, Celiac Sprue

[Guest guest]

Dawn, said that his A was secondary and caused by other things, one being Celiac Sprue. Celiac Sprue (or CD - Celiac Disease) is a disease where the person cannot eat any wheat or gluten products whatsoever. When they do, the gluten breaks down the lining of the small intestine. This is where your nutrition is absorbed into your blood stream. For a Celiac, their body becomes more and more inefficient at absorbing nutrition...and even to the point where it can't at all. There is such a wide range of symptoms, it is often mistaken for other problems, but 1:130 Americans is thought to have CD. it is NOT an allergy, but Celiacs cannot have ANY wheat products because they immediately start to break down the lining of the SI again and that can take 6-12 months to heal.

My daughter had stopped growing, was very small for her age (my other kids are huge! LOL), had chronic ear infections, asthma, eczema, cyclical vomiting, hives and psoriasis on her scalp. Now, she is completely healed (as long as she stays off wheat). We just had a bombshell this week....french fries at Mc's & 's have wheat in them, so there's another thing off the list.

I do identify with the moms on the board. I knew for years something wasn't right, but finally, when she totally stopped growing and the pediatrician didn't seem to care, I started getting VERY FIRM about her care. Within 1-2 months she was diagnosed and within a week of the new diet, I noticed great changes.

I learned through this that doctors are fallible...they don't know everything, even the one pediatrician I loved the best (who later came to me and asked how he could have possibly done things different!). I learned that you go to the doctor who can help the most, even if your insurance is being difficult. I learned to be assertive without being bitchy . Now I'm learning to help a 10 year old how to cook lots of treats without wheat and to be confident in herself when sharing about this with others (no getting around it, everyone has to know that she has this! Birthday parties, camp, school cafeteria...it affects everything!).

As related to achalasia.....Learn to accept it, make the best of it and education others in the process (and ignore the crazy ones who question your doing "the Twist" to get your food down!).

Hope this helps - Cindi in PA