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New Book: Celiac Disease: A Hidden Epidemic


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floridanative Community Regular

Ditto to everything munchkineete said. This book led me to help a friend ask her doc for a Celiac test. She has way too many symptoms not to at least rule out Celiac. Well instead of laughing at her, he doc referred her to Dr. Cynthia Rudert in Atlanta. I'm very interested to see if Dr. Rudert will use the brand new Celiac blood test or not. All I know is that she told my friend her blood work would be going to CA for results. I'm taking the book to my doc tomorrow and asking her to get a copy for her own good and the good of her patients.

I think this book should be required reading to get out of med. school. It's not too complicated but it shows how easy it is to miss the symptoms of Celiac when they are staring you right in the face!


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Guest Robbin

Thanks for the insight on the book. Reviews by people who have the same expectations are SO helpful. Floridanative, I think I will do the same with my dr. Too many people are suffering for too long because of IGNORANCE. Also, Jenvan--thanks for the info on Overstock.com--never ordered from them--will check it out now! celiac3270, are you really a teen?!!!! What a cool, smart, nice guy you are!! He will find a cure for this and most anything else with those "little gray cells"!!!! :):):)

floridanative Community Regular

Robbin - I'm happy to report that my doctor did not get offended in the least when I gave her a print out of an informative article on Celiac. Plus I wrote very large on the back of the pages the name of Dr. Green's book. I explained that the first line of defense is the pcp and since they have little or no training, this is why so many Celiacs are missed in the beginning stages of the active dissease. She explained that she remembers only that she was taught that Celiac was a digestive disorder, that it's very rare and that patients would present with 'D' and so she asked me if I'd had that as a symptom and I told her no. Only DH five years ago and the anemia last spring, then the bloating, indigestion, stomach cramps began last year but were farily infrequent. Then I told her that sometimes only infertility was a symptom for Celiacs and she looked pretty shocked about that one. I said just read Dr. Green's book so you may be able to help someone you wouldn't have helped otherwise. I said I was only trying to help her help other patients and she said that since things change all the time it's good to know new information. I would be surprised if she doesn't get the book because without question she did not know most of what I told her or what was in the article I gave her. Like some patients are totally asymptomatic and so forth.

Needless to say, this way of educating doctors is not the way to go for the whole country to get up to date which is why I'm trying to send letters to every insurance company in the US. This campaign is in another post, along with sample letters Canadian Karen gave us permission to copy. She did a beautiful job writing the letters and you can change them to fit what you are most comfortable saying. I'm sending my letters anonymously as not to bring attn. to my new dx of Celiac.

Jen H Contributor

I just finished reading the book and, as a newbie to celiac disease, found it really helpful. It has a lot of info on different autoimmune disorders and how they connect with celiac disease. As some of the previous posters mentioned, it is very scientific and explains the genetics well, but lacks substance in real life application.

mookie03 Contributor

i went to B&N today and had taken 2 steps before i saw this book on the "New releases health" stand-- it made me SOOO happy to see that it was so accessible! I mean, there are several books out there on celiac disease but to walk into a big B&N in NYC and see the book just glaring at me-- that led me to believe that this book could actually play a big part in getting the word out to people about this "epidemic"

CMCM Rising Star

I'm a very voracious reader on this subject, so I'm reading this book after having read several others. I haven't found much that I haven't already read, I must say. It's interesting enough, clearly and simply presented, and perhaps it will carry more authority in the medical community since it is written by a DOCTOR (bow down and worship now). It's a good addition to the recent celiac literature out there, and it's always good for us when something new and authoritative comes out, no doubt about it.

I have to say if I were recommending books to read, I don't think this is the first book I'd recommend. To me, "Dangerous Grains" was very very eye opening in a way that this book is not, and it is the first one any of us should read. I also learned a lot (with some overlap) from "Wheat Free, Worry Free" and also "Going Against the Grain." I read all 3 of those more than once, just trying to absorb it all. I would rate Green's book 4th in the list of books compared to the 3 mentioned above.

I'm now reading one called "A Personal Touch....on Celiac Disease", which is very good. I'm really relating to all the stories of misdiagnosis and difficulty getting the doctors to take then seriously. Here's the Amazon book description of it:

"Celiac disease is a condition that presents itself with a variety of symptoms including but not limited to diarrhea, constipation, vomiting, headaches, malnutrition, and the list goes on. Members of the celiac community share their stories, tips, poems, and recipes in this book containing 94 different pieces to help those with Celiac and those who have been misdiagnosed with irritable bowel syndrome (IBS)."

floridanative Community Regular

I think for someone who is newly dx'd with Celiac this book is a must read. It's not full of funny anecdotes like Wheat-Free, Worry-Free to say the least. But so far this is the first book I've been able to find and take in to my doctor to tell what deficiencies I needed to be tested for. My idiot GI said to call him in six months for another biopsy and hung up. No thanks doc! My pcp is not familiar at all with Celiac and has no idea how to help me. I can't get in to the new GI unitl late April. So with the book I was able to ask for the correct tests I needed....now if my insurance will just pay for the bone scan.....did I mention I despise insurance companies?!


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Rachel--24 Collaborator

I just got my book today at Barnes & Noble. I'm looking forward to reading it but not really expecting to learn anything new. Dangerous Grains tops my list...but this book looks like it'll be a good read. :)

  • 1 year later...
lfij Newbie

i knwo this is an old thread but i think some people on this board really need to read this book because they are clearly confused on some things, and it really cleared a bunch of stuff up for me when i first found out i was a celiac!

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    • Mari
      Years  ago a friend and I drove north into Canada hoping to find a ski resort open in late spring,We were in my VW and found a small ski area near a small town and started up this gravelled road up a mountain. We  got about halfway up and got stuck in the mud. We tried everything we could think of but an hour later we were still stuck. Finally a pickup came down the road, laughed at our situation, then pulled the VW free of the mud. We followed him back to the ski area where where he started up the rope ski lift and we had an enjoyable hour of skiing and gave us a shot of aquavit  before we left.It was a great rescue.  In some ways this reminds me of your situation. You are waiting for a rescue and you have chosen medical practitioners to do it now or as soon as possible. As you have found out the med. experts have not learned how to help you. You face years of continuing to feel horrible, frustrated searching for your rescuer to save you. You can break away from from this pattern of thinking and you have begun breaking  away by using some herbs and supplements from doTerra. Now you can start trying some of the suggestions thatother Celiacs have written to your original posts.  You live with other people who eat gluten foods. Cross contamination is very possible. Are you sure that their food is completely separate from their food. It  is not only the gluten grains you need to avoid (wheat, barley, rye) but possibly oats, cows milk also. Whenever you fall back into that angry and frustrated way of thinking get up and walk around for a whild. You will learn ways to break that way of thinking about your problems.  Best wishes for your future. May you enjpy a better life.  
    • marion wheaton
      Thanks for responding. I researched further and Lindt Lindor chocolate balls do contain barely malt powder which contains gluten. I was surprised at all of the conflicting information I found when I checked online.
    • trents
      @BlessedinBoston, it is possible that in Canada the product in question is formulated differently than in the USA or at least processed in in a facility that precludes cross contamination. I assume from your user name that you are in the USA. And it is also possible that the product meets the FDA requirement of not more than 20ppm of gluten but you are a super sensitive celiac for whom that standard is insufficient. 
    • BlessedinBoston
      No,Lindt is not gluten free no matter what they say on their website. I found out the hard way when I was newly diagnosed in 2000. At that time the Lindt truffles were just becoming popular and were only sold in small specialty shops at the mall. You couldn't buy them in any stores like today and I was obsessed with them 😁. Took me a while to get around to checking them and was heartbroken when I saw they were absolutely not gluten free 😔. Felt the same when I realized Twizzlers weren't either. Took me a while to get my diet on order after being diagnosed. I was diagnosed with small bowel non Hodgkins lymphoma at the same time. So it was a very stressful time to say the least. Hope this helps 😁.
    • knitty kitty
      @Jmartes71, I understand your frustration and anger.  I've been in a similar situation where no doctor took me seriously, accused me of making things up, and eventually sent me home to suffer alone.   My doctors did not recognize nutritional deficiencies.  Doctors are trained in medical learning institutions that are funded by pharmaceutical companies.  They are taught which medications cover up which symptoms.  Doctors are required to take twenty  hours of nutritional education in seven years of medical training.  (They can earn nine hours in Nutrition by taking a three day weekend seminar.)  They are taught nutritional deficiencies are passe' and don't happen in our well fed Western society any more.  In Celiac Disease, the autoimmune response and inflammation affects the absorption of ALL the essential vitamins and minerals.  Correcting nutritional deficiencies caused by malabsorption is essential!  I begged my doctor to check my Vitamin D level, which he did only after making sure my insurance would cover it.  When my Vitamin D came back extremely low, my doctor was very surprised, but refused to test for further nutritional deficiencies because he "couldn't make money prescribing vitamins.". I believe it was beyond his knowledge, so he blamed me for making stuff up, and stormed out of the exam room.  I had studied Nutrition before earning a degree in Microbiology.  I switched because I was curious what vitamins from our food were doing in our bodies.  Vitamins are substances that our bodies cannot manufacture, so we must ingest them every day.  Without them, our bodies cannot manufacture life sustaining enzymes and we sicken and die.   At home alone, I could feel myself dying.  It's an unnerving feeling, to say the least, and, so, with nothing left to lose, I relied in my education in nutrition.  My symptoms of Thiamine deficiency were the worst, so I began taking high dose Thiamine.  I had health improvement within an hour.  It was magical.  I continued taking high dose thiamine with a B Complex, magnesium. and other essential nutrients.  The health improvements continued for months.  High doses of thiamine are required to correct a thiamine deficiency because thiamine affects every cell and mitochondria in our bodies.    A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function.  The cerebellum of the brain is most affected.  The cerebellum controls things we don't have to consciously have to think about, like digestion, balance, breathing, blood pressure, heart rate, hormone regulation, and many more.  Thiamine is absorbed from the digestive tract and sent to the most important organs like the brain and the heart.  This leaves the digestive tract depleted of Thiamine and symptoms of Gastrointestinal Beriberi, a thiamine deficiency localized in the digestive system, begin to appear.  Symptoms of Gastrointestinal Beriberi include anxiety, depression, chronic fatigue, headaches, Gerd, acid reflux, gas, slow stomach emptying, gastroparesis, bloating, diarrhea and/or constipation, incontinence, abdominal pain, IBS,  SIBO, POTS, high blood pressure, heart rate changes like tachycardia, difficulty swallowing, Barrett's Esophagus, peripheral neuropathy, and more. Doctors are only taught about thiamine deficiency in alcoholism and look for the classic triad of symptoms (changes in gait, mental function, and nystagmus) but fail to realize that gastrointestinal symptoms can precede these symptoms by months.  All three classic triad of symptoms only appear in fifteen percent of patients, with most patients being diagnosed with thiamine deficiency post mortem.  I had all three but swore I didn't drink, so I was dismissed as "crazy" and sent home to die basically.   Yes, I understand how frustrating no answers from doctors can be.  I took OTC Thiamine Hydrochloride, and later thiamine in the forms TTFD (tetrahydrofurfuryl disulfide) and Benfotiamine to correct my thiamine deficiency.  I also took magnesium, needed by thiamine to make those life sustaining enzymes.  Thiamine interacts with each of the other B vitamins, so the other B vitamins must be supplemented as well.  Thiamine is safe and nontoxic even in high doses.   A doctor can administer high dose thiamine by IV along with the other B vitamins.  Again, Thiamine is safe and nontoxic even in high doses.  Thiamine should be given if only to rule Gastrointestinal Beriberi out as a cause of your symptoms.  If no improvement, no harm is done. Share the following link with your doctors.  Section Three is especially informative.  They need to be expand their knowledge about Thiamine and nutrition in Celiac Disease.  Ask for an Erythrocyte Transketolace Activity test for thiamine deficiency.  This test is more reliable than a blood test. Thiamine, gastrointestinal beriberi and acetylcholine signaling.  https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/ Best wishes!
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