I often receive impassioned pleas for help and people telling me their stories. This one came in this morning, for example:
I am a mom to three children, one of which was diagnosed at 12 months old with Cyclical Vomiting Syndrome (CVS) after weeks of hospitlization for distended belly, malnourishment (imagine starving ethiopian children…this is what she looked like). She has vomited and had diahrea nearly every day of her life since she was 6 months old…she is now 2.5 years old. My husband and I are at our wits end…we recently decided to put her on the Simple Carb Diet, cutting out all grains, sugar and dairy and eating only organic meats, veggies and berries. I have not tried this sooner as they tested for Celiac and results came back negative. However…desperate times calls for desperate measures. On Day 5 of the diet (which our entire family joined her on), her symptoms lessened…Day 6 her symptoms were gone. She has been “symptom free” for 9 days now. Her bowels which have always been liquidy are now firm (still softer than we’d like, but definitely not diahrea).
Note, this could be any number of problems, especially the dairy with it starting at 6 months old. But I bet my bottom dollar that gluten is involved somewhere since we know dairy problems are often secondary to gluten damage and there are clear signs of malabsorption in this case. Could this all have happened because the original coeliac test was negative, which is what causes continued suffering for many of us?
Obviously, I have advised the gene test asap to check. The mum is due to see a geneticist but my dollar betting kicks in again here and I bet that DQ2 and DQ8 ONLY are looked for, which would miss out the NCGS genes. At least, with this site, she now knows what to look for properly, thank goodness. I am so glad the daughter is improving.
I have had several requests already to do a child’s version of the Barrier Plan. I have one almost there and this will be put in Members’ Resources when it’s ready so you will at least have somewhere to start for your little ones.