You Can Have Borderline Coeliac Disease
I actually hear this one alot, and most people have been told this by their GP! **slaps head in utter frustration** but here I will try to explain why this phrase is completely incorrect!
We never take exception when a person advises us that they or a loved one has "borderline" celiac disease. Oh sure it's a myth and one can no more have borderline celiac disease than one can be borderline pregnant!, but the person with this misperception got it from ssomewhere and and that somewhere is typically a well-meaning but misinformed friend, relative or - more commonly in years gone by - doctor. Like pregnancy, when it comes to celiac disease, you either have it or you don't. And speaking of the myth of borderline celiac disease, it is also a myth that you can "outgrow" it.
If ever you have been told you had borderline celiac disease, most likely this happened because you had some other condition (a bowel infection, for example) or were too-quickly labeled as having celiac disease without benefit of a small intestine biopsy: then, when you got better, you were told that you got better because you only have borderline celiac disease.
Another possibility is that you do in fact have the real deal: that is you were told you had borderline celiac disease,but you actully do have celiac disease. This is most likely to occur if the type of celiac disease you have is either silent or latent, form of the disease. These types of celiac disease are unassociated with symptoms.
Because celiac disease is so important a condition with so many health implications, if you've been diagnosed with "borderline celiac disease" we encourage you to speak to your physician to find out on what basis this determination was made. If you have a small intestine biopsy, ask your physician what it showed. If you didn't have a biopsy, ask what, if any, antibody studies were done.
If you were told long ago that you had borderline celiac disease, it may (or may not) be worth your while to be retested for celiac disease beginning with having appropriate antibody or genetic testing done. (Often a genetic test is a particularly good way to start since, if you don't have certain genes, you almost certainly cannot have had, or ever get, celiac disease) Be sure to speak to your current Doctor about this.
Reproduced from Celiac Disease for Dummies
We have a relative who was told as a child that she would need to be gluten free for a while until she "grew out of it". No biopsy or testing done back then, just symptoms. She's now almost 60 and refuses to have a test despite numerous further symptoms and a coeliac grandchild because she was told back then by the doctor that she would grow out of it. Sigh.
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