Our Family

Our Family
"These are the children God has graciously given to me. (us)" - Genesis 33:5

Monday, November 20, 2006

Celiac Testing

Recently, a number of people have asked us what kind of testing we've had done to ourselves for Celiac Disease and why. So, here it is:

Symptoms: Unexplained liver function issues, high blood pressure, rising cholesterol, inability to lose weight and/or keep it off, and of course his son tested positive for the disease.
Tests: Antibody test...negative for Celiac, endoscopy...negative for Celiac, hasn't had the DNA test done yet.
Results: Decided to go gluten free because it's easier to deal with in the house for meal time, and with a picky 4 yr. old. Now, he has found that if he does consume gluten, within 24-48 hours he will have moderate to severe cramping in his stomach and intestines, headache, and generally won't feel well.

Symptoms: Depression, episodes of unexplained constipation/diarrhea, headaches and migraines, allergies, and my son tested positive for the disease.
Tests: Antibody test...negative for Celiac, DNA test...positive I have DQ8, haven't had an endoscopy done because of pregnancy. Probably won't have it done because I have been gluten free since May of this year.
Results: Decided to go gluten free for the same reasons as my husband and have also found that when I consume gluten I will also have moderate to severe pain in my abdomen followed by very loose stools. Usually mine will happen within 24 hours though.

Symptoms: Unable to gain weight, wouldn't eat, complained of stomach pain, severe constipation, had the "celiac body" (big belly, no bum), started to lose weight prior to diagnosis.
Tests: Antibody test...borderline for Celiac. (We later found out that he should have been confirmed at that test because the numbers were considered at the low end of the positive for the disease) DNA test...positive he has DQ8, endoscopy...positive for Celiac.
Results: He has been gluten free since his diagnosis on February 3rd of this year. We are just beginning to see changes in his health. Still very slow weight gain, however he finally has an appetite. He's just a very active preschooler who burns off a lot of what he consumes. Due to the severe lack of nutrition for a good portion of his developmental years however, he is having some developmental delays that are now being found in many children his age who aren't diagnosed early enough...(say 12-18 months of age).

Symptoms: constant irritability after eating, unable to be content after a meal, slow weight gain.
Tests: DNA test...negative for the gene related to Celiac.
Results: Because of Ethan's history, we (the doctors as well as Mike and I), have decided it is in Joshua's best interests to keep him gluten free until he is 6 or 7 years old, due to the developmental milestones that children go through at these young ages. At that time we can then decide to put him on gluten for 3-4 months and see if he has any reactions as well as follow up with the rest of the tests.

Baby #3:
We'll follow the same with this child and any other children we may have as we are currently doing with Joshua.

Fortunately when it comes to our children, we have some of the best docs taking care of them. They are willing to do tests, and go the extra mile to find out what's wrong and make it better. Unfortunately, we've found, that when it comes to adults, docs aren't quite as...well...willing to test for, never mind diagnose this disease. From what I understand from other adults who are fortunate enough to find a good doc, things are changing. We just aren't so sure that we would be willing to put ourselves through a "gluten challenge" now just to get another test done. That would consist of consuming gluten for about 8-12 weeks! We already know what are bodies feel like after one meal of gluten, never mind a couple of months!

So, there it is.

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