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  • Dr. Rodney Ford M.D.
    Dr. Rodney Ford M.D.

    How Early Can Celiac Disease Be Diagnosed?

    Reviewed and edited by a celiac disease expert.

    This article appeared in the Summer 2007 edition of Celiac.com's Scott-Free Newsletter.

    This question, “how early can you diagnose celiac disease?” is a major concern for both parents and paediatricians.  This is because, like many diseases, celiac disease comes on slowly.  This means that it can take a long time to make the diagnosis.

    Celiac disease can develop slowly?
    Yes, celiac disease can develop very slowly.  The symptoms can be subtle.  It is a progressive disease.  When you are first born, you cannot have celiac disease as you have never been exposed to gluten.  However, if you have the right genetic make up (that is you have the celiac gene) and the right environmental circumstances (eating gluten and getting gut inflammation), then celiac disease can develop.

    Finding tissue damage
    Celiac disease is a condition that is recognised when you get damage to your small bowel tissue.  This damage is triggered by gluten.

    The standard way to detect this tissue damage is by taking a gut biopsy of the small bowel skin (also called the mucosa).  This is done by the technique of upper endoscopy whilst under an anaesthetic.  Tiny fragments of gut tissue are snipped off with a pair of forceps.   This tissue is then sent to a pathology lab.  The lab people (histologists) look down their microscopes at this tissue sample.  They are looking for the gut damage called villous atrophy which is characteristic of disease.

    Early antibody changes – IgG-gliadin
    Importantly, long before the tissue becomes obviously damaged by gluten, your body can begin to react to the gluten in your diet.

    An early sign of a gluten immune reaction is that your body produces antibodies to the gluten in your diet.  This can be seen in a blood test that looks for an antibody called the IgG-gliadin antibody (also known as anti-gliadin-antibody).  Also the IgA-gliadin antibody can develop at this time.

    Even in these early stages of gluten reactions (before the development of any gut damage of celiac disease), you or your child can be feeling unwell.  Many of the symptoms of celiac disease can be recognized in these early stages.  This is before the tissue damage can be seen by the histologist.

    The blood test to look for tissue damage is called the tissue transglutaminase antibody (abbreviated as tTG).

    Early bowel damage cannot be seen
    The next thing to happen is that the tissue in the small bowel gets slightly injured but not enough to be identified by the histologist.  However, such damage can be shown by an electron microscope.  This early damage can also be detected by the presence of the tTG antibody.

    Usually, when the tTG blood test goes up, then this is an indication to do the endoscopy and look for any tissue damage.  However, early in the progression of celiac disease, this damage may not show up by conventional methods.  This means that the small bowel biopsy and the histology results are good for confirming celiac disease, but they cannot rule it out.

    To act or to wait?
    In my experience, I have seen a number of children develop celiac disease whilst I have watched and waited.  While we doctors wait and see if the gut will become progressively damaged, these children will continue to experience their gut symptoms and they may not be growing so well. We doctors are waiting to make a certain diagnosis of celiac disease.  We want to repeat their blood tests and do another endoscopy.

    Is this reasonable?  Experience has changed my mind.  I have come to the conclusion that this is not an appropriate way to deal with these children.  Currently, most medical specialists are adamant. They will not make a diagnosis of celiac disease until the histologist can confirm the typical tissue damage.

    How long can you wait?
    I have given up the “wait and see” approach.  I act.  I carefully scrutinize the symptoms and the blood test results - the gluten antibodies (IgG-gliadin) and tissue damage antibody (tTG) levels.  I may organise an endoscopy test.  If these findings suggest the development of celiac disease, then I make a pre-emptive diagnosis of “early celiac disease”, often before the gut gets badly damaged.  I give these children a trial of a gluten-free diet – I see what their clinical response is.  Pleasingly, most get completely better!  If they get better, then they want to stay gluten-free.

    The problem is that the diagnosis of celiac disease currently hinges on the abnormal appearance of the small bowel.  This damage can take years to develop.  

    The main argument against my approach is that if you do not have a “definite” diagnosis of celiac disease, then you cannot advise a gluten-free diet for life.  In my opinion, the decision to go on a gluten-free diet is not a black and white choice.  For children, I give them the option of a gluten-free diet early in their disease.  Let them feel well.  Let them grow properly.  Later, as an adult, they can challenge their diagnosis and have a formal gluten challenge when they understand the issues.       

    Conclusion – my approach
    As you can see, it is difficult to say how early you can diagnose celiac disease.  It is my practice to carefully assess children regarding their symptoms, their antibody levels, their genetic status and their endoscopy results (if appropriate).

    I do not think it is logical to leave children with significant symptoms waiting for the small bowel damage to eventually occur.  Indeed, I think that these long delays in treatment are inhumane.  Postponement of a gluten-free diet will cause these children to suffer ongoing symptoms.  Worse, they can have growth failure, from which they may not recover.

    My approach is to put these children on a gluten-free diet early.  I watch and see if thy have a clinical response: if they get better.   The evidence shows that you cannot rely entirely on the small bowel biopsy for your diagnosis of celiac disease.  These children can have a gluten challenge later in their lives.

    The onset of celiac disease is progressive.  Why wait until the bitter end before going gluten-free? The onset of celiac disease is progressive.  Why wait until the bitter end before going gluten-free?  You can find out a lot more from my webpage: www.doctorgluten.com


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    Why not perform the fecal test from Enterolab for children? Since it looks at genetic markers, wouldn't it be a better choice (less painful) than a biopsy?

    Thanks,

    Shelley

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    What great advice to parents. My daughter wasn't growing, had thin hair, and loose bowels for months. Her pediatrician said she was fine. After stumbling on a magazine article by chance I took her off gluten. Her bowel issues cleared up and she grew like a weed. I suggested celiac disease to her pediatrician, and he ordered a blood test which showed nothing because she was off gluten. He didn't understand she needed to challange the gluten to get an accurate diagnosis. I came to the same conclusion on my own as in the article. If she is doing so well off of gluten, and she gets upset tummy if we mess up, then why wait for a diagnosis? She can challenge it later as an adult.

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    My baby started the gluten-free diet at 6 weeks old (he was exclusively breast fed for 11 months, when we introduced carrot and rice). It was a last resort move to avoid NICU and IV feeding. And going back to the newborn photos, you can see the pain on his face, nearly from day one. I'm still sad he was 6 weeks in severe pain, but the day we found out, I NEVER even considered reintroducing gluten.

    My job as a mother is to raise my child in the safest possible conditions. When he's older, he'll decide for himself.

     

    BTW: The romans could diagnose celiac 2000 years ago with 'you eat you're sick. you don't eat, you're not sick'.

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    Very conclusive. I have had the Enterolab tests done with gluten intolerance results and casein intolerance results. I wonder how many of those that are doing so well on gluten free diets would also benefit from casein free. I just wish I could convince my 18 year old that she too is intolerant before the damage is done. I work in a hospital and can see all the damage first hand. I wonder what their lives would be like had we recognized this earlier. So much for hind sight. We need to compel the physicians to listen to their patients symptoms. How easy it would be to change our diet to see if our symptoms were relieved.

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    I always heard stories from my mother about how sickly I was from the time I was a baby. They took me to many doctors but no one knew what my problem was. All through school my mother was told that I was healthy but underweight, but I ate like a horse. Not until I was in my 40's and almost could not bear to walk because of the pain in my bones, did I find out through a great doctor and biopsy that I was celiac. I have had some growing spurts, leftover from childhood, and feel great on a gluten free diet. I have told my children and only one bothered to be tested and was positive and also lives gluten free. The symptoms are there, pain, stools etc. act on the gluten free diet, it will tell you soon enough.

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    Amen. This is basically what happened to me. (I was 'diagnosed' when I was two or three - I don't remember exactly when.) I had been starving and the doctor couldn't figure it out. Finally, my mom bumped into one of my grandfather's friends, a physician, who suggested the idea that it could be celiac. At first the doctor wouldn't hear it. (this was twenty years ago, and celiac was an even more unpopular diagnosis then) So my mom put me on the diet herself and I gained weight for the first time in a year. The doctor watched me for a while more and finally admitted that it must be celiac. He was also sensible enough to tell my mom not to get the official tests done until I was healthy again. Well, here I am, 21 years old, and life's been great.

    Thank heavens that people are realizing that you can't treat kids and babies like adults.

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    I was finally diagnosed With Celiac disease at the age of 52. All my life I was sick. I had the skin condition, the allergies to everything. Asthma. and lost my hearing so that I am now profoundly deaf due to nerve deafness. All my life was one illness after another. Finally while trying to regain my strength due to anemia I stated eating whole wheat bread and whole wheat bagels thinking that would help. I thought I was going to die. Finally after the doctors became alarmed thinking I had a GI bleed they went in to fix it and took a biopsy of the small intestine and I finally after 52 years of misery got a diagnosis. I have been gluten free for 18 months now and my life is so much better. I have gained 16 pounds and pain free. It's truly amazing.

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    Guest Susan Pierce-Ruhland

    Posted

    Thanks for an excellent article! My son had a biopsy 'within normal limits' at the age of 2 1/2, though his gastroenterologist had seen his damaged gut. With his blood tests abnormal, his malabsorption at 27%, and his pain, we were more than willing to go with a gluten-free diet. His pain ceased, he started growing and thriving. He's almost 17 now, an active guy who is bright and outgoing. And when he's had an exposure...we know it! But because he never had a biopsy that 'confirmed' his illness, his pediatrician never believed the diagnosis. It made working with him difficult at best, especially when we needed him to ask the pharmacist to verify that all prescriptions are gluten-free. We looked at it this way: the diet is not going to hurt our child, and it most certainly helps him. One principal of medicine is 'do no harm.' The diet does no harm, and the unwillingness to go with it might (and can) do harm!

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    Bravo Dr. Ford. Excellent article. We follow the same philosophy in our office with one addition. The New England Journal of Medicine tells us that having antibodies to the intestines (transglutaminase) and no identifiable damage on biopsy, PREDICTS future celiac disease.

     

    'The presence of gluten-induced autoantibodies in subjects with initially normal villous architecture on small-bowel biopsy who are eating normal amounts of gluten predicts subsequent mucosal deterioration and celiac disease.'

    (N Engl J Med 348;25, June 19,2003 2517-2524)

     

    We also check for the genetic vulnerability to celiac disease (DQ2 and/or DQ8). If a child (or adult) has one of the genes, and an elevated antibody to the intestines, we strongly recommend a trial period of gluten, dairy, sugar, and caffeine free eating. The results, as you know, are nothing short of fantastic for the vast majority of families who implement this. And yes, we strongly recommend the entire family embraces this eating style. Everyone feels better when they do. Dad's weight comes down, Mom's energy comes up (the thyroid starts working better), and the kids do much better in school.

     

    And between the many excellent books out now on the topic of how to implement gluten free eating, the numerous Support Groups around the country, and chat rooms like this, more and more people are learning that being gluten-free is, as Danna Korn writes in her books, a fantastic opportunity to move up the ladder of health.

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  • About Me

    Dr. Rodney Ford is a Pediatric Gastroenterologist. He was Professor of Pediatrics at the Christchurch School of Medicine. He runs the Children's Gastroenterology and Allergy Clinic in New Zealand. He has written a series of 7 books on gluten (www.DrRodneyFord.com). His main theory is that symptoms from gluten reactions arise from brain and nerve damage. His latest book is "The Gluten Syndrome" which encapsulates current ideas and concepts of gluten and the harm that it does.

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