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Totally Together

Glutenfreedness

May 12, 2009 by  

We are a gluten-free family. I haven’t written much about our gluten free journey, because it hasn’t really seemed like it was my story to tell.

I am not gluten-free. I do not have celiac.

My four-and-a-half year-old daughter does.

We found out about a month before she turned two.

We’ve chosen as a family to all eat gluten-free when at home, out of respect for her, and to keep the house “safe.” There are times when gluteny stuff is in the house, and we try our hardest to practice safe food handling practices to keep her safe, both physically and emotionally.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

When we moved to our current home, I needed to go back to work, and chose a teaching job where the kids could be with me. On paper, the job seemed “perfect,” but my little one started getting sick. She’d vomit sporadically, and did so for months–not a lot. A puke a week or so, and sometimes she’d go 2-3 weeks where she was just fine. This lasted probably a good 6 months, looking back on it. I blew off the random puking jags as her getting more germs now that she was in a child care setting. I ignored it the best I could—she was my second child, I figured I knew what was a real sickness, and what wasn’t. She never had a fever, she was gaining weight, she wasn’t lethargic, her disposition was good, etc. The puking and the tugging feeling at my heart that I was making her sick by putting her in a germ-laden environment on a daily basis finally got to me and I freaked out and quit.

The sporadic puking continued, with no rhyme or reason.

I finally took her in, two months shy of her second birthday. I was expecting to be told that I was overreacting–kids get sick, they eat boogers, everything’s fine, you’re making too much of this, etc.

Instead, our *absolutely fantastic* pediatrician listened to Adam and me tell our story, and nodded. She was very calm and said that she didn’t know what was wrong, and suggested that we see a pediatric GI.

I felt like I was sucker punched. I was not expecting to hear those words. I was not expecting to hear AT ALL that something could be wrong.

This is where I had a weird out-of-body experience. I DID NOT start googling. Instead, I stayed clear away from the computer and waited out the two weeks before we saw the pediatric GI.

He was like House. He spoke fast and was incredibly smart. Freaky smart. I trusted him right away. He suggested it was celiac, but ran a bunch of tests. I held her in my lap while the blood was drawn, and practically bit my tongue in half to keep from crying right along with her. It was a very tough day.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

A few days later, Adam got the phone call that she had tested positive for celiac, and the GI began prepping us (mentally) for an endoscopy. Due to her young age, we were moved to the top of the list. She was scheduled for only about a week later.

I was to keep giving her gluten (poison!) so they’d be able to see what the villi was doing in her intestines (for those who have no experience with celiac, the down-and-dirty I’m-so-not-an-expert explanation is that ingesting gluten harms the villi (finger-like and hair-like projections or bumps in the lining of the intestine that absorb nutrients. Because of the autoimmune response in the body, gluten attacks the villi, damaging and eventually destroying them. They usually grow back completely after the GF diet has been started–thank you to Tabitha for this updated explanation)). An endoscopy and villi biopsy is technically the only way that celiac can be officially diagnosed. There is a LOT of debate about whether or not the endoscopy is a necessary procedure and my thoughts and feelings on this change daily, and sometimes hourly.

I spent hours upon hours on the internet during this time, researching and trying to learn everything I possibly could about celiac and going gluten-free. I also tried to convince myself that she was misdiagnosed,  even though the blood test came back quite conclusive. The rest of the family had their blood drawn, and tested negative. I was in denial.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

I was allowed to go with her into the operating room. 2 anesthesiologists were present, one a mom of three, who was so reassuring and calming to me. I was in scrubs, and carried her back. I held the gas mask to her face, and the other mom and I began singing Row Row Row Your Boat. She went limp in my arms, and two nurses escorted me out of the room and didn’t let go of my arms until Adam grabbed on in the waiting room.

The procedure was quick, and a nurse came out within 20 minutes to say everything was fine, and that the doctor would be out to see us in a few minutes. He came out, still wearing his hair net, and said that the villi was quite damaged, and that there was a white part in her intestines he wasn’t sure about. I asked what it was, and he answered, “I don’t know, so I took a biopsy. The nurse will come get you  in a few minutes and take you back.”

And that’s when I lost it.

I walked away from Adam and started pacing the little waiting room. My mind went to every horrible case scenario I could think of: the make-a-wish foundation, having to tell my daughter that her sister had died, picking out burial clothes, and the funeral. In the course of about 45 seconds I had one of the most visceral responses I had ever experienced.

And then I heard her. I heard “Mommy.” I pushed open the swinging doors, Adam close behind. I heard her. She was waking from the anesthesia and was in a barred bed, like a cage, and had monitors hooked to her and an IV inserted into her foot. There were two nurses at her bedside, and they said something like “oh we were just about to get you.” They were nice, I’m sure, but all I wanted was to rip all those things off and out of her and to get out of there. and fast.

I scooped her up and rocked and rocked for what seemed like forever, but it was probably only a few minutes until she was fully awake and was pulling on her IV and saying “owie.”

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

And then it was done. The doctor came back and told us all the stuff I had already learned on my own about celiac and going gluten-free. We were scheduled to see a nutritionist. I questioned him about the biopsy and he promised me that biopsy is just a word doctors use when they need to see something better under a microscope and that it had nothing to do with cancer. I was so visibly upset he hugged me and apologized for making me think that and then he promised to not use that term again to a new mom without explaining. I remember nodding, but was too numb to respond.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

2 1/2 years ago, I was not aware of what Celiac Disease was. I had heard of people being allergic to gluten, but I didn’t really know what that meant. I wasn’t aware what gluten was (it’s the binder found in wheat, barley, and rye). I didn’t know what symptoms people exhibited when they had celiac.

Things are different now. I feel like the general public has some contact with someone, somewhere, either in real life or virtually who has celiac, and knows a bit more about what it is and what to do about it. There are certainly more food products available, thank goodness, and the FDA has mandated that food companies begin labeling properly. There is a lot more to do, but I think the awareness has improved, and feel confident that with this increased awareness, good things will happen.

In the past few weeks Elisabeth Hasselbeck has released a book about her gluten-free journey, The G-Free Diet: A Gluten Free Survival Guide. I have not read this book yet, but am quite interested in doing so. I’ve placed an order with our library system—but it will probably be a few weeks until it comes in. I’m fascinated by the reviews, both on Amazon, and in the blogosphere.

update: I have now read the book. I really liked it, and would recommend it to anyone embarking on a gluten free journey for the first time.

A big part of the controversy stems from the title of the book—calling it “The G-Free Diet” seems a bit cutsey, and makes it seem as if this is a fad, not a mandatory dietary change needed to live a healthy life for those diagnosed.

The Celiac Foundation has also taken a negative response to the book, and posted this response on their popular list serve:

I am writing to call your attention to the current publicity surrounding the
new book, The G-free Diet, A Gluten-Free Survival Guide by Elisabeth
Hasselbeck
, co-host of The View. While it is important to call attention
to celiac disease, the information must be accurate – the inaccuracies in
this book are potentially dangerous and detrimental to celiacs and to those
yet to be diagnosed if people self diagnose and start eating GF. Our mission
is to assist in getting people accurately diagnosed and the message in this
book could defeat this mission. It appears that this book is being marketed
as a fitness diet – eat g-free and feel so much better. Celiac is
incorrectly referred to as an allergy not an autoimmune disease.

The GF diet is the medically mediated prescription that controls the
condition for a diagnosed celiac. Several items in the book are misleading
and inaccurate and place further limitations on the GF diet. The
gluten-free lifestyle is a lifelong commitment for the diagnosed celiac, not
an option, not a fad diet – adhering to the GF lifestyle requires patience
and persistence. This lifestyle can not be trivialized.

Thank you.

Elaine Monarch

Celiac Disease Foundation

Founder & Executive Director
13251 Ventura Blvd. Suite 1
Studio City, CA 91604

My friend Alison, who writes at Sure Foods Living, posted a pretty positive review of the book, stating that,

Overall…

I think this is a really good guide for someone who has just been diagnosed with celiac disease or is just starting a gluten-free diet, or even for those that have been on a gluten-free diet for a while but haven’t completely mastered it yet. I am surprised I liked it so much. I may even start saying I am “G-Free!” Or maybe not.

which I found generous and interesting.  Alison is who talked me off my ledge when we were first diagnosed and I turned to the internet. She emailed me back within an hour of my panicked plea for help and was so helpful in helping me to realize that my daughter was going to be okay. It helps that we live in CA, and pretty much everyone orders off the menu, but she really and truly was a calm, peaceful presence in the midst of a perceived chaos, and for that I will always be grateful. I hope Alison writes a book someday.

I actually just ordered this book in the past few days, after the author emailed me to let me know that she listed the crockpot site as a reference for gluten-free recipes. I haven’t received it yet, but Amazon says it’s on the way.

My thoughts? I look at Elisabeth’s book as a good thing, even though if there are inaccuracies.  I think I look at it as any publicity has got to be good publicity. Although I consider myself a pretty aware person, a few years ago I would have liked to have seen Elisabeth talking about Celiac on regular day time TV. I think knowing the word would have helped me not be so freaked out by the word “disease” tacked on the end. I still and will always think that it is absolutely necessary to do your own research about anything that happens with your body (or your child’s), but just knowing that it isn’t such a secret thing anymore is a relief.

I like it that General Mills changed Rice Chex to be gluten free. I hope Kelloggs gets on board and takes the barley malt out of Rice Krispies.

If we need an Elisabeth to help lead the way, even with some inaccuracies, I’m okay with it. I’ll continue to learn and hopefully help others in my own way. I’d love to hear your thoughts.

For further reading:

Celiac.Com

Celiac.Org

GlutenFreedom

Gluten Free with Emily

a list of over 80 Gluten Free blogs

The Gluten Free Goddess

Gluten Free Easily

Sure Foods Living

Post a comment · 71 Comments »

Comments

71 Responses to “Glutenfreedness”

  1. Tabitha Spitzer on May 12th, 2009 4:11 pm
    1

    Steph, Thanks so much for this great post. Our family is also GF due to 2 daughters with celiac. Our 9 year old was diagnosed a few months after her 2nd birthday. All that you wrote really resonates with me. I was so excited to see your crockpot blog and all of the GF stuff.

    One quick thing. I know you said you’re not an expert on explaining the inner workings of celiac disease. I would just clarify that the villi aren’t “wormy things that live in the intestines” –that makes them sound like something externally introduced, like a parasite or something! They are finger-like and hair-like projections or bumps in the lining of the intestine that absorb nutrients. Because of the autoimmune response in the body, gluten attacks the villi, damaging and eventually destroying them. They usually grow back completely after the GF diet has been started.

    Thanks again. Anything we can do to raise awareness is a wonderful thing. I was unaware of the controversy surrounding Elizabeth Hassleback’s book. I’ll have to get on the library queue for it now!

    Thanks and God bless!!!

    Tabitha

  2. Jennifer Tupper on May 12th, 2009 5:10 pm
    2

    Hi there!

    I’ve purchased the book over the weekend. I think her book is fabulous! She has great tips and I appreciate the way she lays everything out. Her book can’t be found with the other GF books in the book store, but was in the health and fitness section, so I think that it’s being marketed as a fad diet book which is unfortunate.

    I’m posting a review tomorrow of the book on my blog!

    Thanks for letting me know about your other blog too!

  3. Charlee Pensak on May 12th, 2009 5:36 pm
    3

    I know most are on a g-free diet for celliac but they also suggest it for Autisim disorders. My son has aspergers so most people tell us that gluten causes it along with shots. So thats why sometimes its contraversial diet because some use it for other reasons and say it cures Autisim

  4. Gretchen on May 12th, 2009 5:59 pm
    4

    Steph,

    Thanks for posting about your gluten free journey. I’ve been gf for over 2 years now. There is so much misunderstanding out there. The more the awareness of it becomes mainstream the more people will understand that we’re not just picky eaters or trying to draw attention to ourselves. I haven’t seen Elizabeth Hasselback’s book yet, but I do plan to read it soon. The one thing that really helped me when I started living gf was following the Gluten Free Girl’s blog, http://glutenfreegirl.blogspot.com/.
    Thanks for posting recipes that I can use and helping to raise the awareness of Celiac disease.

  5. Ashley on May 12th, 2009 8:11 pm
    5

    Stephanie:

    I’ve been a huge fan of your crockpot site for awhile, and especially love how everything is labeled, making it so easy to navigate and see what is gluten free. I was diagnosed with Crohn’s Disease last year and upon the recommendation of my naturopath I did food sensitivity testing. The tests showed that I had a high sensitivity to gluten. I’ve been gluten free for over 2 months now, and in conjunction with my (mild) Crohn’s medication and cutting out my other food sensitivities, I’m feeling so much better than I did. It’s so amazing to me what a “small” change can make. Being gluten free can be challenging, but sites like yours make it easier.

    I’ve been reading about the G-Free Diet and I’ll be interested to hear what you think. I too have ordered it from the library and plan to give it a shot.

    Ash

  6. JennL on May 12th, 2009 8:15 pm
    6

    Steph,
    Thank you for posting such a personal story. We are not a gluten free family, but as a mom of two little ones, I could feel the anxiety, heartbreak, and despair as you recounted your daughter’s endoscopy. My daughter required tests in various areas of medicine when she was an infant and while we were blessed that nothing serious was found, the worry over her health was palpable. Reliving it in words is no less easy and others who are on the gluten free journey with you or just beginning will find a lot of strength in your story.

  7. donna on May 12th, 2009 9:44 pm
    7

    Celiac is difficult for the medical community to understand and diagnose.

    My sister-in-law called to tell us that after 3 years of misdiagnosis of a rash her doctor finally figured out what it was. Since it was genetic and ran in families her doctor told her to have her siblings get tested.

    For the past 5 or 6 years, my husband has had health issues that were never resolved. His dr. labeled his problems as stress and him as a hypochondriac. When his sister called, I researched celiac. I sent him to the dr. for the blood test because he had 75% of the symptoms. His dr. listened to him and told him flat out that there was no way that he was celiac. His blood test came back that he was high in the antigens. In Europe, that’d be enough to convince any dr. (indeed his sister’s dr. said that it was enough and had her change her diet and two friends from church went with just the blood test). His dr. had him do the biopsy. They didn’t find any damage in the spots they biopsied. The dr. said that he doesn’t have celiac since the biopsy was negative (although they did discover that he has barretts syndrome). However, he gave up gluten and felt better. If he accidentally eats anything with gluten,, he gets intense stomach cramping and headaches. He is celiac.

    The children (all six of them) are not positive. (I prefer to think of it as not positive rather than negative because it is an autoimmune disease that could be triggered at any time).
    That’s our celiac journey thus far. I appreciate your GF crockpot recipes. It helps figure out meals that everyone can eat.

  8. Marita on May 12th, 2009 9:45 pm
    8

    I’ve got several family members with Celiac Disease and have Crohns Disease myself. What I find fascinating is that after our youngest daughter got diagnosed with Autism so many people assumed that we would be going gluten free because it would treat the Autism. We did go gluten free for 6 months but there was no behavioural improvement so for us the GF diet is not the miracle treatment so many others claim it to be.

  9. Elizabeth Earl on May 12th, 2009 9:57 pm
    9

    Hello,
    I really appreciate you posting about this. I don’t think I quite agree with the Celiac Foundations’ statement regarding the book. I definitely think people need to understand that it is NOT a fad diet, however, there are many more reasons that people are choosing to go gluten free. My son has a few food intolerances (gluten and milk products) and the difference it has made in his life has been huge! Good luck on your journey! Thanks for your blog, I love it!

  10. Mandi on May 13th, 2009 6:16 am
    10

    I have Ulcerative Colitis which is an Inflammatory Bowel Disease and found out about it just after having my first child almost 2 years ago. It’s also an immune system related disease. In my search for a way to get more nutrition in my diet (something other than potatoes, pasta, and well cooked meat) I discovered the Vitamix. The reason I mention it is because it can grind grain and help with the gluten free side of things along with a whole bunch of other stuff. It’s a bit more than I would have normally spent on a blender but in the month I’ve had it, I love it and all the things it can do. You might be interested in trying it out. Maybe it could help you too. I don’t know much about GF diet but this might help. http://www.vitamix.com/household/products/super5000/maxnut.asp Video 18 shows them doing gluten free grains and beans. Just a thought. I hope it’s interesting or helpful.

  11. Nowheymama on May 13th, 2009 7:17 am
    11

    Thank you so much for sharing this. My daughter is allergic to dairy, and I always appreciate hearing other allergy/intolerance/celiac disease stories. I hope that all of us parents explaining these conditions will help others understand them better and be more compassionate towards our children.

  12. Chasity on May 13th, 2009 7:26 am
    12

    I just wanted to let you know that your rendition of what you and your family went through struck a chord, as my 14 year old daughter was just diagnosed in December. Suffering from Crohn’s since the age of 5, we were “used to” the medical procedures. Still, having another disease tacked on 9 years later was quite a blow. I was a huge fan of your crockpotting blog before her diagnosis, and you were even a bigger help to me after- your horseradish potatoes were served in lieu of a non-gf alternative at Christmas- just one of many I have tried. Thanks so much for speaking out on the gf/celiac issue.

  13. Alison from surefoodsliving.com on May 13th, 2009 10:28 am
    13

    Steph,
    Wow — I am so flattered that you have mentioned me in your gluten-free journey. Thank you.

    I don’t agree with the letter from the Celiac Disease Foundation either. So many people are missing the benefits of being gluten-free because of the strict testing of celiac disease. I do believe that people should be tested, but there are a lot of people who test negative and then are told that gluten is NOT their problem. The fact is that many people are benefiting from a gluten-free diet for so many other reasons than just celiac — fatigue, pain, autoimmune conditions, fibromyalgia, and yes, autism (gluten-free casein-free diet).

    To say that the book could be detrimental and that it is trivializing the diet is ridiculous. Why not take a positive stance about the publicity and the fact that a celebrity is finally raising awareness about it? I actually think that the CDF’s statement is potentially detrimental to the cause!! While I support their cause, I don’t think it should alienate those who do not fit inside the Celiac Box.

    Thanks Steph for sharing your gluten-free story!
    Alison

  14. Mary on May 13th, 2009 11:09 am
    14

    I find it interesting that the ‘annoying innaccuracies’ aren’t listed by the person writing the letter. What needs to be corrected? Where are the page numbers and the incorrect information??
    I think the author from the Celiac Disease center either doesn’t care for the author or is peeved that her disese didn’t get full billing in the title.

    The subtitle very clearly states that it’s a gluten free diet. If someone buys the book thinking they’ll lose some weight, so what??? It does seem that Glueten free is the new fad the way “sugar free” and “fat free” were. That’s what labeling and marketing create. Fads. Soon water will be labeled as glueten free the way it was labeled carb free during that Atkins craze. Sure there are people who seek non-glueten products for medical reasons but I’m sure other people are buying it too thinking ‘oh this must be good for me and low cal because it’s glueten free”

  15. Brian on May 13th, 2009 11:14 am
    15

    When I was diagnosed with celiac disease over 15 years ago, I had never heard of gluten-intolerance. After about 15 years of daily pain, etc., after going GF immediately, I woke up the next morning with no pain! I was amazed. Over the next year I gained about 30 pounds and leveled off at about 190 (I’m 6 feet tall). I might add that my only BAD gluten reactions have been from INHALING wheat flour dust, once when throwing it out of my kitchen, and once again from an unknown source at work. I have never eaten anything knowingly containing gluten since my diagnosis. It is a new lifestyle, for certain, but one that I do not mind, considering how much better I feel. Best of luck!

  16. jennibell on May 13th, 2009 1:36 pm
    16

    Stephanie,
    There is also a wonderful magazine out there (maybe it’s been mentioned — I just skimmed over most of this) that is called “Living Without”. When my husband was diagnosed almost 4 years ago there was NOTHING on the market for him. . .but we did find this magazine and it’s wonderful. It also deals with other food allergies. Now there are so many resources out there it is incredible. Gluten-free living, we have found, is also very healthy. . .and, of course, you have shown us through your blog that there are still LOTS of great dishes out there that the entire family can enjoy, gluten-free!!

  17. Karrie on May 13th, 2009 2:00 pm
    17

    Stephanie,

    Thanks for sharing. We are gluten-free also due to my five year old son’s celiac so completely understand everything your family went through. I just picked up Elizabeth’s book and plan on starting this weekend.

    A great source that we have been using for the past few months is http://www.mealplanswithout.com. For about $10/month, they provide a meal plan specifically for those with food sensitivities. Between this service and your crockpot meals – we have found it to be much easier to find tasty dishes that fit the gluten free lifestyle!

  18. Cherie on May 13th, 2009 4:09 pm
    18

    My 17 year old son was diagnosed with Celiac disease in November 2008 through a blood test. A couple months ago, we heard a Celiac specialist speak at our support group meeting and he said that Celiac can’t be accurately diagnosed without a biopsy. We decided to pursue that biopsy. After numerous tests (including a biopsy), we discovered that our son didn’t have Celiac disease!

    If you were diagnosed with a blood test only, you may want to seriously consider having a biopsy done…..There was ZERO evidence of Celiac disease in my son – yet the blood tests were positive.

    • zmama on March 28th, 2013 9:16 pm
      18.1

      If you. Eat glutenfree prior to endoscopy the biopsy can incorrectly indicate no celiac. You must have gluten in your. System for accurate celiac test results. Your son should retest after a period of consuming gluten regularly.

  19. Maureen on May 13th, 2009 5:24 pm
    19

    I couldn’t wait to get my hands on Elizabeth’s new book and pre-ordered it through Amazon.com. I was surprised that it arrived at my door before the release date! I read it in less than 24 hours which is unheard of for me. I enjoyed the book and found some good tips in it. I do agree that there seemed to be some inaccuracies but didn’t let it get me down. What I missed from the book and was hoping Elizabeth would include was how it is to be pregnant with Celiac Disease. I was diagnosed with Celiac Disease in Nov. 2007, a year after my son was born. I am now pregnant with our second child (my first since being diagnosed) and have had the worst time with craving things I can’t eat like bread. Now that I am in my second trimester, it’s much better but I would have liked to hear how Elizabeth handled her pregnancies on the GF diet.

    Another note….I have a really hard time when people say “I would do the gluten free diet even if I didn’t have to” (as Elizabeth stated in her book). I could NEVER say that! I love pizza and sandwiches too much and you know there is no perfect substitute for either in the GF world. Elizabeth also said that she has so much more energy since going GF. I wish I could say the same. I’m still very tired (even before I was pregnant) so I’m actually going to have some tests done to see if there’s something else in my diet that is affecting me.

    Thanks for sharing your story and recipes through this blog! Love it!

  20. gfe-gluten free easily on May 13th, 2009 5:32 pm
    20

    Oh, boy, does this post and the comments hit all my Hot Buttons. I’ve been gluten free since June 2003 and lead a celiac/gluten intolerance support group. I really appreciate this post, Stephanie. I also appreciate the more positive comments and Alison’s input! After I had experienced literally a lifetime of medical problems, my doctor (who is celiac itself) directed me to get tested for gluten sensitivity versus celiac because she had seen so many patients who would not test positive on standard celiac tests. Some of her patients were invalids. They did not test positive for celiac, but after they went on a gluten-free diet, they slowly, but surely regained their lives. It is my mission to help anyone who might be helped with gluten issues. The transformations I’ve personally seen have been amazing. I’ve seen folks diagnosed with IBS, Crohn’s, fibromyalgia, RA, epilepsy, etc. whose problems disappear and no longer have to take meds after going gluten free. I can’t even believe how good I feel now. I never knew what feeling good felt like before I was diagnosed. I also can now use a bathroom like a normal person, no longer have joint pain, sleep issues, and on and on. My husband who did not test positive for gluten sensitivity has not had a sinus infection in 6 years of me cooking gluten free. He used to have one every year. He still eats gluten outside our home, but the amount is signficantly reduced and that’s clearly made an impact.

    As far as testing, even biopsies are not totally definitive. Some people are diagnosed through pill cams now. Endoscopies can only do so far. Plus, even Dr. Fasano (celiac expert from U of MD) has stated that biopsies are often performed incorrectly and read incorrectly. I personally heard him state that a few years ago.

    Dr. Peter Green (another celiac expert, Columbia U) led a study several years that showed that about 30% of biopsy-proven celiacs did not test positive on the blood tests. He has stated that testing will improve when there is a pharmaceutical buy-in for celiac. In other words, when one of the drugs being tested currently gets FDA approval, drug companies will be the ones investing the dollars in ensuring that testing identifies every possible person so they will have as many lifelong customers as possible. And, my bet is that THEN, gluten issues other than celiac will be recognized.

    Dr. Rodney Ford (pediatric gastroenterologist, allergist, nutrititionist from New Zealand), who espouses the gluten syndrome used to literally watch his young patients develop celiac right before his eyes. Initially, they’d test negative despite their many symptoms. Over several years, many would then test positive. Although they improved on a gf diet, damage done in many cases could not be reversed—for things like developmental delays such as short stature and speech issues. He started advising the parents of such patients to put them on a gf diet and the results were amazing. They shot up in height, made huge learning gains, etc.

    What both Dr. Fasano, Dr. Green, et al. state is that gluten is the only protein our bodies can’t metabolize. So it can’t be broken down by enzymes like other proteins. Dr. Green has stated this is one reason that so many folks have issues with gluten.

    It’s unfortunate there are some inaccuracies in Hasselbeck’s book and presentations (e.g., the word allergy being used), but it’s wonderful the word is getting out. And, why does celiac disease have to be like an exclusive club to some? It should be one’s choice if he/she wants to go on a gluten-free diet and if these folks decide to stick with it because they feel so much better. Vegetarians and vegans are accepted when they go on their diets and state they feel better. We should all be respected for our own choices.

    The gluten free diet is actually easy if one focuses on real food: meat, seafood, fish, veggies with some mainstream gf foods in the mix and some gf specialty foods from time to time. Nobody shows that better than you, Stephanie, with your crockpotting blog. Bravo for you and that blog!

    Finally, consider this … why should we have any antibodies to gluten if we don’t have a problem with it? Those positive blood tests are saying something important.

    Best to all,
    Shirley

  21. Erin on May 14th, 2009 12:34 pm
    21

    I apologize, I haven’t gotten to read through all the comments yet. But I have read the book by Hasselbeck, and I found it to be very informative. And in stark contrast to your experience getting your daughter diagnosed, I face the diagnosis process in the near future, and found the upbeat tone of the book to be comforting and encouraging.

    As far as the marketing goes, I’m friends with several authors (novelists and non-fiction) who have all pointed out that she probably has little influence over the title or the marketing strategy–that’s usually in the hands of the publisher.

    And my reaction to the references to celiac as a “gluten allergy” is that she did explain that it is actually an auto-immune disorder quite clearly. However, “auto-immune disorder” doesn’t roll off the tongue quite the same way when trying to quickly and efficiently get gluten-free food, nor does it get the same level of reaction from those around you. It’s far easier to use the short-cut and say “I have an extreme allergy to gluten” than to say “I have an auto-immune disorder that causes me to be very ill if I eat any gluten, so it’s of utmost importance that you serve me nothing with gluten in it.” I tested this out while traveling, and my non-scientific experiment showed much the same–if I explained celiac, people weren’t interested, but if I just called it a really bad allergy, suddenly I had gluten-free food available to me.

    Anyway, there were certainly some issues with the book, but overall, I thought it was a good read to help me figure out the day-to-day stuff regarding avoiding gluten. For the science behind it, I’ll find a good doctor :)

  22. Erin on May 14th, 2009 11:13 pm
    22

    Thank you for sharing this – I followed the Year of Crockpotting blog all last year and we just got a Celiac diagnosis on our 3 yr. old today. We still have to do the biopsy and get our older girls tested but I knew that I could come here and you would point me in the right direction to start educating myself on the changes we will need to make soon.

  23. Rachel on May 16th, 2009 12:02 pm
    23

    I diagnosed myself with celiac disease 4 years ago, and now that I’m gluten-free I’ve never been healthier. Since it’s strictly genetic, I’m assuming my two little daughters have it until proven otherwise. I’ve really appreciated your crockpotting adventures! I needed something fast AND gluten free, which can be hard to find sometimes.
    Just a note–now Corn Chex is gluten free too! Even the Honey Nut Chex is gluten free. I was so excited, I filled my grocery cart with cereal boxes. :c)

  24. Jen :) on May 17th, 2009 3:56 pm
    24

    We have been using the GFCF (gluten and casein free) diet for treatment of my daughter’s autism for the past 9 years. Although it has not *cured* her autism, it has improved her quality of life immensely, so I just wanted to address using a GFCF diet for autism.

    My daughter suddenly *woke up* when she went GFCF at the age of 4. Language that we had lost at 18m came back, she was more aware of her environment, she was on a more even keel emotionally and she began to feel pain normally (which a lot of kids with autism do not). I still remember the first time we heard her speak anything but jibberish. It was a week after going GFCF and she said *Look Mom! A school bus!*. She kept asking what that noise or smell or object was, things she had heard/smelled/saw every day previously and never said a word about. She cried when she fell and skinned her knee for the first time since early toddler-hood. It was spooky TBH, like a person had been trapped inside her and could now, finally, communicate. I remember feeling so guilty that I hadn’t done this sooner and wondering what she must have been feeling lost in herself.

    Now, at the age of 13, if she so much as inhales gluten or dairy she will be an emotional mess for days. She gets very *spacey* and depressed and cannot be reasoned with. Without gluten and dairy she is still autistic, but she is much happier and more well adjusted child who finds it easier to learn, love and enjoy life.

    I guess the theory is that because of intestinal damage (either from mercury in shots or as part of the autism-I’m no expert) a sub-set of kids with autism cannot properly digest gluten and dairy protein and in it’s partially digested form it acts like an opiate. I couldn’t begin to tell you if that’s true, but I can tell you that my daughter will not be eating gluten or dairy if I have anything to say about it. Whatever the reason, it’s not good for her.

    I am extremely grateful to the celiac community for getting the word out about those with gluten issues and bringing about the increased availability of GF products. When we started this journey there was little in regular grocery stores that my daughter could eat beyond fresh fruit and veggies and meats (some). We would have to travel over an hour once a month to stock up on GFCF foods whereas now I only have to go to the grocery in town. I can only hope that my purchases will help keep these products available for all of us who use them whatever the reason.

    I would hope that someone whose child is on the autism spectrum would not read this as me telling them that their child’s autism is caused by gluten or mercury or vaccines. Nobody knows what causes autism and frankly I doubt we ever will. I can only speak for my family and my child and what works for us. I do hope that families will at least consider a trial of the GFCF diet, but I also know it doesn’t work for all children on the spectrum. However, just because it doesn’t work for everyone doesn’t mean it doesn’t work.

    -Jen :)

  25. Loree on May 17th, 2009 5:11 pm
    25

    We don’t have anyone in our family with celiac disease but I did find this very interesting and informative. I agree it’s sad that the “G-free diet” is being marketed as a fad diet, but hopefully it can still bring awareness and help to those who NEED it.

  26. Alison from surefoodsliving.com on May 18th, 2009 1:13 am
    26

    I just want to say thanks to Jen for the way that she has presented her story about the GFCF diet to improve the symptoms of autism. I know that I will be cutting and pasting it to many people that I have come across, or will come across, in my life that need to hear it.

  27. Trisha on May 20th, 2009 8:10 am
    27

    Hi,

    I just noticed that a restaurant in New Jersey is having a celiac awareness night. I thought you might find that and the menu interesting, even though it is far away from you.

    http://www.artfuldinerblog.com/blog1/2009/05/20/celiac-awarness-night-at-the-tortilla-press-in-collingswood-nj/

    Thanks for all of your great recipes!

  28. MommyAmy on May 20th, 2009 10:51 pm
    28

    Great post! I have several friends who are gluten-free and thanks to you have a ton of crock pot recipes I can make when they come over! You’re doing a great thing by spreading the word, and if I ever meet someone who’s just been diagnosed I’ll certainly send them your way!

  29. alicia on May 21st, 2009 10:44 am
    29

    Just a note for anyone who says that finding nothing on a biopsy proves that a person does not have celiac: I had an upper GI endoscopy and they did a biopsy. They said that there was no evidence of celiac, but they also said that the endoscopy only reaches the first 6 inches of the intestine and that it’s sometimes possible for it to exist without the evidence being present in those first 6 inches.

    I’m allergic to wheat and thus don’t have much gluten exposure anyway, so they thought it was unlikely that my symptoms were caused by celiac… but they were checking anyway. Still, I appreciated being told that the test didn’t necessarily test everything.

  30. Joanne on May 21st, 2009 1:19 pm
    30

    Stephanie,

    Thanks for all the info… my daugher was diagnosed with diabetes at 12 months, and about 5-10% of people with diabetes also have celiac disease. We haven’t had her tested yet (she’s only 8 months post-dx and I don’t want to put her through more tests at this point), but I know I’m going to need to get it done soon. I am terrified that she might be dx with celiac disease, because her diet is already tough enough to regulate. But I’m glad to know of the resources available in case is does happen.

  31. Miriam on May 21st, 2009 2:49 pm
    31

    Stephanie,

    Thanks for sharing your story…I love your blog and have used many of your recipes. When I learned that all your recipes are GF, it was just the icing on the cake for me–my husband has celiac disease and it is always a challenge to find new, tasty, GF meals. I get overly excited whenever I find another GF resource to use. In fact, I recently purchased a box of the Tinkyada lasagna noodles after I saw them in one of your recipes and my husband can’t wait to have lasagna again.

    Keep up the good work! I’ll be curious to find out what you think of Elisabeth Hasselbeck’s book.

  32. Sandy on May 25th, 2009 11:21 am
    32

    My 20 year old daughter has been diagnosed with Celiac for 18 years. When rice cakes were the snack of choice and when gluten-free bread choices were cardboard or cardboard…it has taken a long time to get where we are today. When she was around 4 or 5, she unintentionally ingested gluten and went into shock – she spent the weekend in the hospital and the injection the doctor gave her saved her life. That’s the difference between Celiac disease and a gluten-free diet out of choice. Like the peanut allergy – it can have life-threatening consequences. The importance of that fact comes into play when you are eating outside the home. My husband is lactose intolerant, but if a drop of milk lands on his food, he won’t have a serious, or possibly any reaction. We call it “contamination”. When we go to a restaurant for Amanda, we make it clear that they need to use clean utensils and a cleaned off grill, etc. to make sure no gluten touches her food. The same at a relative’s house. I don’t want to see the gluten-free diet treated as a “preference” because the guard may get let down and allow serious consequences.

    We did not go gluten-free as a family – it was expensive and took some experimenting to get the food to taste good. It’s a family’s preference to do what they want; most of our dinners were gluten-free except for pastas. But we didn’t feel it was necessary to change all of our other children’s diet (we had 2 boys, ages 8 and 6 and Amanda’s twin sister who has Down Syndrome).

    I am thankful that we can now walk into a store and read a label to see if something is gluten-free! One spring I spent $6.00 on long distance phone calls to manufacturers to find gluten-free jelly beans – and I didn’t find any! And though I still purchase a lot over the internet (because I don’t use mixes and make her bread from scratch) – it is nice to be able to walk into a regular grocery store and buy rice pasta or a bread mix if I run out of flours.

    Regarding a gluten-free diet as a “cure” for other diseases…Amanda has had asthma for about 5 years and was diagnosed with fibromyalgia a year ago. These conditions came on even though she has been totally gluten-free for 18 years. We just need to be careful about anything being a “cure-all”.

    I have really appreciated your crockpot recipes, Stephanie. It’s nice to have so many gluten-free options! I keep saying we need to write a cookbook – but never seem to get around to it!

    I guess I just wanted to put in my “two cents” :-)

  33. Rebecca on May 28th, 2009 4:08 pm
    33

    Thank you for sharing your story & all of your great recipes.

    Our son was diagnosed with a wheat allergy (he has not yet been tested, but soon will be, for Celiacs). Your blog has been so helpful to me, especially your kid reviews at the end of each recipe.

    Thank you for all that you do–you are a great resource!

  34. Wendy O'Dea on July 5th, 2009 5:34 pm
    34

    Stephanie — your story could be mine in nearly every way. My 2 an 1/2 year old daughter was diagnosed a few months ago after the intermittent vomiting. And, oddly, we have the same last name (is this your married or maiden name?) And I’m a writer.

    Thanks for sharing your story. As a single, working mom I am finding the journey particularly challenging.

  35. Robin on August 12th, 2009 11:26 am
    35

    Thank you for posting your daughter’s (and your family’s) story.

    I was diagnosed with celiac disease 4 years ago. Most days are OK, but some are quite challenging. I try to stay positive because I feel that I am eating a healthier diet than before. Unfortunately sometimes I get depressed because I can’t eat the same things as “everyone else” and I hate feeling like I’m “different.” I can’t just make a sandwich, or open a can of soup, or heat up a frozen meal for lunch. Convenience foods are pretty much a thing of the past.

    It seems that I am constantly learning of more foods that are on the “no no” list. For example, I recently read that frozen french fries are not gluten-free. (the Wal Mart brand, Great Value, is OK, though).

    It was much easier when I lived alone. If I couldn’t eat something, I didn’t buy it! Now that I am married again, it’s not so simple. My husband is not a celiac and he likes his sandwiches! Yes, I know gf bread is available, but quite honestly it just isn’t very tasty and it is expensive. I wish the grocery stores here carried more gf products; IMO that would help bring the cost of gf food down. And, I am surprised that Wal Mart doesn’t carry more gluten-free pastas since most of their store brand foods are gf.

    OK, enough whining! I am thankful that my doctor wanted to get to the root of “why” I was anemic for so long and she kept pushing for answers. She sent me to a gastroenterologist and he was very upbeat when talking to me about celiac.

  36. heidi on September 2nd, 2009 6:26 pm
    36

    Hi Stephanie, thank you for your story, I have often wondered if your child had celiac or possibly something else. I have a gluten intolerance, and not until about 2 years ago, did I finally decide to take charge of my life and accept the fact that I cannot eat Oreos. It wasn’t the easiest transition, but during the time you were writing your crockpot blog, I discovered you and was instantly inspired. Since I was was stumbling around the whole gluten free world during the first year, I would often refer back to your recipes to see if you used certain foods in your recipes, then I knew they would be “safe” (obviously I know now that manufacturers can change their ingredients, but I was desperate!). Along the way, I learned to fall in love with my crockpot and actually learned that not every recipe has to be followed to a “T”. If I was lacking an ingredient, I got creative and tried something similar. Sometimes it turned out, sometimes it didn’t. But it got me comfortable in the kitchen, more so than I ever have been. It got me preparing nutritious and loving meals for my family. And though this may not be the case for everyone, I lost 60 pounds from being gluten free, I am at a healthy weight, and have maintained it for over a year. It wasn’t even that hard (I was overweight most my life). The difference? No cravings for starchy foods like before, no more eating fast food and prepared/convenience foods at my leisure. This way of life has been a tremendous change, but for the better. Thanks for being an inspiration and guidance during my transition!

    heidi

  37. Jenny on September 7th, 2009 3:07 pm
    37

    Hi Stephanie,

    Thanks for sharing your family’s story. My brother was diagnosed with celilac 10 years ago as a teenager after years of mystery illness. He’s doing great – very strong and healthy. The diagnosis was actually a relief because the other options included cancer. He was most upset to learn he would never eat a birthday cake again! We’ve since found lots of great gluten free cookbooks and he’s had a birthday cake every year.

    The G- Diet thing is really frustrating for my family. We’ve been trying for years to explain to people that this is not an allergy or a “lifestyle choice” but a serious auto-immune disorder that can make my brother miserable and very sick if not managed correctly. While I support the right of anyone to choose the diet they feel most comfortable with, it’s very frustrating to have celiac reduced to another fad akin to Atkins. My brother has had several serious reactions when people ignorantly assumed that his gluten free diet was a choice and not a mandate from his body. He’s learned to basically never eat food that he or my family has not prepared. I was really hopeful when I heard about the G-Diet book that maybe the general public would get a little more insight into celiac. After reading the press, I’m a little disappointed. Maybe the next book…

    Thank you for sharing your story and continuing to educate folks on celiac.

    Jenny

  38. valletta on September 15th, 2009 7:04 pm
    38

    I really appreciate hearing from everyone here.
    I don’t have celiac disease but I have self-diagnosed my gluten-intolerance based on trial and error.
    Years ago I had a coworker who was diagnosed with celiac. She was losing weight, had sallow skin and no energy.
    I didn’t have any of those symptoms, so gluten was the last thing I thought about when I started to have problems at 43.
    I had a hysterectomy and immediately following surgery I had multiple problems, which my gyno said was “IBS” based solely on my symptoms.
    I had bloating, weight gain of about 10-15 lbs., constipation, cramping, etc.
    I tried following various “IBS” eating regimens, no improvement. I tried South Beach, which was an improvement, because the starches (and glutens) were eliminated.
    One day I just decided to cut out ALL starches and glutens.
    Basically my diet consists of fruit, vegetables, fish, poultry and very occasionally meat (which I want to give up for other reasons!) and I feel like a new person.
    So, I think that there are many people who do not have Celiac but who would benefit immensely from a gluten-free diet or at least minimized gluten intake.
    My husband is now a convert!
    Oh, and if anyone has an Amici’s Pizza in the area they have an enormous gluten-free menu! One just opened in Menlo Park, CA and it’s awesome….

    • Stephanie on September 15th, 2009 9:33 pm
      38.1

      thank you for the Amici’s in MP head’s up. I’ve been waiting for one relatively close by.
      I’m so glad you’re feeling better!
      –steph

  39. Leslie on October 3rd, 2009 12:00 am
    39

    Stephanie,

    Thanks so much for sharing your daughter’s story and for contributing so many Gluten Free ideas. Thank you for creating such a great resource.
    I had already glanced at your blog simply for money-saving, crockpot recipes. Now that I know they are all GF too, I am even more excited.
    My son is suspected as having Celiac Disease. He just turned six years old.
    I wanted to point out that, in his case, the blood work is not enough to diagnose or negate celiac.
    My son has had 2 upper endoscopies, both showing blunted villi in his intestines. The first scoping was in 2007-before the allergist discovered he is IgA deficient. This finding has been significant. In other words, his antibody levels don’t look elevated if he doesn’t produce enough in the first place. The blood tests for IgG looked normal too. The pediatric GI we’ve been seeing wants us to diligently avoid gluten (and dairy too) and then we’ll have to scope him again after 6 months.
    Although I don’t want my child to have go through unneccessary testing, I do want a correct diagnosis. Thankfully, my son is quite a brave trooper considering all the testing procedures. (I think he actually has a harder time with blood work than being scoped. )
    I look forward to cooking some of your GF recipes for him in the months ahead.
    Blessings,
    Leslie

    • Stephanie on October 3rd, 2009 9:08 am
      39.1

      “(I think he actually has a harder time with blood work than being scoped. )”

      I’ve noticed the exact same thing! You are doing a fantastic job with your son. Following mommy gut is the most important thing. It sounds like you have a fantastic team of doctors working with your family, and my thoughts are with you all. Please let me know if I can help in any way.

      xoxo steph

  40. anna on October 30th, 2009 2:39 pm
    40

    Thanks for the links and sources. My father has this disease as well, and my mother used to make all of his foods. She died recently, so I’ve been trying to find things to make that he can eat. I am so grateful to have found your other site about the slow cooker, and now the links you’ve given above.

    I don’t feel so lost in my quest for decent meals anymore! Thanks! :)

  41. Jen on November 2nd, 2009 4:47 pm
    41

    I just wanted to say THANK YOU! I actually just found you today and your story is similar to ours. Our son was diagnosed at 18 mos and is now 5 years old. When you talked about your daughter’s scope, I broke out in tears remembering the horror of it for us with our son. We’ve had our daughter scoped as well, but she was older so it wasn’t as awful ( hope that doesn’t sound terrible). I put your book on my Christmas list!!! I am so excited to find it and especially your blogs. Thank you again for so many recipes that are gluten free. I feel like after these several years I’m finally feeling good about cooking (and baking-yikes) more gf things…I kind of panicked for a while there and that was strange since I LOVE to cook and bake! I’m getting there. Thank you again! Can’t wait to read more and learn more!

  42. Ashlee Thornton on February 5th, 2010 10:10 am
    42

    Hi! I found your slow cooker website when I was just looking for crock pot recipes. and much to my surprise most if not all the recipes are Gluten Free. I was diagnosed with Celiac a little over a year ago, and got married about 6 months ago. Its really hard to stay on the diet when your husband doesn’t have to. I am really excited to find your blog, and hopefully it will make cooking and eating gluten free easier for me.

    Thank you!

  43. Lori on August 12th, 2011 12:20 pm
    43

    My son (now 10) was diagnosed with celiac just before turning 2. We dealt with the diarrhea to constipation to vomiting to watching my boy wither away to nothing because of the lack of nutrient absorption. The day after his endoscopy we went gluten free with anticipation and worry — back then our choices were limited to Fritos & rice flour pasta. We were so scared that our boy would not be included while others enjoyed pizza and cake. It was a new grief: living without gluten. But since then products have changed, awareness has spread and I’ve become an expert on everything gluten free. Cooking without gluten CAN be easy and taste great!! Reading your story made me remember our situation 8 years ago and I am thankful today that my son plays sports, goes to parties and plays just like any other kid — all and all being gluten free. Thanks for your recipes and sharing your testimony!! XO

  44. Mae on October 20th, 2011 11:16 am
    44

    My daughter in law just came across your gluten free crockpot recipe site and passed it on to me! I was thrilled to see all the possibilities available for me to prepare in my kitchen. I am wondering…is there a published cookbook with these recipes in it? I would love to have a copy for browsing without having to click on each one on the computer! Thanks for sharing your wealth of recipes…for now, I’ll click away as I explore each recipe and choose the ones that I want to try out!

  45. Nicole on January 25th, 2012 11:14 am
    45

    Forgive my ignorance here, but I happened to stumble upon your website. All of the recipes posted in the crockpot section are gluten free? I am just started this change as my son’s doctors and psychologist suggested a gluten free diet for my son to see if it helps with his ADHD. Thanks.
    ~from a not so new mom who is nervous about a very new lifestyle

    • Stephanie on January 25th, 2012 11:22 am
      45.1

      Hi Nicole,
      you’re not ignorant! yes, all of the crockpot recipes are completely gluten free. I have listed brand names and swap-outs in every recipe, since some of my readers don’t need to be on a gluten free diet.

      best of luck to you and your son, I promise it will get easier after a few weeks. lots of hugs.

  46. Trisha on April 5th, 2012 2:39 pm
    46

    I really wanted to thank you for sharing your journey and for your whole blog in general. I’ve only been on the gluten free diet for 2 weeks and it’s incredibly encouraging to find a blog dedicated to easy gluten free cooking. While I do not have Celiac Disease (so far), I am gluten sensitive and have a lot of the same symptoms as one with Celiac (even the immune system stuff…bleh). It’s so difficult to change your entire diet after 25 years of eating gluten. My husband and I are very greatful for your blog and we can’t wait to try out your crock pot recipes!

  47. Adrienne on October 2nd, 2012 7:27 pm
    47

    Hello, Stephanie!

    I was reading your recipes and fell in love with your personality (and your recipes, of course!) almost immediately. I kept seeing the gluten-free recipes and references and became curious, which is how I ran across your gluten-free journey.
    This was a touching and heart-warming story. As a mother of twins (seventeen months old!), I couldn’t imagine seeing them go under anesthesia. I honestly teared up a little, because all moms know that fear they always hold for the well being of their children.
    I’m glad that your daughter is doing well, and that she has a great, colorful, and caring mother like you. Your story and recipes have warmed my heart and made my bad day into a better one, and for that I thank you.
    Keep on brightening our lives with your recipes and wonderful personality!

    ~Adrienne

  48. Stephanie on May 12th, 2009 4:13 pm
    47.1

    Tabitha, thank you for that explanation. I’m going to update the post—-you’re absolutely right.
    xoxxo steph

  49. Muki on June 30th, 2009 4:17 pm
    47.1

    That’s still not quite accurate. Gluten does not attack the villi. Gluten is just a protein. The body’s immune system recognizes that the protein is not part of “self” (but that’s okay, there is lots of stuff in our bodies, like all the food we eat, that is not “self”). The bad part is that the immune system also identifies the gluten as harmful to the body and initiates an immune response to the gluten. This immune response (the body’s immune system attacking the gluten) causes the inflammation and damage to the villi.

  50. Jayne on August 11th, 2009 8:49 pm
    47.1

    I was diagnosed with Celiac, but not due to stomach issues. I am 65 and have been diagnosed with Osteoporosis and come to find out this condition can be a result of Celiac and sure enough after 3 doctors the last one tested me for Celiac and Bingo. I have always taken calcium, I hike, even climb 12,000 mtns on the week end, but with Celiac I was not absorbing the calcium needed for bones. So now I eat gluten free. With one in every 133 people with Celiac (best estimates) the info out there is improving.
    Thanks for all the resources you have shared with your followers.
    Jayne

  51. Stephanie on May 12th, 2009 5:39 pm
    47.1

    Hi Charlee,
    That has got to be incredibly frustrating for you to hear unsolicited advice. I agree that I find speculative information reported as fact offensive. xoxo steph

  52. Marita on May 12th, 2009 9:48 pm
    47.1

    I should say that is a miracle treatment in relation to the Autism.

    As someone who has a family with strong medical reasons to go on GF diet I’m still very unsure on the effect gluten / wheat supposedly has on children with behavioural issues.

  53. Stephanie on May 13th, 2009 8:52 am
    47.1

    Hi Mandi,

    we do own a Vitamix in our family, and I agree, it is FANTASTIC! It was a gift, and we got it quite a few years before the diagnosis, and I, too, find it a fabulous way to sneak in extra nutrition into the kids (and me!) I have been trying to make a smoothie at least 3 times a week. We usually do plain yogurt, orange juice, soy milk, a banana, a handful of frozen fruit, carrots, a handful of spinach, 3-4 prunes, some chocolate protein powder, and a scoop of ground flax seed. It sounds like a lot of ingredients, but we usually have them on hand. I really like the way the frozen fruit gets blended so nicely, and how the flax seed completely disappears.

    The vitamix is terribly expensive, and I’m so very thankful that we didn’t need to make the decision to spend money on it—I’d like to think that we would have for our health, but since we didn’t have to, I can’t really be certain. I definitely recommend it, however, even though the cost is prohibitive. xoxo steph

  54. Stephanie on May 13th, 2009 10:55 am
    47.1

    I get it why the celiac foundation needs to take that stance—it’s a real condition, and while other conditions benefit from eliminating gluten, it’s not a life-threatening change, while the official diagnosis and protocol is.

    There isn’t (so far! you should totally start one!) a Going Gluten-Free Foundation—-one where the lifestyle of eliminating gluten for a variety of reasons is supported and discussed. The celiac list serve and the message boards do discuss other reasons, but sometimes the “oh I’ll just pick the croutons out of the salad” mind frame trivializes the real concern of cross contamination from those who truly need to steer clear.

    It’s a tough position for the celiac foundation to be in. I think they’re probably secretly thrilled this is in mainstream news and discussion, but have to be careful to not agree with the inaccuracies.

    and! I adore you, and would not be where I am without you (happily eating blue cheese for breakfast… ;-) ).

    xoxo steph

  55. Stephanie on May 13th, 2009 11:18 am

    LOL on water being labeled gluten free!

  56. Muki on June 30th, 2009 4:05 pm

    Okay, here’s an annoying innacuracy:

    Pg 13: “Untreated celiac disease can take a severe toll on your health, leading to a number of complications including… Type 1 diabetes…”

    Type 1 diabetes is not a complication, it’s a serious disease in it’s own right. Also, no research has shown that celiac disease leads to or causes Type 1 diabetes.

    Here’s another:

    Pg 14: “We also know that people suffering from other autoimmune disorders- …Down Syndrome… -have higher incidences of celiac disease…”

    While it may be true that people with Down syndrome have higher incidences of celiac disease, it is not true that Down syndrome is an autoimmune disorder.

    These two innacuracies don’t relate directly to celiac disease, but the fact that they are so easy to find makes me suspicious of other claims in the book. That may not matter to people who are choosing GF as a dietary choice. But to people with celiac disease who buy this book, an innacuracy relating directly to their condition could be dangerous or life-threatening.

  57. Stephanie on May 13th, 2009 5:31 pm
    47.1

    Hi Maureen, congratulations on your impending arrival! Alison, from Sure Foods Living would be able to answer any questions about being GF while pregnant. She has 2 little ones. Thank you for sharing your thoughts—I really appreciate it.
    I haven’t found the best pizza dough recipe. some come close, but they aren’t the same. xoox steph

  58. Stephanie on May 13th, 2009 5:39 pm
    47.1

    Shirley, thank you SO much for taking the time to write out such a wonderful comment. I really value your viewpoint, especially this one: And, why does celiac disease have to be like an exclusive club to some? It should be one’s choice if he/she wants to go on a gluten-free diet and if these folks decide to stick with it because they feel so much better.

    wow. I never would have had that thought before, and now understand fully the frustration.

    and! you and Alison would get along quite well! ;-)
    xoxo steph

  59. Stephanie on May 14th, 2009 12:40 pm
    47.1

    Hi Erin, thank you for writing in!
    I completely agree with using the word “allergy.” That’s what I say—I don’t bother trying to explain celiac, and have taught my daughter to say “allergic.”
    xoxo steph

  60. Stephanie on May 16th, 2009 4:00 pm
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    REALLY?!!!!

    I’m off to the store!!! WOW! I’m so incredibly excited, thank you for telling me! ooxoxo steph

  61. Jen :) on May 18th, 2009 8:07 pm
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    You are very welcome. :)

  62. Karen on May 22nd, 2009 6:02 pm
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    Reading Donna’s comments abut her husband’s doctor resisting a Celiac diagnosis reminded me of the struggle I had to go through to simply get my Mother’s doctor to do the blood test. He insisted she couldn’t possibly have Celiac because she’s overweight. I finally had to agree to pay for the test if Medicare denied it — then he agreed to run the blood test. Surprise! She also has Celiac (and I didn’t have to pay for the test).

    A guy in our Celiac group had to go through 3 EGDs with biopsies because his doc couldn’t believe that he would have Celiac since he is from Pakistan. Doctors make way too many assumptions about who can’t have Celiac.

  63. Jules on June 14th, 2009 10:39 pm
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    I am a special education teacher and a mother to a child with coeliac disease. Children with coeliac thrive on a gluten free diet – my daughter no longer feels “fuzzy” with her thinking, no longer feels bloated and uncomfortable, and her hair and skin glow! Oh, and she is so happy. A gluten free diet has definitely been a miracle diet for our girl.

    In regards to a GF diet and children with behaviour, I believe that a GF diet can help some kids with behaviour issues, but not necessarily because they are on GF. More often than not…when you put a child on a particular diet, every meal is noted, crap like lollies and biscuits (full of colourings and preservatives) are removed, routine is established and more often than not, people look for the positives in the child instead of focusing on the negatives…I think the fact that a diet is monitored can be the reason why a child’s behaviour may improve, rather than it being due to the removal of gluten…just a thought.

  64. Stephanie on August 12th, 2009 1:47 pm
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    Hi Robin, I’m so glad that you were able to find the cause of your gastric distress. Yes, I find that the convenience foods that I once turned to for a quick snack or meal for the kids aren’t an option any more, and if I think too long about it, I can easily become depressed.

    I do find that we eat a lot more fruit and veggies, though—which is definitely a great thing.

    I want to share Ore Ida’s Gluten Free list with you: http://www.oreida.com/quicktipsfaqs/glutenfree.aspx

    xoxo steph

  65. Stephanie on September 2nd, 2009 6:33 pm
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    Hi Heidi,

    Congratulations on your weight loss! That’s phenomenal! I’m so glad to have been of any help to you. They certainly aren’t low-fat, but Mi-Del makes a decent chocolate sandwich cookie that’s a good Oreo substitute. I like them especially for a chocolate cheesecake crust!
    xoxo steph

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