Son Has Celiac Gene

[kathy1]

well the Dr called today and said that my 8 yr old sons blood tests came back postive. He said he has the celiac gene but since he has absolutely no symptoms, he said he does not need to go gluten-free. He suggested taking calcium, vitamen D and iron. My son is healthy, in the 85th percentile height and weight. The Dr said that if his growth should slow, then he would take a sample from the intestines?? I am happy about this as the thought of working with a child to remain gluten-free is a difficult task at best, but I would do it if it were necessary.

What are you thoughts on this? have you heard of this option before and how does it fare? I don't want to find out years later that I attributed to making my son sick, but I dont want him to go gluten-free if it is not medically necessary either.

My husb was DX in mid Dec (blood test only) and he is asymptomatic also, but based on his age, 45 the Dr said it was best to go gluten-free.

Has anyone gotten a 2nd opinion on their test results before making life altertering changes?

Thanks for the guidance, I don't know where I would be with out everyone here!!!

[chrissy]

when you say his blood tests came back positive, are meaning positive that his antibodies are raised, or just positive that he has the gene? just having the gene itself does not mean he will get celiac.

christine

[Guest nini]

my opinion (and I stress ONLY MY OPINION) is that if he has the gene, this means he is predisposed to developing Celiac. Now, there are theories that there has to be a trigger to activate it, but I believe that there are smaller signals earlier on that the body cannot tolerate gluten. I think that ending up with Celiac is only part of the puzzle, having the gene means his body is NOT DESIGNED TO DIGEST GLUTEN, therefore, yes, you would be doing damage by continuing to feed him gluten. Look at it as a preventative measure. If you put him on the gluten free diet you would be helping to increase his chances that he wouldn't get intestinal lymphoma or a similiarly deadly condition...

It's actually easier to manage this diet in children. Sure they are tempted when they are with their friends, but you teach them how to manage it properly. If your husband has been dx'ed with this, then he would have a "buddy" to face this with. There are plenty of normal junk food snacks that kids can have, and plenty of gluten free alternatives to those things that aren't naturally gluten free. My daughter and I have been living this diet for almost 3 years now, it really isn't that difficult. It's not a death sentence to put him on the diet as a preventative measure, BUT it may be a death sentence if you continue to feed him gluten. Are you willing to take that chance?

I will reiterate that I believe that gluten is toxic for everybody, ESPECIALLY those that test positive for the genes that are recognized to be linked with Celiac.

[tarnalberry]

up to a third of the population has one of the genes, but that doesn't mean they all have problems with wheat. the general advice is, in the case of having the gene but neither symptoms, nor positive antibodies, nor positive biopsy, to retest regularly (every year or two, I believe) indefinitely, to catch it in case he does develop celiac. it's your call, though.

[Jnkmnky]

Going gluten free is not that difficult. I would advise you to go gluten free for your son asap. Teach him all there is to know about living gluten free. Begin the diet. What a great place to begin it from. Learning is a breeze when accidents don't cause severe cramping, diahrea, nausea, brain fog, joint pain, rashes, or expose you to any one of the horrifying auto immune diseases that have no "cure". I've seen a child with celiac disease in full swing. You do NOT want to have a child like that. You do not want to learn the diet with a child who is overcome with physical pain or house-bound by accidental ingestion of gluten. You want a handle on this now. He has the gene??? Good. Do the diet. Learn what the consequences are for those who do not adhere to the 100% gluten free diet when they have full-on celiac disease. Brainwash your son now while he's still able to accept this diet as a way of life. It is way more difficult to give up Dominoes, Burger king, Potato bread , Subway, and all the other wonderfully textured gluten containing foods, when you get older. My Celiac son couldn't care less what the smell of Dominoes signifies for others. He doesn't drool at the smell of oven-hot french bread. He has no hard-wired taste experiences of these delicious gluten foods. He thinks Kinnikinnick bread is the best. He drools when I mircowave a Kinnikinnick bagel and tell him I'll be buttering it for him in just a minute. I highlighted the words "for your son" because this is about making his future easier. It's way easier to do it now, than to wait until he's older. My entire family is gluten-free. Only one member has celiac disease. The foods aren't all that bad at all, but the knowledge of what you're missing can get to you pretty bad. I recommend the book Dangerous Grains. I think it's great. Link below.

[lgleeson]

well the Dr called today and said that my 8 yr old sons blood tests came back postive. He said he has the celiac gene but since he has absolutely no symptoms, he said he does not need to go gluten-free. He suggested taking calcium, vitamen D and iron. My son is healthy, in the 85th percentile height and weight. The Dr said that if his growth should slow, then he would take a sample from the intestines?? I am happy about this as the thought of working with a child to remain gluten-free is a difficult task at best, but I would do it if it were necessary.

What are you thoughts on this? have you heard of this option before and how does it fare? I don't want to find out years later that I attributed to making my son sick, but I dont want him to go gluten-free if it is not medically necessary either.

My husb was DX in mid Dec (blood test only) and he is asymptomatic also, but based on his age, 45 the Dr said it was best to go gluten-free.

Has anyone gotten a 2nd opinion on their test results before making life altertering changes?

Thanks for the guidance, I don't know where I would be with out everyone here!!!

[Rikki Tikki]

My mother was diagnosed with this a few months ago, me about 3 years ago. Based on that my brother had the blood test. He tested high positive but did not have any symptoms. He then had the biopsy, his villi was flattened and the scan on his bones showed he had damage. Based on this and what I have learned the last 3 years I would have your son go gluten free.

Again, it's only my opinion

[kathy1]

when you say his blood tests came back positive, are meaning positive that his antibodies are raised, or just positive that he has the gene? just having the gene itself does not mean he will get celiac.

christine

I wish I had been home to get the call, but my husband talked the Dr and (god love him) he does not think to ask all the questions I would have wanted to ask. I have left a message for the Dr to call me back so I can get more information. I am not sure if the Dr stated antibodies or the gene were present or both.

We both really like this Dr. he is very thorough and seems to be on top of things.

"just having the gene itself does not mean he will get celiac".

If he has just the gene, then I should be ok with the wait and see approach??

I can't wait for the Dr to call back next week!!!!

[Rikki Tikki]

Jnkmnky:

The thought of Dominos may not make your son's mouth water, but your talking about it just made mine!

[krisb]

I will reiterate that I believe that gluten is toxic for everybody, ESPECIALLY those that test positive for the genes that are recognized to be linked with Celiac.

I completly agrea with this. Even if someone doesn't have full blown celiac I have learned that gluten is bad for many people. Plus I read an article that it's important to recognize a predisposition to celiac before the villi are gone. You want to catch it before that happens. People are so afraid of trying the diet. there are too many negative comments about it. So many people try the diet just for the health benefits and realize they feel better anyway. Little symptoms that people live with there whole life seem to disapear.

The diet isn't hard at all once you get the hang of it. If there is something my kids want to eat I just make it in the gluten free form. You don't even know the difference. The only hard thing is bread but people do live on an atkins diet.