The majority of people are self-diagnosing their gluten sensitivity. Is this valid? Are people over-diagnosing their problems with gluten? Is there such a thing as gluten sensitivity apart from celiac disease?
For a long time, most experts would say that you shouldn’t start a gluten-free diet without a confirmed celiac diagnosis because gluten was only an issue in those cases. Observant clinicians have disagreed and finally in 2011, a great study was published by some big names in the gluten field, showing that gluten-related disorders come in at least two forms: celiac disease and gluten sensitivity. (Search Gluten and BMC Med. 2011 Mar 9;9:23.)
To better understand the diagnosis problem, a short history is helpful. The first writings about the intestinal problems, related to diet, were in the first century A.D. The specific cause was unknown until the 1940’s, when gluten was finally identified. In 1980 it was generally accepted that about 1:5000 people had celiac disease. By 2003 that number had changed to 1:110, based on blood tests that are known to correlate well with positive intestinal biopsies. At that time most experts considered celiac disease to be the only form of gluten sensitivity.
In 1998 a neurologist in England, M. Hadjivassiliou, began publishing studies about gluten sensitivity and the neurological implications. By 2002 or so, he departed from talking about celiac disease and began to reference certain types of brain disorders that he could identify with imaging studies. He would do imaging studies on people who had problems like migraine headaches, identify the brain lesions, put people on a gluten-free diet for about a year, and then redo the imaging studies. He found that about 7 in 8 people had a reversal of the brain lesions, along with a resolution of symptoms.
So now we have excellent and varied scientific information about gluten sensitivity that supports what many of you have known all along, that is you don’t have to have a celiac diagnosis to suffer adverse effects from dietary gluten and therefore, you will greatly benefit from a gluten-free diet, too. If you are gluten sensitive and continue to eat gluten, you are subject to a wide range of autoimmune and other disorders that increase your risk of death at every age, from whatever people die from, will be the same as a celiac patient.
At OVitaminPro.com we recommend clinical lab testing to learn if you are a candidate for a gluten-free diet. Which tests we run depend on the clinical presentation and your budget. You can read more about this on our web site’s gluten resource page.
What’s different about non-celiac gluten sensitivity according the previously mentioned study?
| Celiac Disease | Non-Celiac Gluten Sensitivity | |
| Intestinal Permeability | Increased | Normal or Decreased |
| IL-6 and IL-21 | Increased | Normal or Decreased |
| TLR-2 | Normal | Increased |
| FOX3P | Normal | Decreased |
Those last three rows are cytokines that the immune system uses for communication and are good indicators of certain types of disorders. Watch for subsequent articles on the latest in diagnostic techniques.
Thanks for this…it was very helpful. I especially liked the resources for testing.
Brain lesions…doesn’t sound good. Thanks for this great article.
I don’t agree with the testing. If a person is VERY SICK and tried all avenues, then there is no harm in seeing how they feel on a gluten free diet. One of my friends had lost 1/2 of her hair, had 4 miscarriages and was very very ill. They tested her for Celiac and they said, “ALL IS OKAY…you don’t have a problem.” She was desperate and went on the GF diet and less than two years later, her hair is back, she’s lost 40 pounds, and is no longer sick. I went GF after being ill for over ten years and almost bedridden. I no longer have asthma, stomach issues, migraines, intestinal distress, depression or hives. Do I want testing? WHY? All they can do is say “go off gluten.” Two of my three children are also GF. Most people DO NOT want to go GF…food means more to them than their health.
I was told 3 times that I had a gluten sensitivity. I think it shows up differently in different people. I haven’t been tested for Celiac since I don’t get the gut pain. What is noticably different since eliminating wheat has been a significant reduction in issues with dryness, blinking and twitchy eyes. For me, moderation is the key, taking it out of my every day diet, but allowing a splurge every few weeks on a pastry or good bread.
Gluten sensitivity is a real problem. My husband started suffering from anxiety, depression, weight gain & fatigue. It took about a year to figure out that it was a gluten sensitivity. Over that year of gluten exposure, he developed leaky gut and intestinal inflammation. Once he was diagnosed with a gluten intolerance it took about 6 months to decrease the inflammation. He also developed dairy and other cross reactive food allergies. But now, two years later, he is gluten and dairy free and feels so much better. Test yourself! The sooner you catch a gluten intolerance, the better!
I was diagnosed with Hashimoto’s thyroiditis in December and this condition is worsened by eating gluten. I’ve also noticed since I stopped eating gluten that my carpal tunnel symptom have lessened considerably.
It’s about time. I was diagnosed by a non traditional healer about 15 yrs ago, long before most anyone knew about gluten sensitivity/intolerance and celiac’s. I was so very sick at the time I wish I had been more serious about it and quit absolutely instead of just mostly quitting like I did. I finally have gotten serious in the last 3yrs and gotten every bit of gluten out of my diet and what a difference it’s made. It’s so hard to understand how sick you are when you don’t know what ‘good’ feels like.
After learning about how much gluten impacts the nervous system and bogs down the functionality of the brain, I began eating gluten free. I noticed that my thinking was more clear, there were less um.. um… moments. The back of my neck started to feel better and my gut seemed to be doing much better. I have not had a sensitivity test taken yet, but it’s on my list of things I’m saving for!
Fourteen years ago I watched a medical documentary; a schizophrenic was filmed before and after eating a piece of toast. Her dramatic, shift to negative behavior has stayed with me forever. It was very scary. I’d suffered depression on and off for many years, but it wasn’t until I was diagnosed with Hoshimoto’s thyroid disease I understood what might have happened to my mother. She became mentally ill with the onset of menopause, as well as a mistreated goiter/thyroid condition. She literally “went nuts” almost overnight, refused any further medical assistance and eventually died at age 69 of congestive heart failure.
Up until recently, I’ve always been afraid I might “go nuts” like Mom. Over the past seven years, three endocrinologist failed to get my meds to work consistently because they were mostly concerned with my TSH scores. We kept adjusting my meds, but I had mood swings, foggy thinking and felt really lousy. Finally I heard about and read Dr. Kharrazian’s book on autoimmune disease and the gluten connection. A year and five months ago I finally got tested and found I was indeed gluten sensitive. I’ve been gluten free for that long, plus I eliminated corn and oats (all, even so-called gluten free oats) free for the past year. Along with supplements suggested by Mary at oVitaminPro, my mood swings have stabilized, my aches and pains subsided, foggy thinking has improved, post nasal drip is gone, scratchy throat is gone. I’m feeling more at peace and “in my body”. My gut is still healing (as these things take time), but for the most part I’m much, much better, and no longer fear mental illness. I’m better off without gluten.
non-celiac gluten sensitivity is much more difficult to discover than the celiac one.
many tests for gluten sensitivity are deemed “not reliable” by some doctors, and the once generally accepted as reliable generate”positive” test results only in advanced stages of the disease, so patients should not wait until that test appears positive…
probably “trial and error” works best, just trying the gluten free diet and self-asses how you feel before and after at least 6months-1year…
I’ve been dealing with sinusitis for years. I knew I had wheat sensitivity but didn’t think I was gluten sensitive. After being off gluten just a short time, I started being able to breathe through my nose again. Now I’m paying attention to this stuff.
I went to doctors for over three years with headaches, weight gain, muscle pains and and some other issues. Over 10,000 dollars later they told me I couldn’t possibly be having the pains I was having and it was depression. I went to a physical therapist who told me that I had scar tissue, and when she couldn’t help me anymore I went to a chiro doc. He did a blood test and a lot of levels were off. He said I was gluten intolerant and I went on a VERY strict diet. My muscles aren’t hurting as bad, and I have lost almost 60 pounds, but I still have brain fog. I cannot have grains, dairy, sugar, soy, hemp, ginger, and a few other things. I would like to read the book mentioned by Alberta. Im not perfectly healed, but I am a lot better!!!
I read the same book after a naturopathic doctor told me that I was gluten-sensitive (not celiac disease). (I have a couple of auto-immune disorders, one being Hashimoto’s Thyroiditis.)
I have noticed that on a gluten-free diet, I do not have as achy hip joints and seem to feel a little more energetic, less lethargic. I still take synthroid medicine but in addition to being gluten-free, I supplement with Adaptocrine and OxiCell.
For the most part, I have only been gluten free since October (and although I really try, not totally perfect).
Went gf two years ago due to testing and diagnosis of sensitivity. Love being gf. My stomach doesn’t hurt. Allergies disappeared. And love Mary at OVitaminPro and the way she gets my order to me so quickly! Thanks for this article and thanks for all your gluten help!
I was diagnosed with hashimoto’s thyroiditis last August and was told to go on a gluten-free diet. I doubted the connection at the time, but after about 6 months of eating gluten-free I began to feel better and my thyroid panels began to look better. There really is a connection. I fervently hope more autoimmune patients find this answer.
Dana, I have Hashimotos too, and because of my gluten-free diet I have no need of any thyroid medication.
Thank you Alberta for you thoughtful comments.
You are very welcome Nancy and thanks for your comments!
Thank you Janice for your comments. Yes being gluten-free can make all the difference with Hashimotos! Continue to stay gluten-free and you will see so many benefits to your health. Just a little bit of gluten, the size of a communion wafer for example can contaminate you for months. Be diligent, it pays off!
Thank you for your comment Starla. We do have Dr. Kharrazian’s book for sale on our web site. I have taken many of his seminars over the last 10 years and he is a wealth of information. You might benefit from some of his formulas for gut repair, like Repairvite for example. Please feel free to contact us at anytime with questions.
Thank you for your comment Miriam! My husband suffered from the same thing and is much improved with a gluten-free diet as well.
Thanks Gayle! That is why Dr. Dan says a yes is yes and a no is maybe on any lab work for gluten. Some people can feel no better going gluten-free but can still benefit from it, because many diseases that are triggered by gluten don’t suddenly appear, such as osteoporosis and rheumatoid arthritis. My point is you can’t always tell immediately the benefits of a gluten-free diet.
Thanks Darci! Isn’t that the truth!
Yay! Libby! That is great news.
Thanks Robyn, yes test. So important!
Jk, thanks for commenting! But when it comes to moderation gluten is not something you can have occasionally or splurge on. Just a little bit can keep you from being healthy. And like I stated previously, there are silent gluten issues that take years to present themselves!
Nanci, so many good points in your post! I say go off gluten regardless of what a test says. Sometimes you can see the difference right away and sometimes it takes years!
Thanks Peggy!
Thanks Joanne!
My wife’s doctor took her off gluten as she did test sensitivity toward it but did not run the celiac gluten test, Being off gluten has begun to help her.
I’ve been gluten-free since January. No test needed – I feel so much better, had no colds or sinus infections this winter. It’s easy once you make the commitment to it. Breads and pastries used to tempt me, but all it took was one bite of birthday cake to remind me how sick gluten was making me. Romaine lettuce is my go-to “bread” – tasty and much healthier than processed GF breads. I also started losing weight – something I had been trying unsuccessfully for years to do. Bonus: My husband, who is diabetic, went GF with me and has lost 10# and reduced his need for insulin. Win-win!
Good info to have! Thanks!
I began eating gluten-free after almost years of gastric misery with no resolution. When I read about my O blood type tendencies and saw how close they fit I tried to follow mr. d’amo’s suggestions. the difference was an amazing amount of pain relief! I’ve been gluten-free for over 7 years and doing well. sprouted grain breads have helped me enjoy the real-bread taste and I use gluten free flours for all baking. so call me self-diagnosed if you will, but I was very persnickety about watching for what I ate before I finally admitted my gluten sensitivity.
I think the article nails the issue with regard to the brain lesions. It is interesting to note that I definitely am able to think more clearly when I am not on vacation or several days having to eat a small amount of gluten.
Val, thanks for sharing! My husband really notices the brain fog when we are on vacation as well. It is hard not to get cross contamination, no matter how hard you try!
Thanks for sharing Ellen! I have seen diabetes improve in all my clients on a gluten free diet!
Thanks Howard! I hope your wife continues to improve!
It’s been a 2 year journey for me of going GF. I thank God for the patience and expertise in OVitaminpro staff. They were with me along the way. The cool thing is, I didn’t talk with people who had not walked in my shoes, and told me to do things that they themselves didn’t believe in and DO THEMSELVES! I haven’t totally arrived, but when I look back how I felt 2 years ago with the brain fog so thick I felt like I was poisoned when I look back. Plus I couldn’t absorb nutrients which led to more anemia and the list goes on. Stomach issues improved very much…and the kicker to this is my husband, who supported me along the journey by doing this himself, now has normal Cholesterol and Triglycerides! Nothing else changed. What a difference food can make in ones life. Yet the know it alls will brainwash America that one has to have grains, and whole wheat bread is the best. Let’s have coffee to talk THAT one over! I am thankful, yes, very thankful!
Brain lesions? Isn’t that MS? Thaks for the info. I have hashimoto’s and need all the help I can get. Thanks!
Yes, it can be MS and there is certainly a link between MS and gluten intolerance. But brain lesions can be many things and is never good! Thanks for your comment Renee!
Just stop eating gluten for 3 weeks and then eat it again. That’s the only way to tell if you have a sensitivity. And who cares if you have Celiac or not. The treatment is the same either way, and if not eating something makes you feel better, then wouldn’t you do it?
Good point Jill! But also consider someone like myself that didn’t have much of a positive reaction after I quit gluten, I actually felt worse for about a month. And some people feel nothing but they may have something silent going on like osteoporosis which is linked to gluten intolerance!
I had a thyroid test that showed I have an autoimmune thyroid disorder. My doctor said gluten intolerance usually goes along with it. My migraines have greatly improved since I went gluten free.
Debbie, your doctor sounds like a smart cookie! He is absolutely right!
1 month ago I couldn’t walk to kitchen and back without feeling as though I ran a 10K. I hurt so bad and would tell my doctor’s over and over it was deep pain almost like my bones were causing it. I averaged least falling once a week and just plain tired and didn’t sleep but few hours a night no matter what I tried. I have been tested for many things,positive for thyroid antibodies,and PCOD that being said I have yet found a doctor to help with all my symptoms,one doctor would put me on thyroid medication then take me off..I was so sick. Weight gain..lots of it,dry skin,hair loss etc. I had to have gallbladder removed year ago not for gallstones but infection..surgeon said my small intestines were flat..not dead tissue but hoping it was caused by the swelling of gallbladder..havent been back to doctor since due to no insurance and self pay. I started gluten free little over a month ago and I can say I haven’t fallen once in that time, I can walk further each week, I’m not pain free but not crying myself to sleep is a huge difference. I ate a chip at a restaurant couple weeks ago..by the time I got home 20 min later had rash on chest. Last night ate at restaurant and got horrible stomach aches and got sick before we left the restaurant..even was hurting before we got home in my joints. Not sure if I have anything as far as gluten intolerance or celiac but it has helped me in so many ways..even small amount of weight loss.
Hi Anita! Thanks for sharing. There are so many diseases linked to gluten. Finally people are recognizing you don’t have to have celiac to get sick from gluten. Eating out is always a challenge. There is always cross contamination, even when you are careful. Keep up the good work and do the best you can!
Going gluten free reduced my myofascial pain by about 60%….if only I’d been counseled to do that in my 20s. I’m intrigued by its affect on the brain.