So  after Emma found gluteny noodles in her gluten-free pasta at Maggiano’s, I was worried she’d burst into a sudden display of a messy sickness–  nausea, vomiting, diarrhea, loose stool, — or at the very least– maybe a tummy ache, or even a really bad attitude.  But 48 hours later – no dice. Which actually was convenient since we flew home from Washington DC the next day – but in the long run this worries me.

Is it bad that I’d prefer my daughter have a reaction? In general, if Emma’s had gluten, I really want to “witness” it.  But why?  Is it that former newsie coming out in me—the nosey side? Am I just a concerned parent or worse, maybe I’m just wishing the worst on my own daughter.

All of these options sound horrible when said out loud. But I am concerned about those adolescent years—she’s 11.  Those years aren’t far away.  And if she knows she won’t react, in her mind, why NOT eat something with gluten – or why bother worrying about cross contamination? Wednesday night when we were walking back to the hotel from the Metro Station, she uttered the words, “Mama, if I don’t have a reaction does that mean I don’t have celiac disease?” Uh oh.

I of course explained to her right away that she still had it and the gluten that was in her food was doing damage to her gut even though it may not manifest itself in an outward symptom. But when she’s 15 and thinks I’m the dumbest person in the world, why would she believe ME? I’ve really never given this issue much of a second thought until this instant.

Many Celiacs are Asymptomatic

But I know I’m not alone. Some Americans with celiac disease have no outward physical reactions when they accidentally or intentionally eat gluten. This is an issue that causes a lot of second guessing among many celiacs: “A little bit won’t hurt”,  “I don’t react like ‘so and so’, so I must not have it as bad” or “my diagnosis must be wrong”.

This outwardly “asymptomatic” issue may have held true for Emma this week, but it certainly didn’t before she was diagnosed. She vomited a lot, had horrible diarrhea and a distended belly, lost weight and was very ornery. We KNOW she has celiac disease. We’ve KNOWN since 2000. We KNOW she must maintain this diet for the rest of her life and follow it diligently. And right now the best my husband and I can do is instill the KNOWLEDGE in her and support her so she understands her disease and how to keep herself healthy as she becomes an adult.

I think that’s all any of us can do because eventually it will be her decision what goes into her mouth. And no matter how sadistic I am about wanting to know every detail about a potential cross contamination episode – eventually it will be an issue only she can handle.

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4 Responses to “Torn Over Child’s Gluten Reaction (or lack thereof)”

  1. I don’t know if it would help Emma to hear from someone who was that age not all that long ago or not…thought I’d share anyhow.
    When I was 11, I didn’t know I had celiac disease yet, but I did know that I had food allergies. When I was younger my allergies came with fairly noticeable reactions, but then when I was about 11 or 12 my symptoms went away. I discovered this quite by accident and thought it was great. My mother didn’t think quite the same way as I did. I figured I could eat whatever I wanted. When I went to summer camp I decided to eat whatever I wanted, because mom wasn’t there to watch me. It was fine for the first day or two. Then I was blindsided by my very first anaphylactic reaction. The reaction was to something I had known I was allergic to, but had had no symptoms of reacting to just a day earlier. As much as I hated to admit it then (and even now sometimes) Mom was right…no symptoms didn’t mean no allergy.

  2. I must say I smiled when reading your blog/post! It makes all my fond memories come rushing back….did my daughter get gluten, how long til I will be cleaning up vomit…will she make it to the bathroom on time…LOL! You are NOT sadistic…(well maybe a bit), but really-you are a concerned mother who does need to witness symptoms in order to verify you are keeping your daughter GF at ALL times. It is our meter so to speak of whether we are doing a good job or not. Having just “finished” raising my daughter at home (yes, she graduated), you will be fine! The reason you will be fine when she is a teen-you have instilled how important it is to be totally GF and how important it is to stay GF and though my daughter on occassion got glutened by accident as well-she had great values and stuck to them knowing that maybe one of the times she MIGHT get sick with vomiting, etc. So she chose NOT to cheat, not to indulge with friends, and not to “just try it” to see if she would get sick. Why on occassion do they not show symptoms? This I don’t know. I do know that she very rarely got cross contamination-but when she did it would be hit or miss as far as symptoms. I would panick and be like you were-then it would pass and as she got older she would say it was OK mom. I am not going to cheat or take risks. So I really think you have been doing a great job and instilling the importance and value of her health and this will have made an impression on her and she will remain GF-always. Not to say there might be the occassional cross contamination as just happened-but deliberate cross or cheat-no-I think not! Good luck and I hope she continues to thrive and live life to the fullest!
    (PS-Did you ever file the 504 plan?)

  3. I just found your blog while I was researching why my daughter did not have a reaction after an accidental ingestion of gluten. Every thought you had is exactly what I am thinking now. How do I explain to my 6 year old that yes, she didn’t have a reaction this time, but it is still not ok for her to eat foods containing gluten. And I did feel horrible because I almost did want her to have a reaction. Thank you so much for what you wrote. You made me feel so much better knowing that I’m not alone in this.

  4. Holly, I am so glad you felt this post helped you. It is a struggle to know what to expect if if you know about a gluten ingestion…but then there’s that whole area of wondering…if they’re not reaction, what if they’ve been getting something else that you don’t know about!
    Thanks for your comment. And I’m glad you connected with this post.

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