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Member Since 24 Feb 2009
Offline Last Active Jul 26 2015 05:45 AM

Posts I've Made

In Topic: Sneezing Fit, Itchy Swollen Throat, Itchy Eyes After Re-Introduction Of Gluten?

26 July 2015 - 05:44 AM

It is possible to have celiac and wheat/gluten allergy. I am allergic to wheat and barley for sure and my reactions are too severe to give rye a trial. I also have celiac complications. The reaction that you described sounds like an allergy and you need to take caution in any future trials. I am surprised that the allergist wait is so long. I would definitely keep antihistamines handy at all times while you get your diagnosis sorted. And I also think an Epipen would be in order given the nature of your reaction.

In Topic: Recovery Time For 15 Month Old

18 May 2015 - 05:37 AM

I cannot comment on the recovery time for your child, but can say that each of my children responded on their own timelines for recovery from gluten exposure.  We did not have chronic growth issues, but in other areas our recovery has been painfully slow at times.  It has taken continual, mindful adherence to strict gluten free protocols.


I believe that making a decision to put a child back on gluten when they respond with painful, systemic symptoms is a decision to make with your healthcare provider - ensure a strategy is in place if the joint decision is to reintroduce gluten.  We have utilized standard celiac testing to monitor compliance with gluten free diet and to help evaluate how much to chase other potential, contributing causes.  We have found genetic testing helpful in our journey, and it has helped guide our healthcare providers as well.  In addition to the celiac testing standards, our pediatric GI specialist also ran some vitamin panels that are commonly deficient in her celiac patients.


I assume you know the importance of remaining gluten free if nursing a gluten free child (but just as important that you remain vigilantly gluten free as a celiac yourself).  I am absolutely fascinated by the nursing and celiac relationship.  I had a very interesting experience nursing my super sensitive child and wish that there would be further study into the nursing dynamic as it relates to celiac antibody production.  I commend you for continuing your nursing relationship.


Another matter to research, consider and discuss with your doctor is the fact that traditional celiac tests like those outlined above are not very accurate for diagnosing the very young.  If I recall correctly, getting correct celiac diagnosis in the population under 2 can be very difficult.  I also believe that this reality should be seriously considered in evaluating the overall strategy for management and diagnosis of gluten issues in children.


Good luck getting it sorted.  Putting together a healthcare team to help you is one of the most important parts of getting things figured out!

In Topic: Anyone Highly Air Sensitive To Wheat Here? Lifestyle/adjustment Questions

27 April 2015 - 07:23 PM

I also wanted to add that I have used Allergic Girl coaching services to help us in our journey.  She offers food allergy counseling, and we have always  utilized her services via phone/video tools.  It is really nice to be able to speak with a counselor that understands the social implications that allergies can create.  She has a book that you can read as well that addresses social issues in managing food allergies (Allergic Girl by Sloane Miller).  You can probably find it in your library even.  She offers many ideas and strategies for living well with food allergies.

In Topic: Anyone Highly Air Sensitive To Wheat Here? Lifestyle/adjustment Questions

27 April 2015 - 07:14 PM

Hi, I just want to lend my support and understanding for airborne wheat issues.  We are a celiac family dealing with wheat/gluten allergy.  It has been a long journey for us, and we moved to Australia in part to enjoy the benefits of fantastic gluten free labeling.  The impact of the superior gluten free labeling here is astonishing.  Other people find it easier to accommodate us because they can easily walk into any store and buy gluten free labeled food with confidence and ease.  It has increased the social support that we receive immensely.


As for the wheat allergy aspect, I also have issues with social settings.  My theory is that it is the aerosolization of the gluten foods that others eat when they talk / breathe.  I find beer to be one of the worst, but it is also when I would tend to speak closely with others in a social setting (you are further from people when sitting at a table versus trying to lean in and hear people better in the midst of a noisy crowd of drinkers).  One of the ones that caught me off-guard one day was steaming of wontons at a food court.  It took me a bit to figure it out!  Unfortunately/fortunately for me, these types of exposures affect me quickly in a more traditional allergy sense in that my respiratory system becomes impaired.  Fortunately for me, allergy action plans have worked well for managing/reducing/minimizing these issues - I use Ventolin and Zyrtec for managing complications from exposures.


We have a lot of examples in our family of airborne impacts from seemingly innocuous exposures for a celiac that have created systemic issues in our health.  We are very cautious now and vigilant about eliminating these types of exposures.  We also try to keep up with a super sensitive celiac that does a lot of scientific research to help in her own healing.  While she doesn't have the airborne issues that our allergy induces, I have found her experiences invaluable in improving our own journey.  She has been increasing inulin in her diet to increase the prebiotic content and help the good intestinal bacteria colonies flourish.  She has been happy with the improvements in her tolerance utilizing this approach.


I know it is a struggle.  If you haven't tried any allergy medications, you can try to see if it helps you cope when it gets bad . . . or when you just want to enjoy yourself in a hazardous situation.  I also try to pick activities that are low risk - some restaurants are naturally lower in gluten than others.  And some friends are more understanding than others (we have certainly had instances where we have requested our whole table to be gluten free).  Have you tried any gluten free support groups in your area?  They might coordinate social activities there that would be gluten free!  One other benefit of living in Australia has been that ciders are quite popular and readily available, and many/most of them here are gluten free.  And I have been out with people where the entire table was drinking gluten free cider (not by my request either)!

In Topic: Potty Accidents... Related To Celiac?

14 April 2015 - 11:05 PM

None of us deal with continence issues now. The longer we have been gluten free, the better we have gotten at managing and eliminating potential exposures. That being said, it was such an issue for super silly girl as we were getting smarter about living gluten free that she was regularly checked for UTI and watched for diabetes. It is good to communicate continence issues with your doctor, as there can be other causes. But for our family, getting better at gluten free living was the answer.

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