Indeed it is the tip of the iceberg. And I believe the numbers to be closer to 1 in 100 as I've often seen quoted.Polly wrote:I believe the prevalence of celiac disease is about 1 in 250-300 individuals, and that is just the tip of the iceberg. Most of us here have a "milder" or perhaps earlier form of celiac disease that is just called gluten sensitivity. This milder form will NOT be picked up on the classic celiac BLOOD test, and thus docs often miss it. Miss it? Heck, they don't even know about it! The only way to find it is through STOOL tests like Dr. Fine's. So, it is not your lab that is in error - I'm sure your celiac blood test was done properly - as was mine. We just don't have enough damage to our small intestine at this point for the gluten antibodies to seep from the stool into the bloodstream. BTW, "mild" is not a good word - gluten sensitivity can be just as debilitating as full-blown celiac disease. Dr. Fine wrote an excellent 4-piece article that explains this "spectrum" of celiac disease. You can find it on his website and I think it's also here in out research or links forum.
What exactly is normal anymore? I'm starting to think that things we consider to be normal may not be so normal. Let's say for example that CD is 1 in 100, and lets say that there is a larger percentage of folks with gluten sensitivity. Who's to say that this large sampling hasn't skewed what we consider to be normal?Holy Crap! LOL! You are too funny! Sounds like one of those "AHA" moments. If I were you, I'd want to get testing. Of course, it certainly could be constitutional, because kids with full-blown CD usually follow the normal growth curve for the first 9 mos. of life and then begin dopping off. It sounds like he has always been small. Since preemies catch up to normal weight by age 2, we can't blame the short stature on that. BUT, in view of your history, we all know here that gluten sensivity is a possibility.
I believe that the percentage found is larger than most folks and even doctors think. In fact I believe that it's now greater than 50% that folks are showing symptoms that are not the classical forms of CD. They show in other ways that I'm betting most Drs dismiss and treat with some form of symptom management. Gluten causing migranes??? Well let's give em pain killers for example. :(I forget the percentage of those with actual CD who do not have diarrhea as a symptom, but I remember thinking it was significant. So I'm sure that there may be even more folks with "our" form of gluten sensitivity (that you called "gluten lite" at one point) who are not having diarrhea.I know it has been said here that we are actually lucky to have diarrhea along with our disease because it forced us into getting a diagnosis more quickly. How many docs would look for gluten sensitivity just based on the other common symptoms of fatigue, muscle and joint aches/pains, mental fog or confusion?
Agreed, in fact I bet once most folks clear up what ails them even when it's not gluten that their growth rate will be pretty fast.Even if he tests positive for gluten, you don't need to beat yourself up. Catch up growth will occur, and his major growth will occur at adolesence. So all is not lost by a long shot.
Mike
