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 FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease SymptomsWhat testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease ScreeningInterpretation of Celiac Disease Blood Test ResultsCan 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-FreeIs celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic TestingIs there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and DisordersIs 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 BeveragesDistilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free?Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free DietFree recipes: Gluten-Free RecipesWhere can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.For Additional Information: Subscribe to: Journal of Gluten Sensitivity
We find a cutting board important too. We also travel with a small kid type plate (non-breakable) for each of us and find a fork for each of us is helpful. We travelled a lot this summer and really missed having non-disposable forks! I also travel with cleaning stuff, including a couple of dish towels and dish cloths.
I just wanted to say that I appreciate your posts and sharing your experiences. Thank you! We have found rheumatology to be one of the more helpful disciplines when sorting through some of our more complex issues. And the rheumatologists for us were not all bad news, but they have seemed better able to understand and help us cope with some of our symptoms. I hope you are able to find doctors to help you.
Sorry if I missed this, but has anyone checked your vitamin B12 status (this one can be a bit tricky, as it was for us)? Do you have a primary doctor managing your celiac diagnosis and recovery? It would be good to have a standard panel to check for any nutritional deficiencies that could be supplemented to help you recover more quickly. I understand what a long, hard, and painfully slow, bumpy road a celiac diagnosis can be! I hope you are feeling better and a bit less defeated soon. I hope your latest doctor appointment had some positives come of it.
Some considerations that come up in a school district with free range eating practices include:
3rd grade - snack time encouraged at a specific time. My son makes sure to wash hands before snack begins. And then they sit in a circle and play a card game while eating. Never mind the allergy; this is poor public eating practices all around. A lot of times good food allergy protocols are common hygiene principles related to public eating - who would have thought there would be such resistance to good hygiene in public eating. What are we teaching our children?
7th grade - free range snack time so far has been limited to free range gluten free in the classroom. They want to reintroduce all foods back into the classrooms. They want the anaphylactic wheat child to clean up her desk in every class before class commences because it would be entirely plausible that a wheat eating child was sitting there before her. Never mind that you are asking a wheat allergic child to clean up wheat left by others. But is it that far fetched for people to consider that they should clean up after themselves? Or is that "infringing on others rights"?
We are simply dealing with a school district that seems to hold similar views as those that are presented in the challenging article. They even made a point of saying that they would never ask us to eat peanut free because there is a peanut allergic child. My only reply to that is we don't want to eat peanuts around a peanut allergic child out of common courtesy. I am somewhat astonished as to how "communities" have become so callous...and exclusive.
And while diabetics do not need to eat 24/7, they do need to be able to access snacks at any time in case they are having issues. So, the logic seems plausible to me. Is their logic really that faulty? I am curious how many diabetics and food allergy people are in this district. It is really huge...it seems that others would have had these issues before us. I do know that this district has a registered nurse in every school, and sometimes I think that their approach to the problem is to challenge students' health problems and be more prepared to respond to the emergencies. While the elementary school nurse assured me that she is well versed with allergic reactions and knows how to respond . . . it certainly makes me wonder if they manage numerous triggers and failures by providing professional health care responses at the school. It sure would be interesting to know the statistics of healthcare issues triggered and managed by the school.
I do miss the healthcare education aspect that was widely promoted in the schools in Australia. The school nurse would stop by the children's classrooms and educate the class on food allergies (they also did this for other medical conditions too). Eventually the discussion would allow students who wanted to share their food allergies with others to do so in an open, safe and educated forum.
We have found that it has gotten much easier to navigate this over time. You meet more people that can relate and share what worked for them. And all of the "new" things to learn after diagnosis become your normal routine. Family can also get better over time and with some practice. Time helps with the physical healing, and it gives you different perspectives when troubleshooting issues.
If we are going to try gluten free processed foods, we prefer to look for those with gluten-free certifications. Which reminds me that I am still looking for a resource of what the different certifications mean. And we do tend to travel with our own gluten-free kitchen basics. It makes travel that much easier. And don't discount that grocery stores are fabulous places to stop and refuel when travelling. We have found a quick trip to the shops will usually get us plenty of food (think meats, nuts, fruits and veggies).
Welcome to the board! We have navigated schools with three children that each have their own issues with gluten. We do have written protocols for the schools to best handle our children through pain and symptoms of gluten exposure should they present. Our plan includes a phone call to us so that we can help evaluate needed actions, but your plan may be able to help them with measures before calling you. I do recommend noting in the plan at what point you are to be called, and we have found that my kids appreciate knowing when that is. It is best to start the 504 process now, assuming you are in a US school.
Some ideas for managing belly pain that have worked well for us include: tummy massage, heat packs, Epsom salt baths, essential oils and comforting. Come up with ideas that work well for helping your child cope and manage the pain. The school should be able to reference different steps to try if your daughter wants to try and manage it at school - you already have good ideas for her of sitting quietly and resting. If heat packs and/or lying down work for her (or if she wants to try them or something else they can do), the school should also be able to accommodate that. Ideally, your doctor(s) will be able to help you develop a plan for your child to be included in school.
I don't recall play-doh getting mention in this discussion. Is standard play-doh being used at daycare? If so, are there processes in place to reduce the chance of your child's exposure? You may also want to scan through the kids section of the forum and search for daycare discussions. Play-doh is a big one, but other art, science or play materials could also come into consideration depending on the activities done.
Hi Amalthea, I just wanted to share that I understand where you are coming from in your posts. I also have wheat allergy and celiac issues, so I understand how difficult it can be for more standard, typical celiacs to relate to the more complicated challenges with a compounding immunological response to wheat and gluten. As well, I am managing a household with three children. While many in this post are critical of your approaches, they resonate well with me. It sounds like you are managing your household well, and it seems to work well for you - congrats for all of your efforts paying off.
There is some interesting information about working on overall gut health to help with symptom management, but the scientists are still trying to understand these approaches. We have worked to increase inulin in our diets to improve the prebiotic content of our diet. We have been able to find other super sensitive individuals who have been very effective in helping us. As well, moving to Australia and enjoying their superb gluten free labelling laws and general gluten free awareness was a refreshing and helpful approach for us. In general, many of the methodologies you share in your posts are relegated to the "super sensitive" approaches that are rarely required for standard celiacs. It may help to look at the super sensitive section if you want to better understand this board's position on the subject. I also spent a really long time chasing all of the "other" things that I kept being encouraged to chase . . . and wasted a lot of time and ill health in the process! Like you, learning to focus on the myriad ways that gluten was infiltrating our lives proved to be liberating!
As for paper plates, we try not to use them, but have never had issue with them. We have not used them in the microwave. I did see some "made from wheat straw" paper plates, but they were very specifically labelled as such. We would not attempt to use paper plates made from any part of wheat. Now, I have no idea if there is a requirement for labelling them as such, as I have been counting on the "sustainable," made from wheat straw paper plates to be obviously labelled as such.
There is great information in this thread. And I am doing the work. Lots of work. To transition healthcare and schools between countries is something I am still learning about. We have been to multiple allergists in different states and different countries, and we have gotten the same care and instruction over many years. And I am still recovering from what I just spent on new epi's for my daughter. I thought I was paying a fortune in Australia. Thankfully, the child with an epi is being well accommodated.
We started medical care the morning after arriving in our new location....thanks child for the initiation of finding appropriate emergency care on the first morning in our new town. Getting new medical care on board and up to speed is quite a bit more complex when coming to the U.S. than it was when we transitioned to Australia. Coordinating school instruction with medical care is also substantially more difficult coming to the U.S.than when we transitioned to Australia.
I have been proactive, and our family is dealing with this. I am not sure what it was I wrote that indicated otherwise.
Hi! I posted in the other thread as well, but thought I would share some additional information. Our daughter has since broken some additional bones, and our Australian rheumatologist was not terribly surprised. We are dealing with joint hypermobility which can also contribute to this phenomena of accident/injury proneness. I assume this is related to the connective tissues disorders that can be associated with the gluten intolerance / celiac spectrum. We had an amazing rheumatologist in Australia that really seemed to pull some things together for us in understanding our child's condition.
Anyway, just wanted to share that our daughter's apparent "bone fragility" seems related to her joint hypermobility (no one in the American healthcare system educated us on this condition, or even told us that this was contributing to her problems!!). There are physical therapies that can help with it. While none of our doctors has wanted to do bone density scans/testing yet, her bone density is a discussion that is still happening. Reading that other thread made me recognize that our daughter struggles to do weight bearing exercise as well - for a myriad of reason, interest and motivation among them . . . but again, she has always been "accident prone" and one tends to err on the side of caution after taking painful spills! I am still unsure if there are neurological issues that are contributing as well . . . as when she was younger it was if her legs simply didn't do what she thought they would do type of stuff. And she still struggles with motor control compared to her peers.
Please let me know if you have any questions about our experiences.
Thank you so much for being here and sharing your experiences everyone! The 504 plan is already being implemented based on their "Allergy Action Plan" from the local pediatrician. That simply means that the kids are authorized to be medicated should a reaction occur. The school demands that the doctor instruct accommodation . . . and the doctor is like, what? In Australia schools implement protocols based on a healthcare Allergy Action Plan and working with the student and parents based on past and implemented experiences (classrooms are generically a no food zone . . . What about the hygiene and the pest control involved in free range eating?! . . . never mind all of the other food allergies that must be managed in a school setting). While we were able to get the kids' "annual" scheduled with the local pediatrician before school start, there simply wasn't sufficient time to thoroughly and completely download the whole family history in those sessions (and two kids saw a resident doctor and one saw a practice doctor just so we could get them all in before start of school) . . . we covered the medical side of things barely, but school accommodation wasn't a known issue since we were not aware of the substantial differences in food protocols in this new to us school system. The school has been informed of the very specific medical/school instructions that worked in Australia (from the school record files). Because of the complexity of our allergy issues, our local pediatrician has asked us to consult with the top specialists here at the childrens hospital . . . which means a long wait . . . and while I have one allergist appointment scheduled, ped recommends a different allergist that has his own personal "scheduler" that has yet to call me back.
And by the bathroom sink being the "safest" place . . . well, the free range eating makes that space to be the least likely contaminated (and free range eating appears to occur by both students and staff). Even the (seemingly very skilled, knowledgeable and experienced) nurse says that her office will be contaminated with gluten.
Thank you so much for your understanding and encouragement. Any insights and experiences to share on transferring care with these complex issues would be appreciated. Obviously, as much medical history and wonderment as we have at our family's complex allergy, celiac, rheumatology history, we are not good at communicating and transferring care back to the US quickly. Live and learn . . . hopefully without any more devastating complications. The US transfer was quick and somewhat unexpected, so while that is logistically challenging in and of itself, adding three children with medical needs has certainly complicated the process and exhausted me. And everyone who has never experienced our family history in person wants to "wait and see" what happens. . .because it seems to be one of those "need to see to believe" type of phenomena...and perhaps everyone is hanging on to that "children outgrow wheat allergy" philosophy as well . . . I don't know. Never mind that the celiac side complicates things.
If it influences anyone or brings to light additional resources that may be available to us, we are working with a "really great" school district in Colorado that claims as its first two "values":
- Placing the needs and welfare of students above all else.
- Providing safe and caring environments for learning.
Meanwhile my children are even more dumbfounded than me at the brazen level of medical challenge that is currently being insisted for them. We don't talk about it too much, as I don't want to influence or unduly worry them. But we all experienced our last American school challenge, and it certainly left some haunting and traumatic scars. Here's to hoping that the air quality and facilities at our new schools are enough to help us meet this challenge with grace!
Our allergists and pediatricians have "assured" us that wheat allergy is "slow acting". As in, we can notice and treat our reactions before they progress rapidly. Even though I have a "proven" wheat allergy - both skin test positive and extensive history, I still only carry antihistamine and inhaler per the advice of the allergist and the general consult of several doctors. My son's last reaction was lip swelling, but again...I have been assured that wheat allergy is generally "slow-acting" and there is no need for an epi. My son hasn't had extensive exposures to wheat because of his past reactions to low level exposure and family history. Our oldest who does carry an epipen for her reactions (again they are "different" from what is considered "typical" for IgE mediated reactions, as in they have never impacted her breathing, but will generally cause flushing, hiving, vomiting in severe exposures, while low grade chronic exposure (airborne loading) results in skin rashes and joint pain).
I have seen these wheat reactions happen in several different instances in our family. The type and strength of exposure greatly influences the body's response and handling of the exposure. Because anaphylaxis to wheat is rare, there is a certain level of complacency in treating it. We just seem to be really pushing our luck, and testing the bounds of science because the level of accommodation that keeps us well is beyond "acceptable" and "common" practices for the American school systems we have encountered.
So education of the school needs to happen, as well as education of the doctor(s). And it seems that our healthcare providers in America really like hands-on experience to learn. This is compounded because wheat allergy is our only identified "allergen" (I have past reaction to barley affecting throat and breathing as well, so we treat as "gluten" allergy). It is also compounded by the complex biological responses that our family has endured to these exposures. Exercise induced asthma is another variant for us of "wheat allergy" . . . another example of "slow-acting" allergy issues. My asthma is considered "allergy induced" (wheat/gluten) and since it runs with "exercise induced" methodology in wheat allergy circles, seems to be considered "slow-acting".
I have a feeling we will again be funding a bit of science and discovery over the coming months. I would love to have some really solid allergy references and materials (especially specific to wheat) to study in managing this. While each of us knows how badly wheat/gluten exposure affects us, "proving" it was *wheat* seems to be an experience that we need to demonstrate over and over and over for American healthcare professionals and school authorities.
When I explained to the school that I am unable to come collect a child that has been grossly exposed to wheat and *not* cleaned up, I was asked if I could just take my antihistamine before collecting my child with a suspected reaction. The level of education that needs to happen just feels overwhelming at the point.
Again, thank you for the engaging discussion. I just can't believe the fundamental differences in healthcare in our experiences. We have spent the last few years in Australia LIVING. Working full time, going to school freely, just being a seemingly "normal" part of our community. So it is quite discouraging to be back to square one . . . dedicating my full attention, time and resources to advocacy again.