Genes In The Family

[cnosmom]

Hi,

I'm glad for this forum to ask the many questions swirling around in my head.

I had sent a sample to Enterolab for my 3.5 daughter last month. It came back that she has active gluten intolerance and 2 genes for gluten intolerance (one from me and one from my husband). She also has been off dairy since last year...but the test showed no intolerance to dairy. She's been on the gluten-free diet since Nov 20.

I also have an almost 18 mo son who I think has the same intolerance to gluten...no lab tests, just my observations (with elimination and addition of gluten).

I had a celiac panel done over the summer that came back negative. I had some thyroid nodule, loss of weight (97 lbs and 5'4"), and heartburn and my sister has diagnosed celiac disease...so I requested the celiac blood test. The dr called me in August and said the bloodwork was neg so I had nothing to worry about regarding celiac but she had no idea about my weight issue. That was the last I went to the dr. I started a gluten free diet in mid sept. Also, my 18 mo son first was just wheat free since maybe april or may and then gluten free in sept. He was failure to thrive and ever since I messed with his diet (and mine--i'm nursing him) he started gaining weight. As for me I am still the same weight, but my heartburn is gone (but I also took meds for 2-3 months)

My husband is totally not on-board w/me putting the 18 mo on the diet when we have no proof that he needs to be on it. So I want some proof for my son and also want to double check myself. I think my husband needs the gene test too? So what does anyone reccommend for this situation? I was just going to have the gene testing done for me and my son thru Enterolab but then I saw some article that some labs don't do a full spectrum of gene testing. Should I request something directly from my son's dr (we are going next week) or what? I don't mind paying out of pocket if I get some piece of mind that they are accurate results but if I can get the same tests thru insurance coverage I would rather do that.

Thanks in advance!!

Alexandra

[lizard00]

I had my test done through Prometheus, and insurance is supposed to cover it. I'm still working on that one though...

It's a blood test, which may or may not be the way you want to go with your 18mo. Enterolab is just a saliva swab, as you know, but they only test the alpha part of the chain. So you may still not get the answer you're looking for.

Even with the genetic test, it will only show that the baby has the genes for it, not that he has or is going to have it. If he was FTT, and is thriving with the removal of gluten, that means a whole lot more than a genetic test, IMO.

[sbj]

I'll second what lizard says above. No genetic test by anyone of any type is going to tell you if your child, you, or your husband has celiac disease. A lot of people seem to be getting the idea that Enterolab can 'diagnose' celiac disease - which they cannot.

On the other hand, I hate to read about a failure to thrive with your 18 mo - time to get to a doctor? Not necessarily for celiac testing but to check everything out? You mentioned that he hadn't had any lab tests. Shouldn't he be undergoing some sort of lab tests for FTT? I wouldn't depend on your own self-diagnosis without any testing!

[Mother of Jibril]

I agree that more testing is in order. Problems like vitamin deficiencies and autoimmune disorders can affect a child's intellectual development.

Also... have you laid out these ideas for your husband and asked what kind of evidence would convince him that your son has a gluten problem?

My husband doesn't question the fact that my son is intolerant to casein and corn because he can see the eczema break out on his face if he has the tiniest bit. I have him off gluten too. My three-year-old daughter is different story. I know for a fact that she has at least one gluten-sensitive gene. We cut way back on her gluten intake because it was making her constipated. She also has problems with pica (eating chalk, ice, paper, playdoh, etc...) that have improved on the gluten-lite diet.

My husband was not convinced at ALL by the genetic test! I also pointed out that our daughter had eczema as a baby, just not quite as bad as her brother... but his perspective is that "our daughter is perfectly healthy... why change anything?" And who knows. You can have the gene without getting celiac disease. But... I'm certainly on the lookout for symptoms.

[cnosmom]

Hi,

I guess I was trying to be brief in my post so it came off like I don't take my child to the dr. It's actually quite the opposite. A bit more info....this time last year he went to his 6 month check up and found out that he had lost 7 oz....so then we had to go back for a wt check at 7 months....he gained an oz...so then we were at the drs every 2 weeks for a wt check until he was 11 mo. He was stuck at 14 lbs 2 oz give or take an ounce for nearly 6 months. IN between that time he had a few blood draws --it's been a while--I think they checked kidney function...also we were sent to a ped genetics specialist to rule out cystic fibrosis, genetic disorders, metabolic disorders. By the time we got back the last specialists results he had gained 1 pound (finally) at his 12 month old dr visit. Dr was satisfied that he was starting to gain wt so no more tests were run. I had elim wheat a month prior to this last lab test. I didn't tell the dr b/c I had asked about food reactions and she didn't think that was anything to explore--so I explored it myself....he wasn't interested in too much food at the point anyway. At 15 months he was 21 lbs and according to our home scale he may be 23+ lbs now!

So anyhow, when i got my daugther's enterolab results it said that she was gluten intolerant and she had 2 genes that predispose her to gluten sensitivity and the resultant immunologic gluten sensitivity would be more severe. The suggestion from the lab report was to start a gluten free diet for life. I guess I thought it would be useful to know that there were some genes that could cause problems in the future and be on the look out for those problems or just adopt the gluten free diet as a precaution (esp since my 3.5 yr old is anyhow).

Well I hope that clarifies some stuff. I welcome more comments.

Thanks

[lizard00]

I didn't get the feeling that you were opposed to doctors at all!!

My question was do you think that presenting your husband with a genetic predisposition will be more convincing to him than his going from FTT to thriving with the removal of gluten? Because to me, I would more convinced by that clear piece of evidence.

[cnosmom]

Right now he doesn't think that the removal of gluten caused the weight gain....he thinks there are too many variables and it could be a coincidence. I suppose I could give him gluten again....but I don't feel that is the right decision. It seems he would be interested in something more scientific.

I didn't get the feeling that you were opposed to doctors at all!!

My question was do you think that presenting your husband with a genetic predisposition will be more convincing to him than his going from FTT to thriving with the removal of gluten? Because to me, I would more convinced by that clear piece of evidence.

[happygirl]

Keep in mind that everyone except a small percentage of people, according to this lab, have "gluten sensitive" genes. At this time, there is not as much scientific evidence to support these claims.

[cnosmom]

Keep in mind that everyone except a small percentage of people, according to this lab, have "gluten sensitive" genes. At this time, there is not as much scientific evidence to support these claims.

Thanks for that bit of info. What about the active gluten sensitivity that they found? Do most people come back with that too? We are 17-18 days into a gluten-free diet for my 3.5 yo, she was exp loose stools for months....she started to have some more solid ones in the last week....but then she goes back to some loose again...I know things take time but now I'm concerned I got unscientific info. The only reason i turned to an online lab b/c I felt like I was getting no where with the drs.

thanks