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      Frequently Asked Questions About Celiac Disease   04/24/2018

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What is Celiac Disease and the Gluten-Free Diet? What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes
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celiac3270

Warning: The Gluten-free Bible

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Thanks for the info !

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Your word on it is good enough for me! I tend to only use what I find on Celiac.com, though. It is the best site I have found so far, and I usually stick with what works and is accurate.

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Well, I do not consider any Frito-Lays' products to be glutenfree (unless made on a dedicated line). If Cheeto's have that cross-contamination then I would agree with then not being glutenfree.

All books will have issues, especially those written from personal expereince. Read it or don't but if you do just remember to think about what's being said. have you persoannly read it, celiac3270? At my last support group meeting it was discussed since the author attened a previous function and everyone there who read it seemed to like it.

I know she wrote the new one since the old one is outdated.

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celiac3270, I trust your carefuly discernment. It appreciated. Deb

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I have been told be lots of people how good the book is and that they've enjoyed it.

I just think people should read it for themselves and decide. Maybe they can get something out of it. It's not getting bad reviews from everyone.

Frito-Lay right out tells you that most of their products on that list will be contaminated making them not glutenfree.

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I agree with celiac3270. When my daughter was diagnosed 6 years ago, her nutritionist suggested I get Against The Grain, and like a fool I did. I think Lowell is a moron. It seemed to me she is simply trying to break out on the comedy circuit (although she is NOT funny she thinks she is) rather than trying to put out any useful information that would actually help anyone. I have not read anything else written by Lowell so I cannot comment on the newer writings, but I can say that I would not waste my money on something else by her. Why should she get rich off my dollar? It was overwhelming when my daughter was diagnosed as a celiac. Even the support group in my area recommended this book, but I was sorely disappointed with the content. There was nothing of interest, or even of help in the first book so I would never read another.

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I haven't read either of those books, but after reading this post at work and then spending most of my drive home thinking about it, I had to post my two cents.

I ENTIRELY disagree with the attitude that "everyone cheats, it's inevitable." The doctor who diagnosed my celiac disease told me something similar. He said, "In six months, you'll feel better and want a pizza, and that's normal. It's fine as long as you don't do it too often." Well, what is too often? If every six months is ok, how about every five? Every four? How much is too much? It's too arbitrary, and I'm not interested in dealing with that slippery slope. I've been gluten-free for two years, and I've never cheated once. I've never even been tempted to cheat.

Now, that's not to say that I'm immune to the smell of fresh bread, or don't pine a little at the sight of a beer. But I just can't justify to myself having "just a little" gluten. Why tease myself that way? I can probably make the same thing at home that's almost as good (if not as good) that is safe and I can eat whenever I want. I feel like if I let myself have a pizza every once in a while, as some kind of strange reward for being good on my diet (how backwards is that?), then what - I'm just biding my time til my next taste of gluten? No thanks!

Of course, if you're able to justify to yourself that it's ok to cheat once in a while, then that's fine - it's your decision. You are the one dealing with the consequences, not someone else! But I just hope that people aren't using someone else's justification, that it's ok because everyone does it. Because not everyone cheats.

Thanks for letting me rant, and be sure to be good to your bodies!

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Everyone cheat? I don't think so. I read Against the Grain and couldn't believe the crap that was in there. Very poorly researched but well written. Celiac.com is the only safe place for information because we've been there and suffered through it. I don't know what Lowell was thinking. I don't think she ever really had to suffer the fatigue, brain fog and extreme pain most of us have had to live with. If she did she would have been more careful and never would cheat either.

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Right on, guys! If someone is concerned about his health and is seriously committed to following the diet to the letter, then the attitude that "everyone cheats" is not helpful in the least. I suppose that she is playing to the human weakness in us all, but in so doing, she is overlooking our potential strength! I also have never cheated or even been tempted to do so.

Paula

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Guest nini

I read Against the Grain when I was newly diagnosed and didn't know any better, at the time I did enjoy the book, I enjoyed her style of writing and thought that some of her advice was useful. I also took from it that I needed to make my own decisions after doing my own research and verifying for myself what was gluten free. I do think she's got some good things in the book, maybe instead of just warning everyone to stay away from her books, we should instead be forming a letter writing campaign to her to let her know of the inaccuracies in her book and how dangerous some of her statements are.

You have a really good point celiac3270 in that newbies are going to take her word as gospel as far as what is safe or not, but I do believe that she does make a disclaimer in her book that this is her personal experience and that readers will need to discern for themselves what is useful or not. I did get a little irritated at her calling the new book "The Gluten Free Bible" though, IMHO that is just crap!

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:o Ok Since I am one of the newbies, and haven't started the diet yet, still waiting for the appt. with the G.I. I went to the local bookstore and bought "Dangerous Grains" by James Braly,M.D. and Ron Hoggan, M.A. and "Eating Gluten Free" by Shreve Stockton.

Has anybody read these? Is there any conflicting info. in here to???

I was trying to find books by by Dana Korn, but they did not have them, I will just order them on amazon.

Bette

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"Dangerous Grains" is a good one. After reading that I had absolutely no desire to ever eat a donut ever again.

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Dangerous Grains is an absolutely amazing book, so good choice Bette!!! It is very well written and I have not found any discrepencies or any comments that I have found to be inaccurate!! It is a must have.

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RE: Dangerous Grains

As most here in forum know, my husband is celiac, I am not. After reading Dangerous Grains it made ME not want to eat wheat!

Maybe the "Dummies" publishers should make "Going gluten free for Dummies!" as the beginner book.

RE: consecrated hosts in Catholic faith. As I recall, the host is not to be dropped to the ground for any reason (we've been through this on another thread, but it bears repeating just to clarify it, not to start a discussion on religion/faith again) as the consecrated host is to Catholics the actual body of Christ and must be handled with reverence. I find giving it to the birds bizzare.

Now I'll have to go to library and skim through this new "bible" of Jax's. If it is indeed chock full of inaccuracies according to "tried & true" celiacs and would make a newbie practice their "celiacism" incorrectly, then it should be pointed out; however, if pointing that out consititues "criticism" then call it what you will.

I don't use Delphi forum but no one there should be attacking the author or her family personally. That will certainly take away from the issue.

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I'm the person (Megan Tichy) mentioned throughout the "open letter" from Jax that was posted on St. John'e Listserv. I wanted to share what I attempted to post to the listserv about it yesterday (my post has yet to appear... ???). And just say this: I'm not "out to get her" as Jax made it seem. In fact, I said some positive things about her too, like that she is talented. I used to think she was funny too. Until she made this a personal attack on me by mentioning my name repeatedly throughout her letter. *My* only true complaint was with regard to the Pfizer pharmaceuticals as posted on amazon .com. She really made me sound like a monster. Like I was masterminding an attack against her, and I am most certainly not doing that. I merely posted a summary of responses that I received from fellow listmates, as you'll understand after reading the following.

Fellow Listmates:

In an effort to make sense of the recent "open letter" from Jax Peters Lowell, author of The Gluten Free Bible, I am re-sending my two relevant posts: the very first post that I made to the Listserv regarding the gluten-free status of Pfizer drugs as mentioned in Jax's book (below, message #1) and the "review" post that followed it (below, message #2).

Jax's letter read in part that there was "clear and compelling evidence that a group of people are conspiring to destroy a book and sully its author's reputation" and "as for me I am deeply saddened by the treatment I have received at the hands of a malicious few."

Please note that after I made my initial post (message #1) I started receiving several messages from people all over the US and Canada regarding *their* experiences with the book. None were positive. So I decided I'd post a review on amazon .com, and copy in the Listserv to let you all know about it.

In that "review" post I *included* a *summary* of the emails I'd received from others following my first post (but in my haste forgot to clearly label it as a "summary" as well as a review -- so some people, including Jax apparently, read the entire post as if it was all coming from me...). Many of these emailers probably did a simple "cut and paste" from something they'd posted on another board.

Thus Jax's comments: "Because of the phrasing of Ms. Tichy's recent communique is almost eerie in its similarity to these other reviews..." and, "I was crushed and I was hurt, but I was also suspicious. A few of these sounded as if the same person had written them, or there had been a discussion of some previously agreed-upon position. Even the punctuation was the same."

My apologies for not giving those individuals credit at the time, but as I understand it we value each others' privacy on St. John's Listserv. And these summarization of posts are a frequent occurrence - it is how we get out valuable information in a clear and concise way.

I removed headers and contact info from each person's email and separated each person's comment with a line, as is traditionally done on the Listserv. The only thing I forgot to do was say that it was indeed a "summary" - that is up until my own review (from amazon .com) which appears at the end of the message.

Again, I have no affiliation with these other posters or posters from the DELPHI forums. Jax's comments came off as nothing more than delusional and paranoid.

We all have the right to share our opinions, and I am not a malicious person because I shared mine. People post negative reviews on amazon .com everyday. Lashing out at your critics and calling them names within their own support forums is just plain juvenile.

________MESSAGE #1________

Date: Thu, 9 Jun 2005 11:14:45 -0500

To: CELIAC@MAELSTROM.STJOHNS.EDU

Sender: Celiac/Coeliac Wheat/Gluten-Free List

<CELIAC@MAELSTROM.STJOHNS.EDU>

Poster: Megan Tichy <mtichy@MAIL.CHEM.TAMU.EDU>

Subject: The Gluten Free Bible

With regard to the recent post:

--I found on page 394 of the new book "The Gluten Free

Bible" that Lipitor is listed as NOT Gluten Free.

I called Pfizer Pharmaceuticals and spoke with a

pharmacist who confirmed Lipitor DOES NOT contain Gluten--

I also found this to be the case for Pfizer's Zoloft.

It is listed in the book as being not gluten free, and I

called Pfizer to find out that it IS 100% free of gluten,

according to the representative I spoke to.

Not sure if Lowell was trying to make the point that

Pfizer would not cooperate by releasing their gluten-free status at

the time she wrote her book, or if there was known to be

gluten in their formulas.

Megan

________MESSAGE #2________

Book Description: The definitive guide to the gluten-free

lifestyle, completely revised and updated for the 2.2

million Americans with celiac disease.....Since this book

was first published in 1995 (as Against the Grain), Jax

Peters Lowell has been helping celiacs follow a

gluten-free diet with creativity, resourcefulness, and

humor.

-----------------------------------

You may want to check some of the other facts in her book

for accuracy.

-----------------------------------

There are numerous errors in the book, plus a lot of bad

advice (like eating the insides from a sandwich or cheese

off a cracker). All reviews critical of the book on Amazon

have been mysteriously disappearing or have been edited in

some way (not by the poster of the review).

-----------------------------------

The Gluten Free Bible is terrible. There are even worse

statements at the Delphi Forums board and at the

amazon .com customer review section. Here's what I posted

about it at celiac.com:

There have been rantings at Delphi on the inaccuracy of

the book. First, Jax doesn't research carefully: she says

that Cheetos and Tootsie Rolls aren't gluten-free--they both are.

She has so many inaccuracies, suggesting that you eat

something just so you don't offend your host, regardless

of whether it contains gluten and suggesting that you take

the wheat communion, hold onto it, and later feed it to

the birds. She is more aware of contamination in this book

than in the last, but I still wouldn't trust the book

farther than I can throw it . She still mentions removing

the contents of a "normal" sandwich and putting it between

two slices of gluten free bread and eating it -- if you

are not "too sensitive."

-----------------------------------

...the review section at Amazon... basically a war between

the newbies who like the writing style and assume the

info. is correct and the old-timers who are warring

against it:

http://www.amazon .com/exec/obidos/ASIN/080...3353027-3899013

To those who want more validation, either read the reviews

from the link above or:

1) Go to the web site,

http://forums.delphiforums.com/celiac/start

2) Click on "messages" or "start reading"

3) Go to the general discussion folder. There should be a

topic called something like "Gluten-Free Bible not so

great" or "Gluten-Free Bible Review." If you do not see

it, make a post and someone will link you to it.

-----------------------------------

My Amazon review (posted today): Most of the people who

gave shining, sparkly reviews of this book focus on how it

made them feel. It is not boring. Jax is a talented

writer, I'll give her that. But when I read on page 394

that the perscription drugs I was on and had been on for 5

years (both Pfizer drugs) were not gluten-free I was seriously

troubled.

Many follow-ups with both Pfizer and online support groups

have indicated just how full of erroneous information this

book is.

I went off my meds immediately thinking I was injesting

gluten. I suffered the undue consequences of going off

"cold turkey" when I needed to taper off. In actuality

those meds ARE gluten-free, and always were!!!

If you want the facts (as boring as they are) -- dont rely

on this book. If you want some comfort and laughs then

give it a read, but be sure to take any factual

information with a grain of salt, as they say.

Jax was indeed very lax when writing this book.

Megan Tichy

`````````````````````````````````

Dr. Megan Tichy

Lecturer, Texas A&M University

3255 TAMU, Department of Chemistry

College Station, TX 77843-3255

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I think she is creating more interest in her book than if this so- called attack on her character did not exist.It smells of a publicity stunt. I agree with her about what she said about humor, and that is it. I read "Against the Grain" and hated it, so I never read anything else she wrote. She is so not worth it. Anyone can bring legal action against anyone. That does not mean the case will be found to have merit, and thus be allowed to proceed. I do not see how a few bad reviews should allow one person to sue another. Did she ever hear of free speech? Maybe all that gluten she is getting when she cheats has put her in such a fog she is confused!!!!!

As for feeding a consecrated host to birds, that is absolutely wrong. I doubt any Catholis priest would find it charming, as that very action is sacreligous.

celiac3270, did she ever mention you personally, or just Megan? What bull!

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back to the subject of cheating: first of all, (check other forums) it's not something typically *done* by celiacs. most of us have been so sick we'd never willingly submit our bodies to gluten again!

second of all, what the author ought to know AND report to her readers is that even if someone eats gluten and feels NO EFFECTS WHATSOEVER, the internal damage (lymphocitosis, damage to villi, etc) STILL happens. your blood antibodies will get thrown off and take at least six months to right themselves.

people who have been gluten-free for long periods of time tend to have only small reactions to gluten because their systems are not inflamed like they used to be. if we were to cheat b/c it didn't really feel painful, we'd be doing inner damage and eventually our system WOULD get re-inflamed, etc etc.

it makes me really angry that someone would publish things like this without an organized outcry. it's bad enough not all doctors know that much about celiac. i'm a writer myself and in nonfiction, there is an implicit responsibility to tell the freaking truth! esp. when health is involved. but she sounds a little weird anyway.

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I agree about the cheating aspect. A better way to put that would have been "everybody will *want* to cheat" at one time or another...but knowingly eating something with gluten is like an alcoholic having a cocktail every now and then....not good! I know, because the only time I knowingly ate gluten in the last 5 months has been a communion wafer--did this twice--and the last time around I could tell that not only was I sick, real damage was being done. *Not* worth it!!!

I guess maybe if the writing style etc. is interesting with that book one could just check it out of the library and read it for kicks, keeping in mind that this person is *not* an expert. However, it is scary thinking that newbies are getting advice like taking apart a sandwich and rebuilding it on gluten-free bread. I wouldn't do that, and I can see where thinking along these lines could lead to other slip-ups that could really add up.

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Ok. This is the most interesting thread here. I'm shocked at what I've been reading and I want to commend celiac3270 for his concern, his maturity, his ability to handle the response of that writer...Damn, are you sure you're only 14?? I was such a dweeb at 14. I certainly couldn't handle myself the way you do.

The attitude of that author, her pompous tone of indignation and her bad advice are combining to discredit her. She would love to blame her poor reviews on a rogue mob of spiteful Celiacs who couldn't possible have the best interests of their fellow Celacs in mind when they criticize her. Let her work on that fantasy for awhile. Eventually everyone who is forced to endure her version of abuse will see the truth. I'm ever grateful to people like Scott Adams and you guys here for keeping new Celiacs accurately informed. Celiac.com was THE site for my indoctrination into the gluten free life four years ago, and I'm so grateful I got my education here rather than from a book like the one that's being discussed.

On the subject of Cheating...What trash. Maybe Celiacs should start their own version of A.A. for those who "fall off the grain-wagon".

And I breezed by something about a lawsuit against those who wrote bad reviews and hurt her financially.... Geez, Ebert and Roeper should look out! I know, let's tell her we're going to sue her for dishing out piss-poor medical advice. It's all total idiocy. celiac3270, you being only 14 and all, you should be told that any threat of a lawsuit is total garbage. I hope you didn't consider it even the remotest of possibilities. She's an idiot. I'm no genius, but she really takes the cake.

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    Now we never leave home without our Epipens and our gluten free food supplies. We analyze every food label. We are hyper vigilant about cross contamination. We are constantly looking for welts and praying for no stomach pain. We are always prepared and on guard. It's just what we do now. Anything to protect our child, our love...like so many other parents out there have to do every moment of ever day!  
    Then, my second brush with a natural disaster happened, without any notice, leaving us once again scrambling to find a safe place to shelter. It was a warm and muggy summer morning, and my husband was away on a business trip leaving my young daughter and me to enjoy our summer day. Our Severe Weather Alert Radio was going off, again, as I continued getting our daughter ready for gymnastics.  Having gotten used to the (what seemed to be daily) “Severe Thunderstorm warning,” I didn’t pay much attention to it. I continued downstairs with my daughter and our dog, when I caught a glimpse out the window of an incredibly black looking cloud. By the time I got downstairs, I saw the cover to our grill literally shoot straight up into the air. Because we didn’t have a fenced in yard, I quickly ran outside and chased the cover, when subsequently, I saw my neighbor’s lawn furniture blow pass me. I quickly realized I made a big mistake going outside. As I ran back inside, I heard debris hitting the front of our home.  Our dog was the first one to the basement door! As we sat huddled in the dark corner of our basement, I was once again thinking where are we going to go if our house is destroyed. I was not prepared, and I should have been. I should have learned my lesson the first time. Once the storm passed, we quickly realized we were without power and most of our trees were destroyed. We were lucky that our house had minimal damage, but that wasn’t true for most of the area surrounding us.  We were without power for five days. We lost most of our food - our gluten free food.
    That is when I knew we had to be prepared. No more winging it. We couldn’t take a chance like that ever again. We were “lucky” one too many times. We were very fortunate that we did not lose our home to the Los Angeles wildfire, and only had minimal damage from the severe storm which hit our home in Illinois.
      
    In 2017 alone, FEMA (Federal Emergency Management Agency) had 137 natural disasters declared within the United States. According to FEMA, around 50% of the United States population isn’t prepared for a natural disaster. These disasters can happen anywhere, anytime and some without notice. It’s hard enough being a parent, let alone being a parent of a gluten free family member. Now, add a natural disaster on top of that. Are you prepared?
    You can find my Gluten Free Emergency Food Bags and other useful products at www.allergynavigator.com.  

    Jefferson Adams
    Celiac.com 04/23/2018 - A team of researchers recently set out to learn whether celiac disease patients commonly suffer cognitive impairment at the time they are diagnosed, and to compare their cognitive performance with non-celiac subjects with similar chronic symptoms and to a group of healthy control subjects.
    The research team included G Longarini, P Richly, MP Temprano, AF Costa, H Vázquez, ML Moreno, S Niveloni, P López, E Smecuol, R Mazure, A González, E Mauriño, and JC Bai. They are variously associated with the Small Bowel Section, Department of Medicine, Dr. C. Bonorino Udaondo Gastroenterology Hospital; Neurocience Cognitive and Traslational Institute (INECO), Favaloro Fundation, CONICET, Buenos Aires; the Brain Health Center (CESAL), Quilmes, Argentina; the Research Council, MSAL, CABA; and with the Research Institute, School of Medicine, Universidad del Salvador.
    The team enrolled fifty adults with symptoms and indications of celiac disease in a prospective cohort without regard to the final diagnosis.  At baseline, all individuals underwent cognitive functional and psychological evaluation. The team then compared celiac disease patients with subjects without celiac disease, and with healthy controls matched by sex, age, and education.
    Celiac disease patients had similar cognitive performance and anxiety, but no significant differences in depression scores compared with disease controls.
    A total of thirty-three subjects were diagnosed with celiac disease. Compared with the 26 healthy control subjects, the 17 celiac disease subjects, and the 17 disease control subjects, who mostly had irritable bowel syndrome, showed impaired cognitive performance (P=0.02 and P=0.04, respectively), functional impairment (P<0.01), and higher depression (P<0.01). 
    From their data, the team noted that any abnormal cognitive functions they saw in adults with newly diagnosed celiac disease did not seem not to be a result of the disease itself. 
    Their results indicate that cognitive dysfunction in celiac patients could be related to long-term symptoms from chronic disease, in general.
    Source:
    J Clin Gastroenterol. 2018 Mar 1. doi: 10.1097/MCG.0000000000001018.

    Connie Sarros
    Celiac.com 04/21/2018 - Dear Friends and Readers,
    I have been writing articles for Scott Adams since the 2002 Summer Issue of the Scott-Free Press. The Scott-Free Press evolved into the Journal of Gluten Sensitivity. I felt honored when Scott asked me ten years ago to contribute to his quarterly journal and it's been a privilege to write articles for his publication ever since.
    Due to personal health reasons and restrictions, I find that I need to retire. My husband and I can no longer travel the country speaking at conferences and to support groups (which we dearly loved to do) nor can I commit to writing more books, articles, or menus. Consequently, I will no longer be contributing articles to the Journal of Gluten Sensitivity. 
    My following books will still be available at Amazon.com:
    Gluten-free Cooking for Dummies Student's Vegetarian Cookbook for Dummies Wheat-free Gluten-free Dessert Cookbook Wheat-free Gluten-free Reduced Calorie Cookbook Wheat-free Gluten-free Cookbook for Kids and Busy Adults (revised version) My first book was published in 1996. My journey since then has been incredible. I have met so many in the celiac community and I feel blessed to be able to call you friends. Many of you have told me that I helped to change your life – let me assure you that your kind words, your phone calls, your thoughtful notes, and your feedback throughout the years have had a vital impact on my life, too. Thank you for all of your support through these years.

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    • You could very well have celiac disease, but there are 200 symptoms attributed to celiac disease and those often overlap with other illnesses.  You could get tested, but all celiac testing requires you to be on a full gluten diet for 8 to 12 weeks prior to a blood draw (it can take time for antibodies to ramp up and spill into the bloodstream).    You have been off for a month and it is possible that you could have healed.   Consider getting back on gluten and get tested.  Since you have Gastritis, maybe you can get a GI referral and an endoscopy to biopsy the stomach and the small intestine.  Only two weeks on a gluten diet is required for that procedure.      Learn more about testing: http://www.cureceliacdisease.org/screening/  
    • I'm a 30 year old female. All of my life I've had extreme bloating after eating. About 4 years ago I started having upper stomach pain. It's dead center below my rib cage where the diaphragm is located. As the years have passed the pain became more intense and more frequent until it was daily and affecting my ability to function. I had 2 drs say it was gastritis but prilosec did nothing to help. My head got to where it always hurt and I was exhausted constantly. If the pain and head fog wasn't already enough my joints started to hurt and swell making it hard to get out of bed. I'm 4ft 11 inches and was 130 pounds and my blood pressure was staying 160/105. I've always suffered with spells of constipation then episodes of D. I was getting mouth sores and had random rashes and itching mostly on my legs. I've also suffered anemia. When my stomach pain is at its worst I have foul smelling stools. All my liver and pancreas testing have come back normal. I tested negative for h pylori but am currently on carafate for ulcers. I'm going for another gallbladder ultrasound in 3 days as 9 years ago the ultrasound showed sludge so the dr is wanting to recheck. I've done research for a while now on gluten and have cut it out for over a month. I have noticed a significant improvement since stopping it and only have flare ups if I accidently consume gluten. So my question is does this sound like anything you've experienced and been positive for celiac? I also have numbness and tingling in my feet and hands 
    • Welcome!   With a sister who has celiac disease, you are at a much higher risk of developing it.  I would go for the complete 12 weeks.  Why?  Because doctors recommend anywhere from six to 12 weeks for the blood tests, but there has not been many long term studies to back up the claims.  Best to play it safe.  It sounds like you are not suffering too much (I had no GI symptoms and just anemia when I was diagnosed).  Ask your PCP to run the full panel, including  the DGP and EMA tests.  Why?  Not all celiacs test positive to the TTG, like me!  If your Kaiser doc refuses, please ask if you can be referred to a GI and select one who handles celiac patients.  Some celiacs are even seronegative!  In that case, going to an endoscopy is necessary.  Keep in mind that you might just be developing it or know that if everything negative now, you can still develop it in the future.  First-degree relatives should get tested every few years even if there are no symptoms.   What if your PCP refuses even after you show him the printed data supporting your claims (and the ones I made...so hit Dr. Google)? Get to another PCP or put your request in writing  via the patient portal or a registered letter.  Be nice.  Support your claims.  Ask for the full panel or to be referred to a GI.  In writing, they have to respond.   I do know that the TTG catches most celiacs, but not all.  If celiac disease is still suspected, you should move to the next series of celiac tests.  Unfortunately, to keep costs down, Kaiser just orders the TTG for initial screening.  You have to get around that.  I found that out when family  went in for testing and they had Kaiser.   Advocate for your health!  Document!  Save and print all test results and maintain file.   Take care!  
    • hi All, I had been getting so gradually sick that I don't know when it started, (but I am now assuming 1994).  In 2008, I succumbed to pressure from my insurance rep to get more insurance, and they would even come to my house to test my blood.  I was denied insurance and recommended to see my doctor, who told me I had the liver of a severe alcoholic.  I very rarely drink. I went for tests and the doctor was baffled.  He said I should lose weight.  He said it was likely fatty liver disease. That was 2008.  For the next few years I got tests, tried to eat healthy, and every so often I would see if it was helping my liver numbers. I got stomach aches when I ate toast or a sandwich, but didnt link it to the toast except later, in hindsight.  How could toast give me a stomach ache?  Anyway, on the advice of my doctor, I tried very hard to lose weight, so went lo-carb.  One day, I had had no breakfast and at church 'goodie-time' was unable to resist all the carbs.  Later that afternoon, I felt like someone had literally poisoned me. This was now 2011.  I decided to not eat or drink anything but almonds and organic cold pressed  apple juice in a glass jar, and ate only those things for the next 3-4 days while I looked for symptoms on the Internet. I narrowed it down to celiac disease and went to the doctor.  I refused to eat gluten to get the test.  I decided not to eat gluten and I got better. I then started a job in China.  I learned how to say things like "no soy sauce" since it's made from wheat.  I got so much better.  I knew what my reactions were to gluten, especially the one that happened first: I would get a shakiness inside, like my blood system was micro-vibrating. i got the flu and was in bed for three days straight eating only mandarin oranges and water.  After a couple of days, I got that shakiness, suddenly, lying in bed.  I was astounded, cause I had only water and oranges.  Then I remembered that I had taken two Advil, in the gel cap form.  I looked on the Internet, and sure enough, the gel caps contained gluten.  Wow.  Even that small amount in two gel caps set it off. I was very vigilant.  Then one day, back in Canada, I was making hot dogs for a four-year-old and I had fresh bakery buns.  I couldn't resist.  I guess I thought, well, it's been a couple of years gluten free, let's see what happens.  I ate one and a half huge bakery hot dog buns on impulse.  Big mistake. I got so, so sick.  I was sick for 6 weeks with various symptoms.  Spleen pain, liver pain, kidney pain, migraine headaches, stomach issues, constipation, dizziness, brain fog, irritability, etc.  This was 2013. After one week of still being sick, I thought it's probably too late, but I should get that celiac test to see if there are detectable antibodies.  I went to the doctor, who didn't think it was necessary and insisted it was fatty liver disease and not celiac.  He humoured me and gave me the requisition anyway.  It wasn't too late!  One week later. i was shocked to see that my antibody level was 99. ( If you have less than 20 you don't have Celiac. It is called tTg test).  If you have 100, they say you don't really need a biopsy and it's pretty much confirmed celiac.  The doctor was a little bit embarrassed and said, "looks like you've diagnosed yourself". So finally he shut up about fatty liver disease.   I got so much better living in China.  I occasionally slipped. I  then went back to canada for a year.  I developed DH, as I got these lesions starting on my thumb and then on my fingers and palms.  Finally after 6 months I cut out dairy.  I had heard it was also somehow bad for Celiacs from the Internet but I really didn't want to cut out dairy as it was bad enough without gluten.  I finally did and the DH cleared up.   Then back to China.  I would go back to Canada twice a year for the time off from spring and summer holidays.  It was really hard to be around western food temptations and I would get "glutened" even though I tried hard. I began to get a strange pain in my leg and the doctor in canada said it was likely arthritis in my hip.  i went for an xray but it didnt show anything.  it really killed me to get that pain in my leg and then in my hip.  i would cry out and have to sit down.  i started riding my bike to work in china cause it was painful to walk very far.  I had started to reintroduce dairy while in China and found that I could eat yogurt, which I love. I had heard that people blamed their gluten reactions on Roundup, or glyphosate, because they could eat flour products in other countries but not North America.  One day about six months ago I made cookies for my students.  I wore gloves and was very careful.  Before this, I wouldn't even be in the same room with flour.  But nothing happened.  Then I tasted a cookie.  Nothing happened!!  The next day, I ate a whole cookie. Nothing happened!!  I began to think there was something to the theory of North America and roundup.  I still avoided flour in general cause I didn't want to push it, but I started eating soy sauce and relaxed a bit - started going to restaurants in china, etc. instead of micromanaging food in my kitchen, cause I was evidently not reacting to gluten in China.  I then realized that the only episodes of pain I had had were when I was in Canada the previous summer and spring.  Very strange.  So.  I got back to Canada, last spring, had my usual gluten free meal on the airplane, and then visited my mother.  I ate only organic yogurt.  Nothing else, and a few hours later I was attacked by almost every gluten related pain I had ever had.  My hip was suddenly shooting pain and I cried out and limped to the couch.  My mother asked, what did you eat?  I said, nothing!  Only organic yogurt!   Of course after any glutening, it takes weeks for these pains to subside, and I endured pain stabs in my spleen for a while.  Then back to China, where I was able to eat normally.  No pains, nothing.  I ate yogurt, made myself with uht milk imported from Germany or Australia, and I was fine.     Until the day when I ate one of the chocolate bars I had brought from Canada as prizes for my students.  Instant reaction! Spleen pain!  I had heard that sugar cane was as bad as flour for being drenched in roundup.  Now I was convinced. It was definitely stuff from Canada that was the culprit.  Only farm products.  Yes, they say the yogurt is organic, but I'm sure they feed the milk cows hay that has been exposed to roundup.   Now I know exactly what I can eat and where.  I love the food here, and it's safe.  There are exceptions.  They use pesticides on fruit, cause I get a stomach ache when I eat certain fruits, but it's a different reaction that the gluten reaction,  I can eat flour products without a huge reaction, but I still have celiac, because I do get reactions even from Chinese flour, just not as bad as I did before.  A mild sick feeling, like something is off, kind of unbalanced, and of course the inevitable shakiness.  I react much worse to Canadian chocolate.  But there is a huge difference between food here and food there.  A very painful difference.  Hard to figure out, but I think I have. so here's my theory,  roundup actually causes the celiac disease, or whatever disease you might happen to be genetically susceptible to. (My uncle has arthritis in his hip). If you keep ingesting it, you will get gradually sicker and sicker and get some kind of disease.  If you stop eating roundup completely, you will heal with a healthy diet.  If you already have a disease like celiac or DH you can manage it and stay healthy if you are totally roundup free. My dad died of nonHodgkins lymphoma and he insisted it was the roundup the neighbor had been spraying on his farm, right next to my dads organic hobby farm.  Now I believe him. I wish I'd been able to piece this together a bit earlier.  Since 1994, many diseases have hugely increased.  That's when they started with the roundup and there is a one on one correspondence on the graphs with roundup use and  many diseases. sorry for the novel but I just can't keep this all to myself,  I'm like the canary in the mine.  But roundup is everywhere so I don't know if you can really avoid it in North America, sadly. My advice is to move elsewhere and figure it out like I did. i saw a youtube video by an MIT researcher that they are now figuring out that glyphosate actually takes up the place of the essential amino acid glycine in your body.  Because they are molecularly similar, glyphosate gets in there and stops glycine from being able to do it's job in your body.  So it causes all sorts of problems in a gradual way and eventually you will have trouble. i hope this helps!  Stay away from farm products!  I hope it's not true what the conspiracy theorists say (that they are spraying chemicals, chemtrails etc.  I don't know if they are spraying roundup) but if it is, that's the end of the world as we know it.  I don't really want to go there,  I just know what I know and I'm sharing it.   this is just the short version  but I've tried to include important info.  Anyone else have a similar story in any way?
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