Guest guest Posted March 10, 2006 Report Share Posted March 10, 2006 the receptionist is a little off when she told you that if your daughter does not have the gene than you don't have to worry about the rest of the kids. it's if you and your husband don't have the gene. it seems pretty obvious that your daughter is gluten intolerant, celiac or not. one advantage you would have if knew whether or not she has the gene----if she doesn't, then you know that her intestine isn't being damaged when she gets sick from eating gluten.----somebody correct me if i am wrong!! christine Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2006 Report Share Posted March 10, 2006 We are confused, too. Pediatrician diagnosed our 10 year old son with Celiac in 01/2006 then we just saw the GI and he said he refuses to diagnose him with CD without further testing. I feel our doctor is very generous stating he will not diagnose him because it is a entire life change & in the future he could possibly be turned down for medical insurance because he will have a pre-existing condtion. We tried to " challenge " our son & he became ill - maybe celiac & definitely a virus so the GI said to hold off & try again in Summer. (he has missed too much school recently - we've been GGF since mid Jan & have CC him a few times by accident!) All I really know is that we are a GF household now & each of us feels so very much better. Weight loss, adult acne dissappearing, no bloating, less constipation, much less big D, much more energy & the list goes on & on. We have come to the realization that diagnoses doesn't matter to us because we all see & feel the difference every day. I can only speak for us. Good luck, I truly feel for you!! > > the receptionist is a little off when she told you that if your > daughter does not have the gene than you don't have to worry about the > rest of the kids. it's if you and your husband don't have the gene. it > seems pretty obvious that your daughter is gluten intolerant, celiac > or not. one advantage you would have if knew whether or not she has > the gene----if she doesn't, then you know that her intestine isn't > being damaged when she gets sick from eating gluten.----somebody > correct me if i am wrong!! > christine > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2006 Report Share Posted March 10, 2006 I'm afraid you are wrong. We just went through gene testing with Prometheus Labs and I will try to summarize what I learned doing that. There are two genes that are strongly connected with celiac disease- but loads of people have these genes and are not celiac. Some scientists think they may have potential to be celiac if the right trigger event occurs. Some celiacs have neither of the two genes commonly connected with celiac, but they definitely suffer damage to the gut when eating gluten - so researchers are looking to see what other genes carry the potential to cause celiac, as there may be several more that have not yet been identified. Prometheus told me that having the gene for celiac suggests the potential or probability to be celiac - it does not diagnose anything. Maureen p.s. and I really hope I quoted them right! > > the receptionist is a little off when she told you that if your > daughter does not have the gene than you don't have to worry about the > rest of the kids. it's if you and your husband don't have the gene. it > seems pretty obvious that your daughter is gluten intolerant, celiac > or not. one advantage you would have if knew whether or not she has > the gene----if she doesn't, then you know that her intestine isn't > being damaged when she gets sick from eating gluten.----somebody > correct me if i am wrong!! > christine > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2006 Report Share Posted March 10, 2006 > She said they will probably gene test my daughter before they recommend > anything thing else. In talking to my husband we are not excited about the > idea of a gluten challenge and feel that with what test results we have if > she test positive for the genes that are responsible for Celiac we should > just go on as we have and get a game plan for the rest of the family. > However if she test negative for the genes responsible for Celiac then > possibly doing a gluten challenge and following it up with a full diagnosis. > Without the genes the receptionist said she could still have it but we > wouldn't have to worry about the other kids unless they show symptoms. > > > I am pretty confused and would like to know how others deal with this. > > From the medical world's point of view, my son's diagnosis is " tentative " at best - never was biopsied. From the life perspective, his health showed huge, radical improvement with the GF diet, and I am celiac, so . But in the middle of the night, I have wondered many times if he is *really* celiac, you know, Mom Nighttime Thoughts. Last fall at a celiac conference, I was lucky enough to talk with Dr. Murray of the Mayo Clinic for a very brief consult on my son. We talked about his response to the diet (vast improvement), the fact that he does react to gluten, and the risks of a gluten challenge. Dr. Murray said something that really struck me: he doesn't like to do a gluten challenge during periods of rapid brain or body developement for fear of compromising the development. So, I asked my husband, " Is the risk of a gluten challenge at this stage worth it for a confirmed diagnosis? " My husband looked at me like I had lost my mind. " He's healthy gluten-free, he gets sick on gluten. What's your question again? " No gluten challenges happening here. However, we did do gene testing - he's positive for the gene most commonly associated with celiac, and that was enough to convince the pedi that he really is celiac. Maureen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2006 Report Share Posted March 10, 2006 > > I'm afraid you are wrong. We just went through gene testing with > Prometheus Labs and I will try to summarize what I learned doing that. > > i know that a few people have celiac without having either of the 2 genes, but isn't there also a non-celiac gluten intolerance that causes the same symptoms, but doesn't cause intestinal damage? what kind of results did you get from your promethius tests? i just got the report on my son today-----but i haven't seen the test results myself, yet. were you able to get any insurance coverage? ours won't cover the test because the fact that he has 3 sisters with celiac and he is IgA deficient wasn't a good enough reason, in their opinion, to warrant the testing.-----the insurance just suggested we should put him gluten free-----can you imagine trying to get a 17 year old boy (who works at a pizza parlor and has no symptoms) to go gluten free because the insurance company says to??!! christine Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2006 Report Share Posted March 10, 2006 > > i know that a few people have celiac without having either of the > 2 genes, but isn't there also a non-celiac gluten intolerance that > causes the same symptoms, but doesn't cause intestinal damage? > > christine I have heard such a condition mentioned by 2 doctors who knew very little about celiac disease, so I'm not sure if they knew what they were talking about. I have never heard such a condtition mentioned by a doctor knowledgable in celiac - 'fraid that neither proves or disproves anything! Maybe it is possible to be severely gluten intolerant but not celiac, but it certtainly is possible to not have either of the most common genes and be celiac. Maureen p.s. about the insurance: we haven't gotten a bill for the testing yet from our medical group, so I have no idea what the insurance company said about it. I didn't ask them in advance and give them the chance to veto it. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 2006 Report Share Posted March 11, 2006 > > p.s. about the insurance: we haven't gotten a bill for the testing yet > from our medical group, so I have no idea what the insurance company > said about it. I didn't ask them in advance and give them the chance > to veto it. i am putting my family in the celiac study that is being done at the university of california-----i took my son in to have his blood work done in the morning----and in the afternoon the gal from the university e-mails me and tells me they will do antibody testing AND gene testing on the whole family.......if i had just waited one more day.........actually, i wanted to know his status and would have had a hard time waiting several months to know. christine > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2006 Report Share Posted March 13, 2006 I have never heard that any of us might have the possibility of being turned down for medical insurance due to a " pre-existing condition. " I have been diagnosed now for 24 yrs and have never come across that and have switched insurance companies numerous times. Its not a death causing disease that is going to require the insurance company to dish out tons of money for your medical bills. In actuality, they would be paying less if you are diagnosed because once you are following the diet the symptoms go away along with all the doctor appts! > > > > the receptionist is a little off when she told you that if your > > daughter does not have the gene than you don't have to worry about > the > > rest of the kids. it's if you and your husband don't have the gene. > it > > seems pretty obvious that your daughter is gluten intolerant, celiac > > or not. one advantage you would have if knew whether or not she has > > the gene----if she doesn't, then you know that her intestine isn't > > being damaged when she gets sick from eating gluten.----somebody > > correct me if i am wrong!! > > christine > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2006 Report Share Posted March 13, 2006 It depends on if you have to buy your own policy. Insurance companies can be a pretty stinky thing about pre-existing stuff. I am lucky that my husband's company carries our insurance because I am self-employed and would have trouble with my coverage because of all of my health problems. Rhiannon > > > > > > the receptionist is a little off when she told you that if your > > > daughter does not have the gene than you don't have to worry > about > > the > > > rest of the kids. it's if you and your husband don't have the > gene. > > it > > > seems pretty obvious that your daughter is gluten intolerant, > celiac > > > or not. one advantage you would have if knew whether or not she > has > > > the gene----if she doesn't, then you know that her intestine > isn't > > > being damaged when she gets sick from eating gluten.---- somebody > > > correct me if i am wrong!! > > > christine > > > > > > Quote Link to comment Share on other sites More sharing options...
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