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



    My son had operation 9 months ago to remove a meikle divicticulum. His iron levels haven't came up to normal and he is still having pains and still very thin. Now the doctor is sending him for biopsy for celiac disease, I am so confused as don't know if his first operation was really necessary and now doctor has told me to keep him off bread pasta but not to go and buy new wheat, etc. free foods until we have confirmation. But if I take him off gluten just now will that not show a negative reading? So confusing!! Help!!!

    Share this comment


    Link to comment
    Share on other sites

    I find the gluten free foods to be so spicy. I'm trying to find foods that are not. Your article was very good. I'm 83 years old and have lost weight--I am only 80 lbs.

    Share this comment


    Link to comment
    Share on other sites

    My son was diagnosed by biopsy at 18 months. It was a year before we had that diagnoses. No one would listen to me and his blood test was negative. When the GI doc came out after the biopsy he apologized because he really didn't expect to find anything. They found 9 ulcers in just one picture. My son was so sick but was 97% in growth so they did not suspect it. Now almost a year later he is doing great and my husband was also found with a positive biopsy. When my son was diagnosed he had negative blood tests, the biopsy was positive and the DNA analysis for the gene was negative. The whole thing was a mess. Now we are keeping a very close eye on my daughters and I refuse to let them suffer!!

    Share this comment


    Link to comment
    Share on other sites
    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.

    Did your son require any physical or occupational therapy? That is what suddenly happened to my son. Along with speech he regressed (gluten ataxia) just trying to figure out what was going on with him. With a family history of celiac disease I insisted on a celiac panel and found the beginning of my answer.

    Share this comment


    Link to comment
    Share on other sites

    I wish more MD's subscribed to this view. However, I also wish that Dr. Ford would have given some credence to fecal testing (it is often poo-pooed - no pun intended! - in the medical community)...it saved my son's life. He was so sickly and his pediatrician ran all sorts of tests with no result. I am celiac and yet his doctor refused to explore gluten as an issue. I finally convinced him to run the blood test, which came back negative - go figure, being that he was 18 months old with barely enough time to destroy his gut. But it wasn't until my naturopath tested his feces that we found the antibodies. His number was 3 times that of mine - and he had only been eating wheat for 8 months. No doubt antibodies would have shown up in the blood eventually, but that emaciated, rashy, chronic diarrhea, baby boy got immediate relief from a gluten-free diet - and didn't have to wait another minute, let alone 5 years, to feel better. He is a healthy, thriving 7 year old now and we have successfully kept it out of his blood all these years. Every 2 years we do another fecal test to see where his numbers lie just to keep tabs. Every time I hear of a sickly child diagnosed in the blood, I thank God for my naturopath and fecal testing - and pray that that eventually all children will be blessed with early diagnosis.

    Share this comment


    Link to comment
    Share on other sites
    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).

    Great article! Yes Leslie Stevens I agree! I believe you can be born with celiac! Not noticing any dairy or celiac problem I might have, when I was pregnant with my second child I had issues. Every time I drank milk I vomited, and when I had Ice cream I was sick to my stomach. ( I had "morning sickness" All day almost every day!) When my son was born he vomited every time he ate. During and after feeding. Now he is three, he suffers from abdominal pain-while sleeping, diarrhea and never wants to eat because-'that hurts my tummy'. I've been told awful things by allergist and also told 'it seems like he has a problem but I can't help'. He's had tubes put in his ears- chronic infections. Has speech issues.

    We are off dairy and are taking MiraLAX for a diagnoses of constipation with a diarrhea something or other...we have a follow up appointment with the GI doctor (whom we've seen once so far-finally!). My son's celiac blood test was negative. (not sure he was eating many wheat products at that time) I am going to request more tests.

     

    Thank you ALL MOTHERS for your comments!! I thought I was ALONE & CRAZY!! I'm not alone! And neither are you!

    Share this comment


    Link to comment
    Share on other sites

    I don't agree with this article. I was born in 1987, Children's Hospital of Boston Massachusetts were able to diagnose me with celiac disease. I'm 26 years old, registered and listed under the first 100 people to be diagnosed with celiac disease and have been living with this disease since child birth (26 years). I know the ins and outs of this disease and those who say you can not be born with celiac disease are falsely wrong!

    Share this comment


    Link to comment
    Share on other sites

    Thank you for the article . I am trying to work out what to do next as I have many symptoms but because my blood test came in negative my doctor doesn't think I can have it. I'm sure my extremely itchy rash is Dermatitis Herpetiformis and wondering if I should fork out for a dermatologist to take a biopsy.

    Share this comment


    Link to comment
    Share on other sites

    Took over30 years for me to get a doctor to listen, the man who tested me suffered 50 years and he is a D.O.. My daughter´s pediatricians refuse to test for celiac, they said the diet is silly. The medical community is ethically bankrupt!!! There´s not enough money to be made if diet is the cure. They just give NSAIDs and painkillers if you suffer celiac symptoms. Nice to hear that some of you have found relief for your children. My 4 yr old has it as well, she had constant UTIs, asthma, constipation etc. They would only give her steroids and laxatives, she was so ill!! My experience with medicine leaves me with such a bad taste in my mouth that we trust no one!!! H pylori, I believe, may be what triggered my disease as a baby, but ????

    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...