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A Mother’s Reflections of Raising a Child with Celiac Disease

Yes, it would have been more appropriate to celebrate Mother’s Day with this post, but ironically (or is it coincidentally) the job of being a mom has really prevented me from preparing this post before now.

On this Mother’s Day, I found myself thinking back to all those times during Emma’s illness, subsequent celiac diagnosis and eventual permanent lifestyle change where the Mom really came out in me, both quietly and ferociously.

Here’s my list starting with before diagnosis and goes chronologically from there - maybe you can relate:

I remember...
  1. Before diagnosis, wondering why my daughter, celebrating her first birthday, refused to eat cake and threw a tantrum.
  2. Looking at my 1-year-old daughter with skinny legs, bloated tummy, and crabby disposition and wondering - is this the way the next 17 years will be.
  3. Questioning doctors about why my daughter throws up so much and has such a big belly - I was treated like I was an overprotective mom who knew nothing.
  4. Cleaning up vomit on the carpet, on clothes, in the kitchen, in bed, on the wall, on stuffed animals, etc.
  5. Leaving work early and in tears because something was wrong with my daughter and no one knew what it was.
  6. Feeling the best relief ever when a gastroenterologist confirmed our doctor’s eventual diagnosis of celiac disase - just by looking at her. Solidifying the fact that we weren’t crazy!
  7. Getting up at 4:30 a.m. to fix 16-month-old Emma breakfast at the latest acceptable moment because she couldn’t eat for 8 hours before her endoscopy and biopsy.
  8. My eyes welling up in tears as the anesthesiologist put the mask on my daughter to put her “under” for the
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examination of tissues or liquids from the living body to determine the existence or cause of a disease.'); return false">biopsy. She was fighting and crying and then her whole body went limp.
  • Panicking at our local grocery store, as I looked for gluten-free food for the first time. I only came home with eggs, Cheetos and Corn Pops (which now are no longer gluten-free).
  • Being so happy that my husband had gotten me a bread maker for Christmas the year before; a gift my male co-workers thought was so dumb, ended up being such a blessing so I could make gluten-free bread.
  • Feeling the joy after only 7 days on the gluten-free diet, Emma was a completely different child. Happy and no longer sickly.
  • Being frustrated because I had to convince many friends and family that celiac is a lifetime disease and her diet had to be taken seriously.
  • Grieving the loss of “normalcy”.
  • Being relieved after finding other parents who had recently started a celiac support group. We all came together and eventually started planning our annual fundraiser: Making Tracks for Celiacs.
  • Fast forward to 4 years later….
    1. Being nervous about sending Emma to Kindergarten, but pleased we found one hot lunch she could take: Tacos!
    2. Celebrating victory when she ate tacos for the first time at school and they were “awesome!”
    3. Feeling bad when I had to tell her that tacos were no longer available on the menu.
    4. Making 3+ years of daily cold lunches for school.
    5. Feeling victorious when our school found gluten-free food options for Emma, which led to a gluten-free menu!
    6. Feeling strong enough as a mom of a celiac child, that we took in Ida, an exchange student with celiac; I started this blog; and I am teaching an occasional gluten-free class.
    If you’re reading this as a mom of a child newly diagnosed with celiac, you may be able to relate to just a few things in this post — but that will likely change. As time goes on, the overwhelming shock of the diagnosis and diet will subside. With education and support you will feel stronger, more confident and ready to not only ensure your son or daughter is getting the right foods, but that you’re empowering them with the same tools to manage this gluten-free lifestyle on their own.

    Now that’s a great mom! Happy Mother’s Day!

    As always, Celiac.com welcomes your comments (see below).


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    6 Responses:

     
    Gracie Bost

    said this on
    16 May 2009 9:22:38 PM PDT
    I read your article and found it very helpful. My granddaughter was diagnosed last week. She is 2 1/2. I have been thinking a lot about school lunches since I was a k5 teacher and know all about what kind of hardships that can bring. She had 2 birthday parties to go to today and my daughter was making her her 1st gluten free cake (wacky cake). I don't know how that turned out. My daughter is very very proactive and is taking this on as a great challenge. She is a self proclaimed nutritionist and has taught classes on it.
    Back to my grandbaby. She is totally not herself. She is on her moms hip 24/7.
    Now, her Dr. looked at her and then to me and said 'Get tested. You probably both have it. I have had lifelong tummy issues.
    Here's to looking forward. It is something treatable we know and very glad it is celiac instead of anything else.
    Thanks again for your article.

     
    said this on
    20 May 2009 8:46:44 PM PDT
    I have been on the computer trying to research how to start a ROCK support group in Colorado Springs, Colorado. I came upon your post and identified with it in so many ways that I cried. My daughter is almost 7 years old and although so much better I am grieving today that Grandma gave her the sausage and cheese off of a pizza last night while I was at work and today she was a crabby zombie-just total not the fun-loving child she can be. I need help!!! I'm tired of people not taking this disease seriously!! I am reading Elizabeth Hasselbeck's new G-free diet book and it is giving me some empowerment to do more. But, like she said the drug companies do not benefit from this disease so there is little research and Doctor's who diagnose it. Any advice for me?
    Thanks for listening!!!

     
    Tina

    said this on
    29 May 2012 5:43:10 PM PDT
    Our 11 year old son has just been diagnosed with celiac disease. I just need to talk to other moms who have "been there". The gastrointestinal doctor said there was someone to talk to but they moved to another state. I am thinking, "really, just one other person to talk to? I thought 3 million people had this disease?" I am in a state of confusion, anger and helplessness right now. Thanks for any help.

     
    DeDe

    said this on
    13 Mar 2010 8:57:56 PM PDT
    Tina, I realize your post was last year, so you may not even receive my response. My 14 year old daughter was just diagnosed last week, after 5 years of the onset of her symptoms.

     
    M.W.

    said this on
    06 Nov 2012 2:33:01 PM PDT
    It all sounds so poetic, but to me it is just completely overwhelming. My 11 year old and six months later my 13 year old, both diagnosed with type 1 diabetes, and now celiac disease. It feels impossible. People are telling me "it's not that big of a deal", and maybe it isn't to some people, but if it isn't, why do I feel like it is?

     
    Loni

    said this on
    23 Dec 2013 9:36:36 PM PDT
    Just read your article and I could relate to every single word you wrote (minus having an exchange student). My 7 year old was diagnosed with lactose intolerance last week, so I feel like I'm starting all over again and very overwhelmed. It feels nice to read your blog and not feel alone. I'm still searching for a local support group. Thank you or sharing.




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    Celiac.com Celiac Disease & Gluten-Free Diet Forum - All Activity

    Hello Anonymous, and if nobody has said as much yet, welcome Don't worry (difficult to do when it can cause anxiety :P) it's very early days and you have a lot of healing to come. If you've not already seen it there's advice and further info here: It gets easier over time as checking becomes routine, you know your 'safe' products and your eating pattern changes. You'll get there Maybe start a thread of your own if you'd like some input from others? Finally, back on topic. My Aunt has narcolepsy and although she's fiercely resistant to giving up gluten she has now made a connnection to eating bread and it's onset. As often, not conclusive but suggestive...

    Hello again Well first thing is the - Usual disclaimers apply... and this is something you have to follow up with your doctors as you know. But it's helpful sometimes to get another perspective so here's this layman see's from outside. What I have seen from the various results posted here is that people's numbers vary wildly and, just as important, the numbers often don't bear any direct relationship to the level of intestinal damage revealed via endoscopy. Ultimately although you're not scoring much above positive, you are scoring a positive and there are a couple of other risk factors you've mentioned that are suggestive if not conclusive - you have another autoimmune which raises the odds of having another one for example. You've had two tests that are positive. The purpose of taking the second test was either to invalidate or confirm the first. I'd suggest it's achieved the latter, at least inasmuch as a GI may want to check you via endoscopy. That's still the 'gold standard' of celiac diagnosis and would give you an idea if there's any intestinal damage. I suspect with 2 positive tests and the history above that's what they'll suggest. If your doctor or GI doesn't want to proceed with that you have a decision to make. Push for a second opinion or new doctor or if you're done with testing give the gluten free diet a proper try. Make a journal and see if some of those subtle things you reference may actually be symptoms. Fwiw, there are a lot of people here whose thyroid issues improved dramatically once they were gluten free, so whether celiac or gluten sensitive you should certainly give the diet a try. Only however once the testing is completed and remember:

    Hi! I've just been recently diagnosed as Celiac through the whole biopsy-shebang, and I have a little bit of insight on the whole diagnosis thing and how I was eventually diagnosed, and my advice for you. Brace yourself, this might be a bit long, but it might be worth the read and I promise I will eventually get to the point. If you don't want the huge story, skip to the long line of capital As: I first saw my doctor when I had a few problems swallowing. I've compared it to when you're nervous and you feel like you have a lump in your throat - but after I eat and (sometimes) drink. I just mentioned briefly it to my family doctor when I was addressing another issue, but right away he referred me to a gastroenterologist and ordered a barium swallow x-ray test. The x-ray came back completely normal, and so the g.e. then suspected GERD, put me on acid blockers to see if they would work, no harm done sort of thing. The only thing I got out of the acid blockers were the side effects, so it was back to square 1. The g.e. said that the next test he could do was an upper endoscopy with biopsies. (hint: the celiac test!) Wanting to find a solution to my problems, the endoscopy was scheduled. Pretty painless, I was in and out in a day, but the results took much much longer. Biopsies, or the little pieces of my esophagus, stomach, and small intestine, were sent to the lab, and they came back clean. I didn't really go back to the g.e. for a whole year after that because life became busy, I wasn't prompted to follow up, and I just dismissed the swallowing problems the best I could and went on my way. Now, I've never been huge on the gluten, big bread-y sandwiches or croissants or pies were never foods that I super "enjoyed". I wouldn't feel bad after eating them, I just didn't like the taste of bread so much, but I loved cookies, cake and a lot of other things that do have gluten in them. I lead a lowish gluten life but I wasn't really monitoring it that way. Everything changed when I got really nasty (systemic) poison ivy. My eyes were swollen shut, and the rash was everywhere. I almost went to the hospital, but cooped out at the family doctor's place and got a script for prednisone (a steroid). But, I found that after I had tapered off the steroids, I had magically become lactose intolerant. So back to the family doctor again probably because I broke my toe or something, but we also got to talk about this magical lactose intolerance business (because I love anything dairy and it was indeed devastating). He was surprised as there is literally no correlation between steroids and becoming lactose intolerant. He asked me if I still had the swallowing problems, which I did, and so it was back to the g.e. for round 3. because my family doctor "does not believe in coincidences". Meeting with the G.E., he mainly addressed the swallowing problems telling me that he had done what he could to diagnose with the technology that we had at the highly specialized hospital that we were at, and I would have to travel about 3 hours away to see a different doctor who would do some tests involving the muscles in the esophagus. But right before I was about to leave, we started talking about lactose intolerance. He brought up other foods that I was avoiding (if any), and then the conversation went to gluten. I mentioned that I had an aunt that was gluten-sensitive. He advised that I do the blood test that can show an indication of celiac whenever in the future. I decided to do it that day. At this point in time, I was not eating much gluten because of the fact that it was personal preference. The normal range for values in this test is from 0 to 20. A few weeks later, I learned that I scored a 35. A second upper endoscopy with biopsies was scheduled, but this time I was told to eat a moderate amount of gluten everyday before the procedure. I ate about two slices of bread per day, which is more than I normally would. I was normal for the first two-three weeks of the gluten plus diet, but then I became really sick. I started getting the normal celiac symptoms, like diarrhea and extreme tiredness. Near the end, I had debilitating stomach pain and I was 2 times more asleep than awake each day. I couldn't do the 2 pieces of bread a day some days, but the pain was still there. I knew that I wouldn't ever have to force myself to eat bread for a test ever again. I was called a few days before my endoscopy telling me that a kid in a worse state than me had to take the OR during my time. I forced myself to eat more bread for another month and a half. The day finally came. I was diagnosed celiac, which I have concluded to be initiated by (1) the steroids/poison ivy and (2) the gluten binge fest. AAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAA Celiac Disease isn't completely understood yet. Most of the time if you weren't showing symptoms when you were a baby (so your case) it means that celiac was/could be triggered by an event in your life that causes stress on the body (like stress, physical injury, etc.). The positive result that you got from the blood test doesn't automatically mean celiac, but it could. Here's some options: Talk to your doctor (or a different doctor) or even a specialist gastroenterologist (you can get a referral from a family doctor (general physician)) and see if you can do the blood test again, you have to have some kind of gluten for this to work in advance, so if you don't want to break your gluten-free streak, than don't really invest in this option. If you feel comfortable, you could even ask to do this test under a few scenarios (no gluten (now) and after a gluten binge, compare results). If you do this test and your indication is low off gluten and then high after gluten, I'd probably skip the biopsy. That's a strong enough sign that you don't need to put yourself through the painful-gluten binge. Maybe this is what that first doctor just assumed. But having that test when you haven't had any gluten could make the difference - it acts as a control. Go straight to the biopsy. You could do this, but I'd probably do the blood test first. I went through a lot of stress with the gluten-binge that you have to do to get an accurate result, you would also be breaking your gluten-free diet that may/may not be helping you right now. Do nothing, stay on your gluten free diet hoping that it is helping you. But if you are not celiac or gluten-sensitive (celiac before it starts to wreck your small intestine), going gluten free isn't healthy - you can do some research on this if it interests you. If you feel bad/unhealthy after going gluten free it's probably a sign. Good luck, also know that you might come to a point of stress in your life that can start celiac's destructive path. Ultimately, it is your body, and you should not feel forced or hesitate to act on health issues that impact you.

    I'm sorry that life is so hard right now. Really. I can't imagine working 3 jobs and trying to manage this terrible illness. I think about American society and their obsession with food often. Whenever you look at the internet, there are all these fabulous gluten-free recipes, but when you don't have time or money to cook these things, a simple gluten-free lifestyle is just that - simple. There isn't a lot of variety, so it's kind of boring. But, I guess I have gotten used to being boring. I just eat corn chex and fruit or yogurt for breakfast. I eat a lot of eggs, beans, rice, corn tortillas, nuts, chicken, fruit and veggies. A loaf of gluten-free bread will last me 4-6 months in the freezer. I buy a bag of dried beans for $1.29, I soak them overnight, and put them in the crockpot the next day. I add different spices, sometimes chicken and Voila! - dinner is ready when I get home from a long day. Family gatherings are miserable and I haven't quite figured out the best way to deal yet. If my grandmother were still alive, I imagine she would be a lot like yours - well-meaning but not really able to understand the nitty-gritty. I just reassure my family that I am fine and that they really shouldn't do anything special for me. I bring a bag of Hershey's kisses or other gluten-free candy I can nibble on along with my meal and then I try to treat myself to a nicer home cooked meal later in the week when I have time to cook - because who has time to cook during Christmas???? And, I agree with knitty knitty. If someone else in your family/friends were gluten-free for medical reasons, it would make socializing a bit easier. One of my husband's good friends is NCGS. When we get together as a group, we can make each other special dishes and it helps to feel less isolated. Good luck!

    Hi! Um, please forgive my quirky sense of humor..... Celiac Disease is genetic... All first degree relatives of people diagnosed with Celiac Disease should be tested for the disease, too. Gall bladder problems are often associated with Celiac Disease. Your diagnosis might save your whole family from further medical problems as they age and the disease progresses... You need to set a good example if relatives are similarly diagnosed.... and then everybody will have to eat gluten free at family gatherings....