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

    How Early Can Celiac Disease Be Diagnosed?


    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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    I just wanted to add that I was a chubby, healthy looking child with all the typical digestive issues of a celiac. I missed being properly diagnosed as I wasn't presenting with the typical thin body. A percentage of celiacs have a weight problem (can't seem to find anyone to address that). It took me 28 years of poor health to get the answer I needed. Go ahead and try out a gluten-free diet if your child has digestive issues - you may be pleasantly surprised.

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    I have celiac and have 3 children that were diagnosed at various ages. One at 5 after suffering severe undernourishment, one at 10 after months of belly pain, and one at 1 year after his first introductions to gluten. They have all followed a gluten free diet for some time and upon accidental exposure all have suffered the Celiac distress.

    I agree with what the doc says, however I also believe that restricting a child to a strict gluten-free diet is not a wise decision if Celiac is only suspected and not confirmed.

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    A great article. I was diagnosed with celiac disease about 2 months after the birth of my first child after suffering constant nausea and vomiting from 2 days postpartum on. I went gluten free immediately upon diagnosis but continue to suffer from delayed stomach emptying although as time passes it seems to be getting better. Nerve damage due to the celiac disease? Impossible to confirm for sure, but my father and grandmother also both presented with nausea and vomiting for years before being diagnosed and then improved on the gluten free diet. I was born in 1969 and throughout my life suffered various digestive discomforts - pain, intermittent loose stools, vomiting in the middle of the night for no apparent reason. The doctors back then told my mother I was just a nervous kid with a touchy digestive system. Could I have been saved years of discomfort and then the horror of being so ill after childbirth had the doctors looked harder when I was a child? I'd say yes. My daughter was also born with a midline birth defect even though I was the picture of the perfect pregnancy (took my pre-natal vitamins, ate great, exercised, zero caffeine, zero alcohol, zero medications, non smoker, etc). Another impossible definite link, but I wonder all the time if things could have been better for her had I not gone through the pregnancy with undiagnosed celiac disease. The what ifs are heartbreaking for me, I'm just so happy that this disease is being recognized earlier these days giving kids a fighting chance! My GI doctor is working closely with me to be sure I'm remaining symptom free and on treating me for the slow stomach as it (hopefully) continues to heal. My daughter's doctors and I are monitoring things closely where she is concerned. I'm determined to keep her from suffering as I have, as are they. Thank you for this article, and thanks to my doctors and my daughter's doctors for their continued thorough and caring approach.

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    Good advice. And Entrolab.com can do saliva and stool testing so that way you can see if your child has the infamous Celiac gene and just take them off gluten. I'm ordering test next month. I have celiac, and I'm suspecting my son does too. Not sure about daughter, but am now taking her off gluten to make sure she doesn't get more damaged in case she does have celiac....Blessings MOMS! it is a toughy, but worth the battle. I'm smaller then my mom and sister and they are both 5.9' and I'm 5.2'...always constipated, bloated, etc .. not fun to put our kids through...

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    I too, am very touched by the notion of 'preventative medicine'. I am the mother of a 9 year old girl hat has suffered with belly aches, diarrhea that was beige, hypothyroidism, and other ailments (sick w/o being sick). She had two endoscopies (one at 3, where the Dr. came out and said she had celiac, but then called 4 days later and said that the biopsies appeared normal) and (one at 8, where the Dr. came out and showed us pictures of the lymphoid hyperplsia on her duodeum). Ultimately, ALL biopsies came back normal. We had a very difficult time, but we chose to 'try' the gluten free diet, since that was the cure if she did have celiac. It has been 3 months now, and she has gone from 41 pounds to 46!!! She has not grown that much since her first year of life. I am a believer in the 'try it and you'll see'. If she gets trace gluten, we know because she wakes up out of her sound sleep, and she sits next to the toilet and waits to throw up---but never actually does. Wholeheartedly, I believe that if you sense it, feel it, or question it, there must be a reason for the wondering if 'x' might have celiac. The diet is NOT hard to manage once you start it. You find the 'staples' and stick to what you like. I appreciate forums and articles like this that help to open up lines of communication and education in people with possible celiac disease.

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    Doctors like yourself are a Godsend. Our son is 7 and has been very ill his whole life, constant bronchitis allergies, bladder incontinence, gut ache very thin, pustles skin irritations, up 3-4 nights a week for seven years you do begin to think doctors don't KNOW ANYTHING. Had blood tests and showed up celiac possible we try very hard to stay gluten free, I just found out my levels were raised, I have also been sick all my life and the symptoms got worse through pregnancy, all my children suffer in some health respect we are all going gluten free. Makes sense thank you God I'm not crazy.

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    Guest Kristine Chateauneuf

    Posted

    Thank you, Dr. Ford! It is always reassuring and enlightening to read your articles and to know that my decision to be gluten free - after years of severe skin outbreaks, mouth ulcers, anemia and tingling in the hands and feet, stomach aches ... - is valid even if the doctors I see don't agree (I'm still looking for a doctor in France!) Now, my 5 year old daughter is starting to have skin problems like myself. Her pediatrician agreed to prescribe blood tests and we are currently waiting for the results...

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    We just recently had a baby boy. His big sister is 4 1/2 years old and was diagnosed with celiac sprue at 22 months. We had her antibodies tested, and put her on a gluten free diet from the results. She turned around in days. We opted to forgo the biopsy since she made such a remarkable turnaround.

     

    For our newest son, it was important to make the determination if he was at increased risk since it's not conclusive as to whether or not breast milk allows gluten to pass through. So, since we're breast feeding, we needed to know if he was likely to develop the disease.

     

    We had HLA's (Human Leukocyte Antigen) DR3, B8 and DQ2 tested in our son's genome. He came back positive for 2 of them, which put him at a 16X increased risk over the general population. Therefore, we're going gluten free for my wife and son until he's old enough to decide whether or not he would like to challenge the diagnosis.

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    I too have suffered allergies, stomach aches, constipation, etc. all of my life. It was only after losing several pounds in one month, getting dizzy and unstable on my feet, that my oldest daughter insisted that I ask my doctor what was the matter with me. The doctor sent me for barium swallow, which showed some damage to esophagus,then to gastro for biopsy, which of course showed well developed celiac sprue! This was when I was 68 yrs old. The matter of undiagnosable anemia several years ago became quite apparent in retrospect. My other allergies have become rather quiet since I started going gluten-free. Two of my children have autism-spectrum disorders, one with schizophrenia too, and one with aspergers. His daughter is also autistic with casein problems. They have yet to see that it might be a darn good idea to take her off of gluten too. I am now 73 and have osteoporosis, osteopenia, spinal stenosis, borderline diabetes, some blockage of right carotid artery and allergies to three different antibiotics! But I feel fairly well and have been told I don't look my age (which is always nice)!! Thank you for the excellent article.

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    Very good articles - my little daughter is one year old and from day one she is on mothers milk and she used to cry a lot and have sleepless nights and ever time we phoned the doctor they were saying that it was normal colic pain. Now she is 13 months and I think she is not doing well according to the weight chart. Recently we started her for day care and everyday we have complaints that she is having smelly diarrhea 3 to 4 times a day.

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    Hopefully Dr. Ford can comment on HLA testing. I was under the impression that the risk for Celiac for those lacking the bad HLA types was very slim, such that a negative DNA test might pretty rule out the chances of celiac developing, i.e., a greater than 16x difference in probability.

     

    In other words, would you not have to worry without the bad HLAs??

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    I was diagnosed with dermatitis herpetiformis and Celiac Disease in 2007. I had atypical symptoms for most of my life, so I do not blame anyone for missing the diagnosis. My oldest son was subsequently conclusively diagnosed with Celiac Disease - positve EMA sealed the diagnosis. My infant son, however, had negative blood work but had terrible eczema and diarrhea that began while he was nursing exclusively. When we introduced cereals, he began vomiting, so we stopped and did allergy testing - all negative. When I went off gluten, my nursing child's eczema (present for several months) cleared up over a period of a few weeks. He may have negative blood work, but he is clearly sensitive to dietary gluten. A child who vomits cereals and has terrible skin rashes is sick with something - and negative blood work did not convince me or my child's pediatrician otherwise.

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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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