First Full-Blown Gluten Reaction

by | G+ Amy Leger

Well it happened.

If you have been waiting for something to go wrong with the gluten free diet (whether for yourself or your child)….it likely will– some time.  A serious “glutenization” happened to Emma over the weekend.  This was the first time since her diagnosis in 2000.

Emma has had rare cross contamination which caused stomach pain a few times, but nothing like this.

Over the weekend, we were in a soccer tournament in the suburbs north of Chicago.  There was some miscommunication amongst myself and parents who ordered food, I made an assumption and before you know it, Emma is hesitantly eating full-on gluteny fettuccine  noodles with Alfredo sauce.  However, I didn’t put two and two together until I heard her crying in bed at 1:30 a.m.

I got up and asked her what was wrong…she said her stomach hurt really bad.  She had already gotten up and had diarrhea.  While my husband stayed to watch her, I ran to Walgreens to pick up Tums (fruity kind are gluten free).  While I was out, she threw up — while no fun, she did say it made her feel a bit better.

Once I got back I gave her two Tums and she went to sleep– and was out the rest of the night.  I am sure for many others with celiac, this may be a tame reaction compared to what you have had.  But it was monumental for us.

Emma woke up the next morning and said she felt better.  She ate breakfast and lunch too.  Emma’s game was a full 12 hours after she got sick and in nearly 100 degree heat, plus humidity.  Needless to say she didn’t play much.  She probably played about 35% of the game but came out because she was queasy.

The Gluten-Free Dilemma

This one has been tough for me to deal with.  I am finding it difficult to balance being a control freak and just taking over, and helping Emma understand that we need to be respectful and appreciate others’ attempts to get gluten-free food for us.  If she doesn’t trust the food, then we can leave and find something else later.  But it is very nice when people think of us and that shouldn’t be blatantly discarded.

It would be so much easier to just handle this on our own.  But many gluten free folks also want to be thought of and not dismissed or forgotten by others. Time and time again on The Savvy Celiac Facebook page I hear about the “best gluten free moments of the weekend” and people say things like “when my friend ordered a gluten free cupcake for me during work party where regular cake was served”…. or “my child’s teacher made sure my son had a gluten free treat when a classmate brought in cookies for everyone…”

We want to be in control of our food to ensure it is safe, yet we want people to think of us during times like those mentioned above.  Can we have it both ways??  I apologize if I am making a general assumption here, maybe you don’t feel this way, but I think many folks do.

How have you managed this balancing act?  I would love to hear– and I am sure you would benefit not just me, but others who read this post.

By the way, there definitely were good gluten free experiences in Chicago.  Three words:  Greg’s Frozen Custard.  More on that tomorrow!

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6 Responses to “First Full-Blown Gluten Reaction”

  1. Ugh, I’m so sorry this happened to Emma. I’m being a super control freak right about it because of being pregnant, but sometimes I can be more lenient.

    Hope she is feeling back to 100% today!

  2. My family and I have been gluten-free for a year now.I’m always looking for people to relate to, but so far, most of Twitter (very informative and Facebook) is about the food. I struggle with the emotional aspects of it. The socialization back into society after being sick for so many years. My husband and I don’t drink, so that leaves like BBQ’s, birthday parties. etc. It’s extremely embarassing to have to go somewhere and have to monitor everything, literally go through the fridge and pantry, watch how it’s cooked. and , then, have to explain the whole gluten-free diet to people, which, in my mind, makes everything about me. That’s really not my intent. But, I have to. Of course, the situation, is worse for my 13 yr old son, and husband, that is more active than me. They’ll eat it, and will get sick, it affects me drastically, bed ridden for 2 weeks. I’m trying not to be overbearing and controlling, and be sensitive to them. I try to see it, as a reminder, to me and them why we are on it because sometimes it’s easy to forget. Mistakes will happen, however vigilant we are. With celiacs’ we have other food sensitivities as well,so just gluten-free sometimes just don’t cut it. I appreciate when people take a special interest. I still feel socially a big pain though, but I don’t think being stuck in a room is the answer though.

  3. I must have been feeling the pain right along with Emma, I to was ‘glutened’ this past weekend, and at a restaurant that I’ve eaten at many times. I was asking the server to make sure that the food was prepared correctly. My husband looked at me with a hairy eye, after the server left he said

  4. I’m the celiac in our family, but both my daughters have life threatening food allergies, so I feel your pain about balancing safety and freedom! We bring food whenever possible…if I find out what the other kids will be eating in advance my daughters will have something similar to eat. Offering to bring something helps, too – then there’s always one thing we can all eat. We’ve all found it’s easier to say “No thank you” period, than “No thank you I have a food allergy.” A purse full of Coco Loco bars is pretty handy, too.

    But oh, the worry! It’s never easy – good luck!

  5. Sorry to hear about your daughter 🙁 It must be harder when it’s your child! Especially knowing that not everyone is as aware of what is really gluten free. (I really had someone ask me, “So you can eat things like wheat thins, right?”)

    I feel that way on my own – do I risk eating something that someone else prepared? Should I just be grateful someone considered me? I always feel badly refusing food or not trying food, especially if someone went out of their way for me … but which is more important, my health or my feelings of guilt?

  6. Poor Emma!
    I am 21 years old and have been diagnosed with Celiac just over 5 years. I had a difficult time during middle and high school; always being sick and never understanding why. Even a teensy grain would make me violently ill.
    Now that restaurants are more “celiac friendly” it is important to remember that many servers still do not even understand what gluten is, not to mention its many hidden names such as malt extract. They simply do not know what to look for in the ingredients. It is sometimes very difficult to be patient, and it is important to NOT FEEL GUILTY. Be polite and plan ahead, otherwise you cannot guarantee your health. Even the best of friends can mess-up, so i find its easier to help them plan, rather than avoid their foods entirely.
    Today I went to a restaurant that I have been to many times, and requested my usual with the ever present speech about my allergies to the server. We ordered, I ate. Immediately i began to feel my throat swell and vomiting and diarrhea were sudden. I have not felt this ill in many years, and it is definitely something difficult to handle as most anti-nauseants etc. are meant to deal with very different issues.
    I have attempted to recall methods that u had previously used to deal with a full-blown reaction, but sadly I remembered few.
    If anyone has any recommendations for people such as myself and Emma it would be greatly appreciated!
    I have come up with the following ways to make dealing with an attack easier.
    1. As soon as you are aware of the contamination, throw up as much as you possibly can. I know it sounds awful, but it saves you from greater pain in the long run.
    2. lots of water and fiber! ground flax and water can really help your body flush out your system and speed up your healing.
    3. Keopectate – binds up the bad so that it doesn’t linger in your system, relieves cramping and eases diarrhea.
    4. Eat gentle foods – rice is especially easy to digest and does not trigger further nausea.
    5. Eat foods in tiny portions – constantly eating small easy to digest items can prevent the nauseous feeling without overwhelming your already upset stomach. Try something such as sliced apples or gluten-free arrowroot.
    6. keep cool – a lower body temperature can ease the discomfort and irritation
    7. FRESH AIR – nothing feels better than fresh air when you are feeling seasick on solid ground.

    I hope that this can help at least one person. As I had to learn how to handle Celiac disease on my own and I understand how frustrating it really can be.
    Im also loaded with product recommendations and recipes if anyone has any questions!
    wishing you all the best!

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