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    How Early Can Celiac Disease Be Diagnosed?


    Dr. Rodney Ford M.D.

    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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    Guest Susan Phipps

    Posted

    Hear, hear. Finally someone sensible. My child was suffering so much and not growing, when I took her off gluten for two weeks and everything cleared up and she started growing again, I have not been able to put her back on gluten. Unfortunately her father does not feel the same and refusing to acknowledge this. Formerly, he was a surgeon.

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    Guest Julie Jones

    Posted

    Finally, I see a medical opinion that backs up what my daughter's pediatric GI and I decided to do for her years ago. She has a brother with Celiac Disease, had exhibited symptoms for over a year, but her blood work and a biopsy were negative for celiac disease. We decided to go gluten free anyway and let her decide later in life if she wanted to do a gluten challenge. We just did not want the damage to her brain that my son endured in the 3 months it took to get his diagnosis. He ended up needing speech therapy for 5 years. My daughter now has a full head of hair and normal bowel movements.

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    This is good. We had our son's stool tested by Enterolab and found fat malabsorption, the specific gene, and casein issues. This was before any symptoms (my father is celiac and osteoperotic etc because of it). When we had his blood tested they didn't have any issues with it, but we weren't on wheat either. The mainline doctors didn't know that you needed to be on wheat for it to show up in the blood. They told us to put him back on a diet with gluten! When he does eat wheat his eyes get black circles and his bowel movements prompt him to spend much time in the bathroom because of constipation. My husband semi-reluctantly goes along with it, but is coming around.

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    Great, I love this article and I have already sent a link to my daughters gastroenterologist. My little Nina is probably celiac, but her biopsy was negative. She had to be on gluten for 3 months before that, she was really suffering and doctors found nothing... But when on diet, she feels great, she eats!! and grows, she has no pain and nobody believes me :-(

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    Guest Sue Joba

    Posted

    Thank you Doctor Ford!!! My son's tests were coming back normal. We however, never had a TTG done. His blood work was a little bit slanted, but with in the limits, IGG over normal and AIG below normal. All the other tests came back normal and it took forever to see the doctor. I saw my son fading away before my eyes. I did research of my own and came to the conclusion that not only was he celiac disease but my daughter and I as well. I put all three of us on a diet after spending months of going down the medical path, and have never felt better. But, in the back of my mind wondered if I had done the right thing. Now, I feel better and can stand up to people that say, “You have not been tested and your son's are normal. How can you be sure?â€

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    Guest Caroline

    Posted

    my 9 year old has had a negative celiac test result, but there is no doubt he is better on a gluten free diet. whenever he has even as little as a continental breakfast, he is throwing up at night. Without gluten he is fine. I guess we will just have to be retested in due course.

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    Guest janet Lyngdal

    Posted

    Logical approach and exactly what I have done with my son against the advise of our pediatric GI who suggested his incontinence problems were due to constipation. We knew this wasn't the case. Within 2 weeks of a gluten free diet his situation improved 100%. He also has had to see a pediatric physical therapist who has been re-training him to use his pelvic muscles. Between the gluten free diet and PT he is a completely different more confident boy.

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    Guest Leslie Stevens

    Posted

    Finally! A common sense approach to diagnosing celiac disease. Current tests for celiac are not sensitive enough to detect early stage celiac. Dr. Ford rightly listens to the symptoms presented and acts upon them, as opposed to disregarding them as irrelevant. One would think that when a gluten-free diet eliminates negative symptoms, that this challenge would speak for itself. (Isn't this the case with most conventional medicine?)

    One exception to the article however:

    my daughter was BORN WITH A PATCH OF EXCEMA ON HER KNEE and was later diagnosed with dermatitis herpetiformas (a type of celiac). This demonstrates that the celiac fetus experiences damage in utero, when its mother eats gluten, damage that can even be permanent (witness ADD, ADHD, aspergers, autism, schizophrenia- the so called austism spectrum).

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    Guest Jane Lynn Cooper

    Posted

    This article has given me the conviction to put my youngest on a gluten free diet.

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    Guest Rosemarie Corsner

    Posted

    My adult daughter has been diagnosed with celiac disease. My two grandchildren and I have the gene and chose to go gluten free, dramatically increasing our quality of life.

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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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    References:
    Kuitunen P, Savilahti E, Verkasalo M. Late mucosalrelapse in a boy with coeliac disease and cows milk allergy.Acta Paediatr Scand.1986 Mar;75(2):340-2. Bardella MT, Fredella C, Trovato C, Ermacora E, Cavalli R, Saladino V, Prampolini L. Long-term remission in patients with dermatitis herpetiformis on a normal diet. Br. J. Dermatol. 2003 Nov;149(5):968-71. Shmerling DH, Franckx J. Childhood celiac disease: a long-term analysis of relapses in 91 patients.J Pediatr Gastroenterol Nutr. 1986 Jul-Aug;5(4):565-9. Chartrand LJ, Seidman EG. Celiac disease is a lifelong disorder. Clin Invest Med. 1996 Oct;19(5):357-61. Rostami K, Kerckhaert J, von Blomberg BM, Meijer JW, Wahab P, Mulder CJ. SAT and serology in adult coeliacs, seronegative coeliac disease seems a reality.Neth J Med. 1998 Jul;53(1):15-9. Hudson DA, Cornell HJ, Purdham DR, Rolles CJ. Non-specific cytotoxicity of wheat gliadin components towards cultured human cells.Lancet. 1976 Feb 14;1(7955):339-41.

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