Getting Tests For My Family In January, Need Advice.

[wishing4health]

Hi,

I am new to this forum, but need advice from people who have been through this.

I have had problems most all of my life, the worst was in high school. After much research now that I am a wife and mother, I believe not only have I suffered from celiac all my life, but my husband as well. Also my two boys (my eldest is 3years old and my youngest is 20 mos.) have shown symptoms. I have been aware of this for about 6 months now but due to insurance issues I haven't been able to do much but go gluten free, which has been such a challenge for us. I need to know how to approach a doctor about my concerns about being celiac, and about my children? I have heard that testing to young can cause a false negative? Also since we have been off of gluten how many days before testing should we go back on so the tests will be more accurate? What questions should I bring up with a doctor about this? I just don't want my children to suffer the way I have so I want to do this right.

Thank you all.

[sb2178]

The most conservative gluten challenge should be 3 months, with 3-4 slices bread per day. The minimum should be for 6 weeks. There are docs who will diagnose based on symptoms, resolution with diet, return on symptoms on diet, and possibly genetics.

Kids have slightly difference immune systems, so the antibody testing can be more challenging in blurry cases, especially with infants/toddlers. A good diagnostician would catch it, but perhaps not your average pediatrician. I think a lot of people here use pediatric GIs or celiac centers. Finding someone may easiest by searching the board here or visiting a local support group and asking around.

I'd approach the dr by saying that you've had these health problems, they resolved on the diet, but you are concerned about celiac disease because you know that it can lead to increased risk of diseases like cancer, osteoporosis, stunted growth, etc and you feel that you/kids need to be carefully evaluated in order to know whether you need to follow a strict lifelong gluten-free diet. Once you have one family member diagnosed, be sure to mention it to any additional clinicians. Be sure to investigate nutrient deficiencies too, which may have resolved while you were gluten-free but could be brought on by the challenge.