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Going Gluten-FreeFebruary 23, 2011

Are You Gluten Sensitive?

A new study validates non-celiac gluten intolerance.

In this study, Australian researchers looked at potential mechanisms behind non-celiac gluten intolerance. They randomly assigned 34 adults with irritable bowel syndrome who were adhering to a gluten-free diet to ease gastrointestinal symptoms to eat a supplement (some contained gluten, some did not). The team determined none of the participants had celiac disease. In this double-blind study, those who consumed the gluten supplement reported a hike in bloating, fatigue and other symptoms within a week. However, there was no surge in antigliadin antibodies, nor were there changes observed in levels of celiac antibodies, C-reactive protein (a marker of inflammation) or intestinal permeability. Researchers also failed to find any connection between symptoms and the presence of the genes identified with celiac thus far (DQ2/DQ8).

Why does this matter? These findings suggest that non-celiac gluten intolerance is real. Yes, many of us knew this already but, gosh darn it, I love it that the research is now confirming it.

So all those people who have celiac-like symptoms but whose test results come back negative and whose endoscopy shows their villi aren’t flattened—listen up. The Gluten Intolerance Group now gives a nod to non-celiac gluten intolerance, that it may be diagnosed after ruling out celiac and noting a positive response to the gluten-free diet.

I wished I’d known this back then.

Comments (13)

My daughter at 2 1/2 had elevated anti-gliadin test. One year later biopsy confirmed she actually did not have celiac. She went back on a regualr diet fr the next two years. During this time she struggled with stomach aches, headaches, and trouble gaining weight. Her most alarming symptom was her behavior. She appeared anxious, erratic, impulsive, and violent. She also was a horrible sleeper, waking up to 4 times a night and having huge fits. We were at our wits end and trying therapists and behavioral evaluations. Mention of possible ADD was brought up as well as mood disorders. We decided to try GF diet, and I anm so happy we did. The first week especially was really rough - like a withdrawl. She actualy had an increase in stoamch aches, headaches, and was complaining she was really tired. Gradully though things are improving. For a child who never her whole life slept through the night, she has done so 4 times in the last two weeks. Her appetitie is improved, and she no longer complains her belly hurts. Overall she is calmer. By no means is she a perfect angel, but at least now when she has a time out she has the ability to calm herslef down. She goes to her room and counts to 60 five times and then comes downstairs ready to behave better. This is compared to 2 weeks ago when we had to carry her into her time out while she bit and kicked, then to hold her door shut while she screamed her head off and ransacked her room. I feel bad that I beleive gluten has bothered her for some time and I wasn't doing anything about it because she didn't have celiac. I am so grateful for these positive changes in my little girl, and I hope this gives other parents out there some hope and some inspiration to try a GF diet!

Posted by: kmino | March 2, 2011 9:30 AM    Report this comment

I too am new to gluten intolerance. My revelation was a result of many doctors with no answer as to why my back and body pain was not getting better. Overall, I do feel much better but I have many other food sensitivities that just make eating more like a decision of flavor versus feeling. I too would like to see more studies on sensitivities.

Posted by: Amanda E | February 26, 2011 8:37 AM    Report this comment

Thank you so very much for sharing this. This is such an important validation for so many people who have suffered and known it's not "just in your head", "stress", or any of the other reasons used by so many doctors.

Posted by: CarolineSK | February 25, 2011 8:20 AM    Report this comment

I just wish I could get my physician to believe me. I've been told to just learn to live with it. Tests are all coming back negative. I'm so frustrated.

Posted by: Rebecca S | February 25, 2011 7:51 AM    Report this comment

I have struggled with all of these symptoms at some time or other in my life. I got to the point that my legs hurt so bad that I could barely walk after a days work. I truly thought I had some terrible disease and wasn't going to make it. I endured upper GI'S lower GI's, blood tests. They could find nothing. Then I got the diagnosis of fibromyalgia. I was devistated. I then learned that this diagnosis is only given when all else is ruled out. There is no real test that shows it. I was put on so many meds I did not know what was going on half of the time. Two weeks prior to having my gull bladder removed even though all my gull bladder tests were negative my friend told me about a doctor that takes a more haulistic approach. I was unsure but figured what did i have to loose. (her reply) your gull bladder. This is what she did for me. She gave me a test called cellular immunology. This is a test typing your blood to 93 different food groups. It tells you what foods that your body will react to. I received my results I was blown away. All of the foods that I grew up on and loved so much was making me feel so terrible. I told her I don't believe it. She said remove these foods from your diet for thirty days then come back here and tell me what you think. I can tell you that was the most diificult thing I have ever done. It was awful, but I did it. Much to my surprise I began to feel better I had more energy, I was sleeping better, my allergies cleared up. No more bloating, stomach pain, swollen and sore joints. It was life changing for me. I currently do not take any medication for any thing and at forty five I played second base on a co-ed softball league this past summer. And I stll have my gull bladder. In my particular case I had reactions to many different foods some more severe than others. But by removing them all I got better results. But I will confess to slipping up once in a while. I call it human nature or momentary loss of will power. My body reminds me about an hour after consuming it. I hope by sharing my story you find hope and please never give up!!!!

Posted by: sparkyjams | February 24, 2011 11:09 PM    Report this comment

Well, I'm a new celiac person. My blood tests showed negative, but the endoscopy and biopsies proved positive. My doctor took me off gluten on Jan 6th and I have not felt this great in over a year. According to my doctor, it takes 2 out of three of the tests to prove celiacs and it looks like he was right. Regardless, no more diarrhea, vomiting, etc. is all worth it.

Posted by: Danny L | February 24, 2011 3:21 PM    Report this comment

Last summer my family was diagnosed GENETICALLY to have non-celiac gluten intolerance through Entero Labs (www.enterolabs.com). Nothing says it more clearly that test results in black and white. From that information we had evidence to inform both my parents, my siblings, my daughters and my in-laws that they all carried the gene. It was news that not everyone wanted to hear, but for those who wanted to be proactive, they have now changed their diets and feel a lot better. With Entero and Cyrex Labs now offering easy, accurate testing, there's no more guesswork or doubt.

Posted by: Sharon G | February 24, 2011 1:10 PM    Report this comment

Seven years ago, four days into Phase 1 of the South Beach diet, my whole life changed. I remember telling my husband that I didn't hurt anymore and the terrible fatigue I had lived with for years had lifted. My husband's response was that my personality had also changed; I wasn't so edgy and impatient about the littlest thing. In five more days, nine days into Phase 1, the mouth sores I had struggled to heal were gone. What was different about this diet that not only was resulting in weight loss, but also reduced the inflammation and swelling in my joints?

We ate well before the diet; low fat, minimal sugar, lots of fresh vegetables, soy shakes and homemade whole wheat breads. I exercised regularly; walking three miles a day and lifted weights three times a week I was also working a full time, high stress government planning director job. And to keep going I was taking up to ten aspirins a day for "energy" to hold the exhaustion at bay.

I had experienced painful joints, extreme fatigue and mouth sores since childhood. I remember our Country Doctor telling my mother more than fifty years ago that the sores in the corners of my mouth were because of a vitamin deficiency. I heard that same diagnosis from many Doctors and Dentist through the years and took different vitamins to try and cure the problem. I was very active in cheerleading while in high school, however the tiredness would send me to bed sometimes for days to just sleep.

In my twenty's I was diagnosed with rheumatoid arthritis and put on heavy medication. The joint pain and inflammation was systemic; every joint in my body hurt. I stopped the medication when I discovered the possibilities of liver damage and went to a Rheumatologist at the University of Maryland Hospital for a complete evaluation. I had no joint damage even with the inflammation and swelling. The diagnosis was that "there are some family's that have rheumatic types of disease". Over the next thirty years I visited different Doctors with the same lack of a diagnosis and continued to live on aspirin for "energy" which according to the Rheumatologist reduced the inflammation.

At different times I also saw Dermatologists for skin rashes, postulant psoriasis on my hands and feet and psoriasis in my hair. They didn't know what caused the problem or why it sometimes just went away. Probably the result of my on again off again struggle to loose weight and my stopping eating the bread and pasta which were a mainstay in my diet.

My daughter has been diagnosed a celiac, but also has never had a biopsy. An alert Doctor recognized the psoriasis covering half her face, her head, elbows and knees as an autoimmune disease. A blood test confirmed the diagnosis. She also has struggled with attention deficit and painful joints since childhood. Her rash, joint pain and attention deficit went away with the removal of gluten from her diet. A nephew's diagnosis, while difficult to remain gluten free, has cleared his skin rash, bloating and joint problems. I remember an Aunt also suffered with extreme fatigue, skin rashes, bloating and systemic joint pain. My maternal Grandmother died when I was quite small from intestinal cancer.

Posted by: kmconaway | February 24, 2011 11:32 AM    Report this comment

I am a gluten sensitive person and it not because of celiac., but because of Migraines. There is a huge number of people who can not tolerate gluten because of Migraine . I wish this was discussed more along with the celiac issues. Linda S.

Posted by: Unknown | February 24, 2011 10:38 AM    Report this comment

I have just read the book Celiac Disease, a Hidden Epidemic, and learned that the small intestine has 3 parts: the duodenum, jejunum, and ileum. The ileum makes up for any damage to the duodenum and ileum, absorbing nutrients (except iron). So, for those of us who do not have the diarrhea and intestinal symptoms, MAYBE the damage has not gone down far enough, AND we test negative when in fact we do have a gluten intolerance. I think for ANY and ALL illnesses, gluten can be a factor and/or cause. Nothing is more important to our body than what we eat/drink.

Western medicine has this need to group symptoms into a "diagnosis" and research the crap out of it first for it to be valid. I have given up the need to call it Celiac or not or to do further testing. I have struggled for the last 5 years with this since 2 tests were negative, except for anti-gliadin antibodies. After yo-yoing on a gf diet I have really done some damage I'm trying to fix.

My final answer for me: Gluten is not digestible to humans. People handle toxic foods differently. Our world would be much healthier without gluten in the food supply. Pizza, french toast, bagels, cakes...can still be part of life, if you so choose, but made of healthier flours.

It is hard trying to get regular docs, friends, and family to believe it's not "all in your head" but you need to stand your ground and heal your own body. "Research" one day will validate non-celiac gluten intolerance for good but don't wait till then!

Posted by: Jeannie A G | February 24, 2011 9:48 AM    Report this comment

I just recently received the test results that my gluten intolerance is not celiac. I have only been gluten-free for about a month, but already things are feeling much better!

Posted by: Amber K | February 24, 2011 9:37 AM    Report this comment

I too am a celiac negative (confirmed by endoscopic biopsy) gluten sensitive individual. I cannot begin to express the difference in my life since going gluten-free 4 years ago. No more bloating, no more stomach upset, no more fatigue and brain fog! It is nice to have scientific confirmation of what I and my integrative medicine physician already figured out! I am so grateful for the recent explosion in more nutritious gluten free products which has also begun to decrease the cost. Even gluten free recipes are showing up in everyday publications not devoted to food allergies. Thanks for all the great info. Montie V.

Posted by: Unknown | February 24, 2011 9:23 AM    Report this comment

I am a celiac negative gluten sensitive person.....life changing since going gluten free. As a medical provider it is high on my list of supspicion when my my patients have unexplained symtoms. Many who do a gluten free trial are thrilled and never return to eating it. Of course I screen for celiac and the many screen only a small percent are celiac by lab values.

Cyrex Labs now has a gluten sensitivity saliva test...check to see if its available in your state. It's not in mine (NY) yet.

Posted by: Catherine D | February 24, 2011 8:40 AM    Report this comment

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