First, some history... My baby has been slow growing since birth. He was a good healthy weight at birth (8 lbs 6 oz) but by 3 months, he was in the 0% percentile for weight and height. This trend has continued. He gains weight, but at a slow rate and shallow curve and is still 0%. He's an even 20 pounds as of yesterday, and 16 months old. He also has some smelly BM's but nothing like what the doc described that we should see in CF. Not oily, just really soft with lots of undigested food and pretty smelly. We have a looonnng family history of Celiac Disease. My three older kids (6, 5, and 3) have all been diagnosed as well as my husband and many other family members (brother, sister, neices, nephews and hubby's Dad) all on my husband's side. His Grandmother died from intestinal cancer from lifelong untreated Celiac as a matter of fact. We are learning that Celiac can be rampant and active internally with no outward symptoms so that realization has lead us to regularly test our kids after our first child was diagnosed. Annual testing lead to 12 additional diagnoses in the family even when symptoms were not present or not typical (as far as docs are concerned). Long story short, because Caleb has been slow growing since birth and taking our family history into consideration, docs continued to look for Celiac to show up at any moment. He is still negative but that could change at any moment so we'll continue to test annually. But he eats VERY little gluten anyway with our home being gluten-free so given the fact that the growth issues have been since birth I was pretty sure it couldn't be Celiac Disease. It is possible to get gluten through breast milk though so it's a possibility that it's gluten related but didn't seem likely to me since my three other kids grew just fine until table food was introduced. Longer story shorter... sigh... Caleb has been tested for everything under the sun. He seems to have a hard time with milk which could be a side effect of damage from gluten or an allergy or many other possibilities. BUT his allergy testing was all clear, a 2nd Celiac and thyroid tests were all clear so... yesterday he had the sweat test. Today, they called and said that the results were negative at 15 with anything above 40 being positive. So... my question is this: Is this INDEED a clear cut negative or have any of you pros run into a someone who had a number around 15 and ended up having CF after subsequent testing? From what I've read, the lower the number, the better and lots of online discussions I've read list much lower numbers when the results were negative. (Like at a 4!) Should I ask for further testing or just relax about it, keep an eye on him for any other problems, test him annually for Celiac and call it good like the doc says? I'm a worrier and I need to feel 100% GOOD about this number before I take the possibility of CF off of my radar. Any thoughts, experiences and opinions are welcome! Thank in advance!
Melanie
Melanie