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Thursday, March 28, 2013

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

 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

Questions about if your child has Celiac disease? Check out 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 


1 comment:

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