weluvgators

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.

What you describe reminds me of how hives can present for some. People can also have wheat allergy (or other allergens). One can also have celiac and wheat allergy. According to our experiences and the dermatoligists and doctors that we have consulted, celiac and gluten intolerance can present in a wide variety of skin ailments.

Our middle child (of 3) was our family's canary. We have been gluten free for almost 7 years now, and it has been a long road for our family. We had a very difficult time understanding the severity of our gluten issues and have found the best guidance to come from those that are "Super Sensitive". We quickly realised that the severity of our middle child's condition required a gluten free home. We also have had to implement very strict protocols for care, school and those that enter our home after eating gluten.

We have worked with doctors that have tried to reduce our super sensitivity, but the most effective protocols for our family remain strict eliminations of gluten. I am happy to share more details of our story if you want.

You haven't mentioned the status of your home related to gluten, and I wonder if he continues to be contaminated from his environment. There is a rather recent posting related to gluten contamination and refractory celiac which may be interesting to you. I hope that you are able to figure out more information to help your son recover his health. We have had several complications related to our celiac and severe gluten hypersensitivity and have had to endure severe complications due to our lack of understanding of the effects of chronic gluten exposure that is outside the "normal" tolerance levels for a "standard" celiac. I wish you well in the journey and share that our family has had to deal with a lot of testing, investigation and interrogation for understanding the extent of our complications. I hope that you find relief and resolution quickly. I understand how exhausting and scary the rounds of investigation for complications can be. Big hugs from another celiac mama!

Our kids have medical alert bracelets and allergy action plans signed by their doctor. All care providers are informed of the information, and we have always stated their celiac/allergies on enrollment forms.

I hope your daughter feels better soon. We also reinforce required hand washing protocols and check any supplies (crafts, games, activities) being used. We have had our fair share of problems with others not appreciating the severity of our issues, so please don't let it get you down. This is a long, sometimes very difficult, journey. We know...but we have heaps more good experiences now than bad ones! Yet we still find ourselves troubleshooting and tweaking protocols. Best wishes for a speedy recovery and future successes to come!

I have to be very careful with airborne exposures, as our family has wheat allergy in addition to celiac. We use Zyrtec for relief of bad exposures after trying for a long time to avoid, avoid, avoid....but sometimes it cannot be entirely avoided. My kids tell me it helps with their tummy distress, but it can be hard to make sense of kids reports....or maybe just hard to take at face value. If my office space gets bad, I just leave. I have also worked to keep my desk as far from the kitchen as possible, and that issue is discussed with my employer. Sometimes it is enough for me to go work in a conference room for a bit while the air dissipates. Hope that helps. Good luck figuring out what works for you. If I were in the States I would have a HEPA filter at my desk, but HEPA filters are so much harder to find here in Australia (Western Australia anyway).