Over the last couple months, we have been very busy, and I have not had time to compose a family update. Last week alone I had 10 doctors/therapists appointments in 5 different cities which resulted in 10 hours spent in the car…we aren’t even going to talk about how many dollars that resulted in because I know that at least 7 of those were not covered by insurance at all. When we left off last, the kids and I had been diagnosed with Celiac and had discovered that we were reacting to A LOT of foods. We have since done more testing, and David and I will be spending the Christmas holidays accessing our situation so that we can start the New Year with our “game face” on. (I am also going to sprinkle in some family pictures taken at church.)
So far we have tested over 143 foods and have concluded that it is simpler to list the foods that we are NOT reacting to than to list the foods we react to. These are the ONLY foods we can eat right now, and as you might notice there are very few foods that we can all eat.
I initially knew of only 2 people who’d had similar reactions and was told by both of them that it is a reaction due to the autoimmune disorder, Celiac, which was corroborated by our allergist (who is apparently so amazing that sometimes people choose to see him over the Mayo Clinic). The problem now of course was what to do about the problem. Going gluten free wasn’t going to solve this issue. It would definitely help (and is necessary for the rest of our lives if we want to live), but it would not fix all of the damage cause by eating gluten when we were severely allergic to it. The 2 people I initially knew who’d gone through similar reactions recommended removing all foods that cause a reaction and rotating those foods over 4 days. Unfortunately, we were never really able to get enough foods to rotate over 4 days for Jessica. However, over the past week, I have met several other people who have gone through this more recently as well as a Naturopath and Holistic Nutritionist who all believe avoiding foods we are reacting to is more important than rotating the foods.
Another issue we have come up against is that we have to be VERY careful about cross-contamination of gluten and nuts. With gluten cross-contamination, we have to be careful to only use glass, ceramic, and stainless steal kitchen items unless we can guarantee that they were never used with gluten in the past (and won’t be in the future). We do not react strongly enough to nuts that I am worried about the nuts touching equipment that was used for other nuts, but I do worry about some of the nuts we react to getting mixed in with our safe nuts. Therefore, David and I have been shelling most of our own nuts with an Arbor Press. When I can, I try to find products that are good about cross-contamination with respect to both gluten and nuts. Just because it says it is gluten free does NOT mean that it is safe enough for us! The only people who truly know what is safe are other people at places like http://www.celiac.com that also have Celiac. Obviously, going out to eat and other social gatherings with food is really almost not an option right now. *Note: Within the last couple days, we have been able to go out for dinner occasionally after getting the rest of our test results back! Thank goodness for amazing waiters and kitchen staff at Outback Steakhouse, Logan’s Roadhouse, Ruby Tuesdays, and O’Charleys!!!!!
In addition to the dietary changes, the Naturopath and the Holistic Nutritionist have started us on some supplements and homeopathic rememdies, and we are seeing some real progress!!!!!! We are still in the early stages of our “plan,” but I have been very pleased with the results we have seen from just adding the right digestive enzymes!! Right now everyone gets: a Multivitamin, 5000 IUDs Vitamin D, 30 billion Probiotics (Jess gets 60 billion because it takes that much to control her digestive yeast issue…long story you DON’T want to hear!), Digestive Enzymes, and a homeopathic (the enzymes are the only new part and the homeopath we will start once we adjust to everything else). I am also getting Vitamin E and Choline. Jess is also getting another homeopathic, and John is getting stomach acid. Each of us has different symptoms and so we each need different supplements, and yes, I am having to be highly organized about ALL of this!!! Best thing I ever did was keep an expandable file folder on all of the kids doctors/therapists!
On the therapy front, John is currently in Speech Therapy, Occupational Therapy, and Physical Therapy and making good progress! We are still in the process of going through his Autism evaluation (it can take a year or more sometimes to get a diagnosis). This past week he was also fitted for some AFOs (plastic boots you wear inside your shoes). He will have a “wearing schedule” where he will wear them for increasing periods of time to help the muscles in his feet strengthen. At his most recent Physical Therapy evaluation it was noted that his arches are collapsing because the muscles in his feet aren’t strong enough which in turn has affected his posture so that his chest and rear end stick out. At some point soon, Jess needs to be re-evaluated for Speech because at 5 years old they start testing for pragmatic skills (On the bright side, thanks to her Autism diagnosis her speech therapy would be covered!!). If she is behind anywhere, then it would be there. Her fine motor and gross motor skills seem to be holding steady, so we probably don’t need a re-eval there, but it would be nice to get her involved in a team sport situation at some point down the road to give her an opportunity to practice some of those motor skills and learn to work within a team structure….but that’s going on the “wish list”…..we’ve got other fish to fry right now….literally!!!!
We are incredibly grateful for the recent advances in medical science that have made this possible, for our great team of professionals that are committed to our children, for all of our friends that go to great lengths to accommodate/love on our children, and especially for family. Mom and Dad have been especially supportive through this entire thing both emotionally and financially. Emotionally, this year has been filled with many many ups and downs, and Mom especially has worked tirelessly at helping me come up with creative solutions to the obstacles we encounter and does the majority of my Autism/Dietary reading. Both Mom and Dad have been there to listen when I was so frustrated I couldn’t see straight or so overwhelmed that I couldn’t figure out what to do next. Financially, this year has been filled with mostly just downs. We completely drained our savings this year paying for medical services/groceries, and Mom and Dad are the ones who made the last half of our special allergy testing possible. They also finished paying off my student loan and gave us their car because they knew there was no way we would be able to afford to buy a car any time in the near future.
David and I have always been fiercely independent (not sure if that is a first born thing or not), and it has been quiet humbling to find ourselves in a position to need to accept help. This would be an example of what our minister said about God blessing families to the 3rd and 4th generation for being covenant keepers. Mom and Dad have been able to bless us because they have kept their covenants to God, to each other, to our family, and the world at large. I am thankful for the covenant keepers in my family….my parents….my grandparents….my great-grandparents… It is because of them that even when life gets tough, we aren’t going to be allowed to fail.
We feel so fortunate to be enjoying some extended time away with our families this holiday season. The time away with those we love the most has been such a blessing and has served to rejuvenate us so we can start 2013 with our “game face” on! Although the last year (ok…maybe couple of years) has been a little tough, we really are so blessed by all of the family and friends that have been Jesus to us this year. We are also blessed to have each other.
Congratulations! You have made it to the very end of this very long winded post. Feel free to “plant a flag” in the comments section letting everyone know that you made it to the end!