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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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    This article was just what I needed to hear. I am sort of new to all the celiac information. My son who is now almost 5, has had severe skin issues and allergies since he was 2 months old and some behavior issues too. He was even hospitalized at 2 years old for abnormal symptoms, no growth and sever skin issues. We went to numerous doctors, naturopaths, allergists, pediatric dermatologists, etc with not a single suggestion of gluten-free. Later, at 4 years old, he was diagnosed with type 1 diabetes. They told us that celiac was common in Type 1 diabetic children, but his test from the hospital was negative. After we got his diabetes managed, I started reading a little more on my own and talking to people. I started to realize that it may be hard to diagnose, and then I also read that skin issues may be related to gluten. At that point, I took the view point of this article. Why wait any longer to see if he might develop celiac or if the test comes back positive at a later time when his health is so fragile. My son was obviously unhealthy. We had done wheat free for years, but not gluten free, so it was really only a few adjustments in his diet. After 2 days, his skin was clearer and smoother than it had been his entire life. Now I'm wondering if it may have had an affect on his diabetes as well. When I told his doctor about what we did, he said we should put him back on gluten or he will never get an accurate test. I thought he was crazy! Then when he examined his skin, he said not to put him back on gluten. No kidding! I wish I had known more sooner so I could have eliminated and prevented so much of my son's suffering, and I hope these kinds of articles help more people who are suffering.

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    Great article. I also had gut problems all my life. No Dr could find out why. Finally in my late 30's

    they found I was lactose intolerant. Changed my diet and still had problems (diarrhea). At the age of 53 I had a small intestinal stage 2 cancer removed.

    GI Dr. tested me for sprue and sure

    enough I had it big time. I have been gluten free for 10 years and no recurrence of cancer- Praise the Lord! Don't let Dr. tell you you are imagining things when you know something isn't working right.

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    My 12 year old daughter's IgG test was positive for gluten and dairy. We never tested for celiac but it seems a forgone conclusion. This doctor is right in his approach. I wish we had known back when the stomach pains started.

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    'When you are first born, you cannot have celiac disease as you have never been exposed to gluten.'

     

    This answers one of several questions of harm in the case of a pregnant woman with celiac - Is the baby in danger if the celiac mother has the autoimmune response to gluten? Even if the baby is not actively responding to gluten via its immune system, is there anything from the mother's system response that could affect the fetus.

     

    And if so, should celiac testing be part of prenatal care??

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    I have heard say that celiac is a genetic disease. Is it only a genetic disease? I'm wondering if it wouldn't be easier to see if these children have the gene for the disease before doing an endoscopy and/or waiting for bowel damage? I realize that there are wheat allergies etc. that might not be genetic. But then my next question is do genes change as we get older? If people don't have the gene for it when they are young, there is no way for celiac to develop later on. I have celiac disease and I have the gene for it although it did not develop until after I was an adult.

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    Well, how to help save your child's life armed with this information and give them a healthy childhood versus a sickly one; later translating to their adult life. Bravo for Dr. Rodney Ford to take a proactive approach in helping the worldwide community to become knowledgeable about the effects of gluten in those of us that are susceptible!!!! We seem to have a long line of 'non'-celiac gluten problems (4 generations worth) in our family. Besides the general unwell feeling, gut symptoms and being so fatigued as to feel like a walking dead body, gluten disease in our family has translated to autoimmune disease (Primary Hyperparathyroidism--which, among other things, caused Osteopenia in me) and neurological disease -- Spinal Cerebellar Degeneration with ataxia and neuropathy components. In reading some comments by other readers, I am also now wondering about the hearing loss prevalent in our family--is this 'nerve' related. There are also cases of colon cancer and esophagal cancer, said to have links to gluten. My adult daughter and I, within the last two years, have both been diagnosed as having 'non-celiac' gluten intolerance (sensitivity). I have had the small intestinal biopsy which ruled out celiac (at that time). Thank goodness for my new gastroenterologist (who says that I am coming in under the radar for testing for gluten problems that are non-celiac as there are no 'specific' tests) and for my genetic neurologist, as well as our new family doctor, who are progressive in helping us find the answers to our sick bodies. They are aware of other problems with gluten aside from celiac disease. We do so well on a gluten-free diet; it is like giving 'life' to us. Just a comment---In the first instance, taking gluten away with the elimination diet, one starts to feel well and can easily take this for granted because we are feeling well (and forget what it is like to feel so bad). However, the conclusive answer comes with the challenge diet of putting gluten back into the body----it is like the final summation and tying the whole scientific experiment up in a bow--------because it is then that one realizes how sick gluten makes our body feel---and this doesn't include the insidious progressive damage that we can't see going on inside of our bodies. I have a 'low' tolerance for casein; my daughter seems OK with casein. Wishing good health to others in their quest.

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    I have come to the conclusion that it is a form of 'child abuse' if they are not taken off gluten when damage is being done and symptoms are present. With stool testing available that WORKS (whether Dr. Fine has his testing 'peer-reviewed' or not), who cares whether it's full blown Celiac Disease or not. Gluten sensitivity can do as much damage if not more with other issues besides intestinal problems - namely neurological in nature. Parents - open your eyes and don't wait. The earlier they're taken off, the less they will depend on all the pizzas, fast foods, etc. which are unhealthy anyway.

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    Like the other responses before, AMEN! My son had fallen off his growth chart starting at 6 months old (when he started eating wheat baby cereal) and had chronic diarrhea since day one. Finally at 2 1/2 after 2 different pediatricians telling me he was fine, I went to a 3rd who agreed with me, he should be tested for Celiac (I had been researching it). I was sent to a Pediatric GI who ran the panel with many other tests for allergies, but the lab made an error and didn't run the Celiac Panel. We then went to a Allergy/Asthma specialist who ran the Celiac Panel and diagnosed Celiac based on a high IGG result (IGA was normal). He then recommended a gluten free diet. Based on this article, IGG results indicate a problem and other tests become positive later as the disease progresses. When the Pediatric GI and Pediatrician received the results, they DID NOT accept the diagnosis since only the IGG was high (they claim this means nothing on its own) and the Pediatric GI insisted that we put him back on gluten otherwise his 'life would be too difficult' and that we should come back in a few months after eating gluten and she would retest (using her lab). We didn't and in 5 months he has grown nearly 3 inches and the diarrhea is gone making it possible for him to be potty trained. Our pediatrician agrees that if he feels better, there is not need for him to go off the gluten free diet & we should keep him on it. We can challenge it later in life if we need. In the meantime, I have been debating on whether I was doing the right thing. I didn't want him to have to eat differently then the other kids in preschool or miss out on pizza after soccer games. But today I read this article and all the comments after and I see I am not alone & am doing 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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