The Verdict is in: Non-Celiac Gluten Sensitivity?
Well … the verdict is in. My endoscopy came back negative. I must admit I was a bit torn by the results. On the one hand, I was a bit relieved to find that I do not have celiac disease. A gluten-free diet is a difficult diet to maintain, and it has nutritional deficiencies as well. On the other hand, now I don’t have anything to account for my symptoms. If I don’t have celiac disease why have I developed IBS and lactose intolerance in the last six months? The doctor admitted that he did not know the answer to that question so I suppose he will adopt the old fall back position: stress.
And then I started thinking about some of your comments on my blog. Maybe, as some of you suggested, I don’t have celiac disease, but I do have a gluten sensitivity. So I did a Google search for gluten sensitivity and I was shocked at what I found. Celiac disease only accounts for a small percentage of gluten sensitive individuals and yet there was very little information about gluten sensitivity in general. Many websites simply equate the two despite the fact that celiac disease is simply one type of gluten sensitivity. Granted, celiac disease is the most extreme type in terms of symptoms and clinical manifestations, but while 1 in 133 people are thought to have celiac disease, 1 in 7 are thought to have a non-celiac gluten sensitivity! Someone with non-celiac gluten sensitivity will test negative or inconclusive to celiac disease, but they will find that they are affected by gluten in similar ways to a celiac; they also experience gastrointestinal symptoms, headaches, depression, weight loss, and nutritional deficiencies.
In a wonderful article, Dr. Scot Lewey (a gastroenterologist who’s wife is a celiac and who personally suffers fron non-celiac gluten sensitivity) explains that non-celiac gluten sensitivity is very real. He has treated countless numbers of patients that have responded dramatically to a gluten-free diet. What’s more he himself suffered from IBS and lactose intolerance which improved greatly with the gluten-free diet. Here is the link to the article: http://www.celiac.com/articles/1101/1/Gluten-Sensitivity-A-Gastroenterologists-Personal-Journey-Down-the-Gluten-Rabbit-Hole-by-Dr-Scot-Lewey/Page1.html. Dr. Lewey criticized doctors who see negative results to celiac tests and instruct their patients that it is okay to eat gluten. Gluten sensitivities outside of celiac disease are quite common and should not be ignored because the medical community does not know enough about it.
So I plan to join my daughter Amy at the gluten-free table for a while to see if my IBS and lactose intolerance disappear with every spoonful of rice flour. And I think the voice of non-celiac gluten sensitivity needs to be heard a bit more often.
40 Responsesto “The Verdict is in: Non-Celiac Gluten Sensitivity?”
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Great post! I am non-celiac but have a gluten sensitivity. I also found I was sensitive to other foods, as well. So, if your new gluten-free diet does not bring exactly the desired results you might want to try the elimination diet to find out what foods are not good for you. Or, you could be tested for food sensitivities (not to be confused with allergy tests). Google ALCAT and Enterolab for more information. Good luck to you!
I too am a non-celiac with gluten sensitivity. When I first came to that conclusion about 3 years ago, I hated to admit it to people because I felt like they thought I was just making it up to get attention and be a picky eater. As the years have gone by, I hear about more and more people who have the same food intolerances that I do. I truly believe it is MUCH more common than people realize!
Dr. Scot Lewey uses LEAP testing for food sensitivities. It was invented & patented by the same immunologist that invented ALCAT, but the technology is newer and more accurate than ALCAT. The LEAP program trains dietitians to administer the LEAP program to get optimum results. I am one of those dietitians and have seen fantastic results identifying and treating food sensitivities using LEAP testing.
Susan Linke
Certified LEAP Therapist
P.S. on my comment above… the website for LEAP is http://www.nowleap.com or you can call their office at 561-848-7111 for more information. I can also send you some sample LEAP results so you can see what they look like and what foods are tested, and tell you a little bit about what to do with those results once you get them, for optimum outcomes. My email is info@susanlinke.com
Jen,
Plese call me at 630-628-9126 I can return your call on my unlimited line if you like.
This is very important.
There is another way to view the gluten syndrome that is supported by well researched and published science and it is even beyond the perspectives you mentioned in this morning’s blog. And it is serious stuff.
It is much much easier to explain on the phone. I am available until 3 pm central standard time and then after about 8 pm cst.
My email is info@theglutensyndrome.net or the email above. They are boththe same box.
Olive
I would be very interested in what Olive has to say about this topic.
Janice
Please show the studies showing 1 in 7 have gluten sensitivity. Unless I’m misreading, it’s not in the article you linked to. All I see there is guy guessing but showing no proof.
Welcome to the GF life. Non-celiac gluten sensitivity(NCGS) is very real and as serious as CD. I agree with Nancy that you may have to look out for more than just gluten. I found I had to eliminate yeast and some other foods. In fact, I feel my best if I stay away from all grains.
The voice of the NCGS community is getting louder thanks to the internet.
I hope you are on the road to better health.
Congratulations! Though as serious in the symptoms my understanding is that non-celiac gluten sensitivity (or just gluten sensitivity since Celiac is auto immune, right?) doesn’t have all the long term damage to your body (masabsorption and its evil cousins.)
I do believe that after a time, if your body feels better, you can try small amounts until you can’t tolerate it. I’ve also read that people with gluten sensitivity can eliminate the big culprit – wheat – and see significant progress. They don’t always have to worry about the small things: malet barley, for example.
You’ll figure out what your body needs but congratulations! This is a much better diagnosis.
A couple of things: First, the gluten free diet does NOT have nutritional deficiencies. A lot of the GF packaged foods are junk foods, but this is true of many packaged foods. There is one study that showed that the GF diet (as followed by random people for a few weeks) is low in polysaccharides. Polysaccharides feed good bacteria. But again, this is the fault of the typical low-poly diet, whether it is gluten-free or not.
Second: non-celiac gluten intolerance IS very serious, and it’s been studied a lot. Celiac is one autoimmune disease gluten can cause: but there are lots of others it causes, and a lot of them are incurable once you get them. Yeah, 1 out of 7 is ridiculous, why doesn’t the word get out more? Esp. since some researchers thing the number is rather higher.
Third: if you want to cure IBS, the simple fix is konjac. Actually you should take it even if the GF diet works. It feeds those good bacteria the polysaccharides that Americans typically don’t get. Works miracles! I take about 1/4 tsp. with a meal.
I just wish these tests were 100% accurate! It always amazes me how over-confident some of the doctors are when they state with absolute accuracy “you do not have Celiac.” Considering how many feet of small intestine there is, how can they be so sure they just happened to luck into the exact place where there is villi blunting? They can;t see it, it is a microsocpic diagnosis. And some doctors only take 1 to a few samples. Also, the blood/gene tests aren’t 100% either as they are beginning to realize that there are more markers than are currently being tested for. So, if you ar GI…you need to stay off gluten too…until they can really diagnose with 100% accuracy.
I, too, am a non-celiac gluten sensitive. I diagnosed myself through a food allergy test administered by a naturopathic nutritionist. I used to cheat and allow myself tiny bits of wheat. I never worried about small bits of gluten in food. BIG MISTAKE! My intolerance became worse and my reactions increased drastically. I no longer cheat with wheat and it is killing me! I should have gone 100% wheat free from the beginning.
Jen,
Read some of Dr. Fine’s writings. He and many others are moving toward believing that CD is a continuum disease. By that, I mean it is not diagnosed as CD until it reaches the 4th stage where there is damage to the gut. Long before then, many people suffer other symptoms. Their theory makes more sense to me than the old ‘one day a switch goes off an you have CD’ theory. Given this new perspective, it is likely that those who are currently identified as being gluten intolerant are really in early stages of CD. Research that. It’s interesting stuff….
I don’t know where I fit in the spectrum of gluten intolerant folks as I don’t go to doctors but if I even have a wiff of gluten hidden in my food I have four…always four…days of totally disabling sickness. Every joint in my body aches, I experience complete fatigue and malaise, and I have gut cramps (No runs tho) so severe that I can hardly walk around enough to even take care of myself. They only relief I have found is to take ibuprofen. These days I’m so careful that I rarely have a problem and I feel better than I have in years. I also drink a ton of regular milk and orange juice, neither of which I could tolerate before.I get plenty to eat from meat, eggs, cheese, milk, vegetables and fruits and some of the GF products like pastas and GF flour. The one food I should be able to eat that I can no longer tolerate is beans….I love bean soup and chili but just can’t do it anymore….doesn’t give me the gluten intolerant response but major indigestion.
This is no shock to me. I think gluten is poison for everyone, celiac or not. Trying to convince my family never to eat it. This is exactly why I have no fear that the GF diet will be a fad. I think more and more people will start realizing this. Especially the medical community! Thanks for sharing.. It was a great article. I’m saving it so I can share it.
I’ll try to condense the most important issues here. They are important.
This is much further than the celiac story and this is published research. Think of villi damage as one small subset of the gluten syndrome, just the first place they found damage.
Testing:
First, gluten can break into many more peptides (pieces – think of cutting up a necklace of beads)than there are corresponding antibody tests developed. And celiac panels only run a few of the tests that ARE developed, so any negative blood test is never conclusive. You may have an antibody they didn’t test. Dr. Thomas O’Bryan tested over 360 patients with a more complete panel (around 12-15 gluten related antibodies), and 77% of them were positive. He just looked in more places for more pieces!
Secondly, tTG is only consistently elevated in cases of total villous atrophy. So a false negative tTG screener is knocking out a lot of folks at the start. Some reaction pathways don’t elevate tTG.
Thirdly if a particular enzyme is not functioning, the first antibodies to appear(IgM type)are not converted over to IgA or IgG,and only IgM is present. IgM antibodies are not checked so that’s another way to get a false negative blood test.
Fourthly, damage can happen ALMOST ANYWHERE in the body, not just the villi. In other words, occasionally the villi are the target of damage and those are getting dx as celiac disease. If the damage is INSTEAD in the brain or nervous system for instance, or an organ like the heart, thyroid, pancreas, etc, or lining of the joints, etc.,BUT NOT THE VILLI, then snipping villi is worthless for gluten syndrome dx.
Other crucial points.
According to this perspective, which fits the community like a glove, non celiac gluten syndrome damage IS just as AUTOIMMUNE, very dangerously so, and particularly can atack the brain and nervous system. That includes nerves anywhere in your body, nerves in organs, the gut, etc. Sometimes constipation may be a result of damaged gut motility nerves.
Also experience shows that seesawing on and off gluten even in small amounts, when your body recognizes gluten as an enemy, is like seesawing on and off small amounts of mercury. The body doesn’t want ANY,it’s a toxin, and reacts, often silently, but usually builds up to more and more severely, over time. I’ve seen folks cheat for several years and then crashed into serious scarey neurological and other issues without warning. It is not a gluten free diet unless it is very strict. If it is not strict it can be damaging, as a regular gluten containing diet is also. The silent cascade from a mistake may last 6 wks to 2 months, long after any possiblysymptoms may show.
Gluten syndrome has is its own rules. They are not intuitive. That is how we got caught in a bad way.
Finally, gluten syndrome is in general caused by leaky barriers in the body, including the gut and brain barrier. Toxins, stress, lack of a nutrient dense diet including good natural fats, and processed vegetable fats, are huge contributors to those barriers not holding together well. Also the wheat itself was genetically tampered with by the ’50′s by methods not in use today.
If someone wants more explanation, feel free to call. I know how it feels to get caught, to be confused, and am happy to explain.
Research and medical diagrams on my website http://www.theglutensyndrome.net
Olive
Olive, that is very interesting information. Trust me I am done with the wheat cheating for so many reasons. Karen, I had a biopsy done about a year ago and no sign of damage to the gut was shown or diagnosis made of celiac. Though the doctor said this might happen because I follow a wheat free diet already. But none of that matters for I am done with wheat!
Olive, thank you for the information. I have checked out your website and I will continue to do more research on the subject of gluten intolerance. It is good to know that there are people like you educating the public when so often doctors fall short.
Julie
It’s great to read an informative discussion about this topic. Very validating to me as I’ve never formally been diagnosed with celiac disease, but I’ve been off gluten for 15 years and have been transformed. A good book I recently read that describes this nicely is “Healthier Without Wheat” by Dr. Stephen Wangen. He has a clinic in the Seattle area, suffers from gluten intolerance and explains a lot about testing and more.
Mary
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thank you Linda
I have another type of gluten enteropathy. Hartnup disorder is much more rare than Celiac. I was diagnosed 11 years ago and have been on a modified gluten free diet since. The disorder is diagnosed by a 24 hour urine test looking for excess amino acids. It also produces neurological symptoms and skin rashes.
To everyone that has a negative biopsy please take the biopsy report and get a second and third opinion. 3 doctors read my biopsy different. One said it’s a low positive (25 years ago) the second doctor said the biopsy is a negative. The third said he felt I had celiac from symtoms and yelled at me for not staying on the diet. He told me I would end up with lymphoma if I did not stay on the diet. Lastly I bought my report with me to a celiac conference. After the speech I asked the doctor to read my report. He said it looked like a positive to him.
I had a patient with 9 negative biopsies. Her tenth one was positive. Gluten sensitivity is a common phenomenon in the absence of celiac disease. I put together the following video to help understand the difference between them. Hope it helps you understand the topic better.
http://towncenterwellness.com/resources-products/gluten-free/what-is-gluten-sensitivityintoleranceceliac-disease/
You should know that HLA-DQ genotyping is definitely a better route to go than antibody testing. As antibodies are indirect molecules produced by the immune system and not always present for various reasons. Many of which Olive eloquently wrote on above.
If you rely on HLA-DQ testing, make sure to identify both the alpha1 and beta1 genes for HLA-DQ 1,3,2, and 8. Most labs only look for 2 and 8. Research has identified 1 and 3 as being gluten intolerance genes as well.
In good health,
Dr. O
Thank you for this post! In 2005 I had a negative celiac blood panel, but a small intestinal biopsy showed inflammation. The doctor did further testing using a “pill cam”, but the results were inconclusive. Diagnosis was IBS. My “tummy issues” would get better and worse, but never completely went away until two months ago when I finally cut out gluten…and I mean all gluten including lipstick, shampoo, and makeup. My family thinks I’m on a fad diet (and this will pass) or, even worse, that I’ve become OCD. I’m glad I’m not alone in wishing I had been diagnosed as having celiacs disease so I could justify my being so intent on staying gluten-free.
I just found this blog while doing my own research online, so had to post. I’ve been hypothyroid (probably since puberty) but only dx 4 years ago. Went thru a very stressful period in my life 2 years ago and started having joint pain about six months later. I’ve been from doctor to doctor for my thyroid problems but think I’ve FINALLY found a good one!
He went over my symptoms, family history, etc and said – I think you have gluten sensitivity. I was floored! I was leaning that way on my own, so when he “sort of” confirmed it, I was amazed. He told me gluten sensitivity is something you’re born with (a gene) and sometimes the gene never expresses itself, or other times it does, but the symptoms are more vague or very pronounced.
I’ve had female hormonal problems all my life (apparently very low estrogen) – then dx with the hashimotos, now the joint pain. He thinks it’s all gluten related but is getting me tested. He said there are several tests but it’s “celiac testing” so sometimes it doesn’t come back positive.
He mentioned there are 3 main types of gluten sensitivity – 1. brain 2. joints. 3. intestines/stomach (celiac) but all you ever hear about is celiac.
I’ve already cut out most gluten and my joint pain levels have been cut down 90%. I think I also have a candida issue, but we’ll see what happens.
I so glad you posted this on your blog, Jen! If I had known this years ago, I would have cut out gluten, could have solved a lot of my thyroid, female hormone issues as well. My doc suggested having my whole family tested as well (siblings,mom) and if I ever have kids, get them tested because it can save a lot of problems down the road.
Thanks for sharing your story and your heartfelt reply.
Jen
It is very informative to read these articles on “gluten sensitivity”. My daughter is 18 years old and suffers from gluten ins. as she did not test positive for Celiac via blood tests nor endo biopsy.
We try so hard to make sure we are cooking GF for her however things have become worse.
She now suffers from extreme joint pain mainly wrists, elbows and spine.
She is fatigued, now lactose intolerant, and now has what appears to be acne.
She saw a Rheumatologist – GI doctor suggested – all xrays were negative, blood work for Auto immune negative, RA neg. The only thing that showed up is low glucose level and she was not fasting and Vitamin D deficiancy.
I guess I just want to know if anyone has experienced these problems and how do you live with them.
Her Rheumatologist wants her to see a Dermatologist and Endocrinologist.
She is “done”; frustrated as you can imagine that noone can help her. As her mother I am heart broken as all I can do is give her Ibuprophen and rub her joints.
She is a bright young women with goals of becoming an engineer; yet I am afraid with her depression and with missing so much school her dreams are slipping away from her.
If anyone has anymore suggestions please help.
Thank You,
Naomi
Naomi, I am so sorry to hear about your painful predicament. I can’t tell you if gluten sensitivity is the culprit, but it certainly might account for the symptoms you described.
If you are testing the gluten-sensitivity theory it is very important to be vigilant about all gluten and even gluten traces in food and on cooking utensils. I sincerely hope your daughter gets relief from her symptoms soon. Keep us informed.
Jen
30 years ago (when I was 28) I was diagnosed with a gluten “allergy,” along with milk and about 200 other items. At that time there were NO commercially available gluten-free options. We joked that some day my mother would make something without a single ingredient that the recipe actually called for.
I have worked through many of the sensitivites but still must avoid gluten in all but tiny quantities (like in ordinary vanilla extract). Otherwise, my mind immediately fogs over, my head hurts, and my clinical depression becomes unresponsive to anti-depressants. I welcome Jen and Julie’s site and look forward to learning more about our common ailments.
My husband and I have been “fighting the good fight” against Celiac for 6 years now. His endoscopy was clean as well …. because we were living gluten free. Have a dna test done! The look at the markers and can tell 100% if you have it. Most insurance companies cover it and a GI Doc can order it. Good luck and let me know if I can help. Been on the block for a long time now.
I certainly don’t know if the cause it the same, but I had almost exactly the symptoms you describe starting when I was about 27. I was tested for lupus and many other conditions, but I finally had the good fortune to see a doctor who had some answers. For me, the “acne” part was rosacea, which is best treated by protecting your skin from the sun and putting zinc oxide cream on the affected areas at night. Docs call it a facial skin condition, but other parts of my skin were affected as well.
The joint pain gradually went away when we went Gluten-free AND organic. The doc indicated that it was very likely that I was sensitive to petroleum products, and told me to switch all of our cleaners and personal products to natural versions and eat organic. He also put me on some quality vitamins including heavy duty multi, essential fatty acids and acidophilus. Over about a year, almost all of my symptoms went away. I usually only have problems now if I eat too much non-organic food, or if I’m exposed to pesticides, air fresheners, dry cleaned clothes, fabric softener, or carpet cleaning chemicals.
I sincerely hope you find the answers you need for your daughter!
Kerry
Sorry, this is long and I admit I’m not an expert…. CD can be very confusing as I well know. I saw in another post 3 dif manafestations of gluten sensativity. 4 yrs ago I (to me) suddenly needed 3 units of blood – extremely anemic. Why? Only prob we could find was an ulcer but no visible evidence of it bleeding. Got the transfusion and then almost a year later, was losing blood again, blood ct going back down. Went to a gastro who did an endoscope expecting a bleeding ulcer. He told me that “on a whim” did a biopsy of my duodenum and was shocked to find the villi blunted, did the blood testing and got a positive for non-tropical sprue aka celiac disease. My history was no intestinal probs. I was often constipated, still am. I had no usual symptoms. His conclusion was that something in my recent health kicked in the cd. whatever happened, I’m sure the diagnosis was correct. What I do know after drs and research is that if one does the gf diet for a period of time, the biopsy will not show evidence. If one has been gf for a time, some drs have you do what is called a gluten challenge – eat gluten for a period of time prior to the biopsy. But think of the damage you would be putting your body through if you do have cd! I would not suggest that.
What I do know is that I am thankful that I was dx’d so recently. I have a friend who was dx’d almost 30 yrs ago. She has not kept up w/the info that’s out there. I remember her telling me (prior to my dx) that she had mastered eating a McD hamburger w/out the bun by squishing the burger out while still holding the bun. I shudder to think about that now. It’s no wonder she has so many other problems now like fibromyalgia and thyroid probs!
Please, everyone who has a diagnosis in the family or who even suspects gluten, read, research and make sure you have a knowledgeable dr and be proactive. No one knows your body better than you do. who better to watch out for your body than you. My 2nd bout of anemia, my primary dr prescribed iron pills! After reading everything I could about cd, I knew that absorption is my problem. I talked to his nurse (here you rarely talk directly to the dr) and said “he does realize that there’s probably damage again and there’s absorption how long would it take to recover the red blood cells.” (this type of anemia is from malabsorption of the proper nutrients to produce the ability to replace red blood cells which only last 3 mo.) My dr was very abrupt and had his nurse make me an appt w/a hemotologist who later confirmed my fear of iron pills. I did an iron infusion that time.
bottom line, I’m alive and well, finding more and more gf products mainstream and have not had a backslide for 3 years now. Is this easy? No, but it’s much better than the alternative.
Wow! All of this information is both exciting and scary to me. I have had symptoms of gluten sensitivity and have tried to limit it for a few years. I do see benefit when I am strict. But I struggle because the benefit doesn’t seem like it is worth the effort. I travel a lot and it is very difficult. I finally got tired of all the attention I was causing when trying to order at a restaurant. Now that I have read some of this blog,I am a little scared to know that there may be serious consequences from going on and off the gluten free diet. I am simply overwhelmed and could use some help.
Hello to all!
I wanted to add that, when diagnosing NCGS, it is important to look at a person’s Gliadin IgA and IgG level. A lot of doctors do a blood test for celiac only (I believe this is called a Total IgA), and they do not check or look at Gliadin.
I went through a long stretch of being told it was okay to eat gluten. It wasn’t until I finally went to the Celiac Center at University of Chicago that I received a proper diagnosis.
My biopsy, Total IgA came back negative, but my Gliadin came back very high. (I do not remember if it was IgA or IgG).
If anyone is interested in reading more, there is a book that helped me understand all of this a little bit better:
According to Dr. Stephen Wangen who authored a book entitled HEALTHIER WITHOUT WHEAT, if either Gliadin IgA or Gliadin IgG comes back positive, “you are gluten intolerant.”
It sure is true in my case. I am highly sensitive to gluten. What a relief to finally have found the answer!
Great blog, here. Thank you to everyone for great comments.
Lyn
Comment to Craig:
Craig, if you have Celiac, even a small amount of gluten can do serious injury, over time. It is very important that you either get a diagnosis or, if you feel you may have it, totally (and I mean totally) eliminate every trace of gluten from your diet.
This takes some patience. Gluten hides in everything from (some) flavored coffee to salad dressing to toothpaste.
On the other hand, if you have yourself tested properly, you’ll get an answer. You, too, may be non-Celiac gluten sensitive, which means that, while you may become sick after eating gluten, you aren’t destroying the villi in your upper intestine. Hence, you may not have to worry as much about the consequences.
That said, please keep in mind that medical science is far from understanding all they should about gluten-sensitivity, including, but not limited to, neurological implications.
I personally feel that if a person has it, it is better to eliminate it completely, just to be on the safe side of things.
I would look to see if there is a Gluten Intolorance Group (GIG) in your area, or call a local hospital to see if there might be other support groups in your area.
You’ll make new friends and have the advantage of being around a GREAT group of people who not only understand but who can guide you in where to dine, shop, etc.
In my group, we purchase food in bulk to save $$, go on restaurant outings, and have the most liberating complaining sessions without anything looking at us like we’re a pain.
It’s definitely worth it. Give it a try.
PS: Here is the link to GIG: http://www.gluten.net/
You should definitely check out the book, “Healthier Without Wheat” by Dr. Stephen Wangen. It is packed with information on gluten intolerance, including full chapters dedicated to non-celiac gluten intolerance. It helped me to really understand the different types of gluten intolerances – something that I was having trouble trying to pin down in my own research. I hope that you find it just as useful!