Need Some Advice About Having Children Tested

[CarolinaKip]

I'm days away from my one year of being gluten-free. I have learned a lot here in the past year,thank you all! My daughter just announced she wants to go gluten-free to help me. I have not had my children tested yet. Their doctor thought we should wait for signs, I disagree. Both of my children may already have signs. My daughter has headaches and mood swings. My son has had tummy issues in the past or will eat a meal and say "I feel like crap" How he discribes this feeling is different than I had. He also has attention problems. If you're a celiac mom or dad, when did you have your children tested? If it was negative, do you plan to have them re-tested? My son is "running" from being tested, but I feel it's time. My children are 14 and 18.

[srall]

Hmmm. What do you do if they test normal? My daughter was 7 and tested normal. I tested normal too. I can't express how sick my daughter was before going gluten free. She was falling apart, had chronic D, rashes, full blown anxiety attacks, canker sores, sunken eyes, temper tantrums...just to name a few. Once we went gluten/dairy/corn free everything turned around. I'm glad I didn't rely on a test to determine whether we gave gluten free a go or not.

My brother tested normal for celiac and the GI told him "Well, it's not gluten so you don't need to cut that out." In the meantime, he has depression, stomach issues, pain and was just diagnosed with diabetes at age 39 (40 in a few weeks)...I just think the real test is elimination diets and food journals. I also don't see what the big deal is with just doing a simple blood test. It's a jumping off point anyway.

[kareng]

My boys are 18 & 15. I had thier blood test done even tho they didn't have any symptoms. This is standard medical procedure with Celiacs (first degree relatives whcih would include your siblings and parents). The pediatrician wants to blood test the 15 year old every year. The 18 year old probably won't until he has symptoms. I did not do the genetic testing because I did not want it on thier medical record. I do not want it to exclude them from a career or insurance.

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[Jungle]

I just had my two older girls tested. (6 and 8) As I didn't have symptoms, and I tested positive, I don't think whether they have signs or not is a reason to be tested or not. I think it is important to know. Not knowing even if you don't have outward symptoms can still cause problems.

I am waiting to test my 2 year old. As her growth is fine and she has no signs I don't see any point in stressing her out for a blood test. Either when she is old enough to understand what is happening or if both my big girls test positive I'll be tempted to make the whole house gluten-free so I'd need to test my youngest before then.

[CarolinaKip]

Thanks for the replies! I'm going to have them both tested with the full celiac blood panel. I don't feel the need to do the gene test. Only my sister who has lupus was tested for Celiac. My other siblings don't feel the need to, they say they have no symptoms. My parents are both gone, I wish I could ask more questions to see which side of the family this came from. However, I believe it was my mother.

[Roda]

Had both of my boys blood tested a month after my diagnosis. The youngest was almost 4 and the oldest was 7. My oldest one was retested a year later at age 8 and they were both retested in 2010 with youngest almost 6 and oldest 9. First go around for both they were negative, however the whole panel wasn't done only the ttg. Didn't suspect any issues at that time with either. Had suspisions with the older one so hence the retesting a year later, again all negative on a full panel. Last fall I started having doubts with youngest one and still oldest one so had them both retested. Younger one had one of the tests come back positive the Iga ttg. We decided to forgo the GI consult and scope and put him gluten free (hubby later regretted not doing this). He was strictly gluten free for 4.5 months when we did a gluten challenge just in March. It didn't last only 3 days when my husband called it quits. It was apparent that it affected him within 12 hours. We jokingly said we were going to call in a priest to perform an exorcisim because he was a totally different kid back on gluten. Fortunately, the doubts my husband had before are gone now. I feel I can assume he has celiac with the positive Iga ttg and his response to the challenge. Now the oldest one still tested negative on all tests. The doctor (they both see an allergist) feels that he is either a sero negative celiac or gluten intolerent and feels he needs to be gluten free based on past history and his brother and I having celiac. My husband and I are still in discussion on the path to take with him. He is still currently consuming gluten until we decide what we are going to do in regards to further testing. I think regardless, if we can get him a scope, I'm going to trial him gluten free. Just have to decide if we are going that route first before taking him off gluten.

[Karl Otto]

Celiac Disease Panel Blood Test, ask you doctor for this lab test. It detects the genes the labs are looking for in diagnosing Celiac Disease without going into the biopsy thing.

[Jenn624]

My 13 year old decided on his own to go off all gluten and it's been amazing! He focuses better in school and feels better. A few weeks ago he tried eating gluten and was absolutely miserable. He will never eat any again!

[kareng]

Celiac Disease Panel Blood Test, ask you doctor for this lab test. It detects the genes the labs are looking for in diagnosing Celiac Disease without going into the biopsy thing.

There is a Celiac blood panel. These are to detect antibodies to gluten. There is a separate gene test. Just because you have the gene, doesn't mean you have active Celiac.

[Darn210]

We were all tested (per doc's recommendation) within a few months of my daughter's diagnosis. Son even did a gluten free trial ("just in case") because test was negative and he is on the small side. Doctor just recommended retesting if any symptoms showed up.

[Karl Otto]

My youngest son Ishmael had been having symptoms for a long time now. He had been seen at the Children's hospital in Denver for many visits. His old doctor recommended he get the following test done. Insulin Levels A1C Test, Metabolic Profile Test, Celiac Disease Panel Test, and yes a gene test as well. Based on his weight size and symptoms both the older doctor and his current doctor diagnosed him with Celiac Disease in addition to his Autism, Mild Retardation. I to have the disease and was diagnosed with it. The doctor feel he and his brothers have inherited it from me. So, the Celiac Disease Panel test has allot to do with the diagnoses of the disease.