My Kids Have Celiac, Now what?!

So it's official, all the tests for Babies A and B have come back and they both have Celiac Disease. 

We are still new to our gluten free journey so we are sharing our findings with you in our new Adventures in Gluten Free Series . We have started to make many of the accommodations per the Doctors request, like a separate toaster to prevent cross contamination of foods since Hubby and Sissy are still NOT gluten free. 

this toaster was only $16 at WalMart- so changes do NOT need to be expensive!

So here's some menu item updates that you may want to add to your repertoire: 

* We are obsessed with Pamela's Baking and Pancake Mix 

blueberry pancakes. recipe on back of bag of Pamela's Mix. I just add whatever fresh berries I have on hand!

We have used it to make pancakes, muffins, scones, coffee cake and biscuits. All have been DELICIOUS. 


* We have connected with different companies via Facebook, Twitter, Instagram and Pinterest; and we scored THIS gem Sunday from Udi's Gluten Free Foods.  

 

picture from HERE

 I made our meatballs out of ground beef, salt and pepper, chopped spinach, 1 egg, shredded Parmesan, a few tablespoons of soy flour to make them easier to form.

I have NEVER claimed to be a food photographer ;)

*  Another night we tried THIS recipe I found on Pinterest, but the zucchini at our grocer that day did not look that great, so we substituted summer squash. Still came out good and all the kids ate it! <3 

And if you're wondering why I always have tinfoil under my food lol, it's because it was another method the Dr recc for avoiding cross contamination with NON GF items ;) 

And we have always enjoyed fruits and veggies regularly, so being GF has clearly not changed the girls snacking habits much : 

blackberries right out of the carton. Yep, that's about right ;)

yep, the blackberries that day were a hit! <3

Enjoy!

What is your favorite ALLERGY FRIENDLY website or FB page?

Adventures in Gluten Free series: Part One

Since our journey into the world of Celiac disease and eating gluten free, we have had to make some (albeit not too significant changes) to our diet. I would say our diet itself has not changed dramatically, but paying attention to cross contamination is what we find most challenging thus far. I'm assuming (and also hoping) this gets easier with time and more knowledge! 

from www.piecesofamom.com

So, here are our faves so far in the categories of products and recipes. As we continue with this series, I will post more pictures (although admittedly I am NOT a food photographer ;)) and more complete recipes HERE for easy access. 

My hope with this series is that others with allergies or Celiac disease will benefit from the products and recipes here to feed their families gluten free, and on a budget <3 

Top 5 Necessity Products for our family of 6: 

1. fruit of all kinds, we are trying to stick more now than ever, with what is in season as to add some variety to our menu!
2. veggies. frozen are cheaper and contain the same, sometimes even better, nutrients. The only fresh we stick to are arugula for salads and baby carrots- a kiddo fave <3 and then whatever I might need for a particular recipe, of course!
3. meat. we buy organic when we can- cage free, grass-fed all that stuff. but sometimes, it's just not economical and Gluten Free can be expensive. So we are not below taking advantage of the managers' special!
4. Pamela's Products Baking and Pancake mix: we make everything with this! Pancakes, scones, coffee cake, biscuits- you name it! and it all has been DELISH <3
5.  Annie's microwavable Mac n Cheese (yes, we have 3 under 5, this is a necessity ;))

Top 5 DELISH treats or premade wonders we have discovered thus far: 

1. Larabar, preferably the choc chip cookie dough which is a house FAVE
2. cooksimple dinners made easy!
3. Visalus shakes adult and kid friendly, FULL of protein and nutrients, DELISH, easy and GF!
4. Trader Joe's Gone Bananas- dark chocolate covered banana slices FROZEN
5. Cabot Greek Vanilla Bean yogurt

Top 5 recipes I have made so far that the WHOLE family has liked! 

1. Garlic & Feta Baked Shrimp  OMG YUM is all I can say! 
2. Polenta Lasagna : I modified this recipe a bit though, and used ready made polenta and just made a "standard lasagna" replacing the noodles for "disks" of polenta. I used marinara sauce, ricotta cheese, mozzarella cheese, and arugula within my layers and it was delish! a bit watery, and I'm not sure why still, but next time I'll try less sauce. (we served this at a dinner party with other non-GF ers and everyone loved it!) 
3. Lemon & Thyme mushrooms, I served ours over polenta and cooked spinach
4. Caprese quiche: I just made a crust less quiche with 8 eggs, a splash of milk, goat cheese, basil, and 1 tomato. YUMMO breakfast/brunch idea and everyone had seconds for dinner with my stand-by sausage in the crock pot (pkg of mild Italian sausage in marinara sauce. place in crock pot on low for 6- 8 hrs)  mmmmmm....
5. Parmesan Baked Tomatoes  make an incredible side dish or quick lunch!  


 Now, share your FAVORITE recipes, sites, blogs, PINS, anything GF here! Then go and get cooking!! :) 

What makes you interested in GF cooking/foods? Are you gluten intolerant, trying to lose weight, have Celiac Disease???? Other reasons???? 

and What would you like to get out of our Adventures in Gluten Free Series?

We went from "Failure" to THRIVING! Find out HOW!

Many of you have been following the struggles of our youngest daughter, Baby B, and her "designation" as failure to thrive.

Baby B, tonight at dinner <3

She will be 10 months on April 1st. She has seen her pediatrician for weekly to bi weekly weight checks since she was 4 months old. Up until the middle of February, she was a mere 10 and 1/2 pounds. Yes, that's 10 and 1/2 lbs at 9 months old. 

She has seen an immunologist, a gastroenterologist, and a nutritionist. She has always been what I would describe as a "good eater", but still failed to gain weight. In fact, she regularly lost weight. She has had extensive bloodwork done, and was tested for both cystic fibrosis and celiac disease  

Between her last two visits with the Gastroenterologist, she went from almost 12 pounds, back down below 11lbs. As I described in my previous post about her condition
her ped was at the point of placing a naso gastric tube  when I decided to just try the gluten free diet. 

Reasons NOT to try gluten free for a possible Celiac infants: 

* if there is a pending endoscopy, the results could show a false negative without gluten actually in the system 

*  there are only a few formulas that actually contain gluten, most do not. Also, there is little evidence that gluten is transferred from breastmilk. so depending on the age of the infant, there is little likelihood they are consuming much gluten anyway. 

* many pre made GF foods are highly processed, so can be even less safe for infants if you don't have the time or energy to cook and bake from scratch. 

baby B, earlier in the week, enjoying a GF cooksimple meal

For us, the switch to gluten free was a huge success. In just under 5 weeks, baby B gained 4 pounds and was over 14 lbs!! <3 

She is now maintaining between 14 and 15 pounds. Also what I fail to believe is a coincidence; her hair is finally growing in and she suddenly has 2 teeth! In other words, she is now thriving!

I am going to be starting an Adventures in Gluten Free series to share recipes, tips, and products that have worked for us in the event that are other mamas or papas out there going through the same thing, or just attempting to switch their kiddos over to a GF diet.   

TRUE Celiac Disease diagnosis: 

* because she suffers from an immune disorder , the blood test for Celiac is inconclusive

* the only way to get a true diagnosis, is with an endoscopy. Her GI recommends we re visit this option at or around 24 months, but as stated above, we will need to reintroduce gluten for this to be accurate. 

* there is also a genetic test, which while it does not "test" for Celiac Disease; it can be a rule out. Negative results would mean it is NOT possible for that person to suffer from Celiac disease. Versus a positive result which would mean that we would have to do the endoscopy as recommended by the GI. 
We had this genetic test done last week, and are still awaiting results. Should Baby B's results come back negative, our Dr is recommending we continue on the gluten free since there has been such a good response. Just because she may not be a true Celiac, does not mean she cannot suffer from gluten intolerance. 

Celiac Disease vs Gluten Intolerance  (from www.celiac.com)

 Celiac disease is, by definition, a condition in which the intestinal wall is damaged as a result of eating gluten. It is a chronic illness in which the symptoms wax and wane for reasons that are not yet understood.

 On the other hand, gluten sensitivity is characterized by antigliadin antibodies. This condition afflicts at least 12% of the general population and is found in patients with a wide variety of autoimmune diseases...These patients are mounting an immune response to the most common food in the western diet, yet many practitioners consider gluten sensitivity to be a non-specific finding, frequently counseling patients to ignore these test results.

 

Mommy, What is Celiac Disease? Childrens' book

 * Untreated celiac disease carries an added risk for a wide variety of additional autoimmune diseases. The most likely cause of this predisposition to additional autoimmune disease is a condition sometimes referred to as leaky gut syndrome. We know that gluten causes intestinal damage. We also know that this damage allows large undigested and partly digested proteins to leak into the bloodstream through the damaged intestinal wall. This leakage results in immune system production of antibodies to attack these foreign proteins as if they were invading microbes... we are producing antibodies that attack both the foreign food proteins that are leaked into our blood through the damaged intestinal wall, and similar amino acid sequences in our own tissues, often resulting in further autoimmune disease (s). 

 - also from www.celiac.com

Questions about if your child has Celiac disease? Check out www.celiac.com and call your pediatrician today! 

Stay TUNED for our Adventures in Gluten Free recipe and product series! 

In the meantime, stay on top of our menu by following Babies A and B on Pinterest 

and NNM on Facebook 

 

Updates to the NurtureMe store!

We'll also be adding more Gluten Free options as we find our favorites so you can have TRUE one stop shopping for all your baby/kid/mom and family needs! <3 

You can CHECK OUT our new FEATURED in the blog section HERE

This NEW section includes items for; 

* celiac disease

* gluten free

* Orange Rhino Challenge 

(dress all your kids in ORANGE as a reminder, and have everyone carry around little rhinos ;))

Enjoy! 

 

Failure to Thrive does not mean YOU are a Failure.

 Failure to Thrive does not mean YOU are a Failure: 

And no, I am not just saying that to make myself feel better. Here's WHY:

Failure to thrive. 

To many, one of the worst "diagnoses" a mother can hear. To a mother, that immediately translates into "you are doing something wrong", or "you're not doing enough", or "there is something wrong with your baby"... 

Regardless, it's hard to swallow. As with anything, there are varying degrees. Some Failure to Thrive (FTT) babies are easy to spot; pale, lethargic, dry skin, sunken features. Others, look like my girls. 

Baby B

Baby A

 For those of you that don't regularly follow the blog, I do not have twins. Baby A and Baby B are 2 years apart- their nicknames for purposes of the blog merely coinside with their first initial. Baby A was born in 2010 and Baby B in 2012. Both weighed approximately 7 lbs at birth, and were full term babies. Baby A was delivered by scheduled C section and Baby B was a VBA2C.

Both healthy babies, and have had (knock on wood) no major illnesses to report. But both are small. Baby A, now almost 3 years old, has remained in the 2nd percentile. I many times, have found their obsession with her weight annoying, to say the least. After all, I figured, these "percentiles" are based on fat, formula- fed babies anyways! EBF babies are supposed to be smaller. AND add to that, that Sissy (my 16 year old stepdaughter and their half-sister) is a size 00. I mean, a TRUE 00! And this is a girl who eats well, regularly, and is an avid athlete. So I figure, my husband just makes small babies! 

SO I shrug them off until Baby B comes along. They gave me until she was about 4 months, when they referred me to another Doctor in the office. 

"But she's exclusively breastfed" I told them. "Her sister has always been small and she is FINE"...

Baby A at about 4 months- the original face of NurturingtheNaturalMama

Baby A 2011

Baby A 2012

 She's a happy, healthy girl after all! (And beautiful, I might add! ;)) But Baby B had alternating visits of gaining weight, staying the same, and then losing weight. That is where the weight obsession came in. 

Adding formula, adding cereal (bleh!), and tracking everything! All my kids have been tandem nursers and formula drinkers, but I was really hoping that Baby B, baby #3, would be EBF for as long as possible- so this was a bit of an ego blow... 

But, of course, the baby's health was first. They ran a battery of tests at about 6 months of age, when she continued to lose weight, despite her being my best nurser and regular bottle feedings.

She looks like a "normal" baby, right? No sunken features, you can't distinguish her ribs, she has met all of her motor skill and cognitive milestones, her skin isn't peeling, and she is not anemic or excessively pale- so how is she not gaining weight? In fact, how is she LOSING weight? 

Baby B January 2013 

 At almost 9 months old, Baby B weighed just 10 and 1/2 pounds. 

She has seen an immunologist, and a gastroenterologist. After our recent appointment with her pediatrician, they are contemplating placing a nasogastric feeding tube this week. She still "looks" wonderful, but has lost more weight despite adding even MORE calories! 

Having been in the field of veterinary medicine for almost 12 years, I have seen many an NG tube placed in cats. The thought that I would ever need one for one of my children never crossed my mind. NG tubes involve using a syringe or pump to "pump" food or formula directly into the stomach. They do not "hurt" (although I am sure they're not comfortable either), and this allows caloric intake for those who will not or cannot eat, or aren't eating enough. 

In felines, a slurry of wet cat food, usually Rx diet a/d is used. For baby B, it will likely be formula or breastmilk. She self weaned several weeks ago, but if the tube is placed, I will opt to pump again to build my supply and start using breastmilk as soon as possible. Breastmilk has some critical healing properties, so that would be my optimum choice. 

In the meantime, we have been asked to take precautions because of her immune disorder, so we are to wear masks or gloves if we are sick; we have to start using hand sanitizer before handling her, and she is not to have any contact with any other kids until she sees the gastroenterologist again in an attempt to spare her a chest infection. Any company to our house will be asked to dawn the mask and gloves as well. 

We are going to be one fashionable family!! ;)  

So WHY am I telling you all this?? Part of it is because it is easier for me to process things when I write them out. I figure this blog will be, in some way, a documentation of my kids' childhood and show them what was important to us at the time. Additionally, I figure if I am going through this, there must be SOMEONE else going through the same thing. I hope that they will read this and at the very least think; "WOW, I am NOT alone!"

I obviously don't have any answers for you, or any nuggets of wisdom since I am in the midst of this myself... but I will keep blogging as we get more answers (assuming we get some). And in the interim, we will continue to enjoy every moment with Baby B, as we do with all of our kids. Her condition is certainly not life threatening, at least at this point, so we are so very thankful for that. We look to each other and to God for strength and faith during these trying times; as some days seem so emotionally and physically exhausting.

We have an appointment with a naturopath this week as well, so we will see if that brings any new information for us and Baby B. Thankfully, we love and trust our pediatrician (it took us 5 peds to find them back when Spiderman was born;)) so we know we are in good hands.

If you have a Failure to Thrive baby, you can find more information HERE

*You can find more information on Selective IGA Deficiency HERE 

* and more information on Celiac Disease in Infants and Children HERE