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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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    What a brilliant, common sense article. When stated like this, with the benefit of successful case studies to back up the conclusions, why would other specialists still insist on using the old methods?

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    Great points made by Dr. Ford. However, I wonder if Dr. Ford is aware of the stool tests available from www.enterolab.com, which are great for early diagnosis. My daughter was 3 when I had her tested, with no apparent symptoms, and her test results were extremely abnormal. I would never require her to wait the decades I had to wait to get diagnosed. And in my 30s, I still had a negative blood test. The GI community needs to wake up - blood tests and endoscopies are great money makers, but are not the 'gold' standard in diagnosing gluten sensitivity.

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    YAY!!!! I can't tell you how relieved I was when my Gastro somewhat reluctantly backed my decision not to do a biopsy on my then 4 year old. She was doing great on a gluten free diet after blood tests showed likely celiac. I saw no point of putting her through the procedure. We had been watching for it for years, as three of her cousins have it. I refused to make her get sick just so we could diagnose her formally. good news is after a year gluten free, her finger nails are strong and growing, I have had to cut her toe nails for the first time in her life. She looks great (no more circles under her eyes), no more 'Mommy, my tummy hurts'.... ever. The gluten free diet was the best thing I ever did for her. We are now watching her sister (no positive signs or tests to this date), think I'm just going to go ahead and do the gene test, if she has the gene I'm going all the way gluten free for everyone, even me...

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    I think is article is wonderful. My daughter was diagnosed at age 2 and we weren't sure she would survive. She pulled through and just turned 19! We are now battling her colon cancer and wondering how much the 17 years of Celiac disease played into this latest trauma.

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    My son experienced tummy & headaches, lethargy, wingy generally unwell for a year. I ordered blood tests which confirmed the celiac gene, he is now off gluten & a healthy, happy, normal boy. This article spurred me to act. Well done!

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    Good article but something very important left out. A stool test is the best option for determining the gluten intolerance. The blood test is not very accurate and the tissue sample is too invasive. Enterolab.com performs this test well and no Dr. visit is necessary. My daughter was diagnosed with only a gluten intolerance not Celiac due to the fact that we caught it early. She is now 7 years old and has been on the diet for a year now and doing well!! Looking back, she has had intestinal issues since she was 2 or 3 years old.

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    Guest Valeri Browne, Mychef.bz

    Posted

    Bravo Doctor! I specialize as a personal chef to many gluten free clients; two are 3 and 3/12 years old and their parents did not wait! Even if you can't afford the tests, err on the side of caution and put them on it anyway! You will very quickly know you did the right thing.

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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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