The Scope is Clear (At Least for Now)


Claire is the youngest of our four children and was the first born after my diagnosis with celiac disease. She was a very healthy baby and I can’t recall her having any health issues during her infancy other than one or two mild colds and a touch of constipation.  Then, when she was about a 13 months old she began to have very high fevers, up to 104.5-105 F, that would come out of the blue and last between 2 and 5 days.  During these fevers she would have no other signs or symptoms of infection (i.e. rashes, vomiting, cough), she looked good, and, for the most part, her blood and other lab tests were normal. She had 9 or 10 total episodes of fever without a source during her 2nd year of life. Celiac disease was always in the back of my mind but I could not link her fevers with eating gluten. Although our home is 100% gluten-free, my kids do eat gluten outside of the home, in part so that I can keep tabs on whether or not they develop symptoms after eating it.

Claire’s fevers stopped in December, only to be replaced by episodes of diarrhea. Her poop was tested for bacteria, parasites, white blood cells, and all kinds of other good stuff.  I opted out of blood screening labs for celiac disease at this point as 1.) The celiac antibody panels are not often reliable in her age group, especially in kids who are “gluten-light” at baseline like Claire was, 2.) I couldn’t bear the thought of making her go through any more blood draws after all the times she’d had to be poked for her fevers, and 3.) I did not want her to have to go through a gluten challenge to get a reliable small bowel biopsy via endoscopy (since she was eating such small amounts of gluten at baseline). Our gut instinct was that her system was reacting to something in her diet. So, we put her on a gluten-free and milk-free diet in January, started her on a high-potency probiotic, and, her poops become normal and the fevers did not return.

Our oldest daughter had a milk protein allergy during infancy, so I prayed that Claire’s symptoms were from a milk protein intolerance of some sort, as most kids outgrow this. However,  when we re-introduced milk, none of Claire’s symptoms returned. But when she accidentally ate gluten the diarrhea and abdominal bloating returned on 2 separate occasions.  And then, when we let her eat a non-GF chicken nugget in April on purpose, both the diarrhea and fever returned with a vengeance.

Although I wanted to be able to keep Claire gluten-free forever, I knew that it was time for her to be formally evaluated for celiac disease.  As a doctor, I feel very uncomfortable trying to diagnose my own kids with anything. It seemed that she was sensitive to gluten, but in order to diagnose a child with non-celiac gluten sensitivity, I knew that celiac disease needs to be ruled out.

We met with a pediatric gastroenterologist named Dr. N who is affiliated with a very well-respected tertiary children’s hospital. Dr. N was phenomenal and very knowledgeable about celiac disease. He assured me that he would take enough duodenal biopsy samples (at least 5) and that he would include the duodenal bulb (in some cases, this is the only part of the small intestine where the damage from celiac can be found). He agreed that even if Claire’s small bowel biopsy showed only Marsh 1 damage (mildest findings seen in celiac disease) that he would give her a celiac diagnosis based on her symptoms and family history. We began to give Claire foods with gluten to eat, and for weeks she enjoyed non-GF pizza, Oreos, ice cream with cereal bits on top, and all kinds of other treats that she does not normally eat. Interestingly enough, she did not develop diarrhea but instead became mega-constipated. She did not develop a fever. I almost cancelled the biopsy at this point but decided to go through with it as Dr. N. said that he’d seen this happen with previous gluten challenges in kids who ended up having celiac disease.

Claire could only have clear liquids on the morning of the scope, so all four of our kiddos drank white grape juice and ate yellow jello and popsicles for breakfast. I let her watch Frozen during the 2 hour drive to the hospital. Claire was in great hands with the nurses, anesthesiologist, and other staff who we met at the children’s hospital on the morning of her endoscopy. She was given a medication called Versed which made her sleepy and 20 minutes later they wheeled her away to the O.R. The entire procedure took 15 to 20 minutes and we were reunited about half an hour later when she woke up.  She was a bit cranky at this point, much like she would have been if we woke her from a deep sleep at home, but soon after she was drinking juice and eating peanut butter out of little individual cups with a spoon.  She then ate a huge bowl of GF mac and cheese followed by about 8 cookies. Two hours later she was running around outside in the sunshine, sharing a GF pizza from California Pizza Kitchen with me, and as happy as could be, and since then she seems to have total amnesia for the entire experience. Thankfully.

We received results 4 days later that her duodenal biopsies were normal and did not show celiac disease.  Since the biopsy results came back she has eaten gluten several times without getting ill or having digestive symptoms. I am glad that we went through with the testing. I’m not sure that this will last forever (just because she doesn’t have celiac disease now doesn’t mean that she won’t develop it in the future) and I have no idea why she was having the diarrhea or fevers, but for now I am grateful.

Out of curiosity, has anyone else had a toddler who seemed to have reactions to gluten that disappeared?


18 thoughts on “The Scope is Clear (At Least for Now)

  1. Erica S.

    I’m not a toddler :) but I have a similar story of my own as an adult with my diagnosis. I was eating “gluten lite” as suggested by my internist before my referral to a Gastro. Positive bloodwork (DGP IgG + only), inconclusive biopsy (inadequate samples? or not enough), ½ HLA DQ2 (w/ DQA1*05). The Gastro hinted that “pre-celiac” was possible etc. It was/is very confusing. I can’t go through eating gluten again though just for the sake of a positive biopsy. I tend to agree with you as far as your daughter goes and the possibility that maybe her young age (with regard to the blood tests) and perhaps two weeks of gluten wasn’t enough? Have you heard that some physicians suggest that up to six weeks is needed before a biopsy? I thought I had read somewhere in my research). I hope her symptoms don’t return. Good luck to you, Jess. And thank you so much for your informative and well explained posts. I have gotten more out of your blog than any other site on the web. I am particularly interested in your mast-cell info. Great work all around. Again, best to you and your daughter.

    1. Jess Post author

      Hi Erica,
      It’s really good to hear from you. Thanks for sharing your experience with having a confusing diagnosis as an adult.
      We opted for a shorter gluten challenge as Claire’s past reactions to gluten had happened so quickly and she also had recently experienced 3 “glutening” episodes shortly before the scope (the last was bad enough that I was certain that her bowels would still have some degree of damage, but now I know I was wrong). Also, Dr, Leffler had a recent study showing that for most, a 2 wk gluten challenge should suffice, see link. She ate a lot of gluten in the weeks leading up to her scope.
      If Claire’s symptoms do return, then she is going to be off gluten for good. There is a blood test in development that will require only a 3 day gluten challenge (I’ll be writing about the science behind it soon), so I will consider going that route in the future if we need to, not only for Claire but for my other kids.
      The mast cell stuff is really fascinating too and I hope to be able to write more about the subject soon too.
      Hope that you and your family are having a great summer!

  2. Vik

    Wow Jess, what a time you all have had. I’m glad that all is well!

    And, hearing about Claire’s pre-biopsy glutenous food brawl, brought back some memories!

    1. Jess Post author

      Hi Vik,
      Yes, it’s been an interesting last few months! I am ready for vacation–it starts tomorrow!
      I had the absolute worst choice ever for a my last gluten-eating hurrah, Thin Mint cookies and cheesy-bread from a mediocre pizza place. Yuck…
      Claire had much better quality pizza, fortunately!

  3. shannon

    Have any of your children been genetically tested? My brother has not been tested but his 15 year old daughter has always had a “sensitive tummy”. She complains of bloating and early satiety and gets nauseated easily. My sister-in-law is thinking about having her tested to see if she has the genes for being at risk for celiac. Interestingly, she has a cousin on the other side of the family who has Type 1 diabetes as well.
    It sounds like you did the right thing…. sure is strange that all of her symptoms have resolved. I hope that she stays well :-)

    1. Jess Post author

      Hi Shannon,
      My kids have not been genetically tested, as we know that both my husband and I are homozygous for high risk genes (so therefore, they are all homozygous, and thus, at risk).
      Had we not known my husband’s genetic status, then yes, I would have opted to have all 4 gene tested, just to know whether or not they are at risk.
      I hope she stays well too. We’ll see what happens with time…

  4. Misty

    My daughter (7) is not a toddler, either, but she has had stomach issues for a year or so (bloated, stomach pains, constipation, diarrhea), and we cut out gluten. She rarely has stomach issues now, but we haven’t had any testing other than blood work when I was diagnosed 2 years ago. I didn’t want to put her through a surgical procedure back then, and now she eats no gluten. If she eats gluten, she is complaining of stomach pains within a few hours. So I guess we are at a point where we consider her to have gluten issues (if not Celiac), and I am not sure what we would do if we needed to get her tested in the future.

    1. Jess Post author

      Hi Misty,
      I am hopeful that with time there will be an alternative to a gluten challenge for diagnosis. For those of us who have either GF or gluten-light kids because of our own diagnoses things get especially tricky. There is a blood test in development that will require only a 3 day gluten challenge for a diagnosis of celiac disease, that does look promising for the future. I hope to write a quick post about it soon. For now many of us are stuck in a very gray area. I personally get so sick after being exposed to traces of gluten that I know that my body would not be able to handle a true gluten challenge.
      Thanks for taking the time to comment!

  5. Louise

    Omg I am going through this right now with my just turned 1 year old!!! We are going to see a doctor on Thursday and I’m going to relay my fears hopefully with some resolve. My 10 year old was diagnosed Coeliac at 18 months after 6 months of constant vomiting resulting in malnutrition. Medical practitioners were not knowledgable about Coeliacs at the time and kept setting me on tracks that were only setting her further back, it was a terrible time. My 1 year old now thankfully is not struggling with vomiting but we have constantly struggled with constipation and now diarrhea the last 2 weeks. On top of that I am starting to wonder if the poor sleeping habits, bags under the eyes, often pale skin and itching of her belly are all related. I guess well just have to wait to see what the professionals say.

    1. Jess Post author

      Hi Louise,
      I hope that things go well with your daughter’s visit and that the doctors are able to address your concerns and answer your questions. Please keep us updated. If she gets blood antibody testing, it may be helpful to request that she have a DGP-IgG done in addition to the TTG-IgA, as the DGP (deamidated gliadin peptide) can be a bit more sensitive in tiny tots.
      Good luck!

  6. Dana

    Fascinating post Jess. The body is such an enigma sometimes, no celiac for Claire (as of now) yet the unexplained fevers and diarrhea is certainly confusing. Maybe gluten sensitive or maybe not (!) since she’s able to eat it without symptoms.

    Has she been genetically tested? My son who is now 2.5 eats gluten very rarely out of the house (since our home is gf for his celiac sister) and doesn’t seem to have any issues when he does. I’d love to be able to rule it out re his DNA but our insurance may not cover the cost. For now we are just keeping our eyes open for any signs, which is especially poignant for me since he is at the age his sister was when hers was triggered.

    I know my comment is not helpful persay, but I’m right here with you as far as being a hawk eyed mom wanting what’s best for her childrens health.

    1. Jess Post author

      Hi Dana,
      It’s so good to hear from you.
      We have opted out of genetic testing, only because we know that all of our kids have two copies of genes that predispose to Celiac (we know that both my husband and I are homozygous for genes that predispose to celiac disease). If we did not know this, then yes, I would probably have had all 4 kids genetically tested. It would not rule out gluten sensitivity, but at least we’s know if they were higher or lower risk for celiac.
      Also, it’s good to know that I’m not alone in being a hawk-eyed mom :)

  7. Cherish

    My younger son has GI issues now and again. I had him blood tested after I was diagnosed, but nothing turned up. And now, to complicate things he’s gluten-free at home. A couple weeks ago, he had a birthday party with good old wheat flour cake and had issues for a couple days. I am not sure if it was the flour or the frosting (I’m sure lots of sugar messes with the gut biota)…but I’m contemplating another gluten challenge. Ugh. It doesn’t help that he’s on the small end for his age. It’s so nerve-wracking wondering if it’s going to show up or if that’s what’s causing the issues.

    1. Jess Post author

      Hi Cherish,
      It’s good to hear from you! How are you? How old is your son?
      There seem to be so many of us GF adults who are raising “gluten-light” kids (by necessity, as I get so sick from gluten that we can’t have any in our home) that there should be a more optimal way to test for celiac disease in such a population (as an alternative to the gluten challenge).
      Interestingly enough, for you an anyone else who reads this, since Claire’s negative celiac tests 3 weeks ago we have kept her on gluten. We just got back from a 10 day vacation during which she ate gluten-y foods everyday and she seems to be totally fine. Of course I am still trying to figure things out…wondering if she was in some sort of “pre-celiac” state and flipped out of it prior to the testing. We have had her on a solid probiotic so I’m wondering if that somehow helped things, or prevented it from developing, at least for now.
      Hope you don’t mind the babbling….please let me know if/when you decide on testing so we can compare notes!

    2. Ms. Pris

      The blood test, as I learned, can be false negative. I wish I had known that, because this disease took more than ten years of my life away.

      1. Jess Post author

        Hi Ms. Pris, Thank you for bringing this up. You are a perfect example of the problems with testing. Based on a very recent paper that I wrote a post about a few weeks ago, between 6 and 22% of cases of celiac disease are seronegative. Other common causes of false negative testing include not eating enough gluten prior to testing and having a condition called serum IgA deficiency (approx 3% of people with celiac disease have this).

  8. Ms. Pris

    I had my first antibody test in 2003. It was negative, so I went on with my life. In 2013, after reading a lot more about gluten and AITD, I decided to try going GF. It was revolutionary; my fibromyalgia disappeared, my peripheral neuropathy disappeared, it was really life changing. My thyroid function improved and I was able to reduce my meds by more than half. So I decided to get evaluated for Celiac.

    I am positive for DQ8 and DQ2. I am sympomatic for Celiac and gluten ataxia. I had been MOSTLY GF for several months at that point, with several accidental ingestions (a restaurant at which I ate regularly had lied to me about the ingredients of a dish.) I ate some gluten a month before my test and again a small amount right before the test. It was enough for me to react. But, my antibody tests were still negative.

    I also had an EGD in which they found some inflammation in my esophagus, but no problems in my duodenum (though I don’t think he specifically checked the bulb, and he only took 3 samples.)

    What I have since learned from reading in the NIH database is that the lab test for Celiac tests only for anti-gliadin and anti-TTG2 antibodies. The problem with this is that your body can produce antibodies to any form of TTG in response to gluten.

    My gastroenterologist confirmed that I have Celiac based on my genes and my symptoms. I have no regrets.

    I am sure you know that one can have “latent Celiac”: building antibodies and enteropathy without exhibiting intestinal damage. I hope your daughter continues to be healthy.

    1. Jess Post author

      Hi Ms, Pris,
      Thank you so much for sharing all you have learned and sharing your story.
      Like you, I also had a peripheral neuropathy from celiac disease. It’s what led me to start my blog in 2012, as it took me by surprise and I hadn’t realized until how widespread the damage from celiac disease can be.
      The experts talked quite a bit about the other types of TTG antibodies at the International Celiac Disease Symposium in Chicago last Sept. The celiac antibody panels in the US test for TTG type 2 antibodies only. These are the ones associated with intestinal damage. TTG type 1 antibodies are associated with the neurologic symptoms (used for research purposes only at the current time) and TTG type 6 are implicated in dermatitis herpetiforms. It sounds like you already know all of this but I am sharing for others who may be reading.
      I actually did write about latent celiac disease last year as well as it was also discussed at the ICDS. I’ll try to come back later and put a link to my post here.
      It’s really nice to “meet” you and thanks so much for sharing.

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