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

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Amy Leger

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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 biopsy. She was fighting and crying and then her whole body went limp.
  9. 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).
  10. 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.
  11. Feeling the joy after only 7 days on the gluten-free diet, Emma was a completely different child. Happy and no longer sickly.
  12. 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.
  13. Grieving the loss of “normalcy”.
  14. 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!
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Guest Gracie Bost

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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.

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Guest Tina from Colorado

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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 gluten-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!!!

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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.

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Guest Tina

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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.

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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?

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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 06/15/2018 - There seems to be widespread agreement in the published medical research reports that stuttering is driven by abnormalities in the brain. Sometimes these are the result of brain injuries resulting from a stroke. Other types of brain injuries can also result in stuttering. Patients with Parkinson’s disease who were treated with stimulation of the subthalamic nucleus, an area of the brain that regulates some motor functions, experienced a return or worsening of stuttering that improved when the stimulation was turned off (1). Similarly, stroke has also been reported in association with acquired stuttering (2). While there are some reports of psychological mechanisms underlying stuttering, a majority of reports seem to favor altered brain morphology and/or function as the root of stuttering (3). Reports of structural differences between the brain hemispheres that are absent in those who do not stutter are also common (4). About 5% of children stutter, beginning sometime around age 3, during the phase of speech acquisition. However, about 75% of these cases resolve without intervention, before reaching their teens (5). Some cases of aphasia, a loss of speech production or understanding, have been reported in association with damage or changes to one or more of the language centers of the brain (6). Stuttering may sometimes arise from changes or damage to these same language centers (7). Thus, many stutterers have abnormalities in the same regions of the brain similar to those seen in aphasia.
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    My own experience with stuttering is limited. I stuttered as a child when I became nervous, upset, or self-conscious. Although I have been gluten free for many years, I haven’t noticed any impact on my inclination to stutter when upset. I don’t know if they are related, but I have also had challenges with speaking when distressed and I have noticed a substantial improvement in this area since removing gluten from my diet. Nonetheless, I have long wondered if there is a connection between gluten consumption and stuttering. Having done the research for this article, I would now encourage stutterers to try a gluten free diet for six months to see if it will reduce or eliminate their stutter. Meanwhile, I hope that some investigator out there will research this matter, publish her findings, and start the ball rolling toward getting some definitive answers to this question.
    Sources:
    1. Toft M, Dietrichs E. Aggravated stuttering following subthalamic deep brain stimulation in Parkinson’s disease--two cases. BMC Neurol. 2011 Apr 8;11:44.
    2. Tani T, Sakai Y. Stuttering after right cerebellar infarction: a case study. J Fluency Disord. 2010 Jun;35(2):141-5. Epub 2010 Mar 15.
    3. Lundgren K, Helm-Estabrooks N, Klein R. Stuttering Following Acquired Brain Damage: A Review of the Literature. J Neurolinguistics. 2010 Sep 1;23(5):447-454.
    4. Jäncke L, Hänggi J, Steinmetz H. Morphological brain differences between adult stutterers and non-stutterers. BMC Neurol. 2004 Dec 10;4(1):23.
    5. Kell CA, Neumann K, von Kriegstein K, Posenenske C, von Gudenberg AW, Euler H, Giraud AL. How the brain repairs stuttering. Brain. 2009 Oct;132(Pt 10):2747-60. Epub 2009 Aug 26.
    6. Galantucci S, Tartaglia MC, Wilson SM, Henry ML, Filippi M, Agosta F, Dronkers NF, Henry RG, Ogar JM, Miller BL, Gorno-Tempini ML. White matter damage in primary progressive aphasias: a diffusion tensor tractography study. Brain. 2011 Jun 11.
    7. Lundgren K, Helm-Estabrooks N, Klein R. Stuttering Following Acquired Brain Damage: A Review of the Literature. J Neurolinguistics. 2010 Sep 1;23(5):447-454.
    8. [No authors listed] Case records of the Massachusetts General Hospital. Weekly clinicopathological exercises. Case 43-1988. A 52-year-old man with persistent watery diarrhea and aphasia. N Engl J Med. 1988 Oct 27;319(17):1139-48
    9. Molteni N, Bardella MT, Baldassarri AR, Bianchi PA. Celiac disease associated with epilepsy and intracranial calcifications: report of two patients. Am J Gastroenterol. 1988 Sep;83(9):992-4.
    10. http://ezinearticles.com/?Food-Allergy-and-Stuttering-Link&id=1235725 
    11. http://www.craig.copperleife.com/health/stuttering_allergies.htm 
    12. https://www.celiac.com/forums/topic/73362-any-help-is-appreciated/
    13. Ford RP. The gluten syndrome: a neurological disease. Med Hypotheses. 2009 Sep;73(3):438-40. Epub 2009 Apr 29.
    14. Hadjivassiliou M, Gibson A, Davies-Jones GA, Lobo AJ, Stephenson TJ, Milford-Ward A. Does cryptic gluten sensitivity play a part in neurological illness? Lancet. 1996 Feb 10;347(8998):369-71.

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