Are There Degrees of Gluten Intolerance?

Dr. Vikki Petersen, D.C., C.C.N.

By Dr. Vikki Petersen

I recently saw an “Ask the Doctor” question on the medical section of a popular news website. The individual asked about degrees of gluten sensitivity. She already knew that she didn’t have celiac disease, but she wanted to know if gluten was still a problem for her. Much of the data shared was accurate, but there was some misinformation disseminated that I wanted to point out so that you won’t be confused or misinformed. To define our terms, gluten intolerance is used as an umbrella condition that embraces both celiac disease and gluten sensitivity.

Research has only just begun into gluten sensitivity. Two years ago researchers were arguing whether or not the condition even existed, and today some major research dollars are being spent to understand it and diagnose it. While that is positive, we still have a long way to go.

Celiac disease is estimated to affect 1% of our population with that number increasing to 4% with age. Gluten sensitivity is conservatively estimated to affect 10% of our population (remember the research is very young) which makes it an extremely common condition. Personally I believe that we’ll find gluten sensitivity to affect upwards of 30% of our population, but time will tell.

Unfortunately this knowledge is not yet widely known among clinicians as evidenced by the woman who sent in her question. And I quote: “I know that I’m sensitive to carbs but I wanted to know how sensitive I was to gluten. I had a test taken by a nutritionist, and it came out positive. So I wanted to get tested by an official M.D., which I did. He tested me for celiac disease, even though I told him I didn’t have it. He didn’t understand when I told him that gluten sensitivity has different degrees of impact.”

All too often patients who suspect gluten intolerance are tested only for celiac disease. The poor sensitivity of the tests aside (there are many false negatives) omitting a test for gluten sensitivity easily misses diagnosing millions of people who are suffering from the ill effects of gluten. The doctor who wrote the answer apparently interviewed Dr Joseph Murray of the Mayo Clinic. Dr Murray is someone I respect highly but I do have to disagree with some of the information that he is attributed to stating.

Before I mention my specific disagreements, I do want to note for the record that individuals are not always quoted correctly and this very well could have happened here. Just yesterday I had the same thing happen, when I saw a quote attributed to me on a website that was inaccurate.

Okay, let’s get on to what was said, what I disagree with and what the truth is in my opinion. Dr Murray is quoted as calling one version of gluten sensitivity “celiac lite” and stating that the person doesn’t have the positive tests for celiac disease but has digestive symptoms that benefit from a gluten-free diet. He also states that non-celiac gluten sensitivity does exist but defines it the same as “celiac lite” and mentions that the patient is often diagnosed with irritable bowel syndrome or IBS. My disagreements with the above are: First, calling a condition that creates depression, migraines, obesity, fatigue, schizophrenia and pain ‘lite’ is insulting to those who suffer from it. None of the 100s of symptoms and conditions associated with gluten sensitivity are ‘lite’, they are serious and potentially life threatening. In fact in the Journal for the American Medical Association, fellow American researcher Dr Peter Green cites Dr Ludvigsson’s findings from Sweden, that undiagnosed gluten intolerance increases your mortality rate from all causes. Relegating the symptoms associated with gluten sensitivity to only those associated with digestion is not only inaccurate but does a grave disservice to the concept of increasing awareness. The facts are that neurological symptoms from gluten outnumber digestive ones greatly.

One of the biggest hurdles we have to surmount is overcoming the false idea that gluten only creates digestive complaints. This is one of the reasons that our diagnosis rate is so pitifully low (5%), doctors don’t think to check their patients for the condition. Dr Murray apparently quoted a recent Australian study published in the American Journal of Gastroenterology whereby researchers acknowledged the existence of gluten sensitivity but were unable to determine its cause.

That may be the conclusion of those researchers but we do know that gluten sensitivity results from the immune system reacting in a negative fashion towards gluten. It may not be the exact same reaction as is seen in celiac disease, but that makes it no less serious. The hundreds upon hundreds of patients that we have personally seen in our clinic whose health improvement was miraculous because we discovered them to be gluten sensitive, is truly vast. These patients did not have celiac disease but they were gluten sensitive and the cause was a negative reaction to gluten that occurred in various systems of their body.

The doctor answering the question went on to state to the reader that there was no reliable test for gluten sensitivity, so whatever her nutritionist ordered was not medically approved. There certainly IS a reliable test. And one of the best and substantiated by research as valid is also free – eliminate gluten from your diet for 30 days and see how you feel. If you notice an improvement, that is considered to be a valid test. There is an anti-gliadin antibody test that measures the body’s immune system response to the protein gluten. If the body doesn’t consider the protein to be a problem then it wouldn’t make something called ‘antibodies’ against it. This test measures this reaction. The new lab test by Cyrex Labs expands upon the above about 10 times by analyzing a potential immune reaction to many different parts of the gluten protein. The anti-gliadin antibody is just one part, the Cyrex test has 10 aspects of the protein that it measures, thereby increasing accuracy dramatically. The test is also a celiac panel, making it quite comprehensive. Further, genetic testing exists for gluten sensitivity. These are not the same genes as for celiac disease, but they can be measured and I personally have found them to be very accurate.

Lastly, telling someone that a test isn’t medically approved is insinuating that it’s invalid or worthless. Our medical profession really shouldn’t be casting stones considering it only diagnoses 5% of the celiacs suffering. If ‘medically approved’ tests were effective, wouldn’t we have a better percentage to show for it? Should 15% of the United States population (at least!) simply continue to suffer and not identify what’s really causing their health problems until the medical majority ‘deem’ that a test is now approved?  I think not.

She also told the reader that if her symptoms resolved after one month and the dietary change didn’t stop working several months later, than she is likely gluten sensitive. You may wonder what my disagreement is here, considering I myself state above that eliminating gluten for a month is a valid test. It’s not that part that I have a problem with, it’s the section where she states that the dietary change ‘doesn’t stop working’ several months later.

Let me explain: I’ve been working with patients suffering from celiac disease and gluten sensitivity for almost two decades, and I can tell you that often the initial benefits that patients notice when removing gluten don’t always stay corrected. Why? It’s not because gluten isn’t the problem, it’s because, like peeling layers of an onion, there is another layer of health issues that needs to be addressed. This is why I specialize in treating the secondary effects of gluten. If removing gluten from the diet was the only thing a gluten intolerant individual had to do, optimizing the health of these individuals would be easy.

Unfortunately removing gluten is often just the beginning. Now don’t get discouraged, the secondary effects are not difficult to treat, nor do they need to take a lot of time. They simply need to be tested for and treated appropriately in order to truly regain optimal health.  So it’s not abnormal for this to occur and if everyone who had a symptom return then decided that gluten wasn’t really their problem, we would have a lot of needlessly ill individuals doing more harm to themselves.

And finally, the doctor informed her reader that people often feel better on a gluten free diet because they are eating less food overall due to fewer choices. Really? Well I don’t find that to be the case at all. My practice is in Silicon Valley, California, a major metropolitan area. The reader was from Oakland, also a large city nearby and the doctor answering her question was too local. So while I could have cut her some slack if she was writing from Arkansas or some small town where gluten-free products were not widely available, making such a statement from a large city really made no sense to me. Not only are there abundant sources of food that are naturally gluten-free including every fruit, vegetable, nut, seed, bean, legume and animal product (eggs, fish, meat), there are also an abundance of typically gluten containing foods that are widely available gluten-free.

I hope you find this to be helpful. I am committed to educate and increase awareness of gluten intolerance to this planet. Every inroad we make in this area saves lives. Please let me know any questions that you have. HealthNOW Medical Center’s destination clinic treats patients from across the country and internationally. We are here to help!

To your good health,
Dr Vikki Petersen, DC, CCN
Founder of HealthNOW Medical Center
Co-author of “The Gluten Effect”

5 Replies to “Are There Degrees of Gluten Intolerance?”

  1. I am so happy that you took the time to read my story and answer it. I have tried to contact doctors on the internet but got no response.

    Genetic Testing is not available in Egypt as far as I know.. The problem is being strictly gluten-free is so difficult in Egypt that I don’t want to make my son follow it for life if I am not 100% sure that his problem is from gluten. Is there any other condition that results in increased lymphocytes as well as the rest of the biopsy results, like another food intolerance? Also, I have stopped gluten myself since my second baby was born and he’s 3 months old now but has the same symptoms his brother had as a baby, but maybe in a mild form. He has reflux, constipation and gas pain.. so I am wondering what the reason may be (he’s being exclusively breastfed).. Is there a way I can send you the biopsy pictures of my son? He is such a skinny little boy and also his stature is not tall, but I wonder if there is no malabsorption and no diarrhea why he doesn’t gain weight..

  2. Dear Laila,

    There is no such thing as a ‘mild’ form of celiac disease and yes, increased intraepithelial lymphocytes are seen in the earlier stages of celiac, before villous destruction, as well in gluten sensitivity. Low iron is also a common issue with gluten intolerance.

    Unfortunately removing gluten only is often insufficient to obtain complete healing and reversal of symptoms. The secondary effects of gluten must also be addressed. Feel free to read my book, “The Gluten Effect” or visit my website and blog at: where I discuss this in greater depth.

    You could redo the biopsy to see if the IELs are normalized as long as you feel that your gluten-free trial with your son was as close to perfect as possible. Occasional cheating will not get the desired results. It really has to be complete gluten removal.

    Once you’ve removed gluten I would never suggest reintroducing it if there was any possibility (which there seems to be) of an intolerance, but the genetic testing for both celiac and gluten sensitivity is available to your son (and yourself) even though he’s not consuming gluten. I don’t know what the availability is in your country, however.

    You are correct in your comment regarding Hashimoto’s and celiac. And you are also correct in the genetic component of gluten intolerance. If your son is intolerance, either you, your husband or both of you carry the gene.

    It truly does sound as if this is a problem for both you and your son based on both your symptoms and the test results. There is so much to say to you but difficult to write it all in this forum. Please do visit the website, you can become a member for free and download my recent eBook – also free.

    Finally, the difference between celiac and gluten sensitivity is that one is an autoimmune disease that destroys the small intestine (beginning often with increased IELs) and the other will show increased IELs but never create villous atrophy. That in no way means that one is any less destructive to health than the other and the treatment for both is a strict gluten-free diet plus the diagnosing and treating of pertinent secondary effects.

    I hope this helps. Do feel free to write back. My clinic is a destination clinic that sees patients from all over the world. We would be delighted to help!

    Yours in good health,
    Dr Vikki Petersen

  3. I have a son who is two and a half years old. He was delivered at the end of the 36th week with a cesarean section because the doctor believed he had IUGR and on the day of his birth we made a Doppler Ultra Sound showing not enough blood flowing to him. He was born weighing 2.650 kg. Since his birth he has always had terrible gas and bloating and difficulty passing stool, straining all the time to pass stool and gas. He also had some reflux at times. We thought that he will outgrow all this, but he never did. Also at age 1 month he had inguinal hernia and had the operation done.
    He was exclusively breastfed (although sometimes at the hospitals here they feed newborns formula without telling his mom, especially as he stayed under oxygen for one day) until he was about four months old when he weighed 5.500kg. I had tried everything to relieve his pain but had no success. At that time I had some drop in my milk supply and we decided to supplement with some formula and after some time we decided to check his iron levels because he looked pale. He had
    Haemoglobin 8.5
    MCV 70 fl.
    MCH 21 Pg/L/dL
    Serum Iron 26 ug

    His doctor suggested Iron Supplements and a test for Milk Allergy.
    The Serum IgE was 21.52 IU/ML
    Serum Specific IgE for Cow Milk Protein 0.86 KU/ML (Normal up to 0.35 KU/ML)
    Serum Phogocytic Inhibition Test for Milk 19% (normal above 25%)
    IgA 34.5

    We also had the antigliadin test for Wheat Allergy and it came out negative.

    We both stopped milk when he was about 6 months old until he was about 1 year and 1 month old. After that we repeated Milk Allergy test and they came out negative, so he resumed taking milk. His Haemoglobin was now 11.4 because he had been on and off iron supplements. All this time he had the same symptoms, I didn’t really feel he was a lot better. We also made skin prick tests for egg, milk, wheat, cacao, strawberry, banana and peanut and they all came out negative. He didn’t have any skin problems as a baby or toddler. And he also had no chronic diarrhea or nausea. We stopped iron supplements as we thought they were aggravating his stomach problems.

    When he was about 18 months old, we went to a GI doctor specialized in children and she told us to make some test and an x-ray.
    The abdominal x-ray showed only gas and the test for gluten intolerance:
    Anti tTG/DGP IgA/IgG : 24.9 U/ml (normal less than 20).
    She told us to make a CT scan at that time but we were afraid to make him run all these test when he is so young so we stopped.

    His symptoms remained:
    burping and hiccupping a lot with associated pain and discomfort making him aggressive and preventing him from finishing his meals,
    having major discomfort before passing stool and not being able to empty all his stool at one time, staying in discomfort in between bowel movements. and abdominal distention
    Feeling full very quickly and then after passing some gas and burping wanting to eat again, having a lot of undigested food in his stool..
    Very poor weight gain, he is now 2.7 years old and weighs only 11 kg, and poor appetite,
    recurrent Respiratory infections, and recently recurrent tonsilitis,
    disturbed sleep at night due to his stomach problems.

    Other than this, he is a healthy and very smart, happy and active boy.

    So recently I suspected he might have Silent Reflux, as he was constantly trying to avoid burping and sometimes feeling bad taste in his mouth. We went to another GI and she suggested making an upper biopsy.

    The results of the biopsy were as follows:
    During the biopsy, they noticed mild erythema in cardia, streaks of erythema and punctate lesions in his stomach in the lower lining of the stomach suggesting gastritis.
    In the final pathology report, they stated (I can email you the pictures):

    Examination of prepared slides from the duodenal biopsy revealed multiple
    snips of duodenal mucosa, some including submucosa with preserved villous
    pattern and intact brush border. Lamina is widened by mild
    lympho-plasmacytic infiltrate, with prominent plasma cell component. Plasma
    cells are seen mature. There is relative increase in lymphoid cells infiltrating
    epithelium of villous surface epithelium. There is occasional eosinophils.

    Sections prepared from the body and antral gastric biopsy specimen revealed
    mild widened lamina propria with mild inflammatory infiltrate, mainly
    lymphoplasmacytic with scattered eosinophils. The infiltrate is composed of
    plasma cells, lymphocytes with occasional neutrophils, but no detected
    lymphoid follicles.
    H&E and Giemsa stains revealed no H. Pylori bacilli.
    No evidence of mucosal atrophy, intestinal metaplasia or cellular atypia.

    Slides prepared from the esophageal biopsy show picture of mild reflux
    oesophagitis with increased papillary height and mild inflammatory cells

    Diagnosis: * Mild duodenitis with preserved villous pattern and relative increase in
    In traepithelial lymphocytes. Picture is suggestive of Celiac disease.
    * Mild superficial gastritis.
    * Mild reflux oesophagitis.

    Note: Please correlate with clinical and serological markers.

    After that, doctors suggested we also let him undergo CT scan to make sure everything was OK.
    So we did it and it came out OK, showing only gas.

    He stopped gluten for about a month now (but with some minor mistakes during that time). I feel he is somewhat better but I am not sure yet, partly because we started iron supplements again as we tested his iron and it was like this:

    Serum Iron: 68 (normal 60-160)
    Serum Ferritin: 18.11 (normal 22-322)
    HGB: 11.1
    MCV: 73
    MCH: 22.1
    MCHC: 30.4

    Now the following are my questions:

    First, I am still not 100% sure that he does have Coeliac? Is this biopsy result definite or can it be something else, like another food intolerance? Can it be that the villi is still maintained although he was having Gluten? Is an elevated lymphocytic count enough to diagnose Coeliac without any villi being damaged?
    And if yes, can it be damaged in the future if he eats Gluten or is it just a mild form of Coeliac which just causes discomfort without affecting absorption? If he eats Gluten, could he develop another auto-immune disease in the future?

    The second thing that I think about is whether I may have Coeliac, too.. I have read that Coeliac is an inherited gene and that people who have Hashimoto’s are 3 times more likely to have Coeliac and I do have Hashimoto (autoimmune Hypothyroidism). I have had some digestive and malabsorption complaints myself but I am not sure if it is from Gluten. Anyway, i have stopped Gluten myself with my son because I have delivered my second baby one month ago so I didn’t want to risk him having gluten in my breastmilk at least for the first few months until I have more insight on this.

    Sorry for the too long comment, I just don’t know your email to send you my question and I feel you’re knowledgeable in this area, doctors here are not very updated about new tests and studies…

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