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Member Since 24 Feb 2009
Offline Last Active Aug 28 2015 09:41 AM

#930063 New Here And Need Help With School Policy

Posted by on 09 September 2014 - 05:05 AM

The potential of a kid dying due to allergies extends far beyond nut allergies. One of my children has anaphylactic wheat allergy and had to be hospitalised twice with emergency surgery before we could get the school to consider her needs seriously.

I don't think most here generally oppose accommodating nut free school policies, but the "no one can eat food from a nut shared facility" is an impossible "policy" and demonstrates dangerous ignorance from the very people responsible for keeping ALL children in their duty of care safe. I have never run across the suggestion before that such an imposing policy is required for any allergy. I would appreciate if anyone can share information that supports such an extreme policy. I would be very curious what the school policy is for children when they get to school for hand and face washing of all students, as that seems a far more legitimate exposure potential in our experiences.

HappyPlace, I am sorry to report that every single Freedom Foods product in my cupboard with one exception had rice in it. Good luck getting it all sorted. We had a very hard, hard, hard time when we started in the school system in the US. I hope that you have understanding and compassionate people to work with.
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#929940 New Here And Need Help With School Policy

Posted by on 08 September 2014 - 06:28 AM

But the "policy" is fundamentally flawed, and that is the issue in my opinion. Technically, the home kitchen is a facility with nuts. I appreciate the severity of nut allergies, and we are very mindful of our own consumption to minimise/avoid risk to others. But policies that have to be ignored to be practical are dangerous. We ask which allergies are in our kids' classrooms and other close classes. We no longer need nut products in their school diets, so they eat nut free at school. As well, they wash face and hands with soap and water after eating nut products at home before school. Those types of policies are more important than declaring an impossible and impractical policy that cannot be understood and reasonably implemented. We also keep kiwi at home because our current school has an anaphylactic kiwi allergy child.

I hope you can find some safe foods that are practical for you and your child. Freedom Foods and Orgran are a couple of Australia brands that cater to gluten free living, and both have comprehensive nut policies as well. My kids eat a fair bit of food at school. I don't know the extent of your restrictions, so let us know if you want more food/snack ideas. My kids like sausages with beans, sun butter and jelly sandwiches, roasted zucchini with rosemary oil, salt and pepper, red pepper/carrots/celery with and without hummus, oranges/apples/nectarines/peaches/blueberries/strawberries, corn chips/tortillas with nacho/taco fixings, potato chips, cheese, custard, yogurt. All of my kids eat differently and their preferences change over time.
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#927364 Could Your Retainer Be Preventing Healing? Yes.

Posted by on 13 August 2014 - 09:02 PM

Thank you for sharing this information!  We are doing remedial orthodontic work to correct issues from bad teeth that formed prior to our understanding the severity of our gluten issues.  And my gratefulness carries our usual caveat that our experiences are unique and not customary for most celiacs.  Next disclaimer:  in addition to our celiac issues, we also have severe wheat/gluten allergy issues.


Anyway, we started treatment with a "plate".  It contains the plastic bit like a retainer, but it is permanently fixed.  I took the shotgun approach of put it in, deal with problems if they arise . . . because well, it is plastic.  Anyway, four months later, our daughter has developed chronic respiratory issues with facial swelling that are only partially responding to allergy treatment protocols.  Our orthodontist was grateful for me to bring this case study to his attention, and it helped shape our action plan moving forward - get the plate and plastic out ASAP.  He found the case study to be a very plausible and possible scenario for a cause in the symptoms and issues that we are trying to manage (same material is used in her plate as was found to be the culprit in this case study).  I am so glad that this information was shared on the board, as is my daughter.  Thankfully, he uses a different material for the future retainers that my daughters will need.

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#889373 2 Year Old Screaming At Food, Please Help Us!

Posted by on 22 September 2013 - 07:04 PM

We got a body poster (kid type - labels for the different body parts) to help us better understand our children communicating pain. Sometimes it was easier for them to point to the body chart in their efforts to explain their pain to us. Good luck getting it sorted.
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#869543 18M Old - With Genetics Against Her

Posted by on 19 May 2013 - 04:10 AM

Just wanted to pop in and let you know that our family has had heaps of difficulties with diagnosis and protocol development in our journey. To make progress, our family adopted a gluten, dairy and soy free diet. We experienced some extensive complications that resulted in hospitalisations for one of my children, most likely due to chronic gluten exposure at school. Our family manages both celiac and gluten allergy, and two of my gluten-free children report that Zyrtec helps with the bellyaches. We also find Zyrtec helpful in managing the extensive skin issues that we endure when our gluten exposures are not managed with enough diligence. We have been able to navigate childcare as well, and if your centre has good allergen training, they should be able to manage your child's medical condition well. Play dough is often one of the more difficult ones to work through for early childhood activities, and we have approached that in several different ways.

I am happy to share more specifics of our experiences if you want, and we have entirely more experience with juevenile arthritis issues than I want (a complication that I had not seen coming after months of extensive and chronic skin issues). I hope that you are able to find relief soon. We really had to scale back all dietary variables as much as possible to make good progress. We then had to refine our environmental exposures to ensure our good health. You may want to review "atopy" as it sounds like you may be dealing a bit with that. I didn't read all of the pages of this thread, so apologies if I missed important info. While my kids have not had elevated IgE readings, my skin tests and family history lead them to allergy predisposition. As such, and based on their past reactions, they each have a specific Allergy Action Plan. Good luck navigating this diagnostic process.
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#816238 Being Celiac In America Is Unacceptable!

Posted by on 06 August 2012 - 05:30 AM

Our family moved from America to Australia, and it has been fabulous. I appreciate the more stringent labelling and inspections in Australia. And best of all is the abundance of "no detectable gluten" food that can be found in so many places here. I really hope that Australia maintains their current standards and that other countries follow their lead.
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#782932 New

Posted by on 26 March 2012 - 03:43 AM

am finding that zyrtec (in liquid form, which is lactose free) is very helpful in reducing the severity of symptoms

Ooohh, thanks for sharing this note. I have been using liquid only because that is what we always have on hand since I am dealing with kids. I recently got tablet form because it seems easier to always keep it in my purse or to just carry it in my pocket (so much smaller!) . . . but I have not yet trialed the tablet form. I also appreciate that I can do smaller dosing with the liquid form, as that is usually enough to get me over the edge of a reaction (we use it for respiratory/asthma and skin reactions, including itching).
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#782886 New

Posted by on 25 March 2012 - 06:42 PM

You may also want to check out catsmeow posts about introducing Zantac to help with her wheat allergy. We have found it helpful to work with a doctor group that specialises in gluten intolerance, in addition to our other doctors (as they each seem to figure out different pieces). The gluten intolerance doctors were able to identify a complicating infection for one of us, and we have been very pleased that they seem to have been able to expedite our healing in this process.
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#782883 New

Posted by on 25 March 2012 - 06:35 PM

Welcome to the board! It sounds like you may be dealing with allergy issues in addition to possible celiac complications. We have found it necessary to work with a team of doctors because we have been unable to find a single doctor to manage both our allergies and our celiac. I did find conventional allergy testing helpful, although it was a difficult experience. We have found that Zyrtec (generic cetirizine too) works well for us as our primary antihistamine, and we find an effective antihistamine very helpful in managing our allergy complications as we also manage the celiac. We have found a diet of simple, whole foods to be the easiest way to root out all of our complicating issues, and we found that a gluten, dairy and soy free diet was the basic first step for our family. We have used rice and nut milks as our dairy substitutes, but we have also had to take great care in those foods to investigate if they as gluten free as our family requires.

Good luck in figuring out your puzzle! It has been quite a process for our family, and it certainly has helped us to reach out to support groups as we have tried to decipher our celiac and allergy issues.
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#780297 If You Have Celiac Disease, Would You Keep Your Children Gluten Free For Life...

Posted by on 12 March 2012 - 08:11 PM

I don't think that living gluten free is tragic, and I would help my family be gluten free. I do think it is odd that so many people are obsessed with eating gluten, often with a chunk of dairy. It seems that many people focus their diets on processed gluten foods with dairy, and I think *that* is tragic.

What my kids did away from home would be primarily up to them (assuming they are capable of cleaning themselves sufficiently when returning home), and if they started having symptoms/issues, we would work through that together. My kids seem quite pleased to have a nice selection of gluten free foods to eat when away from home, and we have had many gluten eating people comment that they envy the foods we eat.
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#776674 H. Pylori

Posted by on 26 February 2012 - 11:51 PM

Welcome to the board, bcsamm! I think several, if not many, people here have h. pylori experience. My DD was treated for h.pylori, and she is also treated for celiac. The story is long and complicated. I think there is some relationship between the two, but I don't have any links handy. The untreated celiac gut is susceptible to all sorts of things, as it is constantly injured (assuming the standard cultural diet of daily gluten).

My DD's case was very different (and she never has bellyaches, nor did she have any typical symptoms associated with h.pylori), as she had been treated with a gluten free diet for years when we identified and treated her h.pylori infection. I hope that your DD is feeling well. My DD's h.pylori protocol was similar to the one that you describe, and we did see improvement in her condition upon completion of her treatment. We also needed to address our DDs B12 issues, as she hadn't been properly absorbing B12 for some time (top suspect is our DD's severely injured gut just didn't allow for absorption). We have also had to work on our DD's iron levels.

There is a lot of change in simply adopting a gluten free diet, so your DD has a lot going on right now. I hope that she is feeling better quickly. Our kids have had issues wax and wane, so it hasn't been a really clear cut path. We have found that a whole foods diet prepared at home is the most effective treatment for them (and we had to adopt a gluten free home early in this journey). And we have found it necessary to do everything possible to eliminate the risks of gluten exposure in school.

When all else fails for my other DD with frequent bellyaches (also celiac, but tested negative for h.pylori), I massage her belly. We have also used heating pads. Sometimes we just cannot understand what all is playing into it, so coping with it is all that we can figure out to do. Please let your DD know that there are other kids out here that understand the struggle! My kids always appreciate when I can tell them about other kids that I read about here that have shared in similar struggles with celiac . . . and all of the stuff that seems to come along with it!

Take care and ask all the questions you want. We are happy to help you, as many of us understand how overwhelming and complex this can be.
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#774342 Does Super Sensitivity Exist?

Posted by on 18 February 2012 - 07:37 AM

As a 90 page document, I have found the FDA publication, Health Hazard Assessment for Gluten Exposure in Individuals with Celiac Disease: Determination of Tolerable Daily Intake Levels and Levels of Concern for Gluten by the Office of Food Safety Center of Food Safety and Applied Nutrition Food and Drug Administration in May 2011, to be a wee bit overwhelming. However, it seems to be packed full of good information for those of us trying to better understand the concerns that gluten exposure may present to those with celiac disease.

The full document can be found here:

I will highlight some of the stuff that has interested me, and I am curious what things may have stood out to others with regards to the existence of super sensitivity.

On page 12, it summarizes this FDA Health Hazard Assessment of May 2011 as, “A survey of the available published literature that included dose-response information on the adverse health effects of gluten (or toxic protein derivatives of gluten) in individuals with celiac disease was conducted.”

Since the surveyed articles talk about mg of gluten per day, it has helped me to consider what that means in a PPM setting. For example, I often consider the study used to support the proposed 20 ppm labeling law: Catassi C, Fabiani E, Iacono G, D’Agate C, Francavilla R, Biagi F, Volta U, Accomando S, Picarelli A, De Vitis I, Pianelli G, Gesuita R, Carle F, Mandolesi A, Bearzi I, Fasano A. A prospective, double-blind, placebo-controlled trial to establish a safe gluten threshold for patients with celiac disease. Am J Clin Nutr 85: 160-166, 2007 . In this study 10 mg a day were found to be tolerated by most of the study participants. They considered how much of these foods someone might eat, and proposed that a concentration of 20 ppm would be safe. So 10 mg a day would correspond to a 20 ppm safe level for gluten free foods.**

But I think that there remains the question, are some individuals sensitive to lower levels than the 20 ppm "safe" level that has been defined by this study? In the FDA's Health Hazard Assessment of May 2011 (FDA HHA), on page 28 they state about the above described safe threshold study, “Also, it appears possible that the most sensitive celiac patients were not considered for analysis in this latter study, because those with any initial small intestine mucosal abnormalities after a one month pre-challenge strict GFD period (n=4 subjects), and a few subjects that experienced acute clinical symptoms in response to the gluten challenge, were excluded from consideration."

And the paper itself says this: “One patient challenged with 10 mg gluten/d showed typical signs of relapse (vomiting, diarrhea, and abdominal distension) after 6–8 wk of microchallenge but refused to repeat the t1 evaluation. “ It seems clear to me that some celiacs may not tolerate 20 ppm foods.

In this next study a daily dose of 1.5 mg gluten/day was found to cause a reaction in some participants. If 10 mg/day being tolerated relates to 20 ppm being safe, then 1.5 mg/day not being tolerated would relate to 3 ppm not being safe for these very sensitive individuals.

This study by Chartrand L, Russo PA, Duhaime AG, Seidmain EG. Wheat starch intolerance in patients with celiac disease. J Am Diet Assoc 97(6): 612-618, 1997, was also considered and on page 30 of the FDA HHA states, “they underwent a gluten challenge of 1.5 mg gluten/day” and “2 of 17 adults diagnosed as having celiac disease by ESPGN criteria reacted with adverse clinical effects to a gliadin challenge within an acute time period.” Page 31 of the FDA HHA further decribes that, “onset of adverse symptoms occurred within 1 to 3 months of daily consumption of portioned amounts of the test food products in 11 of these challenged subjects.”

And another study considered found reactions with 4 mg gluten/day. Again, if 10 mg gluten/day being tolerated corresponds to 20 ppm being safe, then 4 mg gluten/day would correspond to 8 ppm not being safe. From Ciclitira PJ, Cerio R, Ellis HJ, Maxton D, Nelufer JM, Macartney JM., Evaluation of gliadin-containing gluten-free product in coeliac patients. Hum Nutr Clin Nutr 39C: 303-308, 1985, “the LOAEL for clinical adverse effects was as low as about 4 mg gluten/day.”

And then there is the case study that found symptoms with only 1 mg gluten per day for a very sensitive individual. Again, if 10 mg per day being tolerated related to 20 ppm being safe, then 1 mg per day not being tolerated may relate to 2 ppm not being safe for some. Page 34 reports on an “estimated intake of approximately 1 mg gluten per day. While clinical and other physiological adverse effects of gluten exposure resolved on this “strict” GFD, multiple duodenal mucosal biopsies during this time showed an elevated number of IELs and persistent severe VA (classified as Marsh 3), along with levels of a few, but not all, celiac-related antibodies (e.g., TTA, tissue transglutaminase; IgG AGA, anti-gliadin antibodies) noted as “borderline.”" That is from Biagi F, Campanella J, Martucci S, Pezzimenti D, Ciclitira PJ, Ellis HJ, Corazza GR. A milligram of gluten a day keeps the mucosal recovery away: a case report. Nutr Rev 62(9): 360-363, 2004.

There is also the case study where the reaction would relate to 3 ppm not being safe. As “an exposure of 10 mg gluten (one time) per week, or if averaged over a week, it would reflect about a 1.4 mg gluten exposure per day” where “an intestinal biopsy revealed the presence of “partial villous atrophy.”” This one is by Scotta MS, De Giacomo C, Maggiore G, Siena S, Ugazio AG. Eucharistic problems for celiac patients. N Engl J Med 307(14): 898, 1982.

It seems that the research indicates that there ARE people who are sensitive well below a 20 PPM threshold. I find it fascinating that with these indications of adverse reactions by some celiacs to well below the "suggested safe" level of 20 PPM that there are not more who advocate for lower thresholds of detection.

LOAEL = lowest observable adverse effect level
GFD = gluten free diet
IEL = intraepithelial lymphocyte cell count
VA = villous atrophy

**As a tangent, I still wonder about these "safe quantity" restrictions, and I appreciate the food consumption estimates section that starts on page 35.
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#758621 What's The Best And Worst About Being Super-Sensitive?

Posted by on 21 December 2011 - 08:53 AM

The best thing is eating healthier and actually feeling better.

The WORST thing is being openly MOCKED by those less sensitive.

I could not have said it better myself. It really is so nice to know that others can relate to our experiences with living gluten free.
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#758616 What's The Best And Worst About Being Super-Sensitive?

Posted by on 21 December 2011 - 08:50 AM

She can always talk to me herself in a PM and I will be happy to discuss it with her..

I don't know about others, but I do not have the ability to PM anyone about their comments that concern me . . . Or even if I just want to share something more personal or trivial,. Like even a "thanks". I can either post it openly on the board or remain silent. I find myself often choosing silence, as it often seems the safer of my given options.
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#758610 Super Sensitive Teen

Posted by on 21 December 2011 - 08:34 AM

As a mother of super sensitive children, having integrated two of them into the school system, I feel it is very important to review hand washing procedures with your child. We have Individual Health Care Plans for each of them to review with all necessary parties that handwashing RIGHT before eating is critical to their health and well being. Our health care plans also identify the other necessary accommodations that we have found necessary to keep our children safe in school. And it is shocking to see how hand washing before and after eating are discouraged in our schools.

I would be very careful in assuming that your child is "cheating", as you will need to develop a solid partnership that is proactive with excellent sleuthing skills. I know all to well how critical it becomes when you are just trying to keep your kid from another hospitalization. There are so many, many places for gluten to enter the equation, and the ultimate decisions will be your son's for how he wants to navigate the hazards. We have been extremely grateful for the wonderful and insightful experiences and advice shared by the extreme super sensitives. While we may not apply the most extreme measures, we have found the experience base from those that have to go the extra mile to broaden our abilities to more safely navigate our gluten filled world. We also made tremendous strides by adopting home testing of our "gluten free" foods. We have found it necessary to fully support our children in adopting a whole foods diet.

We have found that working with our doctors as we navigate our issues has been critical. We have continued to watch and monitor for other complicating conditions, but we have yet to turn up a "something else" to explain or reduce our gluten hypersensitivity. . . However, we continue to discuss and monitor any concerns that arise, as even our doctors are perplexed at the complexity of our exquisite gluten sensitivity.

Good luck! Please do let your son know that he is not alone! Have you found any local support groups? My kids love meeting other gluten free kids!!
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