy foods that I need to eat.. so I feel at times as if I am the only one that has to watch what I eat but no matter where I go I can’t eat there without getting sick, and I pay the BIG price for it later. To the point of feeling as if I am dying and screaming for someone to take me to the hospital but I don’t and I tough it out in pain praying and hoping it passes quick. You PLEASE keep doing what you are doing.

  49. Gina

    Everyone has different needs, and what bothers one person does not bother another. We need to respect each other and support each other. Everyone is entitled to an opinion, if you don’t like an opinion on a blog, don’t be a hater. We are all in this Celiac boat together, so lets celebrate our differences!

  50. Dave

    Just an FYI….
    10 Signs You’re Gluten Intolerant
    By Dr. Amy Myers 2013-01-24
    More then 55 diseases have been linked to gluten, the protein found in wheat, rye, and barley. It’s estimated that 99% of the people who have either gluten intolerance or celiac disease are never diagnosed.
    It is also estimated that as much as 15% of the US population is gluten intolerant. Could you be one of them?
    If you have any of the following symptoms it could be a sign that you have gluten intolerance:
    1. Digestive issues such as gas, bloating, diarrhea and even constipation. I see the constipation particularly in children after eating gluten.
    2. Keratosis Pilaris, (also known as ‘chicken skin’ on the back of your arms). This tends be as a result of a fatty acid deficiency and vitamin A deficiency secondary to fat-malabsorption caused by gluten damaging the gut.
    3. Fatigue, brain fog or feeling tired after eating a meal that contains gluten.
    4. Diagnosis of an autoimmune disease such as Hashimoto’s thyroiditis, Rheumatoid arthritis, Ulcerative colitis, Lupus, Psoriasis, Scleroderma or Multiple sclerosis.
    5. Neurologic symptoms such as dizziness or feeling of being off balance.
    6. Hormone imbalances such as PMS, PCOS or unexplained infertility.
    7. Migraine headaches.
    8. Diagnosis of chronic fatigue or fibromyalgia. These diagnoses simply indicate your conventional doctor cannot pin point the cause of your fatigue or pain.
    9. Inflammation, swelling or pain in your joints such as fingers, knees or hips.
    10. Mood issues such as anxiety, depression, mood swings and ADD.

    How to test for gluten intolerance?
    I have found the single best ways to determine if you have an issue with gluten is to do an elimination diet and take it out of your diet for at least 2 to 3 weeks and then reintroduce it. Please note that gluten is a very large protein and it can take months and even years to clear from your system so the longer you can eliminate it from your diet before reintroducing it, the better.
    The best advice that I share with my patients is that if they feel significantly better off of gluten or feel worse when they reintroduce it, then gluten is likely a problem for them. In order to get accurate results from this testing method you must elimination 100% of the gluten from your diet.
    How to treat gluten intolerance?
    Eliminating gluten 100% from your diet means 100%. Even trace amounts of gluten from cross contamination or medications or supplements can be enough to cause an immune reaction in your body.
    The 80/20 rule or “we don’t eat it in our house, just when we eat out” is a complete misconception. An article published in 2001 states that for those with celiac disease or gluten sensitivity eating gluten just once a month increased the relative risk of death by 600%.

  51. Suzanne

    I hear you. Dr Fratellone diagnosed me at 46 for Celiac, and I can track the symptoms back to childhood (was it just sensitivity back then? Who knows…). One year gluten free, as militant as could be expected while still thinking I could eat an Udi’s muffin every am…and no real relief. For me, it took pulling ALL grains out to see progress. Of the 18 varieties of quinoa, for example, four give celiacs a response. I just don’t see how to do it with more and more info like that being found. I think more Celiacs have to bite the bullet if they’re not feeling great and pull all grains out. ( sorry, I know you are opening a bakery, but I’m shocked by the studies that find such a small percentage of celiacs who actually heal on a traditional GF diet…)

  52. Yvonne Lusk

    I truly enjoy your blogs and reading things you’ve written has helped me as my celiac was misdiagnosed for nearly 15 years….and if you ever want to franchise out I’m your girl…I’ve been begging someone to open a bakery here…we have NOTHING and what we do have is so nasty…. You go girl

  53. Frank

    When I hear people say they have problems with gluten but they were tested and found not to be a celiac, I am automatically skeptical of whatever test was performed. I believe that the general lay public puts way too much faith in the various tests that are ordered by medical professionals.

    For example, we routinely get tested for diabetes with simple blood tests. Even if done after a 12 hour fast there is no way that that simple blood test is going to screen anyone for having a risk of blood sugar disorders. Dr. Atkins talks about this in his books and claimed that what is really needed is what is known as a “Glucose Tolerance Test” and this procedure takes a long time to do (sometimes 8 hours or more).

    The costs of doing tests like this is prohibitive to say the least and so are almost never done. However, if you want to find how sensitive you are to carbohydrates that may be the only way. Similar statements could be made for the efficacy of tests for other illnesses and Celiac is no exception. You have to ask yourself this question about any medical professional that is making the diagnosis: “How do they know this, what did the test tell them?”

    From the information that I have been able to gather, the only true “Celiac Test” is to do a biopsy of the villi on one’s small intestine (not a pleasant or routine procedure). If a doctor has not done that I would not have faith in any diagnosis that he or she comes up with. The bottom line is: If gluten has proved to be a problem – stay away from it.

    You should not have to make excuses for anyone why you can’t eat certain things. I have found that the toughest thing about this illness is the very people who are supposed to care about us (our friends and families) give us the hardest time. Stick to your guns and don’t eat something just to please someone else. My mother would have a tough time understanding why I wouldn’t eat her Ravioli. In a way, it’s a good thing that she passed away before

    1. Suzanne

      In reference to the biopsy being the only “true” Celiac test: I have heard from so many Celiacs that their biopsy showed NOTHING while they had full-on classic symptoms (and were even later diagnosed positively). My own biopsy, at 43, with raging Celiac symptoms showed nothing and I was sent away with they typical “it’s all in your head” look. I can track my symptoms all the way back to childhood, yet a biopsy showed nothing. When my current doc found my blood work to be off the charts 2 yrs after a negative biopsy, he didn’t even bother with one. Why should I let some doctor poke around in my intestines again?? I have to respectfully disagree that the biopsy is the end-all be-all of tests. I think that since there is not some billion dollar “celiac cure” waiting in the wings to be happily sold to us all, they just aren’t all that interested in finding a clear cut path to diagnosis. At least, that’s the way that it feels….like this isn’t important enough yet. And yes, I believe it will be as this spreads like wildfire with more and more processed foods being eaten and “whole grains” consumed (which are more irritating).

      1. Frank

        Susanne – I am sorry if I gave you the impression that I thought a biopsy was the end all test. I personally would never let anyone do that to me to find out what I already know – that I have a problem with gluten.

        As I was trying to say, don’t trust any tests that medical professionals are willing to give me. I have had x rays done where the radioogist read them as nothing wrong only to find I had a broken bone. A very bad brake at that.

        A biopsy SHOULD be the end all test for Celiac but you can never be sure that the lab doing the test actually has any experience doing that or if they ever have done that.

        As I said, if you have a problem with gluten just stay away from it. The elimination diet is probably anyone’s bet bet to determine if they have problems.

        Good luck with your health and don’t let doctors BS you.

        1. Mayra

          I appreciate you guys doing this svuery. I’m just saying that you needed a no opinion checkbox. I know you could fill in other as an option, but, for example, i’ve never tried any gluten free pie mix or several other of the categories. I felt like my answer to like 8 questions would have been Not applicable or never tried if that was an option but instead I hit Other. Just didn’t want to skew your data.

      2. Karen

        Suzanne. There is a very savvy doctor who specializes in this disease and he educates other doctors on what Celiac is and isn’t. His name is Dr. Tom O’Bryan. He has told me personally that celiac Disease is a blood disorder and only a portion of the population are affected in the gut. Yours is obviously affected elsewhere in the body. You can google him and listen to his radio interview where he discusses it. God bless you

      3. grace

        Biopsy NOT the gold standard, I agree. Had the same experience as you. DNA test help confirm it for me. Actually going gluten free was best proof for me. The negative biopsy caused me more harm in my head (not believing how sick I really was)

  54. Bettye

    I could fill this box with a hundred comments. First, beautiful blog Jennifer and you are stalwart. Second, your recipes are killer. Mixing flours is always a genius start for anyone wanting flavor. Third, I help my husband, a brainiac Chiro Doc who is now in it for the advanced nutritional response testing he does. There are only the precious few who will go that route and those Docs are gold. To find one, just start googling. We are in CA but they are all over the nation. A list of Doc’s are in the training clinic in FL at Dr. Freddie Ulan’s clinic. All our patients are wheat and gluten free and I have over the years created a cookbook but now refer to special sites, like yours Jennifer! Women especially do not like deprivation and I have not myself. There is no need to get dairy when you can get next best like coconut creamer diluted or almond milk. My best find is coconut palm sugar for sugaring up baked goods. I do appreciate your input and glad to share mine. But I will say this with all experience and honesty. The diet has been, to our research, only 50% remedy. After a targeted NRT analysis ( no lab) in the office, a customized program is established. followed by the remedy from companies who are revered, all raw food supplements, some mixed with homeopathy and very little herbal. Its the composite that makes it work. After almost 8 yrs just doing this, miracles I tell you. We see babies, children and help very gently remove the disruptors to health. BTW, a new product is targeting the damage specifically in the gut, and sealing it. I am trying to be simple in explanation but you all know its hugely complex. Find a Doc and take care of the problems that plague. I wish I could say diet was everything and it’s a big part, but there is more to know. Love to all.

  55. nomoregluten

    I relate to everything Jennifer says about all the doctors. I’ve been mentally and physically ruined. I quit gluten a couple weeks ago and I’m lots better. I realized it helped more than anything I’ve ever done and threw away all gluten products and cleaned the kitchen for hours. Now I cook everything, and no more going out to eat. I feel so much I don’t really care. I like organic, vegan, no corn. I told my mom that I thought I was allergic to bread one time, and she said it was silly and no one was allergic to bread…. SILLY YAK

  56. joanna

    I am grateful to you and your blogs and tweets! I am only months into a Celiac diagnosis, and having such a hard time healing. I think I am allergic to many other things including many of my favorite veggies and grains ( I am vegan). I am trying a rotation diet thanks to your info, so please don’t let the bad comments or negative media stop you from helping those of us who need it. Thanks a bunch!

  57. Nathan

    Hi Jennifer,

    I recently saw your interview on Fox News and saw about your blog for facts about celiac disease. I don’t suffer from celiac disease, but I do suffer from food intolerances, primarily milk products. I am not lactose intolerant, but when I drink or eat milk containing foods, I feel very terrible as well. I understand how difficult the food industries are these days. I read a lot of health blogs and nutritionists writings. One of my writers is Dr. Mark D. Harmon. He has an awesome cookbook that I find to be very helpful for finding healthy gluten-free foods. Dr. Harmon is big on finding food allergens and intolerances and cutting them out of your diet. His first book Ultrametabolism shows gluttens as also being one of the highest causes of obesity in the USA. He also publihed a cookbook that has numerous glutten-free recipes. Dr. Mark D. Hyman is a Holistic Doctor that likes to look at our diets as part of our sickness. I wish you well on your bakery and ask that God will bless your mission to help people live a healthier and pain-free lifestyle without having to give up as many delicious foods.
    One note that I would say to anyone that many holistic doctors and nutritionists are stating is that we should strive to eat 1-ingredient foods. Especially when dealing with food intolerances and gluten allergens, you cannot go wrong with this to avoid unknown ingredients and cross-contamination. The other problem is the FDA and USDA aren’t regulating the names of ingredients and what manufacturers are required to put on their labels.

  58. shaunamom

    It’s great to read your blogs on Celiac Disease, especially about how GF products can contain gluten. I have a few food allergies that prevent me from eating a number of GF foods, but out of the products that remain, I have yet to find one that does not make me react. My own issues started a few years ago, before this blog was around, but if it weren’t for a gal on the internet hearing about my problems and mentioning that GF food can affect some Celiacs, I have no doubt I would still be ill, if not dead.

    Out of my family of 4 Celiacs, 2 of us have this higher level of sensitivity. And even bringing this up in some circles has brought on numerous negative comments, like our being hypochondriacs, we must ‘want’ to be sick, and so on. I’ve mentioned that GF food can makes some Celiacs sick, to people who are saying that they seem to react every time they eat X GF product, and had people accuse me of fear mongering or just trying to be dramatic.

    Like in your experience, many of those who talk like this are Celiacs themselves. Considering how much negativity and doubt many Celiacs get before we are diagnosed, it’s shocking that fellow Celiacs would then dish this out to others simply because they don’t react the same way, or to the same level of gluten. Sorry you’ve had to deal with this, too.

    So thank you for putting this out here. We so need more voices that are positive AND informed.

  59. An

    Thank you Jennifer for telling your story and all your efforts at raising awareness. I also went undiagnosed for 17+ years. Today even with a positive confirmation from endoscopy and biopsy and HLA-DQ8+, doctor’s still act skeptical. They start talking Crohn’s, IBS, etc., anything but Celiac. It is very strange. The medical community appears severely biased against the possibilty of Celiac in patients, even to this day. And this is even at major Boston area teaching hospitals affiliated with Harvard Medical School. In addition for any doctor to practically ignore a positive diagnosis is beyond ridiculous and very dangerous. And so is CBS’ attitude as well, shame on them. Keep up the great work and thanks again.

  60. Linda

    I have to live completely grain free, no potatoes, no quinoa. It SUCKS. I have also found that I can trust NOTHING processed in any way…ok, well I do buy vegetable milks. I do a whole foods vegan and gluten free diet. I get angry too! Especially with my relatives and friends who continue to pretend that I have some choice in this. I just watched some of your interviews and read some of your story for the first time today. I’ve been in tears. Thank you! Oh, and Dr. Drew is an idiot! He was a total ass to you! I also stopped watching Blue Bloods when they let you go for complications with celiac.
    xo-L

  61. Karen

    Jennifer. I just saw your Fox Files episode and was so gratified to see a story that discussed Celiac Disease. Your blog mentions that some Celiacs seem fine after diagnoses and going gluten free while others still struggle. I agree and am one of the strugglers. I was diagnosed in 2000 and currently have 30 or so foods i have been told to avoid besides wheat gluten. I have fibromyalgia, Tin poisoning and many other diagnosed problems all relating to the immune system.

    After 13 more years of pushing doctors for tests and answers i had a positive test for chronic lyme disease complex and am now researching treatment. I am curious if any other Celiacs out there have been tested for Chronic Lyme Disease Complex? As scary as it sounds there is a train of thought that untreated Lyme disease could cause fibromyalgia, food allergies, MS and many other diseases. I’m just curious if you or others have been tested or treated. God bless you and I pray your efforts produce genuine results for all Celiacs.

  62. Tamara

    Jennifer thank you! We need strong, loud, audible, clear voices in this battle against gluten! I am so sick of trying to eat something supposedly GF when out and about only to be horribly poisoned! I personally would never go to a DD, or any establishment that houses GF products with non-GF. I just can’t be trusting enough with whether or not the employees understand that they cannot mix utensils, etc. any little mistake one person makes due to lack of education or lack of care & concern can cost me weeks of pain and misery!

  63. Nikki Hancock

    THANK YOU AGAIN! Great points and you are so, so right about eating a diet full of processed foods making us feel like garbage still. This is WHY Americans especially are getting so many health problems in the first place. Thank you again for your strength and your valuable writings.

  64. Lana

    I want to commend you on this awareness! I suffered all my life before being diagnosed with IBS by the USAF in 2002 (this is the “we don’t know what causes it” diagnosis) but then in Dec 2009 I had my amalgam (aka mercury fillings) removed & holistically replaced. Not long after, I had a severe reaction I could not ‘dismiss.’ Fortunately, I had prepared all the foods at home (wheat flour “carrot cake” & bread). The following morning I woke up in itching hives, rashes all over my body, bloating – especially on my abdomen. I thought it would go away soon but by day 2, I couldn’t handle it any longer. Well, my IBS was the bloated version & this reaction sent me on a research on what might have caused this. Everything pointed to a wheat/gluten allergy. The irony was it also claimed the blood tests would not “show a positive” if I was no longer consuming it.
    I had to wait the entire weekend to see a doctor & when I finally did, the doctor didn’t want to hear my research as they responded with “who’s the doctor here…!?”
    That’s when I took back my own life & responsibility for what I put in my body!
    I was able to figure out the association between wheat/gluten & IBS along with dairy…both have different “versions” but what people don’t understand is how deadly they can become over time. It’s cumulative! I love hearing people say “I don’t understand, I’ve never had this happen before…” because we’re conditioned to think a doctor knows better when they only get maybe 4 hours of “nutritional” education! They KNOW NOTHING about food but all about pharmaceutical pushing.
    Another added note, last year in April 2012, Easter weekend, I also found out there is another consideration if you have a wheat or grass allergy –> stay away from wheatgrass!
    I had been exhibiting the old IBS symptoms and had no idea it was related to wheatgrass until a friend who went into anaphylactic shock. I had to research what she may have had a reaction to as I made her a smoothie. Later that night, I had rashes all over my abdomen & itching but even worse were the deathly gut-wrenching stomach pains & for hours I had to vomit up all I had eaten to the point all coming up was stomach acid. I had experienced this previously but thought I had eaten bad spinach…at that point, my research led me to finding out about the wheatgrass which, in mass production, cannot be proven to be “gluten-free” despite the claim it is clipped prior to the germination. This means avoiding all “supergreen” powders & many other unsuspecting foods.
    I’m grateful for my own education on this because there is not one doctor who could have KNOWN this…
    Having lived in Naples, Italy, I do know they are very aware of gluten sensitivity along with other food allergies/intolerances – they even subsidize those diagnosed! There is a doctor at the Chicago Celiac Center who is actually from Naples, Italy who is working to make more aware here in the US!

  65. Paula

    Hi ..that is exactly right even though celiacs is very common – more common than people realize there are also 300 possible symptoms and no two people have the same ones.. i am so glad to see others-like myself that going just gluten free was and is not enough.. In my case I have to take many supplements and eat closely to the GAPS diet to feel half way human and have any energy at all. My husband and I have 8 children, 6 of the 8 have to be gluten free.. but ony half also have to be grain, dairy, soy , legume, sunflower and corn syrup free like I do..It’s been tricky to navigate and keep everyone safe ..especially away from home- though I want them to feel normal..I am much more concerned with keeping them well.. If they have snacks I make them at home so I know what they are eating. I don’t want them to feel left out at church functions or dinners but like I tell them it is better than being sick and feeling terrible for days because you ate something you should not have…Luckily most of them feel the same way I do about it- they would rather not be sick so they are not at all tempted by food that is not safe for them..no matter what their friends are eating.. for that I am grateful. Thanks Jennifer for your blog and speaking out! Keep spreading the word.. we have to keep up the fight for ourselves and families.

    1. Masayo

      The absolute best gtulen free pizza is done by a chain in the Seattle/Everett area called Garlic Jim’s Famous Gourmet Pizza. I have had the gourmet garlic and the veggie but I discovered they also do a cheese, four cheese and pepperoni. I have eaten alot of gtulen free pizza but this one is as close to a real pizza as you will ever get. I really wanted this pizza so I got ambitious and tracked down where they come from and the Garlic Jim’s chain has their own food distributorship called Pacific Coast Foods in Everett, WA. I told them they need to get this delicious product into more places in the Seattle area so I can get it into my neighborhood. Heaven would be to walk out my door, walk down the block and get a gtulen free pizza to die for. Thanks Garlic Jim’s Famous Gourmet Pizza for doing gtulen free pizza right!!!!!!!!!!!!

    2. Mieela

      Our family was not able to be at the wednidg but after looking at all the detailed photos, I felt like I was right there! I could sense the emotions of the moments through the eye of the photographer and it was such a wonderful feeling to be able to share in it that way. The shots on the beach around the pilings were beautiful and unique. Lauren and Jason will have a very difficult time choosing from all the amazing pictures!

  66. Samantha

    Hey,I’ve jst come across ur blogs. I really like them and enjoy your enthusiasm to educating people like myself about coeliac disease and the foods and strong relations to health.im really looking forward to following ur blogs as someone new to the coeliac world only becoming diagnosed last year November. Anyhow I’m looking forward to being educated and reading ur views on this world we live in.

    Erm incase u wondered, celiac disease is spelt ‘coeliac disease’ in the uk where I live

  67. grandma4five

    Jennifer,

    We watched your recent interview in FOX and because of who you are, I hope you can bring awareness not only to your disease, but for all of us who suffer with some of the untold diseases. I suffer with Fibromyalgia, and with the over 200 symptoms that come and go, or the chronic pain, constant fatigue, and everything else that we must live with, and the allergies that get thrown in the mix, it’s horrible.

    I was surprised NBC treated you with so little regard for your health. You are a marvelous woman and actress. You will bring more light for those of us who suffer with the uncommon diseases and be an even bigger success in the future.

    As far as this article is concerned, there is no such thing as a ‘little bit not bothering you.’ Instead of taking a child to a place that serves items that make them sick, why not make the option something that is not only good for them and make it special? The person who has a problem with what their children can’t eat is it because the child can’t feel normal, or the parents really want the donuts because they can’t eat them and feel normal. Besides, your disease like mine, everyone reacts differently at different times. There is no normal, really. Except, we personally learn if I do this, this will happen. Some one else with the same disease may tolerate it better – may – or it may manifest itself differently or later.

    Until we know more about all of these diseases, ‘Normals’ please, please give us a break. Don’t try to put all of us in a box. Don’t try to tell us why we feel the way we do. Don’t try to tell us about the magic potion. If there was a cure, trust us – P L E A S E – WE WOULD TAKE IT IN A MINUTE! We do not want to be constantly sick, tired, unable to do all of the normal things you do. Instead, just say hello, be a blessing, just be there. When we tell you it’s a bad day, ask how you can help, not how we can help you feel better about seeing us sick! How the heck do you think we feel?

    Any way, Jennifer, thank you for being you. God bless you! I’m going to read more about gluten free as the IBS, also one of my fibro symptoms, might just be helped by what you’ve found out. One less thing for me would be truly a blessing!

  68. gayewelton@yahoo.com

    I totally agree with you! It is very frustrating for people not to understand that just a little bit hurts even if there are no symptoms–especially if that person says they themselves have celiac disease!

  69. Lisa barrentine

    Jennifer I have been suffering for 13 years trying to find answers on why I am so sick . Everyone thinks I am crazy. My question is I am trying to find the right doctor here in Tampa Florida who deals with celiac and candida to try to heal my stomach and get rid of the overgrowth candida I have . Would you know of any doctors here or would your doctors have any good contacts . I am desperate anymore . Been to the hospital 2 times in the past 2 months . They cannot find anything wrong. I have been diagnosed by some homeopathic a with leaky gut and candida they keep overwhelming me with pills. They had me on 90 pills a day .

  70. Shelly

    I just wanted to say I was so moved by your story on your Bakery website. My son was diagnosed 3 years ago at the age of 11…after 10 years of me knowing something just wasn’t working right with him. I won’t go into the details because, as you well know, every Celiac story is unique. I was really excited to see you will be selling wholesome, GMO free mixes online, when they are available, but was immediately deflated when I saw you have almond flour in the mix. My son doesn’t have a tree nut allergy, but my daughter does, so I don’t want to take the chance of having her exposed to the flour or pancake mix by mistake. If you devise a mix without the dreaded tree nuts, I’d be happy to purchase!

    I’ll keep watching your website. Congratulations on the bakery, and for taking your struggles public. You are one strong lady.

  71. Debra

    Jennifer, my mother almost died before we found out she had celiac. If it hadn’t been for someone else saying they thought their child had it, and the symptoms sounding like my mother’s, she might have gone undiagnosed until she died. At the time we found out, there wasn’t a lot of gluten free products. Thank goodness for more information on television and websites about celiac. Wishing you the best. I plan to keep up with your experiences and website.

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