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Why We Do What We Do

I am often asked by those close to me why I research and talk about gluten so much.  Can’t I just “get over it” and move on with my life?  Why does everything always have to be about gluten?

I received the most heartwarming email the other day from one of my readers who summed it up perfectly as to why we do what we do and she has given me permission to share her email on my blog.  And by “we,” I mean every one of us in the gluten-free community who takes the time to share our personal experiences with others, be it on a blog, Facebook or Twitter, in a support group or over coffee with a friend.  It matters.

Heidi,

I wanted to let you know you literally saved my life.  Your blog is the single reason I figured out my own illness that I battled for 14 years.  Thank you for sharing all your extensive research, knowledge and links to scientific documentation.

My celiac test was negative in 2006 so I never (nor did my very closed minded doctor) expected gluten could be the cause of what appeared to be a 14 year stomach flu (basically every single classic celiac symptom).  My next appointment was with Mayo Clinic in Rochester, MN before I found your blog in November 2010 and realized my blood test could be wrong and/or I could be gluten intolerant.  I immediately put myself on a strict GF diet and by day 2, knew you had found the answer for me!  Although I will never truly know if I am celiac or not as I will never eat gluten again in order to have a biopsy done.  I did get tested through Enterolab and found out that I was positive for gluten and dairy antibodies with genetic DQ 2,1 (subtype 2,6).

When I mean you saved my life you did.  I had severe nausea all day long, but is was the worst in the morning, like morning sickness.  I felt an emptiness in my throat/esophagus (not heartburn), raging hunger, my body felt like it was starving to death but I could only eat a very small amount 6-8 times a day.  I didn’t want to eat because I was so nauseous, but I soon found that if I didn’t eat, I would vomit so I had to force through the nausea to eat in order to prevent that from happening.

I took many trips to the bathroom (6-8 a day) and often during the night.  I had no energy at all, brain fog (which I didn’t realize I had until it lifted a couple days into the gluten-free diet).  Terrible mood, I was crabby for no reason at all other than feeling like I had the stomach flu 24/7.  Mine was slow weight loss, about 35 pounds over the course of 14 years but even with 2 pregnancies, as of November 2010, I was 95 pounds.  Very, very minor psoriasis and virtually no vitamin D or B-12 in my body.

My one “mystery” that no one has been able to give me answers to is my gastroparesis diagnosis.  I have read reports that celiac can cause gastropar and I have NONE of the other issues that cause it.  I have found many people that have both but no hard evidence.  Perhaps a question for Dr. Vikki Petersen?

I finally found a holistic doctor who listened to me and ran lots and lots of tests.  I had basically NO vitamin D in my body and was put on 50,000 IU’ a day to try to get it back up along with Enzymes, probiotics and GI supports.

Almost one year later I have never been this healthy and have helped 3 more people with severe issues find complete resolution of symptoms on a GF diet and directed them to your site.  You are doing great things for the gluten free world!!!!

Warm Regards,
Kristin

And that is why we do what we do. :-D

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Comments

  1. Christy L says:

    Thank you for sharing! Heidi, your site has helped me tremendously, too. My two year old (18 mo then) was diagnosed with Celiac earlier this year. My first question was "what's that?" Followed by "Would you spell that? I need to look it up." I had never heard of it. Now, I spend think and talk about gluten all day long. Your blog helped me get through some of the tough emotional "mommy" stuff and realize I can make it alright for him. He can have lunchables, goldfish crackers and awesome birthday cakes just like the other kids- but without gluten.

    To those who want you to "get over it and move on", they need to take their own advice. Too many out there need to hear your (and all the others) message. Thank you so much for doing what you do! I want to hear it.

  2. Kylie says:

    ..and that is a perfectly good reason to do what you do – thank you!!

  3. Bridget says:

    I know what you mean, as a gluten free mom myself I am constantly listening to people talk about various ailments/issues they are having, and in my mind I battle with myself wondering if I should speak up and say "You know, it COULD be gluten…." But I always have to weigh how open the person might be to hearing that, or if I'll get the "eye roll you think EVERYTHING is caused by gluten" look that is soooo familiar to us all. People don't understand that it IS linked to a lot of things. And it's worth a shot if you are going to feel better. And it's soooo much easier to be gluten free now, and not feel like you are missing much. I was recently at a group for "newbies" to the gluten free lifestyle to speak about our experience (we've been gf 7 years, and it's my son who has Celiac…he's 9) and one man spoke of how he had arthritis so bad he was in a wheelchair and couldn't even raise his arms above his shoulders. Now he's walking without ANY support and is spry as ever. And all he did was go gluten free. It is stories like THIS that make me speak up. Even if I get "the look"…at least I spoke up, and at least I tried to help. It is tough, though, not to appear like one of "those" people who just think it's the answer to everything. I don't, but I do know it's the answer to a lot and it's worth considering. What is truly unfortunate, though, is people would rather "just take a pill" than adjust their diet. Sigh.

  4. Rachael says:

    I love this email! And you bringing up the fact that people give you a hard time with gluten awareness. I have family members to this day who roll their eyes at my gluten intolerance but a gluten free diet could have very well saved my life and especially my toddler who was begin to have "failure to thrive". Both of us came up negative to allergies by a simple blood test (mine was for celiac). I had major digestive issues for years and my son had skin issues, wasn't growing, wasn't eating and had never had a solid bowel movement since he started eating regular food. The fourth day of his gluten and dairy detox he was uncontrollably vomiting mucus from the depths of his stomach and his bowel movements were filled with large amounts of mucus. It was disgusting and disturbing but what I needed to see. These things were literally killing my child. Speak on, sister! You are doing a great job!

  5. Well, I may only be "one," but that is exactly why I "do it" for the dairy-free community too :)

    Wonderful email.

  6. love that email! Love that they took the time to send it to you. & thank you for doing what you do – you were the first gluten-free blogger i read when my daughter was diagnosed (after i was already gluten free) & it really helped me see she would still be able to enjoy treats again (& cleaver ways to give them)

  7. Vicki says:

    Heidi,

    As someone who has celiac, and was undiagnosed for most of my life, I encourage you to keep up the good work and continue to spread the news. Had the internet been what it is today 15 years ago when I was critically ill, I, my daughter and my granddaughters, and my husband would have been spared oh so much pain and suffering. Amazingly, the medical community has still not caught up, making sites like yours all the more important. It took months of searching online way back then to find sites that had info on celiac, and even then it was generally medical journal articles from European countries that I had to sift through with a medical dictionary at hand. Even though I have been gluten-free for over 10 years now, my interest in hearing others stories has not waned. And I find your site and others great at providing the cutting-edge info on celiac, gluten-intolerance and other immune-related ailments.

  8. I have no simple adjectives to describe this post, Heidi. Thank you so much for writing it and sharing Kristin's email! I love that she's seen such phenomenal success with the gluten-free diet and healing her body in other ways, and that she's helping others, too! Honestly, I don't know how any of us can possibly keep quiet and NOT do what we do.

    A member of my support group has gastroparesis, too. She was diagnosed with that a few years before celiac. Her celiac testing was negative at the time. But she looks back and sees all the clues that she had gluten issues despite the negative test results. I know others with celiac and gastroparesis, too. Even if there might not be substantial evidence/studies connecting the two, it certainly makes sense. Put simply, gluten affects our organs (among many other bodily parts, systems, etc.) and the stomach is an organ. We can all tell you that gluten affects each of us differently. Some of us have the big D and the IBS/IBD diagnosis, others have the big C, some get misdiagnosed with Crohn's or have Crohn's in addition to celiac, and so on and so, so why couldn't the effects of celiac and non-celiac gluten issues also cause/contribute to gastroparesis?

    I greatly appreciate the comments here, too. I especially appreciate Bridget's comment on the gentleman with arthritis being able to give up his wheelchair and be normal again. We have someone in our large GIG group who experienced the same thing. She was an invalid in a wheelchair before going gf and now you'd never know she had any issues. Yet diet is almost never mentioned as a possible solution for arthritis/RA and other joint (and muscular) conditions. Anyone who has arthritis or rheumatoid arthritis should be gluten free. (And dairy free, sugar free, and soy free, but that's another discussion.)

    Bravo, Heidi! For all you do and for sharing this post! It only takes one email from someone who has been helped to keep us going. :-)

    xoxoxo,

    Shirley

  9. Donna says:

    I am newly diagnosed this year and I have read many blogs eagerly looking for information to make myself well since I diagnosed myself and find myself in this situation alone. My doctor said she would see me in one year at my regular check-up. This is a challenge. Your blog has taught me so much about medical issues as well as cooking. I loved your page about the testing and elimination diet. I have gone off sugar after listening to the lecture on your site. I feel hope that there is a community out there just like me. Next, I will look into further testing since my bowel is still upset and I have skin eruptions. I hope one day the medical community will provide better care for this serious disorder. Keep talking, please!

  10. Wow! That is so amazing and heartfelt. Living with food allergies and intolerances is painful and very lonely. Sharing our stories and experiences is the best way we can help others. I have so many friends that have had children recently and are in the situation of having to remove foods from their diets and their babies' diets. It can be so frustrating and while I wouldn't wish it on anyone, it is extremely comforting having such a wonderful community! Thank you for sharing this!

  11. I love these heartfelt sentiments from your reader! We are all in this together and you've provided such a service, Heidi. And you've done it through sound research, which is so important. Thank you for all you do and keep up the good work. You're a treasure!

    Melissa

  12. Cocoa says:

    Yay! Yes – thank you for all the work you do! We appreciate you! <3

  13. Ricki says:

    What a beautiful email and heartwarming message. I think this sums up why we all do what we do, whether our focus be gluten, dairy, sugar, or healthy eating in general. Nothing's as great as being able to help oneself–and others–achieve better health! :)

  14. Beautiful message, perfectly stated. This is why we do what we do.

    Thank you for being you, Heidi! xoxo

  15. Lola says:

    Hi Heidi. You have a really informative website here that is helping others. I'm trying to go gluten free b.c I have an autoimmune disorder called Sjogren's.

    I have never been tested for Celiac or gluten sensitivity but I've read cutting gluten from your diet can help with inflammation. There is so much info concerning gluten and allergies, I feel overwhelmed though.

    Do people have to only use gluten free products ( skincare, mouthwash, toothpaste….) to make a progress? Are there people who just cut gluten from diet and get results? I am just curious how to go about make this transition and would love feedback.

  16. You are amazing. Please don't ever stop what you are doing, because it is important, and you are changing people's lives.

  17. Sarah Kuhner says:

    I just ran across your web site while looking for new recipes to try. I had been sick since I was a child and just got diagnosed with Celiac disease 4 months ago. I talk to anyone and everyone who will listen. If I can help someone get a correct diagnosis and start feeling better it is so worth it. I don't rememeber ever feeling really good. Ever. A gluten free diet has changed my life. Every single system of my body now functions so much better. We need to speak out to people that are interested and struggling with illnesses that could be related to gluten.

  18. Gordon Heinrichs says:

    Subject: Blood tests and biopsies seriously flawed

    Hi, I’m new to blogging because I’ve been busy writing my ebook about gluten sensitivity for the last 2 years and haven’t had a lot of spare time. But hooray, it’s finally on Amazon.com, and since this blog's topic is research and new information, here is some from me.

    My laboratory medicine expertise (the focal area for the diagnosis of celiac disease), living with my wife who’s had celiac disease for 35 years, and my healthcare background have allowed me to fill a knowledge gap in the diagnostic process and seriously question the established diagnostic protocols. The following paragraph captures the theme of my ebook, Celiac Disease & Gluten Sensitivity: A Troubled Past but a Promising Future.

    Getting the diagnosis right is not as simple as the experts suggest—blood test and biopsy—because sorting out the post-test information can be as perplexing as this common illness. Does the testing bring clarity—or confusion? You know that you encounter people almost daily who are gluten-sensitive, but don’t know it. To those you meet who are, or should be asking the question, “Am I gluten-sensitive?” you can provide common sense, medically sound advice using the information in this book. Below are some reviews. You can preview large portions of the ebook for free on my blog. Purchase it on Amazon.com.

    Gordon Heinrichs, DC

    celiacfactchecker.wordpress.com

    Praises for Celiac Disease and Gluten Sensitivity: A Troubled Past but a Promising Future

    I can confidently predict that anyone who is interested in thoughtful, objective, and health promoting insights into gluten’s impact on human health will be amazed and intrigued by the offerings of this new ebook. I recommend it, without reservation. It is very well researched and written. I hope it will become the new best seller among books on gluten sensitivity.

    Ron Hoggan Ed. D., British Columbia, Canada

    Co-author of Dangerous Grains: Why Cereal Grains May be Hazardous to Your Health.

    Editor of Journal of Gluten Sensitivity

    As Celiac Disease becomes more prevalent, a greater number of people are struggling with the confusion regarding the diagnosis process. Dr. Heinrichs manages to shed needed light on this confusion by thoroughly explaining the history of diagnostic procedures. Hopefully this book will provide some understanding, and arm readers with the right questions to ask their health providers.

    Cindy Swann, RD, San Diego, CA

    I thank you for the good work you have done and the good that will be derived from the publication of this work.

    L. W. “Buddy” Nichols, Ed. D., support group lead, Virginia

    I thought that you did a good job of explaining the short-comings of the "golden standard" for diagnosing celiac disease and encouraging the patient to become their own advocate when seeking answers about their health.

    San Diego RD

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