Univ of Chicago CD Center

Update on Pediatric Celiac Disease from the University of Chicago 12/2014

I’ve been so busy learning new information about celiac disease and non celiac-gluten sensitivity that I haven’t had a chance to post for a while. I was fortunate to be one of 30 practitioners selected for the 2014 Preceptorship Program at the University of Chicago Celiac Disease Center, which took place 12/4-12/5. We had an intense 2 days filled with lectures on topics ranging from “The Pathology of Celiac Disease” to “Celiac Disease and the Skin” to “Celiac Disease and Developmental Disorders.” I was also able to spend time with Dr. Guandalini in the pediatric celiac clinic at the University of Chicago. Overall it was a great experience and I learned a TON about this disease which I hope to be able to share in upcoming months with other doctors, nurses, patients, friends and family, and all of you.

As both a pediatrician and mother of 4 children who are all at high risk of eventually developing celiac disease, I was especially interested in Dr. Guandalini’s lecture entitled “Celiac Disease: Update on the Pediatric Perspective.”  Here are some of the “take home” points of Dr. Guandalini’s presentation.

  • The incidence of celiac disease is definitely increasing. In 1990 5.2/100,000 Americans had celiac disease. In 2010 19.1/100,000 did.
  • The increases in celiac disease appears to be multifactorial and may be related to antibiotic use, Western diet, elimination of H pylori from GI tracts, birth by c-section, infant feeding practices, and reduced exposures to infections during childhood. The final common pathway appears to be a change in microbiota (bacterial balance), or dysbiosis, in genetically predisposed individuals.
  • He emphasized that glycophosphate, also known as “Round Up,” does not cause celiac disease, and used this as an example of the misinformation that is found online.
  • Children who carry 2 copies of the HLA-DQ2 gene are at very high risk of developing celiac disease. By age 5 to 6, 40% of homozygous DQ2 children have celiac autoimmunity, and approximately 25% have celiac disease.  I specifically asked Dr. Guandalini about the significance of celiac disease autoimmunity (positive celiac antibodies) v. celiac disease and I was told that it needs to be taken as seriously as celiac disease in kids, i.e. these kids need to be gluten free.
  • All of the following disorders are associated with celiac disease: gastrosophageal reflux, eosinophilic esophagitis, seziures, asthma, kidney stones, restless leg syndrome, sarcoidosis, psoriasis, vitiligo, idiopathic thrombocytopenia purpura (ITP), idiopathic dilated cardiomyopathy, hyperparathyroidism, and multiple sclerosis.
  • Based on recent studies, breastfeeding, and length of breastfeeding, do not seem to have any effect on preventing or delaying the development of celiac disease. Breastfeeding at the time of gluten introduction does not appear to make a difference either.
  • Also, based on recent research, the optimal time to introduce gluten to an infant is at about 6 months of age.  Delaying gluten introduction until after 12 months does not prevent celiac disease in children, nor does early introduction (4-6 months).
  • Children can be diagnosed with celiac disease without undergoing an endoscopy and biopsy if they all of the following: symptoms, a TTG IgA antibody level that is greater than 10x normal, and a positive EMA IgA antibody titer.  If the EMA IgA is negative, then a small bowel biopsy must be performed to confirm diagnosis.
  • There is no reliable method to detect celiac disease antibodies from stool samples.
  • Most doctors re-check TTG IgA antibodies in kids after 3-4 months on the GF diet. TTG IgA levels decrease in 75% of children after 3 months on the GF diet but it can take longer to normalize, especially if the level is sky high at the time of diagnosis.
  • Children who are newly diagnosed with celiac disease should have all of the following monitored: Vitamin D level, complete blood count, iron studies, thyroid function studies, and close monitoring of growth (weight, height, and body mass index).
  • Children with celiac disease experience rapid small bowel healing compared to adults. Almost 90% show remission after 1 year on the gluten-free diet.
  • Kids who are at risk of celiac disease but do not have symptoms should be screened at age 3 and then every 3 years (obviously sooner if symptoms develop)–I put this in bold because this is a question that I’ve had a very difficult time finding an answer to over the years.

I hope to be able to post more information that I learned at the preceptorship over the next few months. In the meantime please let me know if you have any questions or need me to clarify anything that I wrote about above.  As you know, it’s the holiday season, and we are starting to plan our cross-country move, so my mind is being pulled in a million directions right now! Thank you for understanding.

We had an entirely gluten free dinner for all preceptors and faculty on 12/4 at the Palmer House Hilton. I am in the front row in black. It was wonderful to be able to eat en entire catered meal without fear of getting sick!

We had an entirely gluten free dinner for all preceptors and faculty on 12/4 at the Palmer House Hilton. I am in the middle of the front row in black. It was wonderful to be able to eat en entire catered meal without fear of getting sick! Thank you again to the University of Chicago Celiac Disease Center for including me.

22 thoughts on “Update on Pediatric Celiac Disease from the University of Chicago 12/2014

  1. Ellen

    My daughter was diagnosed with an ulcer at age 8, then treated with antibiotics and seemed fine for several years. At age 16 she was diagnosed with celiac disease. Is there any research about a connection between the two?

    1. Jess Post author

      Hi Ellen,
      There has been relatively recent studies showing associations between children receiving multiple courses of antibiotics and the later development of celiac disease (I do not have references readily available, but can find them if you need me to), as well as a paper by Dr. Benjamin Lebwohl at Columbia in 2013 that discussed that H pylori colonization is associated with a decrease in the risk of celiac. Please keep in mind that these are correlative studies, though, and that they are not showing causation.
      I hope that your daughter is doing well on the GF diet. I cannot imagine what a difficult transition this must be for a 16 year old…
      Happy Holidays to you and your family.
      Jess

  2. catherine shultz

    Thank Dr Jess and Congratulations to you on being selected, it will be helpful to you, your family, your patients and to all of us here.
    Happy Holidays and my very best wishes to you on your move.

    1. Jess Post author

      You’re welcome Catherine. Thank you so much for the holiday wishes. I hope that you and your family have a wonderful holiday season too.
      I’m a bit stressed by the move, but I hope that by this time next year we’ll be pretty settled into life in Massachusetts.
      All the best to you!
      Jess

  3. Julie

    I am trying to find more research around introducing gluten to my baby that will be born in June. This is my 3rd but first where I have celiac disease. My OB doctors are all puzzled on how we handle it if I decide to formula feed. Based on my history I know at a minimum I will have to supplement. Do I need to make sure the formula is gluten free until the 4-6 months where it sounds like I can start introducing it? I am also wondering if I should push to do a gene test as I tried to have one done with my two older ones and have not been successful with that yet. I will see our pediatrician in a month and will also talk to them but I am afraid they will also be confused.

  4. Jess Post author

    Hi Julie,
    You are asking great questions. My 1st 3 children were born before my celiac diagnosis and my 4th was conceived 2 years after my diagnosis.
    Are you in the U.S.? I ask because all of the main infant milk-based and soy formulas sold in the US are gluten free (Similac, Enfamil, and GoodStart), so I do not believe that you have to worry about gluten exposure via breast milk. Your breast milk will obviously be GF since you are GF.
    For Claire, my youngest, we just made sure to add baby oatmeal into her feeding routine so that she’s have a little gluten exposure, we definitely didn’t go crazy with it. I made my husband feed her the oatmeal and we put the bowls and spoons right into the dishwasher to avoid cross-contamination in our kitchen.
    The gene testing is tricky, as I am under the impression that most insurers do not cover it (and that it can cost quite a bit out of pocket). We opted to have my husband gene tested and learned that he is homozygous Dq2…meaning that we know that all 4 of our kids are DQ2 positive, and hence, at risk for celiac. It saved us quite a bit of money to go this route, as opposed to having to pay for all 4 kids to be tested.
    Please keep the questions coming. Congratulations on your pregnancy and I hope you are feeling well!
    Jess

    1. Julie

      Thank-you for your quick response. This is very helpful. Also good to know we won’t have to buy expensive formula! My house is not 100% gluten free so we shouldn’t have an issue slowly introducing gluten to the baby. I hate to make my kids give up good mac & cheese unless they have to : ) I really miss my gluten filled saltines this time around but I have been able to manage and starting to turn the corner into my 2nd trimester so it is getting easier to eat. If anything I guess I am healthier this time around because I am so restricted with my diet. Thanks again for the response.

  5. Jeri

    I cannot begin to tell you how much I appreciate your posts on medical information regarding Celiac Disease. My two year old daughter was just diagnosed, so we are still adjusting to Gluten Free, and I have taken on blogging as a way to help motivate me. I am a biologist during the day, by know means in the medical field, but I appreciate information and research papers that you have shared. Thank you so much!

    1. Jess Post author

      Hi Jeri,
      Thank you for taking the time to stop by and introduce yourself. I look forward to checking out your blog. Can I post a link to it?
      Happy New Year and all the best to you and your family!
      Jess

  6. Pingback: New Year and New Celiac Info… | The Patient Celiac

  7. Emily

    My infant has had GI issues from the start, escalating with the introduction to solid foods. At his 9 month check, his growth curve had gone from the the 90% at birth to the 18%. He was vomiting, grouchy, stinky, not sleeping well… Based on a gut impression, as well as information from a book by Dr. Wangen, “Healthier without Wheat” we took him off gluten and dairy and we saw a complete 180 in his health and happiness. We did see a GI doctor who did 2 blood draws, one looking at his Ig response to gluten, the other looking for the genetic markers for celiac. Both came back negative (he actually had two Ig screens, one with our pediatrician 10 days after going off gluten, the other 3 months after going off gluten. There stands a good chance that both are false negatives. However, after the genetic testing the GI doctor basically told us there is next to no chance he has celiac and didn’t have much more to do for us). He’s undergone allergy testing with negative results as well. That said, I can say that with every accidental ingestion of wheat or gluten in the last year (he is now 2) we have seen either rushing, liquid stools, restlessness, or vomiting (often a combination). We’ve looked into FPIES and hope perhaps it is just something he’ll outgrow, but everything I’ve come to understand about not tolerating gluten is that you don’t just outgrow it. Where else could we be looking? Can it be celiac without the genetic markers? There certainly is a family history of unsolved and, in some members, debilitating GI issues, including his father.

    1. Jess Post author

      Hi Emily,
      Did your son’s GI do an endoscopy to make sure that there is not something else going on that is causing his digestive symptoms and weight loss?
      Also, there are case reports of celiac disease developing in patients who are DQ2/DQ8 negative, and there was a recent paper showing that 8 or 9% of a Brazilian celiac population did not have DQ2 or DQ8.
      Lastly, I showed up as genetically negative the first time I was gene tested for celiac. I am DQ7 with only half of a DQ2 heterodimer (the first lab that ran my gene testing did not pick up the heterodimer, but the second lab that ran the genetic tests did).
      I hope that you are able to find answers for your son.
      Jess

  8. Emily

    Thank you! I am struggling to find a doctor who is listening with the time to help us (we are military and therefore move a lot- it can be hard to find invested care). I may need to assert myself again with the practitioners we’ve been given.

  9. Maria

    Hi, my daughter just turn 2. She is being complaining about her stomach for over 1.5 months. About 1.5 she had a stomach bug. After a few weeks, all symptoms were gone, but the belly ache keeps going. She had some blood test done wich came back abnormal and her pediatrician referred us to a gastroenterologist. We went to see him yesterday. He said that she will have an endoscopy done. Which we already made an appointment for next week. And I’m just very stress about it all. But mostly, because my baby has beign in and out of doctor’s offices in the past 6 months. (When she started going to the daycare.) she’s had two pneumonias and other things you can catch in a daycare facility, but anyways. When she had the 1 pneumonia we discovered that she has an allergic reaction to almost all the antibiotics except Cefdinir. But on her last pneumonia she had to take it for 20 days

  10. Maria

    Sorry it didn’t show everything. But my biggest worry is Anesthitia. What if she is allergic to the Anesthitia?

    1. Jess Post author

      Hi Maria,
      Thank you for writing. I am a mom too and I understand what it is like to have worries about the health of our children.
      In most cases children receive conscious sedation as opposed to general anesthesia when they have endoscopies done. When my daughter Claire had her endoscopy done when she was two years old she received a medication called Versed for her sedation, which is widely used in the pediatric population (I use it when I take care of sick babies in my NICU) and also can be reversed.
      For every procedure that is done doctors have to weigh risks vs. benefits and it sounds like in your daughter’s case that it is important to try to figure out why she is sick so she can receive the treatment(s) that she needs.
      I hope things go as well as they can and that you are able to get answers.
      I wish you the best.
      Jess

  11. Jessica Varney

    Hello. My youngest of four was exclusively breastfeed until 6 months. He was in the 90th percentile for growth. Once I started him on solids everything went downhill. We started with oatmeal and he immediately became constipated. I thought not enough water so I increased that. Still terrible constipation and he began to develop eczema, so I took him off. We continued to go thru the different foods. He developed asthma, had allergic reactions to various food. We ended up seeing and allergist and asthma doctor at 10 mths he he was positive for milk and eggs.(I was surprised because his reactions always seemed to coincide also with oats and wheat but they were negative.) this is the point I began to increase his wheat and oat intake because it was something he could have. Over the next 6 months he stopped gaining weight. He began having muscle wasting in his arms, his anterior fontel was huge( stopped closing), he developed dark purple circles under his eyes, and had a sallow look to his skin, he was also always constipated. He looked sick! By the end of the 6 mths he went from constipation to diarrhea to mucousy diarrhea to bloody diarrhea. I was worried and desperate to find an answer. He also had continuos illness and asthma problems during this time. A friend ( and physician) of mine ask if I thought it could be celiac? It was like a light bulb went off( my father, sister, and brother are gluten sentive. It never occurred to me it could happen that early though!) I immediately made him gluten free( without testing I just wanted to see if it would make him better). Within a couple days his stools were normal for the first time since he was exclusively breastfeed. By the end of the week he gained a full pound and his color had greatly improved. By the end of the month he gained another pound and his fontanel had become half the size it was. He was getting better! He is now 2 and had been gluten free for 10 months. He had gained 6 lbs and is growning like a weed. My only concern is that we never got him tested. At the time I was just so glad to see him get well I didn’t care. However, now I have noticed when he eats GF oatmeal he becomes constipated. He also developed a pretty nasty eczema rash on his belly and legs after having the gf oatmeal several days in a row. It went away within a couple of days of taking it out of his diet. I know he needs to be diagnosed. I am just not sure if I should start with the genetic testing. I know he will eventually need a gluten challenge, but am unsure at what age is appropriate. All the journals I have read are not specific as to our unique situation. I also worry about making him sick again now that he is thriving. Any guidance would be appreciated.
    Jessica V.

    1. Jess Post author

      Hi Jessica,

      Thank you for writing. I am sorry to hear all that you have went through with your son but am so happy to learn that his health has improved since you made him GF.

      I am not sure what the right “age” is for a gluten challenge. If your son was my child I would take him to be evaluated at a pediatric celiac center to get some guidance. When I spent the afternoon in Dr. Guandalini’s clinic at the University of Chicago he did prescribe gluten challenges for several kids, but none were as young as your son. My gut instinct tells me that you can probably wait a while to get answers, but you are right, at some point during his childhood you will need to know for sure whether or not he has celiac (and there are rare cases of celiac developing in HLA DQ2 and DQ8 negative patients, so I am not sure that the gene testing would be helpful to you, as it sounds like he will eventually need a scope and biopsy anyway).
      I am sorry that I cannot be more helpful. My heart goes out to you.
      Jess

  12. Missy

    I love your page! So nice to see your perspective!!!

    I have been sick since I can remember (by age 5, at least). I finally figured out it was gluten by the time was 30. Was blood tested, but that was negative. Half-heartedly eliminated gluten from my diet (cheating a few times a year) for about five years and finally went strict 9 months ago. I mainly went strict because I had 23andme testing which showed I’m homozygous for DQ2.5, the highest risk group, so figured my risk was about 10 times that of the average American. Now I see it’s probably 25-40 times higher for celiac autoimmunity. Considering the gluten challenge to be sure, but with odds like that and symptoms (I also had an idiopathic seizure disorder diagnosed in grad school), I want to just say I have celiac so I can get the insurance and tax benefits. It is SO hard (though not as hard as my son’s Crohn’s diagnosis…) and no one takes us seriously when we say we have gluten sensitivity.

    Thank you so much for this information!!! I love your blog and just found your facebook page.

    1. Jess Post author

      Hi Missy,
      I have encountered a few people who have been able to get a diagnosis from their doctors based on symptoms, having symptoms drastically improve on the GF diet, return when gluten is consumed and being homozygous for DQ2. Although this is not in line with the celiac experts’ recommendations for diagnosis, it may be worthwhile to discuss with your doctor.
      I wish that I could help you more…I wish you well.
      Jess

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