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      Frequently Asked Questions About Celiac Disease   04/07/2018

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes
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Teagan's mom

Daughter glutened by friend of the family.

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My daughter (6) was recently glutened by a friend of the family.  She gave her a drink that didn't have gluten in it but was made at a factory that has gluten contamination.   She recently just started a brand new school because we hadn't diagnosed her allergies yet and she has severe behavior problems when she is glutened and she wore out her welcome at Catholic School.  We were keeping her gluten free and her behaviors were wonderful.  Like I said she started the new school and was doing great unbeknownst to me she was glutened and I did not know.   She had a terrible week at school punching people kicking people hit and kick the principal. She is wet the bed every night for 8 days.  Is there any way to flush this out of her system faster.  Normally when she gets glutened it's a 10 to 14 day process.  It hasn't happened in a long time..... Right now I can't even send her to school.

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Yeah I tend to have Mr. Hyde come out with gluten exposure. Honestly he was not present with my last few minor issues....anyway. Plenty of fluids, bone broths if she can do them. whole food soups. Avoid processed foods, have more whole foods and greens. Green and herbal teas can help. NOTE there are some enzymes that can help shorten gut issues but I think your daughter is past that point so lets focus on the mood. I find foods that promote melatonin, serotonin, and happy feelings work great. I would suggest hemp but recently there has been a huge industry issue with finding a safe gluten free powder form as most are CCed now. Pumpkin Seed protein from Oregon Seed Oil company can help with mood and is rich in nutrients. I might also suggest a B vitamin complex and perhaps a magnesium complex.....NOW these are not confirmed by check out Natural Vitality Calm for kids see if it might help. I use Liquid health Stress & Energy and Neurological support to help with my mental state, but that company makes some other stuff that might address our daughters issues more, as a liquid you just mix in juice, water, or tea it is great for getting supplementation.

http://www.liquidhealthinc.com/products/

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I am sorry that your daughter was glutened.   I do not have any tips to offer except to drink plenty of fluids, rest, and have her eat as healthy as possible.  

Celiac disease is not an allergy.  It is an autoimmune disorder like multiple sclerosis, lupus, Crohn's, etc.  It  is different in that the trigger is known -- gluten.  Exposure to gluten in a celiac causes antibodies to rise and to attack the GI tract, skin or brain (not much is known about brain impact though).  The effects can last for weeks or months.    

Perhaps, your daughter has a wheat allergy?  If so, she should be evaluated by an allergist.  

Do you have a 504 plan in place at her new school?  

Edited by cyclinglady
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No I don't know what that is.  The school's been understanding but I just can't have her hurting the other kids were attacking the principal so I've decided to keep her home until she starts acting normal again.   She has not been officially diagnosed with celiacs we have an appointment soon.  She is allergic to gluten wheat and milk.  It seems like the gluten or the wheat affect her mood greatly. 

Edited by Teagan's mom

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My son is 5 and his symptoms are all behavioral and neurological. If he eats a few pretzels he will develop something called a stereotypy where his fingers become sort of stuck in distorted positions for days. Before we removed gluten from his diet, he experienced auditory and visual hallucinations, insomnia, loss of balance and fine motor, periods of confusion (doesn't know where he is), dialated pupils, chronic post nasal drip, keratosis pilaris covering torso, extreme behavioral issues, constipation and bloating. We've been to 3 neurologists, 2 allergists, an endocrinologist, psychological, psychiatrist, dermatologist,  infectious disease specialist and soon will see a gastroenterologist. He's tested negative for celiac and doesn't have the gene which would indicate gluten as an issue for him. Despite these facts, we entirely removed gluten and dairy from his diet and he is a normal happy playful child again, living the life he should be living. 

He's had a few instances of dietary mishaps at school which were difficult to recover from. We implemented the AIP diet which for us included no grains (no corn, rice or quinoa), no dairy, no legumes (especially soy), no eggs and limited nightshades. Basically, we have been eating only vegetables, fruits, meats and nuts. Nothing processed. It works. Now we are at the point of adding things back into his diet and it's going well. We've determined that he's sensitive to a particular baking mix brand called Simple Mills. So there are only two possibilities to this a) Simple Mills brand isn't as gluten free as it needs to be or b)my son is actually sensitive to baking soda.

 I also think he might be dealing with intestinal permeability or "leaky gut". I've been reading about a protein called zonulin and I question whether that could be a potential biomarker in our case. Prayers for your daughter. If you think it's a dietary trigger then you are right and I encourage you to never give up. You will find an answer if you keep looking. I promise.

 

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If she is now at a public school, accommodations can be made for disabilities.  Here is a link that explains a 504 plan and an IEP, but you will have to investigate based on your state.  

https://www.foodallergy.org/education-awareness/advocacy-resources/section-504-and-written-management-plans

https://www.understood.org/en/school-learning/special-services/504-plan/the-difference-between-ieps-and-504-plans

http://kidshealth.org/en/parents/504-plans.html

https://www2.ed.gov/about/offices/list/ocr/504faq.html

i am not very knowledgeable about this subject, so I encourage you to contact your school district for help.  Your doctor might be a good resource too.  

You might consider homeschooling until she has been diagnosed and has received treatment.  The Department of Education can direct you to homeschooling resources.  There are lots of wonderful programs out there and you can get financial support.  

I wish you all well!  

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9 hours ago, Teagan's mom said:

because we hadn't diagnosed her allergies yet

Does this mean she has a wheat allergy that is diagnosed? If so that is good as it will help get that 504 in place! 

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This sounds so much like my daughter's behavior before she was diagnosed with Celiac's in 2nd grade. My heart breaks for you...it is not easy. However, if it is the extreme stomach discomfort that is causing her behavior issues, there is a prescription drug for intestinal cramping called Dicyclomine. It can be given as needed for such emergencies.  We have also found that probiotics given regularly lessen the symptoms when she is accidentally glutened. Good news: Our daughter is 18 now, and succeeding very well in college.  A word of warning though if your daughter is that sensitive (from factory contamination): Be aware of all of the prescription and OTC drugs, make-up, shampoos, hairspray, lotions, etc.. that contain gluten, since they are not required to label products. I just recently discovered that some retainers given out by orthodontist leech gluten too. 

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12 hours ago, cyclinglady said:

If she is now at a public school, accommodations can be made for disabilities.  Here is a link that explains a 504 plan and an IEP, but you will have to investigate based on your state.  

https://www.foodallergy.org/education-awareness/advocacy-resources/section-504-and-written-management-plans

https://www.understood.org/en/school-learning/special-services/504-plan/the-difference-between-ieps-and-504-plans

http://kidshealth.org/en/parents/504-plans.html

https://www2.ed.gov/about/offices/list/ocr/504faq.html

i am not very knowledgeable about this subject, so I encourage you to contact your school district for help.  Your doctor might be a good resource too.  

You might consider homeschooling until she has been diagnosed and has received treatment.  The Department of Education can direct you to homeschooling resources.  There are lots of wonderful programs out there and you can get financial support.  

I wish you all well!  

As cycling lady said. Does your Public school district have a homebound program/ coordinator you can speak with. Perhaps as you proceed with diagnosis for celiac and work on getting the 504 in place inquire if they are willing to send a homebound instructor out.

In the meantime I would try to arrange to get the books from the teachers to pick up and work on at home. sometimes a homebound educator obtains all these materials and visits the home.

lots of water, sleep, and I always find baths soothing and relaxing. For her and I suggest one for you after you get her to sleep as well.

best wishes she is lucky to have a mom advocate for her during this difficult time .

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20 hours ago, Teagan's mom said:

Yes she is diagnosed with Wheat, Gluten, and Milk allergy.

I had no idea there was a gluten allergy! What was the testing process?

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She was diagnosed with her allergies by a blood test.  Thank you everyone for your help.  I have started her on probiotics and Nature's Vitality Call.  I live you n a very small town so I could not find the other suggested items but am looking online😄.  I am hoping to keep her in school but it's nice to know I have options if I can't.  Thank you again.

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