New With A Gazillion Questions

[pearcenalaska]

Hi Kerasita, I haven't been on for awhile so sorry for not replying! I am seeing my doctor this coming Friday to ask for the genetic blood test. I just had the celiac panel done and various other allergies tested. It all came back negative!! I am not that surprised. For one, I was worried about other food allergies and thankfully I don't have those. I quit eating gluten and dairy this last summer because it was tearing me up! I KNOW that I at least have a gluten and dairy intolerance. I am about 99.9% positive that my son does too. He went back on a gluten diet about 3 wks ago and I have noticed that he is bloated! My husband thinks I'm crazy and my son won't tell me anything. I can tell he isn't feeling as well but he won't admit it. It is so hard to make him eat this diet without "proof". I had him tested for the celiac panel too but we haven't heard anything. I think it came back negative too. He has also been on a mostly gluten free diet for about 4 months.

I just want to know if I have the genetic marker or not. If not then I know that I am gluten and dairy intolerant and will deal with that. If I am then I may consider doing a gluten challenge but I really don't want to! If I have the genetic marker then I will have each of my kids tested as well. It is such a frustrating ordeal but I am learning to live with it. I was having a lot of problems about a month ago and I now realize that I was being contaminated unknowingly. I have been SO careful and am feeling much better!

[Kerasita]

Thanks Shannon

I had my kids tested last week (blood) and will probably get the results this Tuesday coming I think. I'm terrified Both that it may be positive and also that it may be negative (but falsely negative if you know what I mean). I need proof too. I didn't know there was a genetic blood test? I thought they only tested for antibodies. I was thinking I'd have to send some spit off to Enterolab to find out if I or my kids have the genetic marker or not.

This IS SO confusing and stressful. If there was just a definitive test for this, it would be a good start. So how do you know you definitely don't have food allergies? Did you do skin tests or something? I wonder about food allergies too because most gluten intolerant people end up with other intolerances it seems.

Thanks for replying

Hi Kerasita, I haven't been on for awhile so sorry for not replying! I am seeing my doctor this coming Friday to ask for the genetic blood test. I just had the celiac panel done and various other allergies tested. It all came back negative!! I am not that surprised. For one, I was worried about other food allergies and thankfully I don't have those. I quit eating gluten and dairy this last summer because it was tearing me up! I KNOW that I at least have a gluten and dairy intolerance. I am about 99.9% positive that my son does too. He went back on a gluten diet about 3 wks ago and I have noticed that he is bloated! My husband thinks I'm crazy and my son won't tell me anything. I can tell he isn't feeling as well but he won't admit it. It is so hard to make him eat this diet without "proof". I had him tested for the celiac panel too but we haven't heard anything. I think it came back negative too. He has also been on a mostly gluten free diet for about 4 months.

I just want to know if I have the genetic marker or not. If not then I know that I am gluten and dairy intolerant and will deal with that. If I am then I may consider doing a gluten challenge but I really don't want to! If I have the genetic marker then I will have each of my kids tested as well. It is such a frustrating ordeal but I am learning to live with it. I was having a lot of problems about a month ago and I now realize that I was being contaminated unknowingly. I have been SO careful and am feeling much better!

[nora-n]

Most labs have a genetic test for HLA DQ2 and HLA DQ8 and nowadays they also test for the alpha chain to detect those with half a gene, or the trans-DQ2,5.

[pearcenalaska]

I was blood tested for the major allergens (soy, peanut,dairy, wheat (haha) and eggs). They came back negative so I am going to put that to rest for now. I was concerned for the same reason. I just figure I can only worry about so many things at once. My latest frustration is my 8 1/2 year old son. I "allowed" him to go back on a gluten diet for about a month now and he is having the same skin problems as before (not the sores that are associated with celiac). His skin was one of the first things we noticed because his skin is like sandpaper all over his body. Each pore is raised like a goose bump. Also he has roundish red sores. The doctor said it was eczema. Supposedly, it is very common in people of fair skinned heritage. I didn't believe it for a minute! Also, he has actually gained weight in his stomach. He has a very slight build and when he was on a gluten free diet he had no belly at all! It is so hard to convince a child that even though we don't have "proof" he needs to be different and eat differently. He said tonight that he wanted to go back on a gluten free diet starting Friday and Saturday. Now I'm back to packing his lunch every day and worrying about everything he puts in his mouth! It is worth it if he will be healthy.

It is a constant frustration but it is nice to be on here with others who are in the same boat or have been there.