Jump to content
  • Sign Up
  • Join Our Community!

    Get help in our celiac / gluten-free forum.

  • 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


    User Feedback

    Recommended Comments



    I'm 43 yrs old. I started with taking an allergy test in my 20's showing I was allergic to the world. In my 40's I had a blood allergy test done and it showed only a few allergies. But I was having low and high blood pressure reactions, which I read in an article, are the ultimate form of allergy reaction. Pretty much life or death situation. I was in the hospital and was eating only soy cheese and macaroni. One day I decided to eat Cream of wheat (2 spoonfulls) and I almost died. The doctors couldn't figure it out. My husband had just read about high blood pressure as being one of the symptoms of gluten wheat allergy. I immediately went on the diet and am getting better. I have energy and lost 10 pounds in ONE day. (I was swollen that bad from the allergy). I haven't gotten tested but the proof is in my health. I thank my husband for helping find my cure, and a possible explanation as to why our son is autistic.

    Share this comment


    Link to comment
    Share on other sites

    My children's pediatrician took one look at my son and diagnosed him with gluten enteropathy after I had been going to a different pediatrician for 6 months and my son was getting sicker and sicker. I called the Celiac association in CA and the lady who answered the phone had the audacity to suggest I put my son back on gluten so he could get the 'gold standard' blood and endoscopy because when he is 17 he might want to eat gluten. I told her he is free to make that decision when he will stay up bu himself with his belly hurting. As long as I have to stay up with him he will remain gluten free. He had a hgb (hemoglobin) of 5 and we were sent to the ER for a blood transfusion. He was 1 when we started to take him to Dr. Adan. Two when he went back to Dr Oyemade.

    I am happy to see someone in the medical community treating the patient and not the lab work.

    Share this comment


    Link to comment
    Share on other sites

    I just thought I would put my two cents in...My 5yr old was biopsy diagnosed when she was 9mos. old. She was born in pain and continued until she was almost 3ys. Comment #8 by Leslie Stevens mentioned about in utero damage to an unborn celiac. I feel that this was the case for me. I was told that medical journals would have to be rewritten and updated because my daughter was the youngest person to be biopsy diagnosed (who was also strictly breast-feed) and dying from malnutritional issues.

    Share this comment


    Link to comment
    Share on other sites

    I had been sick my entire life. My father was diagnosed with schizophrenia and my mother had serious issues with thyroid and skin conditions. My brother died from some liver problem at 12 yrs in the 50's. My dad passed away and his body was donated to Stanford University. My Mom was diagnosed with Celiac in 1995 at 80 yrs. I followed up with Stanford and they did a DNA on my dads tissue. He had all genes for Celiac and so did my mom. No wonder we all were so sick all our lives. Now my children and I are gluten free and doing very well. My siblings are also doing well but some won't follow the diet.

    Share this comment


    Link to comment
    Share on other sites

    I love a doctor with a common sense, practical approach to medicine. I went 40 years undiagnosed because no one ever thought about celiac disease. They said that only children get that and sent me to about 5 G.I. series over all those years. Told me it was my nerves! Ha! As a result my intestines have a lot of damage which cannot heal. But I feel and look well and have lots of energy.

    Share this comment


    Link to comment
    Share on other sites

    Thanks for the article, the comments are so real! I have read a lot about the diets that can help clear up the symptoms I was having, and I have not been experiencing any discomfort since I began a gluten free diet! I had been suffering from various allergies all my life, now I am feeling very healthy! I have only been on a gluten-free diet since June of 2006. Thanks again for being there for me!

    Share this comment


    Link to comment
    Share on other sites

    It is so refreshing to read this practicality from someone 'degreed' in the medical field. I have been on a gluten-free diet for over 6 years, though my endoscopy showed no damage, and feel better than I did all the years before. I feel it is especially important that this be watched for/discovered early in children due to proper growth & development. We all need to listen to our bodies & to the bodies of our children - the body does not lie!! I'm so thankful I found out about a gluten-free diet - it has changed my life and that of my children.

    Share this comment


    Link to comment
    Share on other sites

    I am an adult that went through the routine of my doctor not knowing what was wrong besides having GERD and my GI Dr. would not listen to me about what was wrong when I ate. So, I researched and put myself on the gluten free diet and I have been better ever since, with exception to find products that say Gluten & Wheat free only to have a reaction and see that in small print it was processed in a factory that also processes wheat!!! I am continually watching my children and my youngest son is having some issues so I am slowly adding gluten free to his diet.

    Share this comment


    Link to comment
    Share on other sites



    Join the conversation

    You are posting as a guest. If you have an account, sign in now to post with your account.
    Note: Your post will require moderator approval before it will be visible.

    Guest
    Add a comment...

    ×   Pasted as rich text.   Paste as plain text instead

      Only 75 emoji are allowed.

    ×   Your link has been automatically embedded.   Display as a link instead

    ×   Your previous content has been restored.   Clear editor

    ×   You cannot paste images directly. Upload or insert images from URL.


  • 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.

×
×
  • Create New...