Gluten Sensitivity, Research

Gluten Sensitivity Is Real

18 Comments 29 September 2009

So, it turns out the "gold standard" biopsy isn't always so golden. Maybe we should rename it the "old standard"?

This is very good news for people that couldn't get a definitive diagnosis of celiac disease, but knew that gluten made them sick. Yes, back in the day you had to just trust your gut. [Sorry, but I couldn't resist.]

Also, this might make you think twice about cheating on the diet, even if you are "only" gluten sensitive.

Read the article:

MORTALITY IN CELIAC DISEASE, INTESTINAL INFLAMMATION, AND GLUTEN SENSITIVITY
Peter H. R. Green
JAMA. 2009;302(11):1225-1226 (doi:10.1001/jama.2009.1366)

Interesting that only an estimated 5% of cases of celiac disease have been diagnosed in the US. 

My favorite part of this study was the last paragraph:

"Until recently, gluten sensitivity has received little attention in the traditional medical literature, although there is increasing evidence for its presence in patients with vari-
ous neurological disorders and psychiatric problems. The study by Ludvigsson and colleagues reinforces the importance of celiac disease as a diagnosis that should be sought by physicians. It also suggests that more attention should be given to the lesser degrees of intestinal inflammation and gluten sensitivity.

Another interesting point was that the incidence of celiac disease has increased 4 times in the last 50 years. This was concluded from stored serum samples, not from just the increase in current diagnosis.

I also liked this paragraph:

"Accompanying this increase in disease prevalence is a change in the clinical manifestations, so that the classic presentation of diarrhea and malabsorption syndrome is now less common than other presentations.The disease now manifests more often as a multisystem disorder. Anemia, osteoporosis, peripheral neuropathy or ataxia, irritable bowel syndrome, and dyspepsia are all possible presentations. Many patients are asymptomatic, with the disease detected by screening performed because of their presence in a high risk group such as being a family member or having an associated autoimmune disease, type 1 diabetes, or Down syndrome. Increasingly, those with autoimmune thyroid disease are also screened." [bold type added by me.]

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18 Comments so far

  1. 1
     

    Adding fuel to my fire for my mom to get tested. I’m sure many of us deal with family members who show symptoms of celiac or gluten sensitivity but for whatever reason choose to ignore it. Hopefully this will help us to raise awareness just a bit more….

  2. 2
     
    Theresa says:

    Thanks so much for posting that!!!
    I went for my biopsy a few months ago and was shocked to find out that I don’t have celiacs. I’ve got a sister with it and I also have an autoimmune thyroid disease. Ever since getting the biopsy results I’ve been wondering why I get sick when I eat gluten, I mean, could it be explained? No one has the answers and I find that really worrying.
    This study is really encouraging, it’s so hard to explain that I’m ‘only’ [huh!] gluten sensitive. I’m living G-free though, Yay for health!!!

  3. 3
     
    Melanie says:

    I have fructose malabsorption and recently finished a study involving people who follow a gluten free diet (for various reasons) but aren’t coeliac. I know that my illness means I can in fact eat gluten (it’s just wheat that’s the problem) but I met lots of people through the study who all seem to react to gluten and yet have a negative blood test. It’s definitely real, there’s just not much known about it. They’re continuing the study next year so maybe we’ll find something out!

  4. 4
     
    CeliacChick says:

    Yes! My family is all in denial. “We are so proud of you Kelly, and think you are amazing, the way you have adapted to this diet…blah blah blah” and then when I mention my mom at the very least try a gluten-free diet for her myriad health problems she becomes silent. “I just CAN’T do it right now.” [tears]

  5. 5
     
    CeliacChick says:

    Phew! Yes, this sensitivity proof will hopefully help a lot of people. I’m glad you listened to your gut! ;) BTW, I’ve met several people now with testimonials about how the gluten-free diet helped their thyroid issues. Some (with their Dr. monitoring ) have been able to lower their meds and/or end of completely off of them! Again, this is just from personal experiences shared with me. I’m not a Dr. and wouldn’t want you to do anything against a Dr.’s wishes. Just an FYI interesting thing to ponder/research.

  6. 6
     
    CeliacChick says:

    Melanie, were you one of the people studying this topic or were you being studied? I’d love more info or contact info for those studying this. Very interesting. Thx.

  7. 7
     
    Denise says:

    I love this article ! Some many people in my life have gluten sensitivity and are in deep denial !One can live without bread and processed food. Gluten is the devil in my mind and we should all be gluten free. Being gluten free has changed my life in so many ways.

  8. 8
     
    Diane Hewitt says:

    Is there still a group in NYC that meets for monthly
    gluten free restaurant gatherings? Thank you.

  9. 9
     
    Teresa says:

    Yes, my mom as well will not listen to me. I believe she has full blown Celiac disease, but of course I’m not sure as I’m not a health professional. That is exactly the problem, she won’t listen to me because I’m _not_ a physician. She is of a generation that only listens to doctors and her doctor most specifically.
    It “kills” me to see her continue to suffer when she could get some relieve if she would just stop eating gluten. :-(
    I was diagnosed with gluten sensitivity and have told her how much better I feel since going gluten free.

  10. 10
     
    Beth says:

    thanks for bringing more awareness to the subject!

  11. 11
     
    antmaryc@optonline.net says:

    Dear Chick, Thanks for sending the article from the NY Times. And this was on the Science Page? Quite the ‘filler’. It truly doesn’t even scratch the surface.

    I found out that I have Celiac (I’m 63) by having a follow up endoscopy after removal of a adenocarcinoma of the small bowel. A very rare cancer and mine was found at Stage II, with no other involvement. While I was researching this cancer, celiac kept popping up on data that I read, but no definite conclusions. I just past 6 months, cancer free and am committed to gluten free living.

    Anyone else have any cancer connection?

    Mary

  12. 12
     

    Kelly,
    Gluten sensitivity is greatly under suspect as the cause of my auto-immune disease (limited scleroderma w/CREST syndrome . . . we think). You may want to read “Dangerous Grains” by James Braly, MD,and Ron Hoggan,MA. If I understand the book correctly, this is what occurs: Protein in gluten is destructive to human tissue and the upper intestine. it will cause a condition known as leaky gut syndrome. The undigested gluten protein will leak into the bloodstream where white blood cells will attack it as a foreign invader. Our amazing immune system then creates memory cells in case this invader returns so that it can quickly take action again. Evidently, protein molecules look very similar whether animal or vegetable. At this point auto-immune problems occur as our white blood cells mistakenly confuse the proteins in our body’s tissue with the gluten protein and begin to attack the tissues in our bodies.
    I recommend the book.
    Alice

  13. 13
     
    Jessie says:

    Wow, this article cleared up a lot of confusion for me. I was recently diagnosed with IBS and told I likely have gluten/dairy sensitivities, but the doctor’s weren’t too clear on the best ways to go about reforming my diet or why these foods (particularly gluten) could be the cause.
    In the last few years I’ve suffered with anemic bouts, but never had any answers as to why. It always seemed to come and go and when I was tested, they always said I was “fine.” A little low, but everything was on the rise so I couldn’t be anemic.
    Who knew the food I was eating could be what was making me sick? Thanks!

  14. 14
     
    Jacqueline says:

    Had the blood test maybe 15 years ago, it came back negative. Still sick, IBS, fibromyalgia, osteoporosis, 87 pounds at my thinnest, gastroenterologist accused me of anorexia & bulimia. Four years ago had the genetic blood test. I have both markers. I believe if I had been diagnosed years earlier I would be healthier now. Listen to your gut!

  15. 15
     
    Mary Beth Wood says:

    My husband has been very sick for YEARS. We finally found out he has celiac disease in July 2011. He has gained almost 20 lbs, looks and acts like a new man, more energy and is not a grouch. He is getting ready for a 3 day trip (I’m not going). This is the first since he was diagnosed. How does he handle eating out. I know there will not be gluten free menus. He will be able to take his own b-fast. Any suggestions on how to handle this first time experience. I also worry about cross contamination. Thanks

  16. 16
     
    Marcia Stickley says:

    Hi How does one find walnuts and almonds that are not process with wheat. Really miss them.

  17. 17
     
    Tracey Abbott says:

    Dear Mary,
    We are just taking our first holiday since my 2 children aged 7 and 10 were diagnosed. (I also think I have it but the tests keep showing negative). I have contacted the hotels we are staying at and they will try to help, if we take the following: GF cereals, GF soya sauce, GF bread and GF pasta. They can then make up a sauce from vegetables to have with plain rice, rice noodles or our GF pasta. I am still nervous but if the restaurant doesn’t seem to understand, we will just survive off of our own bread and snacks for a week!

    Good luck.
    Tracey


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Thanks for stopping by! I'm Kelly Courson and this is where I've shared my gluten-free finds since 2003. The world has been my gluten-free oyster for 14 years now and I love sharing what I've learned in order to help others adapt to a gluten-free diet. Have a look around and feel free to leave a comment. Connecting with people like you is what has kept me going this long! Seriously.
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