Children's Results Are In

[lisa922]

Hi, All - I wanted to post my children's results. I used Prometheus Labs and did the Celia Plus panel. That does the Celiac serology and then if that is negative, they follow-up and do the gene testing for HLADQ2 and HLADQ8. Both children were negative on the serology - Yea!! My 10 yr-old tested positive for HLADQ2, but negative for the other gene and my 6 yr-old tested negative for both genes. The weird thing is the younger one is the shorter child and has tummy aches and burps a lot. We thought for sure she would have been the one to have some sort of a positive result. I need to find out what kind of follow-up I'll need to do on my 10 yr old. I think they follow-up with periodic serology re-tests, but I'm not sure. Thanks for all the support here. I love this site!

Lisa in Wilkesboro, NC

[gf4life]

Hi Lisa,

Keep in mind that there are other forms of gluten intolerance than Celiac. We have two of each in our family. My 8 year old is not Celiac(does not have either gene), but is gluten intolerant and he had the most damage in his intestines. He sees about 5 different specialists for all his health problems and his immunologist says he does not want to say that he is not Celiac, since they are not 100% sure they have isolated all the genes. Especially since my son has responded do well to the diet. He has gained over 5 lbs and 3/4 of an inch in the first two months on the diet. He has had fewer stomachaches and fewer symptoms overall. His diarrhea is gone.

I'm just telling this so that if the doctors cannot find anything else wrong with your younger daughter, that you can consider trying the gluten-free diet to see if it helps. There are other genes that are not considered Celiac that do cause gluten intolerance. She might have that.

Just curious, are you going to put your older child on the diet as a preventive measure, or wait until the blood tests are positive?

God bless,

Mariann

[lisa922]

Mariann -

Thank you very much for your response!! Since I posted this, I have been reading a lot more on this board and the delphi forums one - I think maybe I have read about your situation on one of the boards. It is definitely making me curious about things. I was actually logging on to post a question about the DQ1 gene when I saw your response. I am curious to know how much of the general population has the DQ1 and what other things it is associated with. I have heard that about 20-30% of the gen pop have DQ2 and of those, many do not develop Celiac. I was thinking of having the Enterolab gene test done to capture the DQ1, but didn't feel it would be necessary if like 80% of the population has that gene, make sense? I have received a lot of advice to not put my older daughter gluten-free since there is a high possibility she will never develop Celiac. At first, I thought if either even had the gene I would have them go gluten-free, but the overwhelming response is not to do it just based on the gene. With my younger one, after another tummy ache issue last night, I am taking her to the doctor's today and am going to ask about testing for milk intolerance. She had trouble with milk when she was much younger and I don't know if that is what is triggering the tummy aches or not, but I have a suspicion that is what it is. My concern with making everyone go gluten-free would be that then I may be making them extremely sensitive to all gluten unnecessarily. I would hate to put this on them if they don't need it and then cause them to react every time they eat gluten. Let me know what you think

Lisa in Wilkesboro, NC

[gf4life]

My concern with making everyone go gluten-free would be that then I may be making them extremely sensitive to all gluten unnecessarily. I would hate to put this on them if they don't need it and then cause them to react every time they eat gluten.

Hi Lisa,

You certainly do not have to put the kids on the gluten-free diet if they are not having a problem with gluten. It is 100% your choice. I did not put my kids on the diet until I knew for sure that they were having a reaction to gluten. But you would not be causing your kids to become sensitive to gluten by taking them off gluten. They would never have a reaction to it, unless they were intolerant to gluten (or allergic to wheat). Part of the reason that 80% of the population have the gene that causes gluten intolerance is because we were never meant to be eating gluten grains. One book I highly recommend is Dangerous Grains by James Braly and Ron Hoggan. It goes into detail why gluten grains are not healthy for us and all of the health problems they are connected to, not just Celiac Disease.

You may be right about your daughter and the milk intolerance. My oldest boy is gluten intolerant, but he is extremely sensitive to milk. Gluten causes him to have behavior problems, but the dairy is what gives him the GI problems. Taking him off both has made a drastic improvement in his health and behavior.

I hope you are able to findout what is bothering your younger daughter.

God bless,

Mariann