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CeliacMommaX2

Do You List "gluten" As An Allergy?

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When you fill out paperwork for medical, school, camp, etc info, do you list "gluten" as an allergy?  I want people to be aware and wonder if mis-informing people (by saying she has a gluten allergy) would keep my daughter safer in various environments.  I also wonder if I need to list wheat, barley, and rye specifically since there are still many people who don't know what gluten is...

Thoughts?


Mom to 2 young kids with celiac, diagnosed March 2015

*Gluten free household

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I do.  I list it under food allergies and in the medical issues area on paper work.  I usually write : Has Celiac disease - cannot eat gluten (wheat, barley, rye, etc) - please do not give him food.


Nicole 

"Acceptance is the key to happiness."

ITP - 1993

Celiac - June, 2012

Hypothyroid - August, 2012

CANADIAN

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I write it on my stuff just like Nicole says - Celiac disease - NO gluten - wheat, rye, barley, oats.

I add oats because non- gluten-free oats aren't OK but a camp or hospital might serve granola or oatmeal.

When I had a outpatient procedure, the recovery nurse asked what I could have and we settled on Sprite and applesauce - nothing else. There may have been things like jello or juice I could have but it was easier to just list the drink and the food they were going to give me and not give them choices to confuse them.


 

 

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On the allergy line of camp and school forms, we also put "wheat, rye, barley, oats (celiac disease - must avoid even tiny amounts, but antihistimines won't help)," or something like that. Several camp directors and pharmacists have advised that we list it as an allergy, because staff are generally well-trained to take food allergies seriously, and any substitute or new staff member who looked at the form would see the allergy flag immediately. However, I add the bit about antihistimines because if she ever was given gluten inadvertently, I don't want them to compound the problem by then giving her an antihistimine with unverified ingredients.

Even her primary care doctor, who knows celiac isn't an allergy, told us he was listing it as an allergy in their computer system to make sure the info was displayed prominently.


Daughter: Positive tTG-IgA, DGP-IgA, and DGP-IgG. Celiac confirmed by biopsy in June 2013, at age four. Clear gastrointestinal, behavioral, and neurological/sensory symptoms since very early infancy, even when exclusively breastfeeding.

Me: Diagnosed by GI with "presumed celiac" based on health history, celiac in family, and resolution of fat malabsorption and many other symptoms on gluten-free diet. Long history of eczema, chronic diarrhea, steatorrhea, ataxia, peripheral neuropathy, infertility, chronic insomnia, low cholesterol, vitamin deficiencies, and joint pain. Negative celiac tests after 15 years gluten-light and then a brief but awful gluten challenge. 

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Yep.  All of the above.  I write "Celiac Disease - can not eat or play with gluten (wheat, oats, rye, barley).  All food will be sent from home." in the allergy area AND the "other" area. 

 

I do it to get a straight flag to the nurse.


Angela

Undiagnosed, but I'm positive that I'm the genetic link to celiac for my kids.  Gluten Free in solidarity of my girls!

Kid 1 (9 y/o girl) - DX celiac via blood in 9/2013 (age 7.5).  Negative biopsy in 10/2013.

Kid 2 (5 y/o boy) - DX as "latent celiac" via blood in 9/2013 (age 3.5).  Negative biopsy in 10/2013.

Kid 3 (3 y/o girl) - DX celiac via blood in 8/2013 (age 1.5) and 9/2013. 

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Depending on the situation, yes I list as an allergy as that is what most people understand. And if I had a celiac child I think I would be writing it in red!!!!

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