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Gluten-Free Sanity: Become a Support Group

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Amy Leger

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My husband and I had been in “survival mode” for about 3 months; back in October of 2000, our then-18-month-old daughter was getting strong and healthy on the gluten-free diet.  But I needed more for my sanity.  I couldn’t keep feeding my daughter only hamburger, eggs and French toast until she was 18.  I needed to find people battling the same issues as me.  I tracked down the only celiac support group in my area, but it catered to adults.  But that is where I met the women who were about to change my whole perspective on managing a gluten-free childhood.

With just three families, the women started a local support group for parents back in 1998.  “[We] knew that we could all help each other if we banded together”, co-founder Julie Jones says of those days now 10 years ago. Lynda Benkofske is the other co-founder of the Twin Cities Raising Our Celiac Kids chapter in Minnesota.  “I wanted to network with other families that were dealing with ‘kid stuff’ [like preschool and fast food restaurants]“, Lynda recently told me.  My family became one of those families Lynda was talking about.  We went to our first meeting in October of 2000. It was great!  I felt so empowered; like a weight had been lifted off my shoulders.  “We could comfort parents who were frustrated that no one else understood the difficulty of what they (and their child) were going through.  I still feel that rewarding feeling every time I leave a meeting today”, Jones says.  Clearly the group struck a chord.  In ten years, the Twin Cities ROCK chapter went from 3 families to 180+ families.

The meetings also enlightened me about everything from gluten-free donuts to McDonalds French Fries; food information that was priceless to me and helped me persevere through the tough times.  A 2007 study supports what I and many others have felt.  Research at Beth Israel Deaconess Medical Center in Boston, Massachusetts found: “…support groups may be a productive way to improve…adherence to gluten-free diets.”   The findings were no surprise to Jones, who said the study “…matches what we have seen at meetings over the years.”

The research looked at what issues might affect a celiac’s adherence to the gluten-free diet including anxiety, depression, difficulty in finding gluten-free foods, and the avoidance of gluten to avoid symptoms.  The findings showed the cost of gluten-free food and “…changes in mood and stress levels affected the ability to…follow the gluten-free diet.”  It said the solution was to provide patients with education and support group connections; patients who followed through were more likely to stick with the diet.

Shelley Gannon, wife of retired NFL quarterback Rich Gannon told me she agrees. “The information [members of the parents’ support group] shared was invaluable”.  She believes “…everyone should be a part of a group in some way.  There is no way one person could learn all the information [by] themselves.”  The Gannon family was a very early supporter of this group and groups like it after their daughter Danielle was diagnosed at a young age.

So what can you do right now if you are struggling to find a support group?
  • Find an online support group to get you started.  You can find one almost instantly using any search engine.  In an online support group, you will always find someone available to help you with questions until you find a traditional support group. 
  • Get into a traditional support group. If you attend a support group in person, you will likely find it to be a more personal and rewarding experience.  Building a personal network can strengthen your confidence in conquering this diet.
  • Be an Innovator!  If you still can’t find a group that is a good fit, Benkofske recommends starting your own, “…if you have the passion to help others while at the same time helping your own family, go for it!” 
So here’s to you being savvy, getting inspired and saving your sanity!  Become a gluten-free groupie!
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  • Recent Articles

    Jefferson Adams
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    Jefferson Adams
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    Dr. Ron Hoggan, Ed.D.
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    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.

    Jefferson Adams
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    Source:
    Journal of Clinical Pathologyhttp://dx.doi.org/10.1136/jclinpath-2018-205023

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