Jump to content
  • Sign Up
  • Join Our Community!

    Do you have questions about celiac disease or the gluten-free diet?

  • 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


    User Feedback

    Recommended Comments



    Guest Vivian Hudacek

    Posted

    Excellent article! My 27 year old daughter was diagnosed 6 weeks ago through blood testing, followed by endoscopic biopsy. She is doing so much better. Thank God for perceptive doctors because her diagnosis began over a year ago when she went to the doctor for a sinus infection that seemed to be turning into bronchitis as well, problems she has suffered all her life, despite being very health conscious. That doctor asked how long she'd had thyroid problems, a question which shocked her. Testing resulted in a diagnosis of hypothyroidism over a year ago. Then, after a couple of miscarriages, a very wise reproductive endocrinologist suggested she have the Celiac blood test, which was positive. My mother & I both had miscarriages, & I had infertility problems. This doctor routinely tests his miscarrying patients for Celiac. Though my blood test was negative, I'm going next week for the biopsy. My own mother had lymphoma of the bowel & stomach problems all her life. Hearing problems run in our family, as do flat buttocks, incontinence, bronchitis, & more. I am calling a friend this morning to tell her about the possibility of the link to autism because her son is autistic. Thank you for a wonderful site!

    Share this comment


    Link to comment
    Share on other sites

    I hope other physicians are listening and reading articles and comments like the ones above. As a mother, I would do anything to protect my children. The journey to wellness for my daughters was not quick or easy and it was only through my perseverance that we would find the answer that a solution came so quickly. It took almost a year and 3 doctors before my daughter was tested for food allergies for her constant stomach aches and leg pain. Wheat of course was among the test results and we saw instantaneous results by removing wheat. Subsequently, allergists said she didn't have a wheat allergy (although after putting her back on wheat to challenge his assumption she projectile vomited all weekend). He reluctantly referred us to a gastroenterologist. Nine months into a wheat free diet, the gastro said the level of gluten in her diet was enough if we would give her a little bit of additional wheat to aid in testing/diagnosis of celiac. She was completely nuts (bizarre behavior, extremely disconnected from real world, lethargic)[school calling everyday -both the nurse and teacher] and in pain, on the little bit of wheat we gave her. The tests came back negative (i.e. only 'prob is a leaky gut') and we were referred back to an allergist. Of course, we immediately took her back off of wheat. Another 8 months and a new school year, academic and ADD problems in school continue (all while I know she is very intelligent) lead to talk of campus assessment team intervention and remedial classes. I believe there is more to her dietary problems and seek out a dietitian well known in ADD/ADHD circles to help me figure out the issue... after taking the history and looking her over, she concludes the culprit is gluten. Not a big stretch from wheat-free and so we throw out the Rice Krispies and 'wheat-free' breakfast bars. The result was as dramatic as the removal of wheat 2.5 years earlier. She was given the 'top cat' award within 2 weeks in her classroom and graduated from 1st grade 6 months later near the top of her class after being at rock bottom. I am much more wary of the little bit of gluten in the form of barley malt that had so sabotaged her academic life because it doesn't tell us directly (harsh stomach pain, etc). Almost 3 years after the onset of symptoms we have the answer and not through the help of those 5 doctors with the exception of #6, an osteopath (who at least tested for food allergies, although not celiac).

     

    We are much healthier than ever and certainly much happier on a gluten free diet. Perpetuating the myth that its too hard or unfair to subject a child (or anyone) to a gluten-free diet is irresponsible and wrong. Dr.Ford, Thank You! I can handle the criticism of many who simply do not know these truths, but it feels good to know you're out there advocating for change in the diagnostic criteria and helping so many to end needless suffering.

    Share this comment


    Link to comment
    Share on other sites

    Great article! I was 60 years old before I was finally diagnosed with celiac. It certainly is not the end of the world. There are plenty of great foods to eat if you will forget processed, sugar, some starches, certain grains including wheat, and usually lactose. That leaves lots of foods to choose from and many companies out there that have a variety of choices. It is challenging, but well worth the effort. I wish someone had put me on a gluten-free diet years ago before I went through years of pain and discomfort. My discovery led to two of my sisters realizing the answer to their digestive problems. After gene tests showed both my parents had a Celiac Disease gene each, the puzzle was finished. Keep up the good work Dr. Ford. Maybe other doctors will catch the vision of the wonderful progress you are making! Lynn

    Share this comment


    Link to comment
    Share on other sites
    Guest Arthur M. Fell

    Posted

    Exactly what the doctor ordered! This article is right on target. I have been suffering for 30 years and increasingly narrowing my life with many extra systoles. Three months ago after 30 years of misery my wife suggested that gluten was the problem I had the tests - all negative, but I am sure they were false negatives because I've been gluten free for nearly 3 months and all symptoms disappeared and I feel great. I read about some people complaining of extra systoles - well, mine disappeared when I went gluten free. Thanks for this article.

    Best, art

    Share this comment


    Link to comment
    Share on other sites
    Guest Crystal Davidson

    Posted

    I spent many miserable years undiagnosed because I was overweight. For over a year after I “figured it out on my ownâ€, I was told that I couldn't have celiac disease because I was overweight. After paying for the genetic test myself, I discovered what I had known for years. I went completely gluten free and never even bothered to do the challenge. My symptoms are SEVERE when I even get a trace of gluten so, to me, the biopsy is unnecessary. What really upsets me is that my son spent his first year of life throwing up 5 – 10 times per day and no doctor even suggested celiac disease. I had to feed him every 1 ½ hours just so he wouldn't cry from his belly aches. After he was done with the formula (contained gluten of course,) and switched to whole milk, I finally discovered three foods that he always kept down – canned green beans, fruits and Gerber hot dogs. I swear that is all he ate, three meals a day, for six months until he could eat adult food. After I got diagnosed, I felt like such an idiot for not pushing the doctor to help him. Every year, he gained a few more symptoms. First, it was incontinence, then belly aches, then circles under his eyes, excessive flatulence, and finally loose stools. He complained of hunger all the time and ate like a horse. After my diagnosis, I immediately took him for the blood test, which I was told was normal. I took that at face value, but, after our house went gluten-free, he started growing, stopped having most of the symptoms and was more energetic than I had ever seen him! This summer is the first summer where he didn't go to day care (NO gluten free choices there) and he's improved so much from eating 100% gluten free that I'm going to tell the school to keep him on a gluten free diet. I am glad to know that the blood test that the pediatrician acted like was irrefutable doesn't even reveal early celiac disease. I know now I have a leg to stand on!

    Share this comment


    Link to comment
    Share on other sites

    My (now 7 year old son) started experiencing extreme abdominal issues at the age of 5 but because he is very tall for his age, his pediatrician refused to believe he could be a Celiac Disease kid. We did the initial blood test that came back borderline however they failed to inform us! We went on thinking that it was normal because no news is good news as they continuously say to us. After seeing a specialist, a second blood test was done and came back negative for Celiac Disease and after much frustration with our Canadian health care system, we were finally put in touch with Dr. Luepnitz in Texas who has changed our son's life! A simple test by Enterolab determined that both my husband and I each carry the Celiac Disease gene and that my youngest son in fact has both. We immediately put him on a gluten free diet - even though he does not have the disease but rather the sensitivity - and have had no issues since. We feel so thankful to have caught this so early on - he's adjusted amazingly well and at the early age of 7, he's says, 'I'm cool with it Mom - don't worry about it'. Many thanks to Dr. Luepnitz and Enterolab.

    Share this comment


    Link to comment
    Share on other sites

    My husband and I are currently trying to decide whether our 3 year old should undergo a gluten challenge in order to conclusively diagnose Coeliac as she has the gene and her father is a confirmed Coeliac. She has had problems since birth (Colic and loose stools). The worst of which is the fact that we can actually see what she has eaten in her stools. She has been gluten free for 7 months and is finally thriving (and sleeping though). Her hair and nails are growing and she is becoming more sociable. After reading this article, I see no reason why I should put her through the pain and agony of eating gluten again. It is refreshing to read an article obviously written by someone with wisdom and a broad mind. Thank you.

    Share this comment


    Link to comment
    Share on other sites

    Our granddaughter has had problems with not feeling well for about the last 6 years and she is now 9. Maybe she had problems before then but kept it to herself. Then the last few years she started missing school and blaming it on tummy pains and she had fevers just like the flu bug but too often for that. Her mother took her to a few good Doctors that did nothing to say, but after seeing a woman Doctor from Iran who told my daughter that she wanted her to see an Allergy Specialist. She did and they did a few tests and she scored real high for Celiac Disease! Then the Doctor wanted to do the biopsy but my daughter said no after reading about it. She is on a strict gluten free diet and doing really well! Doctors, why not test all the kids that have this complaint ??

    Share this comment


    Link to comment
    Share on other sites

    Wow! How we all struggle. I was lucky enough to read a book 20 years ago that showed the lack of fat pad on the buttocks (I call it a dimpled butt!) that revealed that my husband and sons had issues with gluten. I suggest gluten intolerance to anyone I know who is struggling with their health. My sons were tested but because they had been a low gluten diet for years, they didn't show it but my pediatrician, bless her heart, thought that Mom knew best and if I thought it was a problems, I was more likely to be right than the test. My kids also fell off the growth chart until we took instant oatmeal off the breakfast menu.

    Share this comment


    Link to comment
    Share on other sites

    Thanks for the article and all the comments. I have struggled with whether I did the right thing by putting my little 2 year old daughter on a gluten free diet. Before that, she had never had a solid bowel movement, constantly had black circles under her eyes, and would often wake up crying because her legs were 'hurting.' These things immediately cleared up once she stopped having gluten, but despite this I still have people such as grandparents, my day home provider, and others who refuse to admit that being gluten-free is making a difference for her! It can be very undermining. Adding to the frustration is that my blood test also came back negative, and no doctor seems to know why I have reoccurring joint pain, fatigue, and loose stool. All of these symptoms have significantly improved since I became gluten-free.

     

    On a final note, my daughter was exposed to a large dose of gluten on the weekend. She projectile vomited the first day, and for the rest of the week has had terrible black circles under her eyes, has been very tired, and her skin color has alternated between pasty white or yellowish. I no longer have any doubt and will never knowingly give her gluten again.

     

    Thanks to all these articles, I have felt very encouraged and feel even more certain that I am doing the right thing.

    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...