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Dr. Fasano’s Gift of Gluten Freedom

Dr. Alessio Fasano, founder and director of the Center for Celiac Research at Massachusetts General Hospital, is one of the world’s leading experts in celiac disease and non-celiac gluten sensitivity. Without his dedication and research, there’s a good chance that many of us with celiac disease would still be walking around undiagnosed and chronically ill. As I have stated before, he is one of my heroes.

I had the fortune to read Dr. Fasano’s brand new book, Gluten Freedom, as I sat at O’Hare airport earlier this week due to a flight delay.   It made for one of the most fascinating flight delay experiences of my life.

Gluten Freedom explains the history of celiac disease, celiac disease awareness in the medical community, and the amazing leaps in celiac research over the past two decades.  Most significant research findings related to celiac disease are discussed and summarized in an easy to read manner. Dr. Fasano shows how celiac disease can have effects on all areas of the body, not just the digestive system, and discusses new research on the neurological and psychiatric/behavioral effects of gluten.  Non-celiac gluten sensitivity is discussed in depth as well, and Dr. Fasano makes it clear that non-celiac gluten sensitivity is a separate diagnosis from celiac disease that occurs in up to 6% of Americans. In addition, Dr. Fasano paints us a picture of why not all of us are successful on the gluten free diet, and justifies the need for additional medical treatment options for celiac disease.

My favorite part of the book was Part 3, in which the chapters deal with living with celiac disease during specific phases of life, including pregnancy, childhood, college, and the elderly years. A lot of the questions I have had others ask about me about being gluten free during pregnancy are discussed in this book.

One of my favorite quotes was Dr. Fasano’s discussion of what happens at the time of diagnosis. He states, “As a physician, I’m very sympathetic with this complex combination of emotions.  I never minimize the feelings of someone who has just realized that his or her life has been changed forever by this restriction on one of the most enjoyable activities of humankind, that is, eating.” He truly “gets it” like I wish other doctors would.

Although I’d love to be able provide a summary of the entire book for you, like I often do for journal and research articles, I cannot, as my post would end up being about 500 pages long!  If possible, I urge you to read this book on your own.  No matter what age you are, or where you are in your gluten-free journey, you will be helped by the information in it and will gain a better understanding of your medical condition.

Although the hardcover version of Gluten Freedom will not be available until April 29th, the Kindle version is already available on Amazon.com for $11.99. If you can swing it, it is money well spent, I promise.

And Dr. Fasano, if you (or one of your representatives) ever do read my post, thank you for all you’ve done and continue to do for all of us with gluten-related disorders.  We truly appreciate it!

 

10 thoughts on “Dr. Fasano’s Gift of Gluten Freedom

  1. Molly (Sprue Story)

    Thanks for sharing your review of Gluten Freedom! I’ve been waiting for the hardcover to come out and am really excited to read it. Dr. Fasano was one of the presenters at the conference I went to recently and was one of the most charismatic speakers. It sounds like his book has the same energy and passion, which is just as I’d have expected.

    1. Jess Post author

      Hi Molly,
      You’re welcome. Yes, it’s definitely a worthwhile read, and many will be helped by it. I think that Jennifer E’s book should be a good read too, I think it comes out around the same time as Gluten Freedom.
      Hope you’re having a good week!
      Jess

      1. Vik

        I’d like to read it too. Which is saying something, because it’s hard for me to sit down and read these various celiac books. I get scared and overwhelmed with all the details and contradictions. There’s a stack of books that I’ve borrowed from the library that I keep renewing, as I keep procrastinating on reading them.

        1. Jess Post author

          Hi Vik,
          It’s good to hear from you! If you can stomach it (no pun intended), it’s a really worthwhile read for those with celiac disease. Also, yes, I do hope to enter the study, but I am not allowed to directly comment to you under that post because it is sponsored by the FDA. I think that it’s alienated a few of my readers, but I don’t mind, because I believe there is a great need for the research they are doing, and the funds are going to enable me to keep my page going, at least for a while longer :)
          Jess

  2. Joyce

    Thanks Jess. I spent last night pouring over Dr. Fassano’s book. You’re right it’s very good. I was diagnosed with celiac 2 1/2 years ago. Since then two of my three children have been diagnosed and I’m trying to convince my brother to get tested. I hope Dr. Fassano’s work educates the medical community as I live in Toronto and am shocked at how dismissive doctors have been with me. I too have experienced neuropathy and am now grain free (no processed gf food) and am juicing – seems to be helping. Celiac really is a complex disease – it seems to affect all of us in different ways. Thanks for sharing your experiences and expertise. :)

    1. Jess Post author

      Hi Joyce,
      You’re welcome. I hope that you have better luck getting your brother to be tested than I have had getting my siblings to be tested. So far, all 4 have refused testing, even the one who clearly has dermatitis herpetiformis. My mom has it, we are pretty sure that her mom had it, and now my youngest, who just turned 2, reacts horribly to gluten (we are pretty sure she has it).
      There is a lack of awareness throughout the medical community of both the myriad of symptoms of celiac disease, as well as the severity of some patients’ symptoms. Two years ago, when my neuropathy started, I was told by my own GI doc that there was no known association between celiac disease and neurological symptoms.
      I started this blog to try to spread awareness to people in the medical community and to convince my own family members to get tested. The unexpected blessing of all of this is being able to connect with others with celiac and non celiac gluten sensitivity, like you!
      Jess

  3. Bev in Milwaukee

    Fasano: ” I never minimize the feelings of someone who has just realized that his or her life has been changed forever by this restriction on one of the most enjoyable activities of humankind, that is, eating.” He truly “gets it” like I wish other doctors would.”

    While the difficulty of the GFD is usually underestimate, there have been many doctors, probably still are, who believe that a diagnosis of celiac and the stict avoidance of gluten to treat it is actually a worse curse than symptoms incurred without a diagnosis/treatment.

    Too bad there is no way for this group to experience all the varied symptoms gluten causes in those with celiac, and realize that the good health–both physical & mental, gained on a GFD feels better any gluten-containing food tastes! Tolerating or even advising patients to partake in non-compliant GF diet for celiac undermines the true goal of regaining as much of one’s health as is possible!

    1. Jess Post author

      Hi Bev,
      Thanks for sharing your opinion about this. You are 100% correct. I have been involved in 2 physician-only forums online, and the vast majority of physicians who comment on celiac disease believe that the GF diet is too restrictive to patients, and doubt that any of their patients are able to follow it. They are hesitant to diagnose “gluten sensitivity” for the same reason. It is very sad and I actually quit one of the forums because there was so much hostility regarding celiac disease and other intolerances.
      I agree that if any of them took one bite of a food and then felt as crappy as I do for the days and weeks after ingesting gluten, that they’d probably be able to remove that food from their diet for life without any hesitation too.
      I will be in touch by private message soon, I have a question for you about the GI group of docs at Children’s.
      Jess

  4. Peter Olins

    Jess—Glad to hear you enjoyed the book. I am a little puzzled by the claim that 6% of people have non-celiac gluten sensitivity—which seems to be repeated so often on the internet. As you probably know, there has never been an actual survey of the general population. I asked Dr. Fasano about this, and he said that the “6%” number refers to people attending a tertiary care celiac disease clinic—hardly a cross-section of the public!

    1. Jess Post author

      Hi Peter,
      That is really interesting to learn the truth behind the 6%. I wonder what the % would really be if we were able to have a quick, reliable screening test for NCGS and randomly test large numbers of people…based on what I’ve read we’re not quite there yet in terms of a biomarker for NCGS–unless you know of one!
      Thanks for stopping by!
      Jess

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