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Which Children Should Be Tested For Celiac Disease?

This is a question that seems to come up again and again. I have personally struggled with figuring this out over the last few years as well, so I have read as much as I can about the topic of screening during childhood.

Earlier today I read a Medscape article titled “Celiac Disease: Which Children Should be Tested?” which was written by Lara C. Pullen PhD, and published online on March 23, 2015. In this article, Dr. Pullan does a great job of summarizing the current evidence and opinions about which groups of children should be screened/tested for celiac disease, and emphasizes that this is important because many children with celiac disease do not have symptoms.

For the most part, experts agree that children with risk factors for celiac disease, including those with a first degree relative (sibling and/or parent) with celiac, Down Syndrome, Turner Syndrome, William’s Syndrome, type 1 diabetes, and other autoimmune diseases, such as autoimmune thyroid disease, should be tested for celiac disease.  Likewise, children with overt symptoms of celiac, including recurrent abdominal pain, diarrhea, abdominal distension, and poor growth, should also be tested.

Dr. Rita Verma, a pediatric gastroenterologist from the Children’s Hospital of Philadelphia, is quoted several times throughout the article. Although Dr. Verma would prefer that ALL children be screened for celiac disease, she emphasizes that it is important for pediatricians to screen when they have even the slightest suspicion that celiac disease may be present. She sees many children with atypical symptoms of celiac disease in her practice, and these atypical symptoms can include anemia, chronic constipation, headaches, seizures, alopecia (hair loss), tiredness, pancreatitis, irritable bowel syndrome, and unexplained elevated liver enzymes.

At the minimum, celiac antibody screening blood tests should include the following: a total immunoglobulin IgA, anti-transglutaminase (anti-TTG) and anti-endomysial IgA antibodies. A child who tests positive for both TTG and endomysial antibodies likely has celiac disease and should be referred to a pediatric gastroenterologist for further evaluation.

Dr. Verma emphasizes that a dietary history should be obtained from parents prior to celiac blood screening, as some children between ages 2 and 3 may not eat enough gluten for their tests to be positive in the presence of celiac disease.  If this is the case a “gluten challenge” may need to be performed in order to get accurate celiac testing results. Please refer to this link for recommendations on the amount and duration of gluten needed for adequate testing for celiac disease.

For more on celiac disease in children and “high risk” pediatric groups, you can refer to my previous post from January 2014 that summarizes an excellent review article by Dr. Guandalini. He is one of the world’s experts on pediatric celiac disease and is at the University of Chicago.

Out of curiosity, have any of your children been diagnosed with celiac disease after having only “atypical” symptoms? Have any been totally asymptomatic?  If so, I would love to hear your experience(s) in the comments section. Thank you in advance for your willingness to share.

Also, if you are looking for a good laugh (or maybe cry) I encourage you to create a Medscape account and actually take the time to read through comments written by medical professionals–it will make you realize that how badly celiac awareness is needed in the medical community.

 

 

39 thoughts on “Which Children Should Be Tested For Celiac Disease?

  1. christine

    How about grandchildren? I would like to see my grand-daughter tested but don’t want to interfere.
    She is always hungry, very low weight/height and passes a lot of gas. I have celiac disease but was not diagnosed until 8 years ago and a lifelong list of illnesses.

    1. Jess Post author

      Hi Christine, Yes, your grand-daughter is also at risk of celiac disease, and it sounds like she deserves to be screened. Have you brought it up to her parents before?
      Jess

  2. Jeri

    This topic is heart wrenching for me. My daughter developed every symptom of Celiac Disease, one by one, until she reached a point where she was starving to death and almost required a blood transfusion from being so anemic and they were concerned about potential organ failure.

    We live in a very rural area and her previous primary physician totally blew even diagnosing that my daughter was sick. I took her in to the doctor once a month, every month, until she was 2 because I knew something had to be wrong, but I was just brushed off. When I finally took things into my own hands I went to see a actual pediatrician and within 48 hours we had a confirmed blood test. It the scariest time of my life. It has taken me a long time to get over the anger that my daughter suffered for so long because her physician didn’t even do a finger prick to see if she was anemic, which would have started the entire chain of events to diagnoses. This process has made me very aware of the lack of education towards Celiac Disease for some doctors.

    1. David

      Jeri, I am so sorry this happened to you and your baby. That is inexcusable. We too had a very bad experience with our first doctor who failed our baby girl. We filed a complaint with our state medical board against the doctor and they ruled in our favor and issued her a formal reprimand. She still has her license to practice medicine but we were relieved that someone finally listened to us and sided with us. Maybe this action will help other patients of hers get better care. Our baby girl is 15 months old now and is no longer anemic and is growing and thriving under the medical care of a pediatrician we trust.

    2. Jess Post author

      Hi Jeri,
      I am so sorry that your daughter suffered so long prior to her diagnosis and thank goodness for were able to advocate and finally get her tested. Thank you for sharing the story. I hope that someday, sooner than later, no children will have to go through such a delay in being screened. I wish you all well and thanks for reading.
      Jess

  3. Shauna B

    I am so glad our pediatrician was so quick to test my son and refer us to a pediatric gastroenterologist. We got a diagnosis within weeks of knowing something was wrong with him. He was only 16 months old. After that I found out I have it with atypical symptoms. Prior to that I would have told you I was perfectly healthy except a little (a lot) anemic and a little (a lot) tired. He had typical presentation, though, and his Marsh level was higher than mine even though I’d been eating gluten for 27 years longer than him.

    1. Jess Post author

      Hi Shauna,
      You are fortunate that your pediatrician was able to pick up the signs and symptoms and that your son was diagnosed at such a young age.
      Like you I was diagnosed until later in life (at age 33) but I also had unexplained anemia and fatigue back when I was a teen. I wonder if you would have ever been diagnosed with celiac if your son had not been?
      Jess

  4. Emilytwinmom

    I was diagnosed with celiac at 27, having had symptoms for 7 years. My teenage son was healthy as an ox until he hit puberty, and suddenly had all the symptoms and was diagnosed at 13. My twin 7 yr olds were tested during a gluten challenge 3 years ago, and both tested positive for the gene but negative for antibodies. They are growing, are very healthy, and have no gi issues (which were the main telltale signs for my oldest and i). So, I’m guessing they have a shot at developing celiac once they hit puberty, like their brother, so we have already talked with them and know to watch for symptoms. Our pediatric gi “specialist” was a joke, he barely knew a thing about celiac disease and we went to Atlanta!!!

    1. Jess Post author

      Hi Emily,
      Thanks so much for sharing your experiences. It sounds like you are on top of getting your kids screened, as well as continuing to have your twins monitored because of their genetic risk….who knows though, maybe neither will develop it. I really appreciate that you took the time to read and comment. Thank you!
      Jess

  5. Christine

    My 10 year old had no symptoms except lack of growth, I took him by chance to our DR for a general check up as I thought his iron levels may be low as he had dark circles under his eyes…turns out he is coeliac…no family history or any gut problems. Just lucky our doctor thought to test for it.

    1. Jess Post author

      Hi Christine,
      Your are fortunate that your doctor also knew to test your son based on his symptoms. I hope that he is feeling a lot better after going on the GF diet. Out of curiosity, has anyone else in your family been diagnosed with celiac after your son was?
      Jess

  6. Diane G

    My daughter did not have the typical symptoms. She had some delayed growth, stomach aches, and insomnia. I suspected a food issue and wanted some testing, and the CD tests were among the ones her dr. ordered. Her Ttg Iga was 118. She had her positive biopsy in June 2014. We also did food sensitivity testing and have since learned that her sensitive foods cause the same reactions for her as gluten does. I can’t really tell if she gets glutened, and we are very very careful. Her antibody level at 6 months post diagnosis were normal! She was 7 at the time of diagnosis.

    1. Jess Post author

      Hi Diane,
      That is wonderful that your daughter’s TTG IgA dropped from over 100 to the normal range. Congratulations!
      What other foods did you find she is sensitive to?
      Jess

      1. Diane G

        Thank you, Jess. We were pretty pumped when her numbers dropped so quickly. She is doing really well. She is also sensitive to almond, basically all nuts, pea, sesame, sunflower, egg, mustard, oats, olive, onion, rice, safflower, asparagus, banana, carrot, eggplant, oregano, soy, and dairy. The naturopath said the celiac caused the initial damage and eating the same foods with a damaged gut all resulted in leaky gut. She said the sensitivity list would be much smaller after a year of healing. We have successfully re-introduced some of the foods baked into foods and are working toward reintroducing the others. The plan we are following is working, and I am thankful. Thanks for commenting.

      1. Diane G

        Thanks, Vik. She had the Comprehensive 96 IgG Food panel from this link (Alletess Labs). There are other tests, but this is the one we did. Her naturopath ordered it. It was costly and isn’t foolproof, but it was worth it, and we have had great success following the plan. Many celiacs still feel bad after diagnosis, which is think is commonly due to food sensitivities to which they may be unaware. My personal opinion is that celiacs should also have food sensitivity testing. My daughter reacts the same way (insomnia and stomachache) to her sensitive foods as she does to gluten (although I don’t really know if she has been glutened since diagnosis, but I DO know she has had reactions to her sensitive foods). Without that testing, I would not have known what the issue was.
        http://foodallergy.com/tests.html

  7. Amy

    My girls (12 & 22) both tested positive for one or more of the celiacs/gluten intolerance genes but were not tested for active celiacs disease. Should they be tested if they do not have symptoms?

    1. Jess Post author

      Hi Amy,
      I think that most would agree that if they carry the genes that your daughters should both have a celiac antibody panel done, as many with celiac can have either atypical symptoms (or no symptoms at all). They would just need to be eating gluten on a regular basis for the testing to be reliable.
      Jess

  8. Dee

    We recently had our 7 yo tested after two episodes of explosive vomiting within two weeks and on/off abdo pain. Otherwise she is very healthy. I (mom) was diagnosed with CD after pregnancy but had gastro and neuro symptoms up to 5 years before that (it took a long while to get a diagnosis). It turns out our daughter has the CD genes but not active disease (although she has eaten mostly gf her whole life so unlikely to show up). We decided against a gluten challenge as we have concerns that once the autoimmune disease process switches ‘on’ enough to produce antibodies that it might be difficult to reign it back in. Despite 6 years of compliant gf I still have coeliac / autoimmune issues and I am now trying the AIP diet to settle my gut and immune system before slowly undertaking a process of reintroduction to determine if there are cross reactivity foods I can’t tolerate.

    1. Jess Post author

      Hi Dee,
      Thank you for sharing the approach you have taken to screening for your daughter. I feel like we are all doing the best we can navigating all of this, and although we have similarities, each of our experiences is unique.
      Not to muddle the waters any further, but you may want to look into mast cell activation syndrome (MCAS) as a cause of your persistent AI symptoms. I found out that I had it at about the 3 year GF mark and it explained why I had a lot of persistent symptoms after being strictly GF. There is no scientific research linking MCAS and celiac, but I’ve encountered too many people through this page that have both conditions that it seems like more than coincidence.
      Jess

      1. Dee

        Thanks Jess, i had not heard of MCAS before and with just a quick look at what this is does sound very similar to the types of difficulties I continue to have. I will certainly look further into this and discuss with my GP. In one of the articles I just read about MCAS, in the introduction it stated that people often move between many health practitioners without any definitive diagnosis prior to receiving the MCAS diagnosis. I can certainly relate to that. My waxing and waning symptoms seem to illicit an initial flush of health professional interest then after the usual tests and investigations come back ‘normal’ I see even the most professional and compassionate of eyes glaze over and the shrug of shoulders start and there seems less motivation to explore / investigate. So I tend to move on which is most frustrating and not my ideal, and I am sure can lend itself to the idea that I am doctor shopping which I am definitely not. I am sure many with AI issues can relate to that though.

        The most frustrating part of an AI condition is the overlap of symptoms – in addition to CD symptoms I can also tick many of the thyroid disorders (esp. Hashimotos/underactive), parathyroid, multiple sclerosis and Lyme. And now MCAS. Hopefully the AIP diet will lead to some relief of symptoms, after one week it is too early to tell but I certainly don’t feel worse and I already seem less bloated and have clearer and brighter eyes and a non-smell toilet!. It looks like most of the foods in the AIP diet would be low histamine too.

        Cheerio

        1. Jess Post author

          Vik! I am just seeing this now!!! MCAS is diagnosed through a series of blood and urine tests. If you ever see this reply, email me and I will send you info.
          I hope you’re well!

  9. Priscilla Bohannon

    I had for allergies when I was about 6 years old. I was allergic to wheat, barley, rye, and milk. As far as I remember. They did an elimination diet and after a couple of years I had no more symptoms that I’m aware of. I’m 34 years old now and began having neurological symptoms in 2013. The neuro did blood work and said I tested positive for celiac disease and was extremely deficient in vitamin d. My daughter has epilepsy- DX in 2009 at age 5 with benign occipital epilepsy. In December I had a black out spell. Over several years I had episodes where I would smell something burning, become fearful and lightheaded, and then it would go away. I finally mentioned this when I went back to neuro after my blackout spell and she said she thinks I have temporal lobe epilepsy and is treating me with keppra. I feel better but am wondering if my celiac was dormant for a while and affected my daughter and that is why she has epilepsy. Can anyone help me with this?

    1. Jess Post author

      Hi Priscilla,

      It is not unusual for people who are diagnosed with celiac during childhood to go into a period of “remission” before symptoms return during adulthood…this is why doctors used to think that celiac disease was something that patients outgrew. It is now known that people do not outgrow celiac and that it is a lifelong disease.

      There have been more and more studies over the last few years showing that celiac disease can cause neurological symptoms, including neuropathies, migraines, ataxia, and seizures.

      All children of people who have celiac disease needed to be monitored for celiac disease. High risk children should get tested via celiac antibody tests (blood tests) every 2-3 years starting at about age 3 or 4, and earlier if any symptoms develop. So it sounds like your daughter needs to be tested for celiac based on her being at risk since you have it. As long as she is eating gluten on a regular basis, you can probably call and ask your daughter’s pediatrician to order the tests.

      I hope this helps. Please let me know if you have additional questions.

      Jess

  10. Steffy

    My 24 year old son has just had extremely high positive blood tests for celiac. He has always had lots of gas. No diarrhoea really but maybe bulky bowel actions. I feel really bad that I didn’t make more of his bloating when he was younger and get him tested. He has grown normally but now I’m worried sick about the permanent damage that may be caused. He is going to a specialist but his own doctor has told him to start gluten free straight away. How soon will the gluten free diet help him?

    1. Jess Post author

      Hi Steffy,
      Thank you for writing. Please do not beat yourself up for not recognizing your son’s symptoms. I am a doctor and I did not recognize my own symptoms for over 10 years!
      In the grand scheme of things, he actually is much younger than many of us were when we were diagnosed, so I’d imagine that his risk of permanent damage is slim :)
      He should start to feel a lot better soon, as long as he strictly adheres to the GF diet. Most of us seem to feel significantly better within weeks to months.
      Best wishes to you and your son.
      Jess

  11. Beth

    I was diagnosed with CD just over a year ago, and as a matter of course had my (then) six year old tested (I didn’t think my 3yo would tolerate a blood test and had to wait a while to do that). She had no symptoms. Her AGA IgG was 128 – when ‘high’ is considered over 30. Based on her results she didn’t have a gastroscopy (I was keen to avoid one.)

    My younger daughter was tested (she had zero symptoms) and her results were not as concrete. I wish I had seen a gastroenterologist BEFORE doing her gluten challenge, because he told me that I had not really given her enough over the six week period.

    Both of them have the genes for CD (as far as I understand it, my older daughter has two positive genes and my younger has one). I have decided that while they are under my care they will be gluten free. SInce their tests I have taken them for a dental check up and was horrified to find they both had hyperplasia and my older daughter had decay and needed a filling. The hyperplasia is symmetrical (this ties in with the reading I have done about oral health and CD). I am a health-food freak and my kids have never had juice and rarely have processed foods/sugar etc.

    Anyway – despite having minimal evidence (except the dental issues) in my younger daughter, while she is on my watch, she will be gluten free. When she is an adult she can decide whether to do a better gluten challenge. At this stage I am satisfied that the likelihood of her having CD is enough to treat her as if she does. I suppose it would have been a more difficult decision if myself and her older sister did not already have it, but as it is, she is so little that it has become her ‘normal’.

  12. Cristi

    My daughter was diagnosed with juvenile idiopathic arthritis at age 9. I noted to the rheumatologist that constipation problems she never had before preceded the arthritis symptoms. So many people talked about g/f for autoimmune, we finally requested a formal Celiac screening. None of her doctors thought it was likely for “just” constipation, but it came back positive. In her endoscopy we also realized she was lactose intolerant and had reflux. 6 mo. later her symptoms are gone and the doctors will have us wean her from her arthritis meds this summer to if the JIA is truly in remission.

    The confusing part is her siblings who also have chronic constipation and milk sensitivity but a negative blood screening for Celiac. Our g.i. can’t scope them without more symptoms but keeps telling me to monitor. We all eat g/f when at home.

    1. Jess Post author

      Hi Cristi,
      Thank you for writing and sharing your story. That is such great news that your daughter is going to be able to be weaned off of her JIA medications this summer.

      If your other kiddos are GF (which makes total sense considering that you have a child with celiac in the home), their celiac antibody panel screens are going to be meaningless, unless they are eating enough gluten outside of the home (the last I heard/read was at least 1/2 of a graham cracker per day for 4-8 weeks prior to celiac blood antibody testing, and for 2 weeks prior to endoscopy).

      Our home is also GF because I am super-sensitive to cross-contamination, but my kids do eat gluten outside of our home, and I have made sure to “load them up” with gluten prior to the every other year celiac antibody panels to screen. I’ve found it’s especially helpful to schedule their blood tests right after the holidays (weeks of eating Christmas cookies, treats from neighbors, etc) or after family vacations.

      I hope this helps and I wish you the best.

      Jess

  13. Mandee

    My 20 month old was diagnosed with CD after several months of weight loss and diarrhea, and has responded very well to eating GF. She is beginning to gain some weight back, and the terrible bloating and irritability are gone! After her diagnosis, we had our other two children screened, and our son came up positive as well. His endoscopy confirmed CD even though he is totally asymptomatic. We are having an extremely hard time getting him to eat GF. At 8 years old, he is an extremely picky eater and can’t get over the taste of many of the GF foods I’m trying to substitute for his old favorites. He has been GF for almost a month and reports that he doesn’t feel any better or different on the diet, which makes it even harder to get him to comply. I sometimes feel like being asymptomatic adds another layer of complexity to the treatment.

    1. Jess Post author

      Hi Mandee,

      It’s been a few months since you’ve written so I hope that things are going better for your 8 year old. From what others have told me it can sometimes take months for school aged kids to adjust to the GF diet. We had to make our entire household GF in 2013, even though I am the only celiac, because I am so sensitive to cross-contamination, and my kids did protest. Is your entire home now GF since 2/3 kids need to be?

      Jess

  14. Krista Staigle

    Hi, thank you for your information. I have a three year old daughter that I think is having issues. She has a huge belly, she is also in the 90th % for weight and 40th % height. Her 4 siblings have always been in proportionate in height and weight. She either has diarrhea or hard stools. She does complain of belly pain a few times a week. She says she is hungry all the time, especially when we have eaten recently. Her brother is type 1 diabetic. So I am taking her to the doctor next week. I think something is going on but I am scared of getting dismissed as a crazy mom.

    1. Jess Post author

      Hi Krista,

      I hope that by now that you have some answers for your 4 year old.
      If your doctor dismissed your worries, then I hope that you sought a 2nd opinion (or 3rd or 4th if needed). I am astounded by all the moms who write to me telling me that their pediatricians refused to run celiac blood antibody panels on their kiddos with conceding symptoms.

      Jess

  15. Tara

    Hi, I was diagnosed w/celiac about 2.5 years ago (I am now 41). At the time, I had my 3 kids tested (ages 2, 4 and 7 then) and all came back negative. I am wondering when/if I should have them retested, even in the absence of any “obvious” symptoms. I myself had very vague symptoms (basically only hypochondria really, LOL) and was only diagnosed because I asked my dr to add the panel to my routine blood work. Was really surprised when it came back positive! Since my Dx, both of my sisters have been confirmed with celiac as well, and 1 brother probably has it, but got his blood tests done after being GF for a year, so of course they were negative. Oh, and my mom has crohn’s/colitis. Lots of autoimmunity in this group!
    Anyway, that’s the background, but my main question is how often should I ask for retesting? I am afraid I’ll look paranoid and feel like the doctors don’t all think it’s needed without symptoms.

    1. Jess Post author

      Hi Tara,

      You are not paranoid, and we are in a similar situation. I have asked several doctors, including Dr. Guandalini who I precepted with at the U of Chicago Celiac Ctr last year, and the consensus seems to be to test at-risk children every 2-3 years, starting at age 3-4, in the absence of celiac symptoms, and immediately if any celiac symptoms develop. I am having my 4 screened every 2 years.

      I have never been able to find this in writing though, it’s all been through word-of-mouth. I hope this helps!

      Jess

  16. Rhonda

    Hello,

    Our 5 yr old had enlarged lymph nodes on the back of his head and neck that popped up suddenly without him being symptomatic of any cold/virus etc. We took him to his pediatrician who said to monitor and come back if any new ones showed up. A week later he had more enlarged nodes in his neck and groin so we went back and they ran blood work including a celiac screen since I have celiac disease. Everything was normal except his celiac screen which was highly positive. He has complained on and off about a sore belly but that was it in regards to gastro symptoms. I was diagnosed after my pregnancy with him when I thought I kept getting a stomach virus with severe vomiting/diarrhea weekly (although no one else in the house ever would get it….obviously because it was CD!) I went to the doctor and hospital for fluids due to dehydration several times after these episodes and wasn’t diagnosed until an emergency doctor suggested I be tested about 6 months in to these episodes. I was 35 years old. Prior to this I had ongoing stomach issues since childhood (constipation, diarrhea, severe heartburn), all of which have disappeared since my celiac diagnosis and going gluten free. I am relieved that we found out now about my son, although I think going gluten free will be a hard adjustment for him.

    1. Jess Post author

      Hi Rhonda,

      Thank you for sharing the story of the diagnosis of both you and your son. He’s lucky to have a mama who also has celiac, as I’d guess that he will feel so much less alone. I can tell from your words that you are an awesome mom :)

      Like you I was also diagnosed in my 30s but had digestive symptoms since early childhood–we are fortunate that our children will never have to experience long delays like we did.

      I hope that he’s adjusted to being GF since you commented. Hope to see you on my page again.

      Jess

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